Mike

I know Dr. K had a bogus story about Dr. Swedo on his site and I let him know it. I think he took it doen since then. He said she did a certain study about a supplement she denied doing. Anyway what do you mean by pulse corticosteroids? Prednizone every once in a while?

Our 11 year old son who started PANDAS symptoms 1 year ago just had his tonsils and adnoids removed last week. The Dr. said it was a wise move. We discovered the tonsils went far deeper than expected and his adnoids were causing 70% blockage. He is recovering now and I will let you know how it goes. He started the blinking/neck tic last March and then it stopped about 3 months later for almost 3 months. It then started again a little less severe for another 2.5 months and stopped again. I noticed a few tics again in Dec thinking it would come on strong again but it never really did. For the last few months it's been rare enough not to be an issue. It was as if each reoccurance was diminishing in the tic frequency. We don't do anything other than multivitamins and we have given nistatin every once in a while. I can't say I can see a definite trigger for the onset.

While "many" may have issues throughout their lives, all the articles I have read say TS symptoms usually get much better in late teens years. Anyone have any figures? Hes just one DAN Dr. I wouldn't take his opinion too heavily.

What was the prescription for?

My wife came home this morning after talking with another mother who has an 8 yr old who started symptoms of PANDAS the same month as our son did. They went to the same school at the time as well. After he had strep the tics began for the first time. I thought this was an amazing coincidence. I wonder if there are certain strains of strep that cause PANDAS.

Our allergist thought that tonsils could harbor strep in some and could hut more than help. He said that they really aren't needed in older kids. I know many Dr's say different things, but I am just relaying what he told us. He referred us to a ETN doctor to discuss further. I assume he would know more on the subject. They did the skin tests on our sons back. He didn't react to any of them, but that doesn't mean certain things don't trigger the immune system. I am not surprised he was found negative on all the tests.

Yes, we will try it. It's only for 9 days. 3 pills for 3 days, then 2 pills for 3 days, then 1 pill for the last 3 days. He said it could make him moody and trigger anxiety at first. So we are expecting a flare up of some kind.

We got back from the allergist today and he is pretty open minded about treatments. Our 11 yr old came back negative on all the tests, but the Dr. said that doesn't mean certain things do not trigger the immune system. He said the immune system can be set off into overdrive and thought this might be the case. Before we mentioned PANDAS he asked if there was a certain event we can think of that started his symptoms. We asked him if he ever had heard of PANDAS and he said he heard about it just that very morning for the first time from another patients mother. He wanted to do one session of Prednisone which he said would call off the immune system in case it was overreacting. It is a steroid, but he said one round it totally safe. I think he wants to see if it makes a difference. When we told him about possible yeast issue in the gut he said there are many Dr's who differ in opinion about what yeast can do to you. He said he would let us try Nystatin if it looks like he has a yeast problem. He said probiotics are also a good thing to keep up. He even seemed open to trying low dosages of anti-biotics if all else failed. Since strep has been a problem he also thought we should see a Dr. about possibly removing tonsils. He said after someone 6-7 yrs old they don't really help anyone anyway. I think my wife is all for that since she had hers taken out in her 20's and would have rather done it earlier.

Here is an email from Dr. Swedo- "Thanks for sending me the link and the information. We never used N-acetyl-glucosamine in any trials however! It's an interesting idea, but we haven't conducted any studies on it and have no advice about its utility. -Sue" I wrote the website to see what their source really was.

"N-acetyl-glucosamine In their recent publication Swedo at al. used N-acetyl-glucosamine effectively to block the nerve receptors presumed to be "attacked" by the auto immune antibodies in PANDAS. Taking into consideration that this compound is readily available, that does not have any known side effects and is inexpensive, N-acetyl-glucosamine could be conceivably used as an adjunct to therapy in PANDAS recurrences." Has anyone tried this? What dosages did you use?

I cam across a site I had not seen before with some interesting PANDAS info and case studies. http://webpediatrics.com/pandas.html Now myson fits all criteria but has never had a steroid burst. What is this and who would give it? Anyone ever have this done? They have great things to say about IVIG, but how invasive is this? PANDAS diagnostic criteria (1) Current or past presence of symptoms (DSM IV) of Obsessive Compulsive Disorder, Tic Disorder (including Tourette's), Autism or Autistic Spectrum Disorder, and Anorexia Nervosa*. (2) Symptom onset between 18 months of age and puberty. (3) Episodic course of symptom severity characterized by the abrupt onset of symptoms and/or frequent, dramatic symptom exacerbation. (4) Symptom exacerbation associated with beta-haemolytic streptococcal infection. (5) Presence of abnormal Neuropsychiatric examination, including motor hyperactivity, adventitious movements, tics, etc. (6) Measurable clinical improvement following "Steroid Burst".

Sorry, what is a "DO"?

We are taking our 11 yr old to an allergist for testing Oct 5th. I feel like I am going in there and saying "test him for everything", which I assume can't be done (or can they do a panel for jsut about everything?). What advice can you give me? Can they do blood tests as well? I obviously would like to get as much done in one visit as possible. I am just afraid that a PANDAS child can have things trigger tics, without him actually being allergic to it.

I still am not clear if we should try an boost the immune system with a PANDAS child or not. If the immune system attacking the wrong side is a problem, then why would we want to boost it? Has anyone tried immune boosters and ever had any tic reduction or improvements. Did it make it worse?

Well, I guess i jinxed it. His neck tics just came back 3 days ago. We are having him checked again for strep and doing a blood test to see titer counts. While it's disappointing, the fact that he was just about 2 months tic free still gives me some hope. I can't think of anything that would have triggered it. Maybe this is waxing and waning, but I had no idea it could wane for 2 whole months (unless it's just another case of strep again).