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).

Mike, I am happy for you and your son. That is wonderful. Did they put him on antbiotics? Is it just that in time they got better for him? My daughter came down with strep last month and she is still having really bad eye rolling tics. I am having a hard time dealing with it (she doesnt see this in me though) . She is going to a neurologists next week. Not sure what they are gonna do or say..... Yes, once the tics began and I did some reading on Pandas, I had him checked for strep. When he was positive the Dr. gave him Keflex since our son has had mild reactions (rash) to penecilin. After about a week on these boards I heard good things about Zithromax so we switched him. Looking back I think his body needed time to heal after the initial strep attack. The anti-biotics didn't end the tics right away, but obviously helped get rid of the step. We had been giving him Omega 3 and a daily vitamin, but got more casual about it as time went on. We gave all the kids vitamins in the morning at the same time so he wouldn't feel singled out. All the kids thought Omega pills were "cool" since they were clear and the word "Omega" sounded cool to them (I would often say, "who wants Omega power today!?"). I got a black marker and crossd off "Fish Oil" on the bottle. If they knew what it really was they would probably never take them! If I ever saw an resurge of tics I would give him one 500 mg of Keflex (I had a few left over from the fist prescription I stopped short on). That only happened maybe 2 - 3 times. I can't say if it was needed, but I wanted to be sure I was doing what I could. It has been 5 months now since the sudden onset of tics and the only thing that really remains is the sniffing at night when he is trying to sleep. We will give him melatonin occasionally to help him fall asleep when he claims he isn't tired enough. Almost forgot, we did take him back a couple of times to be sure the strep was gone and also check titer count. As expected the titer count gradually decreased each time we had him checked. In my opinion it was just making sure the problem was being addressed (strep) and giving his body time to recover.

Hi everyone. I thought I would drop in and give an update on our almost 11 year old son who started a pretty severe head shaking tic last March. When he tested positive for strep we chalked it up to PANDAS. A little over 3 months later he is practically back to normal. We might see a tic once or twice a week maximum (usually not at all). He still will sniff while settling down for sleep in his bed, but the tics are so low now that there are no social issues that we so greatly feared. He is not on any supplements or medication. We tried Tenex and it didn't do much for him so we took him off. I think his body just needed the time to recover from the strep infection. Thanks for all of the help. Hopefully the worst is behind us. Mike

My 10 yr old started ticcing early March which we believe was caused by strep. After antibiotics the neck tics for a short time went down a little, but still was over 20-50 times a day (sometimes in the hundreds). Nothing really seemed to make a big difference, even Tenex which I am almost done taking him off of (you have to slowly reduce the dosage). Just last Friday I noticed he was ticcing about 50% less. Sat about 75% less. Sun 90% lessand now almost tic free apart from sniffs before going to bed which are also way down. I am so pleased to see this improvement since we have never seen him this tic free before, but wonder how long waning periods have lasted before for you or your children? Are there weeks where tics go away 100% to just reappear later? I am hoping that this is him getting over the strep trigger and he will be fine (unless he gets another infection).

For those of you who have seen benefits from magnesium, what dosages are you using? Are we talking 100% , 200%-300% of RDA? I am willing to try it to see if it helps my 10 yr old who still has the neck snapping tic. Just want to be sure it is a safe level.

He started ticcing (with a neck tic) for the first time in his life on about March 7th. I had him checked for strep on about the 12th after doing some reading on PANDAS and he was potitive even though he showed no other signs (no sore throat). We started giving him antibiotics on the 13th and I would imagine the strep was gone near the end of March after the full round of antibiotics. We actually started with Keflex for 5 days and then hearing so much about Azith switched over. We did another culture early April and it was negative and was negative again a week ago. He still tics and it waxes and wanes. Usually less in the mornings and increases the later it gets and when he plays baseball. All I can hope for is that he needs time to recover from the attack as the antibodies go down.

I got the same thing. I looked at the optical illision a few times (eyes that look closed) and then threw it in the trash. God does not work through chain letters. Nor is there any reason to believe that those who send those letters speak for God or are any more spiritual than you or I.

I am open to giving him antibiotics to see if the tics reduce. I thought that those who did so would give a lower dosage than if he still had the strep. He was on 1500 mg / day of Keflex to fight the strep. Do you think 500 mg / day would be what it might take?

So our son has had another titer count and after (I would guess) being a about a month strep free has had his titer count drop from 310 to 270 (200 being normal range) . He still tics and it waxes and wanes. He is off anti-biotics. Has anyone else had tics go down once titer count goes back to normal or does it take a little longer since the brain may not have fully recovered. I have always heard it takes months for the count to go down so this seems normal as far as I know. I have had someone else tell me their child took about 4 months for symptoms to go away. I have decided to give him 1 Keflex a week to help with anything since he has a few left and it's a pretty low dosage (500mg). Normal dosage a day was 1500 mg. I just feel like I am in the waiting stage and trying to refrain from smothering him with supplements. I guess my question would be for those who are fairly sure the strep (antibodies) was the cause of the tics in their child. I am interested in the correlation of titers/tics or OCD behaviors.

My 10 yr old who started ticcing first last month was positive for strep, but also has been growing quite a bit these last few months. Probably about 3-4 inches since January. I wonder if there is a link between growth spurts and tics.

What is the dosage for either Azith or Keflex for those who use it prophylactically? How much a day/week and how old is the child? For the long term usage, I heard someone say they follow up a few hours with a probiotic, but does it really matter when you take it in relation to the anti-biotic?