Hi,
Since this is my first post, I hope I'm doing it right! I joined this forum because all of you have so much info to share, I hope you can help my daughter.
Here's her story (I'm also going to post on the gluten free part of the forum, hopefully someone can give me advice!):
My now 10 yr old daughter started and eye tic in December 2007, which in 6 months progressed to a back tic so bad she would arch her back violently 5-10 times in a row, catch her breath and start again. She developed severe separation anxiety, fear of death, regression in math skills, general regression and OCD. All this frmo a previously neurotypical kid. Her brother has high functioning autism brought on after a flu shot (not trying to get controversial, but we can pinpoint it to that date), and had a great DAN! where we moved to in Florida. After the tics got so bad that she felt like she couldn't breathe, we went to the ER. Well, Doogie Howser told us we should consider admitting her to the mental health program for a week, and that would cure her.....
My husband and I were convinced it was PANDAS, and our pediatrician believed us. The neurologist she sent us to did a titer, and it was negative. After 8 months, I thought it would be. He did an MRI (neg) and EEG (sleep deprived) which she never truly feel asleep during, but it showed spikes in the occipital and temporal region. He said she might develop seizures later in life, and told us it was all in her head, probly Tourette's and sent us out with a Clonidine RX.
She went into the hospital for an overnight stay because they got so violent they were lifting her off the ground at times and happening every 10-15 seconds. A doc on call cancelled her 24 hour EEG, and a new neurologist gave her a Rx for Resperidal and said she should go to Johns Hopkins for an evaluation. We ended up not taking her because all she was going to get was another Rx and be gawked at - and it owuld have been very traumatic for her to be on an airplane and away from home with all the other things PANDAS brings.
I did not agree with him, and our DAN! saw her, and was shocked. He said he had never seen a case like this before. We did 2 months of Zithromax with no sucess. We also tested for food sensitivities, and she had about 20. We removed all of them, and saw a reduction almost immediately in the behavioral side of it all. She now has 7 tics, all in varying degrees, all at once. Although her DAN! saw her a few weeks ago and was very happy she wasn't as bad as last year, he still can't quite figure out what is going to help. As our kids are some of the first to be seen as having PANDAS, he think that they will disappear after puberty has been completed.
He started her on these supplements immediately:
Taurine 1000 mg 3xday
Tyrosine 250 mg 2xday
Theanine 100mg 2-3xday
These provided her some relief, and her anxiety level went down, and after a few weeks she was still on the couch, but could interact with the family again. Now she is back to almost her happy, energetic self, with a little anxiety left, but it is manageable. She has regained her math skills, thank goodness,as we homeschool and I thought I was just a bad teacher!After another consult with him we added in:
Peter Gillham's Calm
Calcium
Inositol 10-13 g a day
5 HTP 100mg 2xday
Dilfucan (14 days, no change)
Acetyl L Carnitine 250mg 2xday
Cod Liver Oil
Culturelle
MegaFolinic Acid
There has been a reduction in the severity of the tics to some degree, and some ahve disappeared, but the violent back ones as well as the throat continue. The force of the back ones make her grunt. Our pediatrician gave her a homeopathic remedy that actually alleviated the tics to almost nothing for 2 days - but they came back, so it wasn't the right remedy for her. She wants to send us to a chinese herbalist, and I'm trying to save the money to go!
I am hoping someone has something to try that might help us put the pieces of the puzzle together. We can't afford IVIG right now, as we are also tryign to recover my son. Our DAN! suggested GABA yesterday, and we are giong to get that as well as Zinc.
If I am missing anything, please let me know. We have scoured the web and this forum kept coming up, so we hope to find some help. Thank you so much,
Susi
