New to forum, daughter has 7-8 tics from PANDAS

[gfcfmommy]

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

[EAMom]

Did they ever do throat cultures? I would do a throat culture now. Some kids can carry strep for months or years. It can still be PANDAS even if the throat culture is negative though. Grrrr...I just wish more docs would do the cultures at the onset of symptoms.

 

Our dd's titers were low as well...low titers do not rule out PANDAS.

 

I would also try Keflex (or another cephalosporin) or Augmentin if the Azithromycin didn't help. Azithromycin helped us and that was the 4th antibiotic we tried. Unfortunately, Azithromycin doesn't work for everyone. IMO it depends on the child and the strain of strep. Also, some kids just don't respond to antibiotics after a point.

 

Dr. Kovacevic is the most knowledgeable PANDAS doc around IMO...you can send him an e-mail (free) and he will answer you. He also does phone consults (not free). http://www.webpediatrics.com/pandas.html

 

I would also start thinking about doing a steroid burst and IVIG if you can't get significant improvement on antibiotics.

[Pezmom]

Ceftin made an immediate difference for our son (Zithro had stopped working), but when we combined it with Dipan 9 (an enzyme) and EDTA (oral) as sort of a biofilm protocol, we saw very big gains. We were also doing Ribose and colostrum during the first few weeks of the biofilm treatment, but discontinued those two. The IVIG has made the biggest change. He still has some cognitive changes based on the PANDAS attack in the Fall, but is almost back to himself now. His tics (which were pretty severe and constant) are completely gone, his meltdowns, aggressive reactions, anxiety and OCD have lessened considerably, he doesn't have any ADHD or fidgety behaviors, numbers no longer look like a foreign language to him, and his handwriting is amazing. Most importantly, he's beginning to feel good about himself again and can interact with friends and learn. We are still homeschooling, but are thinking he may be able to go back to school for 2nd grade next year.

 

I'm so glad your daughter is doing better. I pray you are able to find the right treatment options for her.

 

Jena

[EAMom]

Jena...

how much improvement did you see with the steroid burst vs. the IVIG?

did handwriting improve at all with the burst? or just after the IVIG? Dd has terrible handwriting/fine motor (dysgraphia)...we think it is from PANDAS. It is making 3rd grade very tough for her!!

[EAMom]

edit--double post

[Pezmom]

We saw very little improvement in behaviors with the steroid burst. We felt there was some improvement, but nothing significant. i don't recall any change to his handwriting at that time. The IVIG is what made the major difference. At our son's tech eval at the school this week, the special ed teacher said he didn't look like the same kid they had seen during his initial eval in November. I showed her his new handwriting examples and she was amazed.