Update on Haylee's PANDAS journey.

Haylee first showed signs of strep with a fever on Tuesday 3/18 (this is the first time she's had strep since the PANDAS incident). The next day I took her to the Dr but her throat swab showed up negative in the office. Her Dr sent it to the lab to double check and I got a call the following Monday that it turned out positive. So she was put on Biaxin again (3-23 thru 4/6) and had a follow up throat swab on 4/10 that was negative. She had her ASO Titer checked on 4/28 which cam back high (480). I've since learned that doesn't tell you much and getting her ASO Titer checked isn't necessary unless she is showing symptoms of PANDAS again.

I met with Dr Cook, a pediatric neurologist yesterday and although I didn't receive a lot of concrete answers about PANDAS (since it's a new disorder), I felt good about the appointment. He is one of the very few doctors in AZ who specializes (and believes) in PANDAS so I'm thankful I was able to talk to him. So basically we just wait to see if symptoms ever return. And even though it's been 7 weeks since the first sign of her latest strep infection, it's not too late for her to show symptoms. Also, even if symptoms don't appear this time, they still can the next time she has strep. He told me "she is a lucky girl" and that is when I almost lost it. I told him "I know, she had a lot of people praying for her and it was the worst weeks of my life." She is lucky her symptoms weren't more severe and she's lucky that antibiotics alone took away her symptoms. He did say reoccurrences are usually less severe but I am praying we never find out. 

So the plan if she gets strep again is to have the entire family swabbed. Anyone that is positive for strep will be put on an antibiotics. If the PANDAS symptoms ever return I will call Dr Cook and he will prescribe Haylee Biaxin along with ordering blood work. He also briefly went over other options of treatments if antibiotics alone don't cure it. Some of which were $10,000+ and insurance will not cover it. But again, I pray it never gets to that point because I pray Haylee will be protected against any further PANDAS symptoms. 

As always, we appreciate all the prayers on Haylee's behalf. We are forever grateful she was "lucky" and had a 100% recovery. We know it was all due to the power of prayer and being blessed by the ultimate Healer of all.

For now we will cherish Haylee's smiles and even her little sassy attitude. I'll take it any day over what we went through last fall!

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.

Update on Haylee

First and foremost, God is good. I am so thankful for answered prayers. I am thankful for every single person who has prayed for Haylee and our family. I was speechless to see that over 400 people read my blog post about Haylee. As we hoped and prayed, Haylee's blood work (ASO Titer) came back slightly elevated for strep antibodies in her blood stream. Her doctor put her on Clarithromycin Friday night and she'll take that for 10 days.

So far today, Haylee has not asked one single "is it ok if I do this" question. This is HUGE! I am so grateful for every improvement I see. I can only pray that as she continues to take her antibiotic every single symptom she's been displaying will be gone and we will have our "normal" Haylee back. As I read the email from her teacher today I couldn't help but cry- I am happy to let you know she is doing great today and participating today.  Yesterday she just seemed really tired and kept kind of like holding her head up at times.  I asked her if she wanted to go home and if she was doing okay periodically throughout the day, but she told me she was fine.  Today, on the other hand, she seems happier and much more alert. Do I dare say she has turned a corner?

Josh and I met with Haylee's psychologists today and she didn't have a lot of answers like we had hoped. Every kid is different and every situation is different so we have to wait and see what's going to happen with Haylee. It's not a definite, but it seems she has P.A.N.D.A.S by the way the OCD appeared overnight. We don't know if this is going to be a reoccurring problem every time she gets sick or not, only time will tell us that but sometimes future sicknesses will trigger the OCD again. And it doesn't have to be triggered just from strep. So for now we pray the antibiotic reverses all her current symptoms and if it "flares" up again we'll know to immediately do the ASO Titer blood test and put her on an antibiotics.

She could also continue to have minor OCD symptoms that change from time to time. Like it use to be (up until today) that she constantly said "is it ok if I do this?" and she'd say it over and over as she touched/scratched different things. She hasn't done that today but she's been saying things to Natalee and then turns around and asks if she said that. Like she said she didn't want Natalee coloring while they were playing teacher and then she asked me a couple times "did I not want Natalee coloring while we were playing?" or she told Natalee to come upstairs because she wanted to tell her something and then she turned around and said to me "did I want Natalee to come upstairs so I could tell her something?" Just weird stuff like that. She's unsure about things. I asked her if she was cold this morning and she said "I don't know, am I?" She's been doing that all along though. When I ask her a question most of the time she says "I don't know." For a few days she'd say "Mom look" and she'd do something weird with her mouth or squat funny or just do something random. So it changes but I still think she's getting better. Just the fact she can go all day at school without asking her teacher any obsessive questions says a lot.

Haylee will meet with the Psychologist Thursday for the first time. Please continue to pray for a full recovery and protection against reoccurrences.

My hope is to spread awareness about P.A.N.D.A.S and hopefully help another family who's child wakes up with OCD out of the blue one day. If you want to know more about P.A.N.D.A.S our Psychologist shared this link with us today.

Sweet Haylee

During our 2nd day in Maui Haylee started acting "different". It started with her saying "I don't know if_______" like "I don't know if I saw the turtle", "I don't know if I saw the boat", "I don't know if I took my nail polish off" etc. Then she started asking "is it ok if I _______" before she did anything. "Is it ok if I touch my hair", "is it ok if I do this" as she touches something and she'd do this over and over. I was worried sick and just wanted to come home. I thought maybe when we were home and she was back in her routine of going to school she'd quit. As soon as we got home I took her to Phoenix Children's Urgent Care to make sure she wasn't dehydrated or anything serious. I was told she wasn't dehydrated, it was 100% not a brain tumor and physically she looked marvelous. He recommended having her see a Psychologist. Fast forward a week, she did fine at school, didn't ask her teacher any questions but now that it's fall break it's gotten worse. Her primary care doctor referred us to a Psychologist and as I explained Haylee's symptoms and how she is acting she said she wanted blood work done as soon as possible to rule out strep in the bloodstream. This is not the same as a throat swab for strep. She said just this month she has talked to 3 other parents who's child had a sudden onset of OCD symptoms that sounds just like what is going on with Haylee and it is known to be linked to strep in the bloodstream. Haylee wouldn't have any symptoms of strep or feel sick but it's in her blood most likely from when she had strep last. Although her primary doctor didn't feel this blood test was necessary she gave me the lab paper to have it done. I don't think she is getting the information correctly relayed to her or maybe isn't familiar with the connection of strep and sudden OCD symptoms.
She got her blood taken this morning and we are praying the test comes back positive because with antibiotics her symptoms will stop once she is fully treated. This is definitely the easy fix. If it comes back negative, it will be considered behavioral and we will move forward with the Psychologist (and I will lose it).
I was told not to try to correct her because she can't control it. It is heartbreaking to watch her struggle and go through this everyday. My heart is just broken and I have been a wreck these past 2 weeks. Sometimes I get a glimpse of my "old Haylee" with a big smile and her belly laugh but most of the time she looks emotionless.
I ask each and everyone who reads this to please say a prayer for my sweet little girl. I am worried sick.