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topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

 

 

 

Well, he was diagnosed with TS after having tics for over a year, that started in first grade. The problem is, I don't remember him having strep anytime right before then. Anyway, I brought him to a neurologist who diagnosed with the TS, but it was fairly mild at that point and would come and go. Pandas will still very new, so my Pediatrician did suggest ABX, but he was only on them for about 10 days. It did not do anything to help. My father is an immunologist and a friend of his told him about the Pandas. That is when I found Dr. B. We are lucky to live only about 1/2 hour away and after my son had blood work done, the strep titers were through the roof. The neurologist still calls it TS and Dr. B says it is not TS. His tics never go away completely - so I am not sure what to think. It is kind of a guessing game as far as I am concerned. We did try Tenex, but it did not work, so we decided not to go the route of medication for right now and see what happens. He is still on ABX, and we are going to see Dr. B in a couple weeks - so hopefully he can give us some more suggestions.

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Well, I suppose we have TS too....must be both?? Tics have not remitted even for a day, or an hour, in over 17 months I believe. Did the steroids help at all? I've heard mixed things about steroids with tics.

Boy, your dad's an immunologist...how awesome!

 

topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

 

 

 

Well, he was diagnosed with TS after having tics for over a year, that started in first grade. The problem is, I don't remember him having strep anytime right before then. Anyway, I brought him to a neurologist who diagnosed with the TS, but it was fairly mild at that point and would come and go. Pandas will still very new, so my Pediatrician did suggest ABX, but he was only on them for about 10 days. It did not do anything to help. My father is an immunologist and a friend of his told him about the Pandas. That is when I found Dr. B. We are lucky to live only about 1/2 hour away and after my son had blood work done, the strep titers were through the roof. The neurologist still calls it TS and Dr. B says it is not TS. His tics never go away completely - so I am not sure what to think. It is kind of a guessing game as far as I am concerned. We did try Tenex, but it did not work, so we decided not to go the route of medication for right now and see what happens. He is still on ABX, and we are going to see Dr. B in a couple weeks - so hopefully he can give us some more suggestions.

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The disadvantage to liquid abx is that you have to go to the pharmacy more often to get refills, as they generally only last 10 days before they start to break down.

I use a locally owned pharmacy, and they give me 3 bottles of dry antibiotics and 3 bottles of distilled water. I mix them every 10 days at home and only need to go to the pharmacy once a month.

 

My daughter is 8 and can swallow small pills, but we give her the liquid mostly because it's easier to get the correct dosage with the liquid.

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Well, I suppose we have TS too....must be both?? Tics have not remitted even for a day, or an hour, in over 17 months I believe. Did the steroids help at all? I've heard mixed things about steroids with tics.

Boy, your dad's an immunologist...how awesome!

 

topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

 

 

 

Well, he was diagnosed with TS after having tics for over a year, that started in first grade. The problem is, I don't remember him having strep anytime right before then. Anyway, I brought him to a neurologist who diagnosed with the TS, but it was fairly mild at that point and would come and go. Pandas will still very new, so my Pediatrician did suggest ABX, but he was only on them for about 10 days. It did not do anything to help. My father is an immunologist and a friend of his told him about the Pandas. That is when I found Dr. B. We are lucky to live only about 1/2 hour away and after my son had blood work done, the strep titers were through the roof. The neurologist still calls it TS and Dr. B says it is not TS. His tics never go away completely - so I am not sure what to think. It is kind of a guessing game as far as I am concerned. We did try Tenex, but it did not work, so we decided not to go the route of medication for right now and see what happens. He is still on ABX, and we are going to see Dr. B in a couple weeks - so hopefully he can give us some more suggestions.

 

Well, the steroids made his tics worse at first, but I do think it helped clear up his sinuses a lot which allowed the antibiotics to work properly. Dr. B told us that the abx will not work if his nose is inflamed. So, that is where it did help. I have also heard of steroids making things worse, but it could be due to herxing - that is what I was told by some other people. Honestly, I did not keep him on as long as the doctor wanted. My pediatrician felt like it was too long for my son to be on steroids, so I started tapering after 5-6 days.

 

It is really hard, because you are dealing with so many doctors, and they will all tell you something different. I don't know exactly what is going on with my son, I just wish he would get better. Right now, he is doing great, but that could change at the drop of a hat.

 

My father is an immunologist, but not really familiar with this condition, however, he has a lot of connections :) So,yes, that does help. I do think that because people and physicians are just learning about this condition, there is still so much to be discovered. I am just glad we did find out about it now.

 

Good luck :)

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