tag:blogger.com,1999:blog-39573420428771168052024-03-05T06:37:08.186-08:00finding my little girl lostfollowing God's lead in healing our daughter (from PANDAS and Lyme) and bringing her back to usmamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-3957342042877116805.post-35582974735728022242014-06-12T08:06:00.001-07:002014-06-12T08:06:56.737-07:00PANDAS Deja VuHello, again. Haven't been posting, but doesn't mean I haven't been trying to find answers. Sounds silly, but every once in a while, if things are a little better, I think my mind tries to pretend that we have a normal life. That maybe I made this all up, imagined it, dreamed it, but it wasn't really that bad. And I will take a break and believe that things are livable. But then I'll snap out of it, seeing the face of mental illness, but not really mental illness, living in my house and calling me names.<br />
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A couple of years ago, I wrote a post called "I'm the Mom in the Minivan Next to Yours", and I spoke of the symptoms and the things that go on in our life; I wrote at the end that I had to accept that my daughter had early-onset bipolar disorder. I think I was lying to myself. I was tired. I wanted to have a handle on this. There is a way to treat and live with bipolar, no matter how unacceptable that diagnosis. And I am not suggesting that that would be an easy life.</div>
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But here we are two years later, and my sweet girl is still not well. Four years of psychiatric medications (usually at least two at a time) did nothing good. Sometimes it took the edge off a bit, but then that effect would wear off, and we'd be off on another wild goose chase. </div>
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If I never accepted it before, I do now. My daughter has PANDAS. And PANDAS (or PANS) can be caused by a whole host of illnesses. Although she has shown evidence of HHV6, Mycoplasma and Lyme, I do not believe those are in play at this point. </div>
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We have treated aggressively with antiparasitics, antivirals, antifungals, antimalarials, antibiotics. We have used traditional medicine as well as herbals, and we have treated, treated, treated, and my daughter is still.....not fully here. In fact, there have only been a handful of times when I have seen any med or supplement have a real effect on her.</div>
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Like when, recently weaned off of Lithium and Abilify, and after several excellent days, she experienced a dramatic and sudden episode of OCD (siblings had strep). Then we saw that azithromycin kicked the OCD. And Advil. Advil has cooled her. And charcoal has cooled her. Not permanently, but enough to get somewhere or just take a breath.</div>
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Well, and there was that other time when we did the yeast detox diet with no grains or anything inflammatory, vitamin C nystatin, diflucan and 2 Tbsp. fish oil twice a day. The fish oil was anti-inflammatory, too, and we saw a big gain then. (As in, "Mom, I think my OCD is gone!" after two weeks.)</div>
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So if I didn't know that my daughter had PANDAS, I have received some hints about it recently through a green-eyed, curly-haired little four year old that I call my youngest daughter. She is beautiful and such a reminder of who my sweet girl was at that age. Between this girlie and her brother, I frequently feel warm hands in mine....warmer than usual. I can see that they seem ill, but they do not register a fever. </div>
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A couple of weeks ago, this happened with my four year old again, but it came with sudden fear to go into another room to get something or go to the bathroom alone. Extreme fear, crying if she found herself alone in a room for a moment. She said she was afraid, and when I asked her what she was afraid, she said, "I can't explain it." She became extremely whiny and clingy. To someone who doesn't know my children well, it might look like she didn't feel well and was whiny because of that. But to this mom who has lived with these children, knows how they respond to illness, knows true fear in her child's eyes over grouchiness and fever, it looks like a deja vu. </div>
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Took the little one into the clinic where the rapid strep was negative. But I managed to get three weeks of Azithromycin from a doctor who has helped us in the past and knows our PANDAS history. Once it was in her system, no more fear. Had several great days and then got a letter from the clinic saying the culture was positive for staph. Wow.</div>
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So we stopped azithro and started clindamycin for staph. Fear came back. </div>
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So......what to do? Obviously, clindamycin isn't working on something that zithro did work on. It would be so nice about now to have a pediatrician who was at least willing to learn about the basics here. </div>
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mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-33024867545414247082013-10-27T10:51:00.000-07:002013-10-27T10:51:48.904-07:00ScrapbooksA couple of days ago my daughter was having an episode. Screaming, yelling, and frankly too much frustration on my part (as well as hers). I know it's ridiculous--we've been going through this for so long. I should be able to operate every day with the realization that my daughter cannot function like the typical eleven year old. Yet every day I get to the point that I am expecting her to behave like one. <br />
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Actually, when I hand her a book to start reading (we attempt to homeschool her) or tell her to do anything--I know in the back of my head that she is not going to do it. Yet my frustration over the fact that she won't do it quickly escalates. I've got other kids watching this. Mom telling her to do something and her not only ignoring it but getting extremely ugly, calling mom stupid, etc.<br />
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My daughter has lost so much and can function only minimally at this point-eating, sleeping (up all night and then crashing), sometimes, after intense frustration and fit-throwing, able to get dressed appropriately to go to church or choir. She cannot get schoolwork done or keep even a pathway cleared in her room. <br />
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Often, we have to restrain my beautiful girl when she is raging. There is no hiding her raging or us having to restrain her from my other kids. Of course, I know this is not a good thing for my other kids to be bombarded with on a daily basis. Of course. But what does a family do? We are family. And although we have often considered hospitalization or a special boarding school, I know that this would not allow for her to be treated for any of the true pieces of the puzzle. She would immediately be taken off of antibiotics, supplements and put back on psych meds. And puch meds have never worked well or for long.<br />
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So we've held on to this situation while continuing to search for answers. Desperately search. <br />
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The other day after a pretty regular episode, which included her screaming that I don't love anybody, nobody loves her, she just wants to be loved, I got out the scrapbooks that included when she was born. we looked at those pictures, and I reminded her of how much we all wanted her and were so excited when she got here. After about 3 minutes of continued ugly commentary from her, she began to soften. <br />
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I noticed how much younger my husband and I looked. But I also <span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><b><u>felt </u></b></i></span>the mom that I used to be. I saw the hope and positive attitude in my eyes. I felt that all-immersed mom feeling....the feeling that came long before me needing frequent breaks from the screaming and constant "line in the sand" moments that often happen several times a day now. I saw the me that thought that the intense love I have for my children would fix anything that could possibly come up. <br />
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And I wondered if my children even remembered that mom. <br />
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Yesterday, in the midst of all of the normal, I had one of the few clear moments I'v had in a while. In the morning, my four year old tried to wake Sweet Girl up by hitting her with a book and jabbing her with a pen several times...not normally her nature. And then later when I told her she couldn't watch Dora on the computer, she asked all the other kids how she could get the computer without Mommy knowing. That sneakiness has not been her normal, either. <br />
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And my clear moment looked like this: Constant chaos and fighting IS my youngest daughter's normal. It has been this way every since she was born. <i><b>And what kind of parent lets their child grow up with this distorted state of normal? <span class="Apple-style-span" style="font-style: normal;"><span class="Apple-style-span" style="font-weight: normal;">This will certainly shape who she becomes.</span></span> </b><span class="Apple-style-span" style="font-style: normal;">We will continue to search hard for answers, including methylation answers, auto-immune answers, lyme answers. </span><b> But if things don't change soon, we will have to make some hard decisions in the best interest of ALL of our children. </b></i><br />
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Please, Lord, bring some relief soon!<br />
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<br />mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-66295681806057509362013-10-24T23:21:00.001-07:002013-10-24T23:21:10.212-07:00Turnaround?I know that I haven't been on this blog much at all. I can't even take the time to explain why. But I will tell you this, without any evidence to point me in this direction.....I know that my girl will get better. I know that God is working out a fantastic story for this girl. And in my mind I picture a day when we see people who have known us for years, and I will say, "Let me introduce you to my daughter." My beautiful daughter. Even though I haven't seen her in a long while, I know that she is still in there.<br />
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In the meantime, I will give you this update...perhaps you will find a piece of your puzzle, or maybe you will share a puzzle piece with someone you know who is searching for their child (or maybe you will share a piece with me!)<br />
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We have been treating Lyme for six months. With no significant change. Two months after we started, we had an improvement in her sleep, which, I kid you not, was a huge thing. But at our appointment at that point, we switched meds, and we lost that improvement and then some. Sweet Girl is now routinely up until 3, 4, 5 o'clock in the morning. And she is more gone in a lot of ways than she has ever been. <br />
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However, I do think that she is not as rage-y as she was earlier this year. Rage was at a level 11 on a scale of 1-10 in March, and now, perhaps it's an 8. Meaning, it doesn't go on all day every day. But she is having rage episodes several times a day with wilder antics than before. In between she can be withdrawn, playing with her sibling, drawing, tearing apart the pantry looking for food, but she can calm down after a while. <br />
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She is extremely oppositional, to say the least...doing absolutely nothing I tell her to do, boldly disobeying me even as I speak the words, lying while looking me in the eye, destroying property every day, making the biggest messes and then not being able to clean them up. <br />
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So after 6 months of no real improvement, I've asked around on the boards and gotten some great suggestions. We are now waiting for our KPU (pylourria) test results. Dr. Klinghardt (not our doc) believes that 80% of people with Lyme have KPU, and this is key because no matter how much you kill with the antibiotics, you are not able to properly detox. If you have KPU, you need to supplement with several vitamins, the main ones being zinc and B-6. Interesting. My son's labs from two years ago show him to be pretty low in those things, among others. Relatively speaking, this is an easy fix. But a careful one since the high doses of zinc that might be needed can cause heavy metals to move, and it's important to have a way to be getting rid of those. KPU can be genetic, or it can be brought on by some stressor....even an illness like Lyme.<br />
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Secondly, all of my children have a heterozygous gene mutation (one copy--either from my husband or me, but not both) of C677. This means that they cannot use regular folic acid. In fact, folic acid can build up and cause issues in itself. But folic acid is crucial, so they need it in an easier to use form...methylfolate. And they need methylB12 to go with that. Again, this is key because people who have this gene mutation cannot....detox effectively. Hmmmm.....starting to see a pattern here. <br />
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In fact, I have heard stories from people who said that treating whichever issue that had, dramatically improved their situation. Quickly. Neither is going to be the end all and be all, but one or the other or both might remove a huge roadblock for us. (For more information about the c677 gene mutation, go here http://www.easytolovebut.com/?p=2782)<br />
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And thirdly, we have our first appointment with a neurologist in four days. We are counting down the seconds. Seems silly, with all that Sweet Girl has been through, that we have never seen one, but at this point, I think it's wise to cover this base. AND....seems more information is coming out about autoimmune encephilitis...(sometimes Hashimotos's Encephilitis). We did some basic bloodwork and found Sweet Girl's TPO number to be high. Her regular thyroid tests, like TSH are great, but the TPO could point toward an encephilitis or some other type of autoimmune issue (which PANDAS is!) <br />
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I am hoping that with the TPO, the fact that we have an autoimmune history as long as my arm, the fact that my daughter has lost math skills and cannot function academically and the fact that we did all those years of psych meds with no sustained improvement, the neuro will look for encephilitis. <br />
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Whatever it is, I ask desperately for your prayers. Pray that God will heal my girl's body and quench the fire in her brain. Pray that God will lead us to the right answers and provide for us to follow through where he leads us. Pray that all of us are more like Him and can handle the stress of another day in this kind of life. Pray that we can all love like Him. Pray that He will work it all out for His glory.<br />
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My daughter needs a break. Her siblings need a break. Her parents need a break. We want our family back. <br />
<br />mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-30402427181670576392013-04-02T18:47:00.001-07:002013-04-02T18:47:03.877-07:00A LegacyI used to drive past a cemetery on my way to drop off Sweet Girl at her school each morning and each afternoon. Often, there was a funeral procession entering the cemetery or a graveside service in progress. I never thought too much about it except that I certainly didn't want to be there anytime soon.<br />
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But now I am looking past that place and wondering. One day, when the how and the date are past, there will be something that is left. And that is the legacy that I will leave behind me. Not my husband's legacy, not my family's legacy. My legacy.<br />
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<b><i>What will be the legacy that I leave my family? </i></b><br />
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When I drive past there these days, it always starts me thinking specifically about how my children will remember me through this most difficult time. If this season of our life is over soon, will I have the chance to regain who I thought I was as a mom? Will I have the opportunity to get back to the legacy that I thought I had begun? <br />
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The legacy that I wanted to leave was one of <b>presence</b>. Of "look you in the eye" and pay attention to the details that are so important to a seven-year old dog-lovin' cowboy, a three-year old little mommy, a sixteen-year old girl who is figuring out who she is....an eleven-year old who loved to read with me.<br />
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That legacy would put my husband in a prime position in our family and make our home a calm in the storm. The legacy that I wanted to leave says, "You are so very important to me." It puts God as the main presence and healer in my life. That legacy relies on Him and not on myself.<br />
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Maybe I'll have the chance to get back to that legacy. Maybe Sweet Girl will soon recover (at least somewhat), and I won't be the sworn enemy, the personification of all evil in the world to her.<br />
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Maybe I can get back to being the mom that I wanted to be instead of the mom who has no time right now because she is on the phone with the doctor's office going over test results, instead of the mom who is too tired to push you on the swings because she was up so late messaging another PANDAS mom and googling "detox solutions".<br />
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I don't want to be the mom that forgets to say prayers with you or pray FOR you because she is restraining your raging sister (or YOU). I don't want to be the mom who tells you to take your sibling out of the room while I deal with your raging sibling. And I sure as heck don't want to be the mom who is angry and loses her temper after being called a selfish brat for the fifteenth time today. <br />
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I don't ever want to give you the impression that you are in my way. I don't ever want you to feel anything less than precious to me. <br />
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However.<br />
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If today were my last day on this earth, I think the best legacy I could hope for would be:<br />
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<b><i>Persevere.</i></b><br />
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Perhaps that is enough for today.mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-45358090640143224952013-03-25T20:56:00.000-07:002013-03-25T20:56:18.033-07:00Who Would Dream This Up?<i>Pardon me, I am feeling a little sour today.</i><br />
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Back to the pediatrician we went today--to confirm my suspicion that strep has not left us. First I took my sweet girl, who is again....not so sweet. She had a big, matted mass of hair right at the nape of her neck which she would not let me touch. The intensity of her not liking me had come down a little after a couple of Advil, but she was still far from kind. <br />
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The nurse, who last visit had to help me hold sweet girl down for her Bicillin shot and seemed shocked that my eleven-year old would tell her mother no, called us to the door when it was our turn. Her face showed no sign of what must have been going through her mind as she realized it was us.<br />
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Sweet girl was all smiles with the staff and surely seemed awkward, but not a threat by any means. The nurse seemed puzzled when I had no definite strep signs but thought that she still had strep. I sent sweet girl out of the room with her little sister and reiterated that my daughter is raging at home, has an autoimmune issue related to strep and other illnesses (PANDAS/PANS), and told her that I had to be sure that we were clear of strep. I could tell that she didn't understand and thought that maybe I was missing something.<br />
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When the doctor came in, I watched as he seemed to be reading notes from the nurse and saying, "Hmmm." He, too, seemed puzzled about why we were there, said her throat looked great. She seemed fine. He said he would do a throat culture and see what grew rather than a rapid strep because then we might get a false positive. Ummm, ok. Maybe. But I still wanted it. Couldn't convince him to do both. <br />
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Sweet girl took little sister to the bathroom at this point, and I took the opportunity to tell the doctor, "You have no idea what is going on at home." I told him about the holes in our walls and the constant raging. He said with a smile, "Yeah, but it doesn't last long, does it?" like I must be exaggerating. <br />
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I looked that doctor straight in the eye without blinking....the look that says, "I am as serious as things get." And I said, "Yes, it does last long. Like all day. Just this morning she pulled out a knife." To which the doctor replied, "What was going on at the time?" (like this is an appropriate response for a kid in any situation short of being threatened with their life?) My response? Again, with unblinking eyes, "We were asking her to take her medicine." <br />
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"Really?" he said. <br />
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So we left with the idea that we'll get a call before noon tomorrow telling us what grew or didn't, and I'll sleep on the idea that I don't think the nurse got a good swab. Sweet girl hardly gagged. And she ALWAYS gags and grabs the swabs and kicks and becomes indignant.<br />
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<br />mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com2tag:blogger.com,1999:blog-3957342042877116805.post-62103805803074421012013-03-21T06:57:00.002-07:002013-03-21T06:58:33.820-07:00I'd Say That's Pretty Accurate<i>Laugh and the world laughs with you,</i><br />
<i>Weep and the world goes away.......</i><br />
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I've heard this line from a poem many times, but recently while reading <u>The Book of Virtues</u> by William Bennett, I ran across the entire poem. I'd say it's pretty accurate.....mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-5418796976749859012013-03-20T15:30:00.000-07:002013-03-19T15:33:16.901-07:00Strep, You Are Beastly.Just got back from the pedi, and after leaving behind a portion of our life savings and almost having to promise my first-born to pay for the four visits, strep tests and Bicillin shots, we know that four of four children have Strep. Have I mentioned that even Strep exposure causes a reaction in one of my children...I mean a major OCD reaction in my already constantly raging child? I think I mentioned that before.<br />
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I knew that the visit would be expensive, but I had to have proof, antibiotics and a paper trail on all of my children. If we cured just one or two, we'd continue to pass this yuck around. And we still might, but at least now we have a shot--no pun intended.</div>
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The visit was interesting. Interesting because our pediatric group that is all over this medical center city does not believe in PANDAS. So I didn't really bring it up. I just mentioned that one of my children had an auto-immune issue and was severely affected by exposure to strep. I hate to say it, but I think he could tell which one. </div>
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I was in last week with my youngest daughter (3) who tested positive for the third time in 7 weeks. She was given Augmentin since we had already tried Amoxicillin and Cefdinir. Yesterday when she was still positive after a week on the new antibiotic, the pediatrician seemed a little confused. A little like, "This is not supposed to be the case." He flirted with the idea of me causing a resistance in her by not giving her the antibiotics on schedule (which is not the case). Before we left I asked him if he saw this often. He subtly changed the subject.</div>
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So I'm wondering if we have a particularly virulent strain of Strep or if our immune systems are not up to snuff. I tend to think it is the latter. Because although we are not sick often, it seems that strep lingers in our family. And I am starting to discover that strep does not always cause symptoms in us. </div>
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Sometimes the only symptom has been a strange "evergreen" smell that I get a whiff of--seems to come from the nose rather than the throat. Sometimes there is nausea or vomiting, and sometimes just a headache or even just a warm little hand in mine. Sometimes nothing.</div>
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So I am reading, reading, reading. I have discovered that lingering Strep cansometimes have something to do with Lyme, and we already know that Lyme is an issue, so maybe....</div>
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Anyway, I'm leaving you with a few links about PANDAS. If you are living with this beast, I encourage you to visit the ACN Latitudes board for PANDAS (for some reason, my link button won't work, but go here: http://www.latitudes.org/forums/index.php?showforum=17 . There are other parents there who are trying to figure out this stuff, too. <br />
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And I'm again reminding you to tell everyone you know about the link between Strep and OCD and the host of symptoms that go with PANDAS. </div>
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http://childrenshospitalblog.org/one-mothers-story-how-strep-throat-attacked-my-childs-brain/<br />
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http://www.foodsmatter.com/asd_autism/miscellaneous/articles/pandas.html <br />
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http://www.ocfoundation.org/ocdinkids/parents/PANDAS_story.aspx <br />
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http://www.raisingarizonakids.com/2012/07/pandas-my-brain-is-making-me-do-this/<br />
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(ugh...none of those links are working correctly...you'll have to cut and paste them to your browser bar....sorry :( )</div>
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mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-73733522912093398592013-03-18T21:14:00.000-07:002013-03-18T21:14:29.461-07:00After OzWhew. <wiping across="" back="" forehead="" hand="" of=""> We are home. Barely made it. It occurred to me several times during the last leg of the trip that this could be my last day on earth as Sweet Girl raged out of control in the front seat in major traffic. </wiping><br />
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We left yesterday morning to go to our long awaited appointment outside of Dallas. Feels like we left a week ago. I did a very bad thing and stayed up past the wee hours of the morning on Tuesday evening/Wednesday morning because I wanted to have all my records just so to take to the appointment. I knew that was probably not a good idea. But I had no concept of just what a bad idea it was. <br />
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When I got up on Wednesday, I let my girl sleep til the last minute. She couldn't decide on any clothes to bring and hadn't packed anything because of it. She is actually down to very few items of clothing that she is willing to wear at this point, but it still becomes a long and laborious task for her to decide what to put on. So I put a few things that I have seen her wear into my bag, and we woke her up to get straight in the car. <br />
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She was very upset about not getting to pack her own bag and immediately became very oppositional. We gave her 2 Advil, 2 TBSP of peanut butter and had to chase her around the front yard, trap her in the van and take off so she wouldn't jump out (I know my neighbors love me....) She insulted and screamed and berated me for almost 2 hours. Finally, half way there, she was sweet and held my hand as we went into the gas station. She was pretty sweet for the next few hours and until bedtime.<br />
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We ate food of her choosing and went back to the hotel room early to go to bed about 7 or 7:30. I finally dozed off a little after 8, and woke up at 8:30 to turn off the tv like I said we would and dozed back off. She woke me up very upset and went on for hours screaming and yelling to me she wanted to go home, she couldn't stand me, no one could, she never wanted this trip, etc., etc., etc. Once in that time period, she calmed down and actually laid in the same bed snuggled up next to me, but when I dozed off, we repeated the whole cycle over again. <br />
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Finally, around 2, she dozed off in the other bed, and I had a chance to get some sleep.<br />
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We got up early to be outside the doctor's office at 8:30 for our 9:00 appt. We went in, Sweet Girl got to play on the swing and some sensory stuff, and we were called back very quickly. We left the office at 1:00 after an extremely traumatic blood draw which required the nurse, myself and the lab tech to hold her down. <br />
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The doc had to leave the room to visit with another patient a few times but spent a great deal of time with us. He suspected that yeast may again be a player for our girl (wish I could say that was a shock) and tested her for several chronic infections such as H1N1, coxsackie, etc. The doc gave her an rx for Omnicef (we had been on a month of Azithromycin) as well as an anti-anxiety med. I do have to get her on a plane to go to the appt in a month, and I am more than a little concerned about how I will do that. We talked at length about her history, and he asked who would be seeing her for Lyme. He knew of the doctor that we will see in April and seemed to approve. We have an appt to review test results in a month.<br />
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We left the office, and Sweet Girl was in a terrible state, set off by the blood draw. The 11 year old girl who had loved me when we went in now hated me and wanted to inform me, once again, that everyone hated me, that she never wanted this trip and was no way going to go with me on the trip in a month(hello, anxiety med for the plane ride). <br />
<br />
I planned to eat somewhere that she would like, but she could not find any place that was okay, and now she wanted to go home, and I didn't really want to repeat the night we had before. So we packed up the car and headed back home looking for a place to eat. We finally found a Sweet Tomatoes where my girl who always has a voracious appetite ate a handful of salad and a small serving of chocolate pudding. She said she wasn't feeling well. I thought she probably had strep again, but the doc had declined to test her since he was giving her a new antibiotic anyway. I think the blood test was enough.<br />
<br />
Did I mention that we filled her Rx? We did. Got a little lecture from the pharmacist about the anti-anxiety meds--I would so like to be able to skip them, but....And then we were going to get our nails done. Except that once we got into a salon to pick out the color, she didn't really want to.<br />
<br />
So back on the road we were with not enough sleep, but plenty of stimulation! She was feeling nauseous, but I gave her a chocolate and her new antibiotic--so excited to maybe bring our girl home! At least a LITTLE better...<br />
<br />
Pretty soon she was back to the irritable side, and we had more insults and ugly ideas coming my way for a. very. long. time. By the time we got to our hometown, it was dark, and I offered up several places to eat because no way was I going to cook when we got home. Nothing was agreeable, and pretty soon, I was stupid for even suggesting such restaurants. <br />
<br />
I finally stopped at Chili's--she likes their ribs. We went in and were seated, but she was complaining about what a terrible restaurant that was and how stupid I was--loudly. The server took my order--Sweet Girl declined--and the server was afraid to look at her. My food came fairly quickly (wonder why?) and I began to eat while she got more and more upset, half crying, half soft yelling about me being stupid, a pig, etc. It was so bad that we finally left. <br />
<br />
Got in the car and gave her the anti-anxiety med, but she was already hyped up. Yelling, kicking the dash, telling me to stop, STOPPPPPP!!!!!! Stop breathing, stop eating, stop drinking, STOPPPPP!!!!!! This soon changed to MAKE IT STOPPPPPPP!!!!!!! and I told her to close her eyes so she wouldn't see the lights going by, but she couldn't, everything was too much.<br />
<br />
We got home, and immediately, she couldn't touch ANYTHING. Not the door, not a person, nothing, and she was SHRIEKING from the car into the house. We turned on the shower and tried to get her in thinking that would calm her down, but she couldn't get into the shower and stand the feel of it. She was already naked and now could not put any clothes on. I shut the bathroom doors as I went out, and she couldn't open them because she couldn't touch anything. Didn't want me to leave her sight. And SCREAMING, CRYING. <br />
<br />
We couldn't figure out what to do. It was bedtime, but nobody was going to bed like this. Finally, in desperation, I remembered about activated charcoal to absorb and attract some of the toxins that were now being moved around in her body. We gave her two capsules. She ran upstairs and discovered that her room had been cleaned and screamed and yelled and threw things around for a while. The husband and I were in our room trying to brainstorm what to do. <br />
<br />
Thirty minutes after we gave her the capsules, I exited our bedroom to find her laying on the couch, fully clothed, watching tv and able to answer a question about a toothbrush.<br />
<br />
????<br />
<br />
Let's just file this post under--Herxing.<br />
<br />
<br />
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<br />mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-88515956239295684102013-03-15T09:19:00.000-07:002013-03-15T09:19:00.081-07:00Let's Get Real<i>I woke up today excited. Today is the first day of summer, my first day to have all of my kiddos all to myself where I can control diet, supplement times, water intake, etc. Today makes me feel like with God, I can do it. We can bring her back to the true her.</i><br />
<br />
That's what I wrote on the first day of summer--almost a year ago. Yet, here we are still struggling. Worse than we ever have before, in fact. I do not think that she is sicker than she has ever been. She has been on psych meds for four years, and her symptoms have been masked. How many years can we struggle with this? How many years can SHE struggle with this? <br />
<br />
This is the only family life that my youngest child has ever known. Most of what my son, age 7, has known. This is what they think our family is. But our family is a loving family who wants to play together, love on each other, bring out the best in each other. Our family is so much more than this mess.<br />
<br />
I believe that this is all our sweet girl remembers as well. She doesn't remember that we were so attached, so loving, that home was wherever we were and there was no need for "escape" or "relief". mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-69618699836409485902013-03-14T19:51:00.000-07:002013-03-14T19:51:10.252-07:00PANDASLions and tigers and PANDAS, oh, my! Okay, that was a lame attempt at making the unfunny....funny. Sometimes you gotta' laugh, right? <br />
<br />
PANDAS. If you don't know about it....learn about it. And tell everybody that you know. Because it could save the sanity of a child and/or family that you know. Literally. Save their sanity.<br />
<br />
More and more I am convinced that often mental illness is the same as any other illness. It is infection or some other disease state whose symptom is behavioral instead of or in addition to "medical". And PANDAS fits that to a "T". <br />
<br />
I could quote a lot of statistics and research here, but I'm just going to cut to the chase and give you the nitty gritty of what I know. PANDAS is an autoimmune issue in children (but not always) that researchers originally thought was due to only strep infections. <b><i><u>It is an infection that causes a sudden onset of OCD and/or tics and other behaviors. </u></i></b> Researchers have found, this disease can actually be caused/exacerbated by other infections such as chronic Lyme Disease (which many doctors don't believe in or don't know all of the symptoms of or test and/or treat inadequately), mycoplasma infections, staph infections, etc., etc. <br />
<br />
<b><i>Other symptoms of PANDAS are separation anxiety, bedwetting or frequent urination during the day, sensory issues (as in sensory processing disorder), concentration problems, irritability (sometimes this can include aggressive behavior), depression even to the point of suicidal thoughts, immature behavior. The is the short, general list. </i></b><br />
<br />
PANDAS is difficult to treat, to be sure. Add to the lengthy treatment time the fact that many, many doctors and insurance companies do not recognize PANDAS as a disease itself and often refer out for counseling and psychiatric treatment, and you've got a disease that can steal a person's childhood altogether. It can wreak havoc on family relationships and can rob a family of any savings they may have as well as money that they don't have but borrow to heal their child. <br />
<br />
Early diagnosis is huge. Getting doctors to recognize it is even bigger. And educating parents is enormous. Who will fight for a child like their parent? Not a doctor--not even the best-intentioned one is invested like a parent. <br />
<br />
At this point, PANDAS and Lyme and other infections have taken 7 of my daughter's 11 years....and she is not healed....yet. We didn't even have a clue what was going on until 2 years ago--after we had seen pediatricians, therapists, psychiatrists, autism specialists and been evaluated by the school district. And even then, we didn't find out about PANDAS through them. It was googling and questioning and remembering that once, years ago a doctor had mentioned PANDAS and then went on to refer us to a counselor. <br />
<br />
But after getting confirmation of PANDAS through Madeleine Cunningham's testing at Oklahoma State University, we still could not get treatment from our local pediatricians who gave us the speech about how PANDAS was unproven, and we had to be careful of following unproven lines of treatment, and by the way, if we didn't come up with some plan for vaccinating our children, we would no longer be seen by the practice (okay, I'm a little disgruntled). <br />
<br />
We saw at least 3 local pediatricians who would do nothing but run us out of the office and then found a functional medicine MD who recognized PANDAS but hadn't had enough experience with it to feel comfortable treating it. And she tested us for Lyme. So then, after quite a bit of arguing back and forth about whether or not this was real and the true cause of everything, my generous husband and I agreed to see a Lyme doctor several states away. Ahem. And may I just say, he was not all he was cracked up to be. And although we had never taken my girl of off psych meds, we went back to the idea that she must just have bipolar, perhaps brought on by PANDAS and/or Lyme.<br />
<br />
Frankly, it was more than we felt we could swing to take us all to the Lyme doc out of state. I knew that we could not continue to travel the country paying thousands of dollars to doctors who did not take insurance. And we did the best that we could for our girl.<br />
<br />
After two more years on pysch meds with no significant long-term improvement, we were seeing more side effects than we had ever seen before. To the point that we had to wean down off of meds altogether, had a strep exposure soon after and a very obvious OCD flare until we started antibiotics. And this brings us to where we are today. Treatment for PANDAS. And Lyme. And other infections. <br />
<br />
So I end this post by telling you again, if you know a child who has a sudden onset of OCD or tics, tell the parents about PANDAS. If you are the parent, educate yourself about PANDAS. And then advocate for your child. You could save someone's childhood. You could save someone's family. Tell everybody you know.mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-13307549015773289342013-03-12T09:06:00.001-07:002013-03-12T09:06:20.014-07:00One More Day Til It Really Begins....I HopeToday is Monday. One more whole day before we go to our doctor's appointment in North Texas. About a five hour trip for us, but I am so hoping that it's worth it. This doctor deals a lot with allergy/immunology issues and has helped a lot of PANDAS kids. So say an extra prayer for us, please. Hoping that he will be a big piece of our healing puzzle.<br />
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We still have our appointment in Colorado for Lyme. I hear great things about this guy, and honestly, I think he is the first piece of the puzzle that has to be worked out for us. But I have to get this machine rolling, and a PANDAS doc is a necessary part of that team of docs. Our Colorado appt. got bumped up from mid-June to early April <see dance="" doing="" happy="" insanely="" me="" the="">. And...we have an appointment with her psychiatrist in early April, as well. </see><br />
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I have to keep our psychiatrist in the team for a couple of reasons. First and foremost is the fact that our family is on the brink. Over the brink, actually. We are hanging onto the edge of the cliff by our fingernails, and slipping as I type. I don't want her on psych meds because I want to know that when I see improvement, it is from our wellness plan, not from our band-aid plan. And on psych drugs, it will be hard to distinguish. Yet...I can't hang on like this much longer at all. And I know the rest of our family can't either.<br />
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The second reason I need this doc is that our house is that house on the block that could just sink into the ground and be swallowed up whole at any moment. It's the one that neighbors must see as the house with inexplicably flashing lights, strange noises and screams in the night (and in the day). We're the family that appears to be shirking our duties when our children march, push and shriek their way out to the van for church and the family that requires three children to sit in the running van for a half hour or more while a parent tries to wrangle a small-adult-sized child screaming, "I HATE YOU, I WISH YOU WERE DEAD IN A DUNGEON, DON'T TOUCH ME!!!!!!" out to the car for school or some other venture. Even though several of our neighbors know what is going on, I need our psychiatrist who has walked this walk with us for the past four years. I need him to be able to tell anyone who comes to question, that this is not poor parenting or abuse. We have been walking this walk with him for years, and we are so TRYING to heal our daughter. <br />
<br />
And recently, we tried a therapist. Two visits. I thought that would help. She seemed to be in a place where she was more aware, where she could tell me, "I'm starting to feel bad and irritable." However, she has since left that place and can only scream and rage. There is no good time any more, only momentary breaks. She can't function in a way that would allow her to use any skills to "manage" her behavior or symptoms. So for right now, no therapist on our "team". <br />
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So we're leaving on Wednesday. Please pray for us. Pray for an accurate picture of dd's circumstance for the doctor, for me to be able to include everything that is an issue, for dd to feel positive and good about this experience, and for HEALING. Please pray for healing. For our daughter who has been so sick for so long. In a way that alienates her from those that love her most....not being able to stand the touches or hugs of those people, spitting words at those people like venom. And please pray for healing for our family that is so hurting. <br />
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May God bless you and yours and bring healing to each one of you who needs it.mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-85327919624757622282013-03-03T09:01:00.000-08:002013-03-03T09:01:05.797-08:00This Must Not Be DepressionIt is 12 am, and I have just walked into the house from a movie. Alone. My husband and all the children are sleeping cozily in the den with Little House on the Prairie playing on the tv. I feel like a good for nothing having been out without them.<br />
<br />
All days have been the same here. Raging, name-calling, insults. No ability to complete a task or get dressed appropriately. Certainly no ability to prepare for or attend school or do any kind of homework. I am mentally exhausted. My head is aching, bur ing, pounding. I don't want to do anything. I can't find the energy to prepare a meal or clean up the mess that she has made hole in a rage--chairs turned over, toys and things all over the floor in our schoolroom, her room, the stairs, etc. broken items in every room. She hasn't had a bad spell since around noon, but I just want to lay in bed and watch movies. And sleep. <br />
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Tomorrow is Sunday. And church. And I know there will be fighting about clothes. I don't wnt to go. My oldest daughter keeps wanting to go somewhere, to get out of the house, but I don't want to have to think enough to have a conversation or be pleasant. I anted to get out and see a funny<br />
Live, but I didn't want to have to drive myself there or back. Or get myself dressed. I am dreading g tomorrow. I don't want to get up. I don't want to fix breakfast or lunch or drive to chirch. Or feel like a schmuck for it wanting to do anything. My head hurts. <br />
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This is all worrisome because I have to be functional for this life to work.mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com2tag:blogger.com,1999:blog-3957342042877116805.post-53843163602819125012013-02-24T21:25:00.001-08:002013-02-24T21:25:06.839-08:00Diary of SymptomsSweet girl has been off of all psych meds for 3 weeks now. Three weeks with no Lithium, Depakote, Abilify, Tegretol, Pexeva and the like? I never thought we'd survive.<br />
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Lest you (or I upon reviewing this for our records) think that these past three weeks has been a bed of roses, let me assure you, it hasn't been. <br />
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Except for those first three days. On those first three days, for whatever the reason, my girl was here with me. She was the girl that I know. Not easily angered or flustered. Almost seeming to understand that she has caused so much grief and so much pain to her sister. Able to have a conversation with me about that and how to fix it. The behavior of an almost 11-year old girl rather than a three or four-year old one. Best buddies with her brother. She smiled. Sweet girl has a glowing smile.<br />
<br />
Everyone saw it. It wasn't just my imagination.<br />
<br />
But then at the end of the third day, we had a soy peppermint white chocolate mocha. And over the next half hour she began to unravel. <br />
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By no means am I saying that I believe that the coffee is the cause of the unraveling, as I initially thought. But it is something that makes me say, "Hmmmm....."<br />
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After the coffee, we shopped in the mall, and she happily looked at clothes that she might like to wear. I was imagining her in those clothes instead of the ones with the hanging threads and the ripped seams and the stains that she wears every day. It was a wonderful time. But then she started to get irritated with the clothes. And the people in the mall that were everywhere, and I couldn't get her home soon enough for my liking. <br />
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It was that fast. Something took over. And that something has waxed and waned ever since. <br />
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One of the key points in all of this was the Thursday of my oldest daughter's first "date". The boy, who had already met with my husband and been coached about treating her right, came over for pizza and a movie and to hang out with our fam. <br />
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Sweet girl was fabulous. A little less mature, but happy, rosy-cheeked, wonderful. She did not pull any of the stunts that my oldest daughter thought she might. (I wish I had not felt awkward taking a pic--my oldest daughter sat next to the arm of the love seat, Prince Charming sat in the middle next to her, and sweet girl sat on the other side of him! What a cozy bunch!)<br />
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After the movie, Daddy took the two of them out for a walk on the golf course, and I had sweet girl take her shower. Everything was fine. Until she turned off the shower. Then she couldn't put the washcloth down because it had wrinkles, and she couldn't straighten it out. Then she got out of the shower but couldn't leave the towel because it was wet, and she couldn't straighten it out. By this time, she was screaming, yelling and out of control, and I was sure that they would all walk in at any moment. She had to wipe everything down with a napkin, water bottle, pills, everything. We finally gave her some Melatonin and Advil, and she calmed down enough to get ready for bed. OCD had returned in a big, wild way. That fast.<br />
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The house was all quiet by the time the troup returned home, and I was spent. Prince Charming went home, and all had gone well for the "first date". <br />
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<br />mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-37403666798071703172013-01-29T18:35:00.002-08:002013-01-29T18:40:10.506-08:00Tender MerciesMy girl has been through hell again lately. And so have we, her family. I am usually the target of anything that disturbs her....from being able to hear me breathe to asking her how her day was at school. We have all endured hours of raging, torn clothes, broken and otherwise ruined items. <br />
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In the middle of it all, my girl has softened for a moment, whined to me that she just wants to be nice, beeeeeegggggged me to help her be nice--and in the next moment spit venom at me through hateful words after I tried to suggest something like listening to some music on her ipod or reading a book. And the next moment, she has begged again, pleaded through a crying voice. She has been crying out to me to take this agony away from her. <br />
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And I have had nothing to offer her.<br />
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Just typing about it, rethinking it, I heave a deep sigh. It's been exhausting. And hard to always stay out of it, not get sucked in to arguing the points. I can't comfort her by touching her arm or rubbing her back; she can't stand touch and vigorously wipes off the touch after she jerks herself away. <br />
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She has been on Lithium since Christmas break. Lithium and Abilify. I know that Lithium helps some tremendously. But to us? Lithium feels like water. Or perhaps poisoned water.<br />
<br />
A week ago, her school called me to tell me that she was shaking. I had left my phone at home, and when I got back and found the message, I thought, "Shaking? You mean, more than usual?" Because shaking has been an issue for her since before we started Lithium. I called her psychiatrist who, oddly enough, had an opening that morning and agreed to see her. When I got to school to pick her up, her arms were shaking so badly that she could not drink from a water bottle. She was sweating and feeling nauseous. Her speech was slurred (but had been so over the past week or so). <br />
<br />
I thought she had lithium poisoning.<br />
<br />
Her doctor gave her a cogentin in the office to calm down the shaking and gave me some to give at home. He said it was a combination of the Abilify and Lithium and told me to back down on the Abilify. <br />
<br />
But this weekend, she was wildly out of control. We would see extended family (we were out of town for a baby shower), and she'd be able to contain the tantruming, but anyone could tell that something was not right with this kiddo. Wouldn't really look at people, quiet, strange demeanor, and if we were sort of alone, she would be horrid to me with ugly remarks. It was like being pecked to death with a very large and pointy beak. <br />
<br />
I had to call her doctor. I was thinking that we were possibly looking at our first hospital stay...and we were out of town. I didn't think that our other three children and I could safely ride four hours home in the van with her. And I could see that on top of it all, she was extremely distraught about feeling this way and not being able to contain it.<br />
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Her doctor told us to give the med that we had held back on, and somehow, by the grace of God, we made it home the next day. Luckily, I had an appointment with the doc the next day, and she will be fully weaned off of Lithium in the next two days. Thank God!!!!! <br />
<br />
Last night, after I gave her the smaller dose, we read our devotional book, and it spoke about the prophets in the Old Testament and the fact that they were not always popular. And it talked about standing for right even when other people didn't/don't like it. <br />
<br />
And my girl, softer than I had seen her in a good while, joined us in the conversation. And she said in the stopping and starting, unsure way of herself that this medicine has given her, "I used to be sort of popular. But now...." And honestly, I don't remember the rest of what she said. It hurt my heart for her. <br />
<br />
But then she went on not to mourn any idea that she might not be popular, but to say that she stood up against two others in her class who were being mean to another girl. It took her a long time to get it out, but she was really thinking about looking out for that girl and standing up for what was the right thing. <br />
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And my heart melted. Because that is the heart that I know is in my girl. Only a bit more sorrowful and tired. <br />
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I love this girl. She's still in there.mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com2tag:blogger.com,1999:blog-3957342042877116805.post-80614118018621190302012-05-30T23:19:00.000-07:002012-05-30T23:21:27.361-07:00Sometimes You Have To Laugh....Even in the Midst of ItIf you've read any of the last posts, you know that our life lately has been rough. Er. Rougher than normal rough. No laughing matter, frankly. But sometimes something happens in the middle of it all that is just hilarious. <br />
<br />
And I consider it a true gift from God. You've gotta' laugh when you're in the middle of this or something much worse than crying will ensue!<br />
<br />
Last Saturday was that kind of gift. My husband and I attended a wedding. It was really at an awkward time since my oldest three kids were set to perform in their year-end choir concert. Complete with formal gowns, gloves, a tuxedo and a bow tie. <br />
<br />
However, one of my husband's younger friends was getting married, and we felt that it was important to go. So the plan was for my almost-sixteen year old to babysit, and everyone was supposed to shower and <i><b>get ready</b></i> to get ready. And then I'd swoop in with an hour to spare and help everyone finish up.<br />
<br />
So the gift of laughter first arrived within three or four minutes of being seated in the pew at the church. My <b>lovely</b>, <i>love-of-my life</i>, <u>wouldn't trade him in for anything</u>, husband began nodding off. As he is famous for. (But this was early, even for him.) And I started the finger poking and arm nudging routine. Funny. My insides were a little giggly.<br />
<br />
By the end of the ten minute service, I had poked and prodded him for at least three or four separate sleeping infractions. Thank goodness we were in the back!<br />
<br />
Then we went to the church gym for the lovely reception, right up my husband's alley...barbeque with all the fixin's. He wasn't sleeping anymore! We enjoyed the meal...it was a date, really, and we reminisced about our wedding and laughed at some things that we would change if we could do it over again.<br />
<br />
And then we got a text from my oldest daughter. Sweet girl could not get the dress on. And a raging fit followed, complete with breaking glass cups. Ugh. I told her to not engage, go into our room and we'd be home ASAP.<br />
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Then another text. Pictures of broken glass. Argh.<br />
<br />
Then another text. I held my breath for what would be worse than intentionally broken glass. But this text was about my boy. Who was supposed to be in the shower during this episode. Only he wasn't really. He was using my new hair scissors to cut off his eyebrows. <br />
<br />
The gift was fully unwrapped. I laughed. I thought about it some more and laughed harder. By the time we got to the car, I was laughing so hard that tears were streaming down my cheeks, and I was making strange noises because I couldn't catch my breath. I laughed so hard that I had to lean on the minivan and gain my composure. <br />
<br />
When we got home, clothing sensitivity and outrageous tantrums were in full swing. There was no calming things down, making things better. Getting to the concert was an exhausting, crushing event. But once the concert started and I looked at my boy on that stage....all fancied up in his tux, fresh haircut and.....slanted eyebrows that made him look like an angry cartoon character, a warm smile crept over me. And a tear slid down my face.mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-7562750973713373962012-05-29T23:50:00.005-07:002012-05-29T23:53:36.739-07:00just some thoughts.....Another day, another exhausting episode or two with only more to come. Today is the first day of summer. The first day that my daughter will be home all day, every day, with the exception of a couple of VBS programs, some math tutoring and a mini-vacation or two. And I look ahead to a very tiring time. <br />
<br />
She has now been on something similar to Tegretol for three months. Initially, she had two fantastic days, and then back to the same old song and dance. Her psychiatrist increased the med from 100 mg twice a day to 300 mg twice a day. I would say that it is affecting her like water. Wait, water would probably be better in that it might slightly detox her. She is also on Abilify, which we have increased substantially. To the point that I really don't want to go any higher.<br />
<br />
I look back over the past 18 months, and although we have had some times that have been a little more bearable, there really has been no <i>good</i> time. What's more, her maturity level has either decreased or she's just been passed up by other kids her age. And she now has these obsessions, which are relatively new. Not like you think of an autistic kid playing with toy car wheels, but obsessed over a sad story that she saw on the internet and trying to corner anyone she can to watch the rather lengthy video. Making posters about the baby boy in the video, etc., etc. <br />
<br />
So, I'm not really feeling the medication groove right now. We're backing down off of Tegretol, increasing vit c, niacin and researching some more. Strengthening resolve with yeast detox. More water intake. Trying to boost her immune system, increase her detox, support her liver. She'll stay on a high dose of Abilify. At least for right now.<br />
<br />
Our psychiatrist says he's going to have to do some more research. Always a banner day when your psychiatrist who has dealt with things like this for 30+years is stumped by your case.<br />
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So I am now reading <u>Body Ecology</u> by Donna Gates and <u>What Works for Bipolar Kids</u> by Pavuluri. I'l let you know what I find out....mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-62652119960466094202012-05-28T23:09:00.001-07:002012-05-29T10:37:00.662-07:00Sock It To My Girl!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgikChnNBvT5kcvozx_GQBHO4mLjQqJV6uFemDf85QXKxr9saUO9BQctKTK0q_CfZxkBCuRS3-9lP8A7AZMZKeeNWkWmAvipO8NB2JcO_7jq1ZajKosWWkIDT8O8N_GP_Q77I0GPRYD-fvy/s1600/tic+tack+toe+socks.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgikChnNBvT5kcvozx_GQBHO4mLjQqJV6uFemDf85QXKxr9saUO9BQctKTK0q_CfZxkBCuRS3-9lP8A7AZMZKeeNWkWmAvipO8NB2JcO_7jq1ZajKosWWkIDT8O8N_GP_Q77I0GPRYD-fvy/s1600/tic+tack+toe+socks.jpg" /></a></div>
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My girl has some pretty serious clothing sensitivities (sensory processing disorder), and socks are a biggie for her. Most mornings are very difficult for several reasons, but one of the biggest is getting socks and shoes on. (We try to put socks on the night before but sometimes forget, most other nights they get kicked off in her sleep.)<br />
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And seamless socks? They are not all what they claim to be. At least in my girl's opinion. We've paid a fortune for socks, usually to find out that they did not fit the bill. Even tried those socks that are marketed toward kids who have sensory processing disorder. The ones that claim they won't "bug ya'". But they did. Bug her. And I had to send them back.</div>
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But one month before school was out this year, we found the perfect socks for her! <a href="http://www.kidssocks.com/Tic-Tac-Tow-s/1117.htm">Tic Tac Toe </a>socks!!!! Very, very soft fabric and seamless at the toe. She got no-show socks (you can get several different styles), and after the first couple of days, no more sock battles!</div>
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The first two days she had much milder issues with them....over being "too slippery" and "TOO soft", but by day three, she was used to it. And honestly, the extra slipperiness and extra softness seemed to be remedied the first time they were washed. </div>
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If you are having issued with sock sensitivity, maybe these will work for you, too! </div>
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<br /></div>mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-81603547948999348472012-05-17T20:30:00.001-07:002012-05-17T20:30:36.024-07:00After 12 Days on Yeast Detox Again....It has now been twelve days since we started the yeast detox diet again, and I won't lie to you. It's been tough. My daughter who loves bread, sugar and all things bad for you thinks that I am trying to punish her with no food in the house. And to be honest, I am hungry.<br />
<br />
But it will get better. I am not craving sugar so much. And I know that her gut is getting better. Still... I have not found the same miraculous reaction that we found the first time on this diet. Yet. <br />
<br />
We started the diet again because things got so bad with my girl. Not a peaceful, without attack moment around our house (or our car). <br />
<br />
We resorted to another visit with our psychiatrist and another attempt to adjust medication. We're now on our second day of increased Abilify, and when I picked her up from school today, she didn't verbally attack me for the first time in weeks. Her eyes were sparklier, less sad and angry.<br />
<br />
But we forge ahead with the diet because I feel confident that it will do her good. Because I totally believe that the reason she is in this place is because of something bigger than a "chemical imbalance" in her brain. Something is causing that imbalance. <br />
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So for now, we continue on with the diet, and we pray, pray, pray for my sweet girl who is still in there somewhere. Our God is the God of the Impossible. We covet your prayers for her sweet heart to grow stronger in Him, for her to learn to control her impulses, for her body to heal, for wisdom for us, her parents, to know which direction to turn.<br />
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<br />mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-17323123463543594732012-05-05T18:00:00.001-07:002012-05-05T18:19:43.253-07:00Sticking With Us Like a Bad Love SongSo here I am after a medication change with my girl that seemed to calm down some of the irritability. Only now, not so much. It's bad. Little cutting remarks, sometimes big ones, like nobody likes me, don't I know that already? Like she absolutely hates the new color on our wall and she can't have anybody over because they would hate it, too, and she would tell them that , yeah, she hates it, her mother picked it out. And hand flicking to get me away. Blech. <br />
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This is no fun. I have recently come to the place where I realize that I can no longer live in crisis mode (you'd think I would have discovered that years ago), but I have to try to have some sort of calm and normalcy in the midst of this tornado. For her. For me. I feel selfish. How can I have normalcy when she continues to be in turmoil? When it feels like she hates me?<br />
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I am realizing that after medication change and adjustment over and over, the thing that has helped her the most has been the yeast detox diet. Which is so. darn. hard. And when we did it before she was 8. She is now 10. <br />
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But it's the only thing. We've been swimming out in an ocean of much needed medications and "quick" (ha) fixes, but I have to turn around now and swim back to that island that seems so far away. Kicking yeast to the curb. <br />
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I have my stash of diflucan and nystatin and garlic that I have been hoarding, and I'm going to be picking up a couple of more natural antifungals. We're all going to do it (including Daddy this time). And I'm starting with 28 days but telling them we have to see where we are after 28 days. <br />
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Off to plan the menu. If you are doing yeast detox, let me know. Maybe we can "rah-rah" each other. <br />
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Oh, yeah....my favorite yeast book ever... Complete Candida Yeast Guidebook. Awesome. (But still having to search for kid-friendly recipes.) I've read some of the reviews, and all I can say is....often ignorance is bliss....For us, we know this stuff is real. It worked before. Pray for us that it works again (and that we can be more complete).<br />
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http://www.google.com/products/catalog?q=book+candida+yeast+everything&hl=en&client=safari&rls=en&prmd=imvns&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&biw=1434&bih=789&um=1&ie=UTF-8&tbm=shop&cid=6957211617341954337&sa=X&ei=2MulT9WiMYi22gWq39TfDw&ved=0CHUQ8wIwAA#ps-sellers<br />
<br />mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-24850903967131178122012-02-25T20:01:00.001-08:002012-02-25T20:13:59.638-08:00One Saturday in FebruaryI am a downed horse today, so to speak. I keep looking for answers, finding more pieces of our puzzle, running into more and more people who have similar issues in their families. <br />
<br />
A couple of days ago I had a revelation (about detox), and so many more of the pieces seemed to come together. And because I have another appointment with our psychiatrist on Monday and want to argue my case about doing something other than what he last suggested, I have been rereading <u>The Bipolar Child</u> by Papolos and Papolos (an excellent book). It has really helped me to get my ideas together for the appointment.<br />
<br />
And although my daughter's extrememe separation anxiety and school issues have vanished, her irritability and oppositionality are at the ever-present level. It always sneaks up on me, little by little, and I am once again painfully aware that she is not properly medicated. <br />
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Medicated. I hate that word. ( I spit on you, "Medicated").<br />
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The other day I saw things in a different light for the first time and asked my husband, "Do you think that this is a 'swing' or cycle?" Because, as I said, she is now fine with school and irritability, etc. has become much more obvious. And nothing else has changed....no medicine, food, etc. <br />
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And I am so darn tired. Want to go back to sleep every day. My oldest daughter continues to have joint pain, extreme chest pain and nausea on a fairly regular basis (pretty much monthly). And last night it became obvious that OCD is back in the picture for her....in a big way.<br />
<br />
And I am just not enough for this today. I am so tired and feel so defeated. Like I can't fix it all. We went to a dollar movie today, but other than that the only thing I did today was lay on the couch, on the bed, turn away neighbor friends to play and feel sorry for myself. And I don't do that. There is so much to do that I rarely sit down unless I am in the car. <br />
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But I just can't. It's my party, and I'll cry if I want to and all that.....<br />
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This post is pitifully written; I am aware. But I'm just letting it out. Tired. Beat up. Worn out. Wondering, "Am I just a bad seed?" Because this is too much to bear. The loves of my life....sick in a way that I can't fix. Sick in a way that tears at every piece of our family life even as I hurriedly try to stitch it all back together. <br />
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Today I just feel like it's being torn about so fast that all of my stitching is futile. <br />
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Because today I think that I finally get it. I am certain that the issues my children suffer from are the result of the toxic soup that is swimming inside of them. But whatever the cause, symptom-wise, treatment-wise, <strong><em>my daughter has early-onset bi-polar disorder</em></strong>. The idea that I wouldn't, couldn't entertain years ago....it's come true. <br />
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God help me to draw near to You because I certainly cannot do this of my own strength.mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com6tag:blogger.com,1999:blog-3957342042877116805.post-40810724750077570172012-01-07T23:12:00.003-08:002012-02-25T20:08:01.210-08:00I'm the Mom in the Minivan Next to Yours......I'm a mom like so many others that you know. I am a suburban, minivan-driving Christian mom trying to raise my four kids in a negative world. I homeschool two of my kiddos. I taught elementary school for nine years. See? Like so many of the moms that you know, right? But not really. My life is <i><b>so</b></i> not normal. I have a 15-year-old daughter, a 9-year-old daughter, a 6-year-old son and a 2-year-old daughter. And my second daughter struggles with mental illness. "Issues" I tell myself. I never tell myself "mental illness". But my heart knows it. <br />
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My sweet daughter was born when my husband and I had been married ten years and had a five year old daughter. All three of us could not wait to meet this baby girl. My husband was just finishing his doctoral program, and I was leaving my job to be a stay-at-home mom. Our life ahead looked sweet!<br />
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When my baby girl finally arrived, we were all over the moon in love with her. She was perfection itself!!! All 9 lb, 8 oz. of her! She smiled in the hospital, cuddled and snuggled and loved on her mama. I remember holding her against my chest, squeezing her tightly and thinking, "This must be what heaven feels like..." How could life get any sweeter?<br />
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As she grew, things only got better. Discipline with her was easy...I could just look at her and raise my eyebrows....she so wanted to please. She had long, curly blond hair, and she had an amazing vocabulary. She was reading before she turned 3, and we enjoyed trips to the library and the silliness of reading Robert Munsche together. One of my favorite memories of this time with her is of the two of us standing on the sidewalk in October and watching the leaves "dance down the street". <br />
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She was so bright that when we started to notice quirkiness, we just thought, "Isn't that cute?" Because it was! And we thought it was further evidence of how very intelligent she was. Really Intelligent=Quirky, right? And we were more than okay with that!<br />
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But then came the temper tantrums if things were not the way they were "supposed" to be. Or if they didn't "feel right". And when I say temper tantrums, I'm not talking about the kind that ended with a nice little "teachable moment" and a spanking or time-out or anything of the sort. I'm talking about temper tantrums that lasted for an hour or more. Sometimes hours. Day after day. These were tantrums in which she couldn't get control of herself. And we couldn't get control of her, either.<br />
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She couldn't stand the way that clothes felt....any clothes.... and she was reduced to wearing knit clothes that were several sizes too large. Even then, she would scream and tantrum and stretch those clothes out until they had holes and hanging threads. And forget underwear! And socks! Or any shoes except.....maybe Crocs. All of this did a real number on her. I remember her asking me if she was the worst kid in the neighborhood. <br />
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Her pediatrician suggested therapy. Then she suggested an appointment with a developmental pediatrician--the wait was 9 months long! And all the while my daughter (and our family!) was suffering. I found another doctor who had left "the system", and he suggested <i><b>PROZAC</b></i> for my 6 year old daughter. Which I politely declined on my way out the door.<br />
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We started occupational therapy, and I started hearing terms like, "Autistic Spectrum Disorders", "Pervasive Developmental Disorder", etc. My heart broke a little more every day. My amazing, lovely gift from God was slipping away from me, and I couldn't stop it from happening.<br />
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Then my kind-hearted daughter started becoming aggressive. When I look at it objectively, it's hard to blame her. She was in agony, and her Daddy and I--the people who were supposed to take care of her no matter what--were powerless to do anything about it! I was determined that we could "lick" this thing without medication, but finally, I had to break down and take her to a psychiatrist. I was convinced that she was going to hurt herself or someone else if I didn't. My six year old daughter. To a <u><strong><em>psychiatrist</em></strong></u>. Let me just say....that was a dark, dark, dark day. <br />
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<i>We put my daughter on medication. </i>And not ADHD medication. "Black box warning" medication.<br />
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And while it was the last thing that I wanted in theory, I was begging for it by the time we got it. Our family had descended into hell. <br />
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Then there were medication changes, side effects (including an extra 20 pounds) and lots of reading for me. We added a gluten-free, cassein-free diet (which made a big difference despite the fact that most medical professionals told me it wouldn't work and wasn't worth the effort). We did yeast detox (HUGE difference). Then we added lots of supplements. And then we saw more doctors and had more blood tests. <br />
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Mood disorder. Bipolar. Generalized anxiety. OCD. PANDAS. Lyme. Anti-depressants, anti-psychotics, antibiotics, probiotics, enzymes. Leaky gut, inflammation, strep, mycoplasma. And a tonsillectomy, too! I'm sure that I've left out some of the details, but you get the idea.<br />
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So this is my life right now. That sweet life that I thought was waiting for us all? We're so far away from it that it doesn't even show up on my GPS. But in my heart, it's always there in the profound sadness of what ought to be, the constant search for how to get there from here.<br />
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This life--the kids, the husband, the home, the minivan.....it was my dream. And sometimes, like when we sit down to dinner, and my six year old son giggles so hard that he falls out of his chair or my nine year old daughter tells about going out of her way to be kind to a classmate who needs a friend....at times like that, my heart smiles a warm grin.<br />
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But sometimes, my dream is a <i><b>nightmare</b></i>.<br />
<br />
<b><span class="Apple-style-span" style="font-weight: normal;">On top of the super anxiety, tantrums, sensory processing issues, and did I mention hyper-irritability</span>, <u>t</u></b><b><u>here's my guilt</u></b>.....Did I eat something while I was pregnant that caused this? Was it because I didn't ask to get off of bus duty, and I breathed all of those diesel fumes? Did I cause this by giving birth to her brother at a vulnerable time for her? Did I miss some sign of illness or allergy when she was an infant? Why did I give her all of those vaccines? Was it because of the way that I parented her as a baby and hugged and kissed on her all of the time, never leaving her with anyone else? Was it because I talked on my cell phone too much while I was pregnant with her? Did I cause this by eating gluten when I was pregnant (I now know that I have a gluten sensitivity)?<br />
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<b><u>And there's my anger</u></b>....how can my pediatrician not know where to send me or what to do????? And then how can he look at me like I'm crazy when I tell him that I don't want him to vaccinate my baby because we don't know what caused this in her big sister? How can doctors lecture me about ineffective diets, avoiding vaccines and trying holistic remedies when they don't have anything else to suggest? Why would people give us grief over feeding our children a special (and by the way, healthier, but not easier) diet when they know the issues that my daughter has struggled with? <br />
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There's <b><u>alienation from family members </u></b>who think that they could fix it all with a harder spanking, and there's <b><u>trying to seem "normal"</u></b> so that my precious daughter does not experience rejection from other children and adults who do not understand. There's <b><u>stress</u></b>, and loads of it, because there are a million therapies to try, but none of them are free, and most of them come from doctors that aren't even in our state. And there's <u><b>exhaustion</b></u> from trying to reason with my girl when she is not reasonable, discipline her for outburts that are often beyond her control and keep my younger children from copying her behavior when it is off track. <br />
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And finally, at the bottom of it all, there is <b><u>loving my amazing daughter</u></b>, who deals with more than any child should have to. Loving her in a very tangible way....making sure that she gets her meds, doesn't eat a "forbidden food", goes into her classroom even when her daddy or I have to carry her in so that she doesn't give in to the separation anxiety that can paralyze her. Reminding her that God works all things together for the good of those that love Him. And searching. There's always more searching until we find the answer for her. <br />
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And one more thing. <i>There's missing my girl</i>. <br />
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Someone once asked me how they could help me, as my girl's often-overwhelmed mom. I didn't really know what to say because the answer that comes to mind so easily is, "Give me another hour in the day!" or something equally "un-givable". But since then, I've thought about that a lot, and I think the biggest ways that someone can support a mom in my situation are the ways that she can support anyone in a difficult situation. <br />
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<b>Pray for my child. And for me and my family. </b>We need His strength to carry us through, and I need His words to show her how much He loves her. Even though He has not delivered her. Yet.<br />
<b><br />
</b><br />
<b>Be there.</b> I mean, really be there. Don't avoid me because you don't know what to say. If you don't know what to say, say that. Live life with me in spite of the difficulties. Be you. Be there. <br />
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<b>Don't try to have all the answers</b>--in fact, most moms in my situation have so many answers floating around in their heads that they haven't had time to sort through them all yet. I may or may not want to brainstorm. Follow my lead. Give suggestions only if asked. Otherwise, just be there. Hang out. Have fun. Fun is important. <br />
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Obviously, <b>don't compare children.</b> I used to lay awake at night thinking about what I could do to help my children be faster swimmers, the best spellers in class, the best ball-catchers. <em>I'm so over it</em>. Some days I just worry about how I can help my girl get clothes on.<br />
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<b>Encourage me in my efforts. </b> It may be hard to understand why I would not vaccinate younger children or why I would pursue a certain kind of therapy, but I/we (my husband and I) are not making decisions based on whims. For each avenue that we pursue, we've weighed out the consequences, calculated the costs and forged ahead. <br />
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<b>Acknowledge the issue. </b>While I wouldn't want anyone to make more of it than it is, it makes me feel like people think I'm crazy when they discount what I tell them. For instance, people have told me that she'll probably outgrow it--it's a phase. Or that she's perfect when she's with <i>them. </i>Or that she doesn't seem like she's "having trouble". (At this point, I bite my tongue instead of telling them that she seems fine because SHE'S ON SOME POWERFUL PSYCHIATRIC MEDS!)<br />
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</i><br />
<i><b><span class="Apple-style-span" style="font-style: normal;">Play. </span></b> </i>Moms like me live a stressful, worry-filled life. (Will she have to take these meds forever? Will we find a nutritional answer? How will we pay to find the answer? Will she be able to sustain relationships, have babies, take care of herself? Will my other children develop these "issues"?) Like most people going through a hard time, we need to forget about worrying for a minute. We need to laugh and play. <br />
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<b>Don't judge. </b>Right is right, and wrong is wrong; I'm not talking about not acknowledging that. I mean that people don't always know everything that's going on. Like I mentioned, I used to be a classroom teacher. I was a good one, and I was good at keeping control in the classroom. If I saw a child misbehaving at school or anywhere else, I always thought that I could fix it. <i>My child would never behave that way. </i> But now? Now I realize that sometimes kids misbehave because of slacker parenting or poor discipline techniques, but sometimes there is a deeper issue. (I cringe at how arrogant I used to be about parenting.)<br />
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And this might be the hardest thing, but <b><u>don't tell me that I shouldn't have to deal with these things.</u><span class="Apple-style-span" style="font-weight: normal;"> I know that it might seem supportive to say that, but frankly, it just gives me license to have a pity party. Maybe I shouldn't have to deal with these things, but this is our life. This is my girl's life. And I will never give up on her. For some reason that I cannot begin to fathom, God must have thought that I was strong enough to handle this. And I can't afford to feel sorry for myself. Maybe I'm the only one who feels this way; I don't know. But I know how it works in my life. It works much better to encourage me in the journey.</span></b><br />
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At the end of this post, I'd like to tell you that you will probably rarely run into a mom like me....that this is a "just in case" post. But I feel certain that you will run into more and more moms like me as time goes on. Perhaps you will <strong><em>become</em></strong> a mom like me. Because kids who don't neatly wear a label but have serious "issues"...there are more and more of them.<br />
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To read more of our story, visit <a href="http://www.findingmylittlegirllost.blogspot.com/">http://www.findingmylittlegirllost.blogspot.com/</a> <br />
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If you or someone that you know is struggling with these issues, please feel free to contact me at <a href="mailto:tu4two@yahoo.com">tu4two@yahoo.com</a>. mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com5tag:blogger.com,1999:blog-3957342042877116805.post-3215996240310935672011-02-05T12:12:00.000-08:002011-02-05T12:12:00.248-08:00Dairy: 6 Reasons You Should Avoid It at all Costs<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/0O-ehIkwGME?fs=1" width="425"></iframe>mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-28220704228047423542011-02-04T01:57:00.000-08:002011-02-04T01:57:32.866-08:00Ugly WordsThat's what I'm thinking tonight after my kiddos are all in bed. Ugly words. Words that you would not think would come out of my mouth if you knew me. Because my lovely, beautiful, sweet girl is gone again. <br />
<br />
Not only can she not get her clothes on without tremendous fits, but she is saying ugly things to everyone, yelling, screaming at the top of her lungs, kicking her feet.....she is tortured and not able to compose herself. She is irritable and angry and she doesn't know who to be angry with, although we are all pretty good targets.<br />
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Sweet girl cannot get her homework done. She will not stay at the desk and continually comes out to say mean things to people. She is crying out for help. And, God help me, I don't have the definitive answer on what will fix it soonest and best. <br />
<br />
Right now she is taking vitamins b6, b12, d3, zinc, folate, magnesium, fish oil, 4 probiotic capsules a day. And the antibiotic Biaxin for PANDAS. And tonight she took her first dose of Seroquel since November (did I mention that I hate you, Seroquel?) And Abilify in the mornings.<br />
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Seroquel seems to always remove my girl further from me. It makes her so tired and "just there". And after I accidentally took her dose of it in November, I can see why. I applaud my girl for the fact that she has attended school and "functioned" on really high doses of that medication because I felt like I was going to die on a very mild dose of it. I was extremely dizzy and couldn't catch my breath and just felt like I had to concentrate to put one foot in front of the other.<br />
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I hate those medicines. Hate, hate, hate them. But I can't let my girl go on in agony like this. That, surely, does great harm to her....to live in constant mental anguish. So while we're trying to hear God's voice and follow His lead in helping her, I feel like we have to give her some rest and relief. <br />
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For brief moments she is here....when she is crying on her pillow and telling me that she is a "moron" and that she can't stop treating people so badly. And when, as I remind her that God didn't bring this bad thing into her life but that He works all things together for good for those that love Him, she asks when God will be finished using her. She is tortured; I can see it in her almost nine year old eyes. <br />
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This is bad. But we will cling to God, knowing that He is right here with us and asking constantly for Him to bring us through this quickly and to work it all for His glory. Please, quickly, Lord. mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com1tag:blogger.com,1999:blog-3957342042877116805.post-47715681285414016982011-02-02T12:09:00.000-08:002011-02-02T12:09:01.258-08:00Gluten: What You Dont Know Might Kill You<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/yLJSmJ0bMlk?fs=1" width="425"></iframe>mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0tag:blogger.com,1999:blog-3957342042877116805.post-53159837322413857272011-01-30T02:56:00.000-08:002011-01-30T02:56:00.188-08:00Staples of Our PantryBefore this diet, some things that I had to have in the pantry or fridge were cereal, macaroni and cheese, whole wheat spaghetti, juice, lunch meat, cheese, bags of chips for school lunches, etc. Now all of those are out. As in donated or thrown out, not in the house (or someone would eat them....possibly me!).<br />
<br />
Things that I have to have in the house now for snacks (four growing kids and two adults means we MUST have snacks at all times!) and back up for meals are:<br />
<br />
rice cakes, preferrably organic brown rice <br />
Mott's applesauce cups (no sugar added, possibly sweetened with fruit)<br />
green olives<br />
Beanitos (rice and bean chips)<br />
fruit leathers<br />
eggs<br />
beans (pinto, lentils, black)<br />
whole fruit (apples, kiwi, cantaloupe, cherries, blueberries, strawberries, pears, peaches)<br />
Bob's Mill hot rice cereal or<br />
oatmeal (really should be organic so as not to be cross-contaminated with gluten)<br />
almond milk or coconut milk<br />
olive oil<br />
raw baby carrots<br />
fresh broccoli <br />
cherry tomatoes<br />
Chex rice cereal (my daughter loves cereal)<br />
Nuts (like cashews, walnuts or pumpkin seeds, although not everyone will eat walnuts <br />
or pumpkin seeds....)<br />
Laura Scudder's natural peanut butter (nothing but peanuts and salt)<br />
Smucker's Naturals Jam (all fruit) or some similar jam<br />
Some sort of rice pasta and low sugar spaghetti sauce<br />
(now we have this in a pinch instead of mac and cheese)<br />
<br />
I know that I still have a long way to go. We have eliminated so much and added a lot, but I'd like to add more veggies. For now, however, this is what we've got. I know that I can't rush my family (or me) or this won't stick. And this really isn't a diet in the usual sense of the word. We can't ever go back to the way we were eating. Our lives depend on it.mamatufourhttp://www.blogger.com/profile/17670489403159853963noreply@blogger.com0