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.

Sometimes You Have To Laugh....Even in the Midst of It

If 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.

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!

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.

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 get ready to get ready.  And then I'd swoop in with an hour to spare and help everyone finish up.

So the gift of laughter first arrived within three or four minutes of being seated in the pew at the church.  My lovely, love-of-my life, wouldn't trade him in for anything, 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.

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!

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.

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.

Then another text.  Pictures of broken glass.  Argh.

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.

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.

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.

just 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.

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.

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 good 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.

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.

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.

So I am now reading Body Ecology by Donna Gates and What Works for Bipolar Kids by Pavuluri.  I'l let you know what I find out....

Sock It To My Girl!

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.)

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.

But one month before school was out this year, we found the perfect socks for her!  Tic Tac Toe 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!

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.  

If you are having issued with sock sensitivity, maybe these will work for you, too!  

After 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.

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.

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).

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.

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.

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.

Sticking With Us Like a Bad Love Song

So 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.

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?

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.

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.

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.

Off to plan the menu.  If you are doing yeast detox, let me know.  Maybe we can "rah-rah" each other.

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).

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