PANDAS Deja Vu

Hello, 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.

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.

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.  

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.  

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.

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.

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.)

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.  

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.  

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.

So we stopped azithro and started clindamycin for staph.  Fear came back.  

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.  

Scrapbooks

A 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.

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.

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.

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.

So we've held on to this situation while continuing to search for answers.  Desperately search.

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.

I noticed how much younger my husband and I looked.  But I also felt 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.

And I wondered if my children even remembered that mom.

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.

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.  And what kind of parent lets their child grow up with this distorted state of normal?  This will certainly shape who she becomes.  We will continue to search hard for answers, including methylation answers, auto-immune answers, lyme answers.  But if things don't change soon, we will have to make some hard decisions in the best interest of ALL of our children.  

Please, Lord, bring some relief soon!

Turnaround?

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.

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!)

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.

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.

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.

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.

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.

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)

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!)

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.

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.

My daughter needs a break.  Her siblings need a break.  Her parents need a break.  We want our family back.

A Legacy

I 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.

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.

What will be the legacy that I leave my family?   

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?

The legacy that I wanted to leave was one of presence.  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.

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.

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.

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".

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.  

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.

However.

If today were my last day on this earth, I think the best legacy I could hope for would be:

Persevere.

Perhaps that is enough for today.

Who Would Dream This Up?

Pardon me, I am feeling a little sour today.

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.

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.

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.

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.

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.

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."

"Really?"  he said.

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.

I'd Say That's Pretty Accurate

Laugh and the world laughs with you,
Weep and the world goes away.......

I've heard this line from a poem many times, but recently while reading The Book of Virtues by William Bennett, I ran across the entire poem.  I'd say it's pretty accurate.....

Strep, 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.

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.

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. 

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.

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.  

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.

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....

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.

 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.  

http://childrenshospitalblog.org/one-mothers-story-how-strep-throat-attacked-my-childs-brain/

http://www.foodsmatter.com/asd_autism/miscellaneous/articles/pandas.html

http://www.ocfoundation.org/ocdinkids/parents/PANDAS_story.aspx

http://www.raisingarizonakids.com/2012/07/pandas-my-brain-is-making-me-do-this/

(ugh...none of those links are working correctly...you'll have to cut and paste them to your browser bar....sorry :(  )