Monday, October 21, 2013

Update on Haylee {3}

Since my last post I have seen such an improvement. So much so that I would say Haylee has pretty much made a full recovery. All of our prayers were answered. I am so so so thankful to each and every person who prayed for my little girl. And I am so thankful He heard each and every prayer and he answered them but reversing the OCD symptoms Haylee woke up with in Maui.

I wanted to document a timeline for my reference.

9/22- Started answering "I don't know" to every question. "I don't know if I took off my nail polish", "I don't know if I can see the turtle" etc. And even after she answered she would continue to bring it up several times. A couple days later she started the "is it ok if I do this?" and she would touch something or do something. "Is it ok if I touch my hair" "is it ok if my elbow touches this?" and sometimes she wouldn't ask "is it ok?" she'd just touch something and say "Mom look it."

10/8- She made it through school the whole week before (still doing the same stuff as she did in Maui) and now that it was fall break I was seeing that she had gotten a lot worse. She was constantly saying "is it ok if I do this? And this? And this?" over and over as she touched different things and scratched things on the table, floor, her bed etc. If I ignored her she would cry and scream "I need to know if this is ok!!!" so I had to answer yes every time even if I didn't see what she was doing. She also started this fake laugh, making a weird noise or saying "oh my gosh", "ewww" or "oh" over and over and saying "did you hear that Mom?" She'd also say "Mom look" and she'd do something weird with her mouth/tongue or squat with her hands on her knees. Another big issue seemed to be her memory. Anytime I asked her a questions she would answer "I don't know." If I asked her if she was cold she'd say "I don't know, am I cold?" Or if I told her to look at the smoke out her window she'd say "I don't know if I can see it, can I see it?" Or when I asked her if she remembered how much she loved the sweet pork tacos she said "I don't know if I remember, do I remember?" I finally talked to the psychologist's assistant who said it sounded like Haylee had PANDAS by the sudden onset of OCD symptoms and she wanted Dr. A (Haylee's pediatrician) to do blood work right away to test for strep antibodies in the bloodstream. I thought it sounded crazy at first but as I read about PANDAS it sounded exactly like what Haylee was going through.

10/9- Dr. A said she felt she treated Haylee's strep appropriately (back in Aug.) and that this blood work isn't necessary but she would order the test. PANDAS is so new and so rare that a lot of doctors either don't know anything about it or don't really believe in it. I just reminded her she referred me to the psychologist and this is what the psychologist wants.

10/11- Dr A called me (this was the first time I actually got to talk to her, before it was her assistant relaying info.) and said "as expected her levels came back slightly elevated." I believe normal is 400 and Haylee was 424 or somewhere right along there. So Dr. A prescribed her the generic form of Biaxin to start right away; twice a day for 10 days. While on the phone with her I went over the connection of strep to the sudden OCD and told her what I knew about PANDAS and that the psychologist said she's seen a few other children lately with the same thing. She sounded shocked because she said it was so rare and I don't think she truly believed this is what was going on with Haylee.

10/15- The "is it ok if I do this?" questions went away!!!! One of the happiest days of my life!!!!!!!

10/19- The "I don't know" responses and the "I don't know if I'm cold, am I cold?" questions went away!! Now when I asked her a question she'll answer regularly. Sometimes she'll have to think about it for a little minute. She no longer does her fake laugh, repeats words (or sounds) over and over or says "Mom look it" while doing something random.

As of today 10/21 Haylee is back to her normal self. I find myself worrying about everything she does trying to remember if she did that before Maui or if it's worse. Like this weekend I noticed her anger was out of control at times. She'd say "don't talk to me" when I told her to stop being mean to Natalee or to quit being so loud. She kept asking Natalee the same questions and if Natalee didn't answer her every time she'd get mad. That has all ended now. She hasn't acted like that since Saturday. Aside from the "normal" fighting with her sister, she is back to her thoughtful, sweet self and I absolutely love her belly laugh and the fact that I see her smile again. Today is day 10 of antibiotics but there is some left so I'm going to finish giving it to her. And of course, praying that the next time she gets strep or Natalee gets strep we don't see the OCD symptoms reappear.

Please continue to pray for Haylee. Pray those horrible symptoms NEVER return!!!

To read my first post about Haylee click here.