Dr. K

[lss]

This last recent episode which we are currently in started after he went to the dentist for a cleaning,

 

 

Linda

 

when your son had the dental cleaning, did they use fluoride? My son reacted strongly to it with increased tics.

His teeth have always been a major tic trigger...when younger we always knew when one was coming out or in as he would have increased tics, OCD, tummy trouble etc

 

What in the fluoride is it that makes them tic more? Has your dentist also mentioned a possible link to Celiac disease? This is also an autoimmune disease.

Linda

 

 

 

 

 

 

 

Linda,

It's been a week now since IVIG and Gaby has not had one single tic since the day of the last infusion. You've probably seen my recent post about worrying about occasional odd behavior that's worse than usual and reminds me of last year, but the last couple of days, that's died down too. Overall, she is just much more focused.

 

You mentioned the possible side effects - I know I agonized over that too before doing this, but I think one of the worst ones that I found had to do with potential renal failure, but when I explored that further and some of the other more severe side effects, it turns out that this relates more to people who actually have other diseases that leave them predisposed to those kinds of things - not a healthy young child.

 

I would have to say that the worst of it is the nausea and headaches that can last up to 5-6 hrs on the second night. I can't say that it was pleasant, but it probably wasn't worse than when she had her horrible fever and headaches during the infection which caused all this a year ago. In retrospect, I would do it all again to have gained what we have so far - even if she didn't improve any further than she has now.

 

Dr. K. gave us his cell phone number and said to call anytime day or night while we were in Chicago. I could have called him that awful night and woken him up - he wouldn't have minded. But I was expecting this and we dealt with it. Obviously if something would have gotten worse (like that she needed hydration, he would have helped us out with that) Diana had called him the week before & he was ready to open the clinic for them and start an IV - that wasn't necessary for them either. Pat

 

Pat,

I'm so glad to hear that things are getting better with your daughther. The more I think about it, the more I'm inclined to set it up with Dr. K. Can you tell me more about the doctor in Florida. Did I understand correctly, that they are doing the same protocal as Dr. K, but have just recently started? I'm concerned that they don't have the experience that the Dr. in Chicago has. Is your child sleeping through the night w/o night terrors? What about school, has your child returned to school or have you kept her out during her exacerbations? I just don't understand why more research hasn't been done on this, I know the NIMH stopped for lack of money, but you would think someone out there would want to find out about this horrific thing. My son is still on antibiotics and I did give him a half pill of the tenex, I'm keeping my fingers crossed that this might help with the tics at least until I can schedule something with one of the doctors for IVIG. I also have read on this forum that others are doing IVIG, but several treatments instead of just 2 and that is what this one immunologist that I saw said he would do, if he did it, but I honestly don't think he knew or believed anything about Pandas, he said he was going to look into it and call up to Mayo. Any more info, is always welcome,

Thanks again Pat.

Linda

[Diana]

[Hi LSS - this is Diana in California - EAmom mentioned me before.

 

Dr. K has his own website www.webpediatrics.com - it serves as a brief guidepost.

I can tell you that Yale U. has met with him as of last week because of my son's amazing, rapid recovery - to put it briefly.

This guy is brilliant and kind and just a decent fellow as top docs at Yale agree. They are rapidly working to expedite a paper and/or the like with him.

I am the daughter of a Stanford U. pediatrician. I am very judgmental of doctors!! And you can trust this fellow.

 

Of course, having said that, I don't know the particulars of your daughters case but he could make a fair assessment.

I've talked with 2 original patients of Swedo - now ages 17 and 19 - and they received plasmaphoresus (which is really the LAST resort).

Happily, they are beautiful, talented girls despite the havoc this illness wrought on them at ages 7 and 10. I can explain more details to you later.

 

I'm sure the doctors at Yale would be happy to assist you as well. Please let me know if you'd like further info.

Diana

 

 

[Debbie1]

Are there doctors at Yale that can help with PANDAS?

 

I am headed to Columbia U. (Morgan Stanley Children's Hospital - NYC) at the end of the month. I hear the neurological team there diagnoses PANDAS frequently and they can offer all of the treatment options including IVIG and plasmapheresis.

 

Has anyone else on the board gone to Columbia for diagnosis/treatment?

[EAMom]

Debbie,

Dr. K. is talking with Dr. Leckman of the Yale Child Study Center. (Dr. Leckman is a psychiatrist.)