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rosalyn

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  1. Hi, My son was diagnosed with Sydenham,s Chorea at age 7. When we moved to the states 2 years later the Dr.'s here said it was Tourette's. Regardless, where one condition begins and the other ends is a blurred line. Starting a new school and the associated stresses made his tics much worse. We found a psychologist in Weston, Fl who worked with him on habit reversal. Although his tics did not completely disappear they did lessen quite substantially and the point being that the psychologist was attempting to give him lifelong skills to handle some of the triggers that set him off. Unfortunately, my son only saw him for about 6 months before we moved to VA but he did help. My son has been great for the last 18 months until 2 months ago when, after a very stressful ordeal at a summer camp where he was bullied, they came back with a vengeance. We are now in VA and are struggling to find someone who deals with HRT. While we feel this is an appropriate route to go to help our son in the long term it does not really help in the short-term and so we are also looking for complimentary support ( environmental/holistic/natural).
  2. Maybe a poll should be conducted. My 8 year old SC/PANDAS had chickenpox vaccine at 11 months. My 6 year old never had the shot but contracted chicken pox naturally, he (fingers crossed) shows no signs of PANDAS type behaviours. The reason he got the shot was the Dr. suggested I should as cp was going around and he was anemic at the time, so i'm sure his immune system would have been compromised.
  3. I may be wrong (and probably am) but I was always under the impression that using a broad spectrum antibiotic such as Augmentin, targets all bacteria including the natural bacteria in the body that tends to keep yeast down. Hence if you are killing off the bacteria that subdues yeast, you then in turn get an overgrowth of yeast. Like I said could be wrong. Ros
  4. I think you are right. When this all kicked off and Tom had his MRI done it showed he had quite a bad sinus infection which he didn't really complain much about. May well be he has another, especially since he is getting alot of headaches lately that I have thought have been due to his head and eye tics. I know it won't to any real harm doing this I think I am just scared of doing the wrong thing. Thanks for the support. Ros
  5. I will have to join the list of much of it being over my head too. Whats worse my undergrad was in Biochem ( mind you been several decades since I did anything with that degree). I think alot of the problem for me is I need to start at the beginnig and work my way up. Having just joined this site I suddenly get thrown into some high tech topic and I have to sit there and think "what was that again? ". Its like you need to read it all with scientific dictionary at your side that can put it into simpler terms. Oh well hopefully will get there in the end. Roz
  6. I am tempted to put my son on a course of ABx without Dr. guidance. I'm scared to do it but think it may be worth a try to see if it helps. Living in the Middle East I can get virtually any ABx over counter without a prescription. Also living where I do I have absolutely no Dr. support even though I have taken sons SC/PANDAS diagnosis from UK neuro into their offices. Their reaction is that the neuro is wrong b/c he considers this a third world country ( which between you and I very much is) and in their eyes b/c it is not, this is the wrong diagnosis (still trying to figure the logic on that one). Anyway what has got me started on this is basically reading all the posts here. I wrote before that my son has been diagnosed with Sydenhams chorea but instead of improvement has lately been getting much worse. More tics, emotionally fragile, ADHD type behaviours etc. This has been going on without any remission for about 5/6 months now. I just don't want it to get worse. He is currently on 250 mg PEnicillin V BID. So I am thinking of self-medicating him with ABx just to see if it helps clear or improve symptoms.I don't really know which ABx would be best or what dosage or for what length of time ( 8 year old boy, about 62lbs). It may also help in seeing if his SC is PANDAS as there is some debate about this. We are moving to States at end of Feb. and I could wait but by time we get settled find a good Dr. it may be months away. Am I absolutely out of my mind considering doing this without guidance. I know ABx is not a medication that could kill him I just don't want to do something that in some kind of way make things worse. Any advice would be helpful. Thx Ros
  7. "Well, I would go back and have a throat swab rapid and culture done 2 weeks post meds. I am guessing she doesn't want to do prophylactic antibiotics or have you not asked yet? One thing you can mention is your concern that the amoxicillan may not have been the right antibiotc to wipe out the strep entirely. This is an article about the failure rate of amoxicillan.This may buy you a whole new prescription from her" Re Vickie's post here : I just asked a few questiions on another thread basically wondering why my son was on penicillin V tabs rather than augmentin, and then moved to this thread. Now I really am confused I thought augmentin is amoxicillin. If it has been shown to be realtively ineffective then why so many taking it? Roz
  8. To quote Vickie "Well, I would go back and have a throat swab rapid and culture done 2 weeks post meds. I am guessing she doesn't want to do prophylactic antibiotics or have you not asked yet? One thing you can mention is your concern that the amoxicillan may not have been the right antibiotc to wipe out the strep entirely. This is an article about the failure rate of amoxicillan.This may buy you a whole new prescription from her" Re Vickie's post here : I just asked a few questiions on another thread basically wondering why my son was on penicillin V tabs rather than augmentin, and then moved to this thread. Now I really am confused I thought augmentin is amoxicillin. If it has been shown to be realtively ineffective then why so many taking it? Roz
  9. I seem to be missing something here. My son is on Phenoxymethylpenicillin Potassium aka Penicillin V tablets rather than augmentin. I was told that this is basically the same as the injectable form but because of the pain of the shot and his age and size best to do tablet form. The neuro said that this abx specifically targets strep whereas augmentin is broad spectrum and goes after various types of bacterial infections but also augmentin has alot of side effects specifically GI. I am wondering why so many are on augmentin rather than penicillin V tabs. Given what I was told or have I been misinformed? Or does it depend on the severity and range of symptoms? Or has it something to do with contraindications with other drugs? Just curious really to see why Augmentin is the Rx of choice here if what our neuro says is true. If someone has the answers would love to know. Thanks Roz
  10. Hi Deagar My little guy is actually at his best in the morning and progressively gets worse as the day go on ( usually but not always). At first I asked him about it and he said it was like a tingly sensation that built up in his tummy sometimes high legs and would tickle him all the way up. Now he says it is just something he has to do. I find the more it is discussed the worse it gets and so now we don't mention them unless they are really bad and I know he is getting a bit worn out with them. At tht point I just suggest he lies down for a quick relaxing time or would he like a little massage. This doesn't help the tics much but does seem to destress him a little. I know he tries to supress them as much as he is able at school and he does tend to come home twitching away. I don't know how long this will go on or if it will ever stop and so I now feel that for us it is best to ignore them. There is nothing anyone can do and so I feel by pointing it out just makes him aware of the fact that he is doing something different which has the potential of drawing his attention to it even more, making it worse. Most of all I want home to be a place where he feels safe to be himself and know he is not being scrutinized, they probably have it hard enough out of the house without me adding to it. God Bless them, these lovely wee children going through these difficulties. Hope that helps Roz
  11. I honestly don't know what the difference is and when I asked Tom's neuro he jus said "that's a good question" and "really there is no clear cut distinction" .... What I do know is that if it is SC they must have their heart checked because apparently there can be damage to heart involved. Thakfully in our case this was fine. The neuro said because of the types of movements he sees in Tom he is more inclinded to think it's SC. This is the problem I have. With SC there is supposed to be an end in sight. Basically I was told a few months to 2 years max and we should see almost total improvement with it only rearing its ugly head in the future at times of very high stress situations or quite severe illnesses. Over this recovery period of max 2 years although it would ebb and wane what we should see is episodes lasting for a shorter period of time and the length of time between episodes getting longer. We did see this the first year but 14 months into it, it all started again with a vengence, and with basically no let up for the past 6 months. Not only that we are now seeing a type of vocal tic, not quite grunting but just a small burst of sound that comes from the back of his throat as well as added ADHD type behaviours. So much for it all disappearing. I feel guilty because I have done what I was told put him on penicillin V 250mg BID and sat back and waited for it to go. Now after reading this forum I feel there could have been so much more that I could do. None of the suggested tests were done - In fact I was told by the docs here in the middle east that "SC does not exist here what do those western dr's think we re a third world country?" Obviously a stigma attached to the disorder and so no one here is on board. When we get to the states this will be my first priority. I do find it interesting however that many are put on augmentin. I was told by my neuro ( UK neuro) that augmentin is broad spectrum where as penicillin V specifically targets strep with less side effects. Is there a difference? Just as an aside my son also has the strangest tic - he tics towards the light/sun . When ever he has his head/eye tic they always move in the direction of the strongest light or the sun if outside. I asked the Doc about this and they just said "it's one of those things" Wishing you all the best Roz
  12. Hi Faith I am new to this forum but I can totally relate to your thoughts. My son was diagnosed in summer 2007 with Sydenhams chorea. He didn't seem to meet the profile and I like you have so many unanswered questions. I just wanted to add to what Vickie said. False negatives are notorious in Strep tests, so even though he tests negative does not necessarily mean it is. My son also wakes with sore throats every morning - I think it is a sinus thing to because he often sounds a bit nasally. My rule of thumb is after all that has happened if he has a sore throat with a fever, anything above 38C (not sure what that is in Farenheit about 100F I think) I put him on antibiotic. Fortunately like your son my son also has only one or two major sicknesses a year so it is not too often I have to do this. For me its a case of rather be safe than sorry. We will have to deal with superbug after we deal with this. Best Wishes Roz
  13. How does one get to participate in this research trial? Would we need to be in Oklahoma? Is there somewhere I could find out about it to see what is involved? I will definitely have all these tests done once we get to Florida, at the very least they will alleviate my constant fear that he has been misdiagnosed. So the good news is that the echo and MRI were clear -- that largely rules out ARF, ADEM, and MS. Does your son present with OCD symptoms too (or just the tics)? Tests that would probably be helpful would be differential WBC (check for elevated monocytes and eosinophils to rule out other neuropathy), flow cytometry (check for CD4/CD8 ratios and check for infection) and the IgG subclasses (rule out immune deficiency). When lab reopens, worthwhile to see if your son can participate in the Cunningham research trial at Univ of Oklahoma. Wishing you the best, Buster
  14. It sounds as if our sons our twins. Same time , same symptoms. Do you think it is possible that it may start off as one and merely transition to the other? The tics my son have at the moment are mostly head, and twisting of the neck and his eyes move sideways not rolling but more a forced movement. This results in him getting alot of what I assume are stress headaches due to the constant movement. When I think about what a confident , really clever little fellow he is and for him to have changed so much it breaks my heart. I worry so much about his future, and now with the move to Fort Lauderdale I worry about him making new friends. As soon as we get there I am going to actively pursue help for him. I am sure there must be someone in the Fort Lauderdale area or close by. Although I have seen references to all the Dr.'s you mentioned I am not sure where to get a hold of them. I see there is a link to the docs on this forum and will have a look through that. I really want to thank everyone that has responde to me. It is a great support having others out there who understand.
  15. I am new to this site and thank peglem for putting me in touch. I read Dr. T's post and replies with great interest. I must be honest and say that being somewhat new to it all alot of what was said in these posts are a little over my head. However what I do understand is that there are a variety of tests that if not point in the direction of PANDAS can at least eliminate other potential disorders. I am concerned because my now 8 year old son was diagnosed 18 months ago with Sydenhams chorea and virtually none of these tests were done. Although he did not present with the usual writhing motions of severe SC cases; because of previous exposure to Strep and fairly severe tics, the neuro was convinced this was what it was. He was put on penicillin for 10 days 4X daily and is now on 500mgBID. Over the first year we saw a great deal of improvement but in the last 6/7 months he has unfortunately gone down hill again, his tics are as bad as they ever were although appear to be more localized in the neck, face, eyes. rather than whole body but what has become really bad that was not particulary evident in the first year is the ADHD like behaviour, inattention,silliness, emotionally liability. I realize this disease, like Pandas, ebbs and wanes but is it possible to regress after 18 months to a state worse than he started and for such a long period of time (5-6 months)? I worry he is not getting the appropriate medication especially if the diagnosis is incorrect. Reading all these posts makes me feel that he possibly has PANDAS rather than SC although the distinction appears to be virtually negligible. It does however matter if there are alternate forms of treatment that can help him. After reading Dr. T's post I am amazed to see that virtually none of these tests were carried out ( we live in the Middle East- so no wonder). An ASOT titer was done 6 months after the initial episode and found nothing, a cardiac echo and MRI all showing nothing. I am now starting to doubt the SC diagnosis. My question to you is; Is it too late to try to have any of these tests done? Thankfully, We are moving to the U.S. in February and I am not sure whether there are other options to be pursued.
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