After Oz

Whew.    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.  

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.

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.

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.

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.

Finally, around 2, she dozed off in the other bed, and I had a chance to get some sleep.

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.

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.

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).

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.

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.

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...

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.

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.

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.

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.

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.

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.

????

Let's just file this post under--Herxing.

Let's Get Real

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.

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?

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.

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".

PANDAS

Lions and tigers and PANDAS, oh, my!  Okay, that was a lame attempt at making the unfunny....funny.  Sometimes you gotta' laugh, right?

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.

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".

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.  It is an infection that causes a sudden onset of OCD and/or tics and other behaviors.   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.

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.  

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.

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.

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.

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).

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.

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.

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.

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.

One More Day Til It Really Begins....I Hope

Today 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.

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 .  And...we have an appointment with her psychiatrist in early April, as well.  

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.

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.

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".

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.

May God bless you and yours and bring healing to each one of you who needs it.

This Must Not Be Depression

It 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.

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.

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
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.

This is all worrisome because I have to be functional for this life to work.

Diary of Symptoms

Sweet 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.

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.

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.

Everyone saw it.  It wasn't just my imagination.

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.

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....."

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.

It was that fast.  Something took over.  And that something has waxed and waned ever since.

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.

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!)

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.

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".

Tender Mercies

My 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.

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.

And I have had nothing to offer her.

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.

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.

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).

I thought she had lithium poisoning.

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.

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.

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.

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!!!!!

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.

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.

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.

And my heart melted.  Because that is the heart that I know is in my girl.  Only a bit more sorrowful and tired.

I love this girl.  She's still in there.