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Everything posted by PKM

  1. That's very interesting......when my son was first diagnosed with Sydenham's we noticed some memory problems and they lasted for a couple of months. He had always had an excellent memory before and the memory problems seem to have disappeared now. For example sometimes we would be driving somewhere (like to a doctor's appointment or to visit my parents or something) and he would suddenly forget where we were going - even though he knew where we were going 2 minutes before. He just "forgot". This was very strange and very out of character for him. He also always forgot where he put things (also out of character for him). Perhaps the high CamKII that was causing the problem??? PKM
  2. I too am primarily on the PANDAS forum. My son was diagnosed with Sydenham's 14 months ago. He presented with chorea and tics. He continues to have exacerbations with immune system challenges. We tried Kids Calm as well as Epsom Salt baths. The magnesium seemed to do the opposite for him (it made his movements worse and it made him have a lot of trouble sleeping). We tried Clonidine for the chorea and tics as well but that also made his movements worse and also gave him a lot of trouble sleeping. I'm thinking that if the movements are not caused by TS but have a different etiology then maybe what usually works for TS tics is not terribly effective for Sydenham's/PANDAS tics??? This was just our experience but I thought I would share. Perhaps there are some other PANDAS families who have found success with magnesium and they too will share experience. PKM
  3. I hope it gets better for him soon - it is not a very pleasant sensation. My son had the sensation almost constantly (feet only) and it sounds like your son's comes on him suddenly and then goes away shortly thereafter?? That must be a little scary for him - never knowing when it will come. So many strange symptoms seem to be part of post-streptococcal disease (be it Sydenham's or PANDAS). Do you know why his symptoms are coming back (another strep infection or some other sort of immune system challenge)??? PKM
  4. When my son was first diagnosed with Sydenham's, he had "shocks" all over both feet. He didn't scream when it happened though (good thing because the symptom was a pretty constant one!!). He compared it to when your feet are asleep "really really badly........only kind of different". This symptom eventually went away and has not returned. I don't know if it is at all similar to your son's "shocks" - but I thought I would share in case it helps! PKM
  5. My son used to have frequent bloody noses. Once I put a humidifier in his room they stopped (his dry skin improved considerably as well!). PKM
  6. Thanks Vickie and Peglem I didn't think Swedo was actively seeing/treating patients but I thought if she was, someone here would know about it. (My son's neurologist was wanting to refer him to Swedo but I don't think she will be able to see him. Swedo may point us in a different direction though.....) Thanks again. PKM
  7. Does anyone know if Dr. Swedo still sees patients??? (Or is she pretty much kept busy with research, speaking engagements etc.) If anyone here has seen her - how was the experience? Thanks PKM
  8. I thought the original post also had the new PANDAS website's address listed as well?? Does anyone have that address/link and can it be posted here in this new thread? Thanks
  9. What symptoms is your child presenting with that make the doc's think Kawaski's??
  10. step 3 ivig.... and even if it is pandas and i am not trying to scare anyone but i'm freaked too...60-80% chance it works and that's if i can get insurance to cover!! I can't give any insight regarding the steroid burst decision..........I too may be facing that decision sometime soon and I really don't know what I'll do either. Even though my son's case seems very much like post-streptococcal disease (he was diagnosed with Sydenham's one year ago - he had a lot of chorea and also a lot of tics - things keep getting stirred up with any sort of immune system challenge). Despite this I still wonder - could he somehow have TS too and I might make it worse by giving him a steroid burst??? Tough decision. I noticed that Dr.K told you that the IVIG only has a 60-80% chance of working?? Did he mean 60-80% chance of only one dose of IVIG working but that more doses could work (some children seem to have several doses of IVIG). Also, did he talk about doing plasmapheresis followed by IVIG instead because your son's issues are primarily tic related? I noticed on his Autism One Radio Program interview he stated that this course of treatment was superior to IVIG alone for children who have tics as their prominant or hallmark symptom. Did he address this at all with you? Also did he suggest that he would keep trying to work with you and your son if the first IVIG did not prove to be successful? I thought I had read somewhere that Dr. K had a fairly high success rate at treating these kids - 60-80% doesn't seem that high to me - unless he plans to keep working with you and try other things if that first IVIG doesn't work (I thought I read that he was closer to 90% successful at treating these kids). Thanks PKM
  11. Hi Lori. I too am from Canada and we are trying to work through many of the same problems as you - no doubt. We do have a really wonderful pediatric neurologist who even went as far as contacting 3 of the big names from the US last week. 2 of the american specialists did reply - but it seems my son's doc. was looking for more concrete evidence as to why these treatments work/their reasons behind using these treatments etc. Sadly there really is no standard protocal of treatment yet and this bothers her a little (understandably - the 2 docs gave her very different "thoughts" re: treatment options). Anyhow - my son's history is long so if you are interested maybe you can PM me - then maybe we can chat on the phone to compare notes and share info etc. PKM
  12. I am a little confused about IVIG treatments as well. I get the fact that the high dose is done to temporarily shut down the bone marrow - "re-booting" the child's immune system so to speak which makes perfect sense. However, I thought that our immune systems keep a sort of "memory bank" of all of our antibodies (even after PEX and IVIG). I understood this to mean that we would always have a "copy" of all antibodies - both good and bad - that could be called upon when needed (or in cases of autoimmune illnesses - not needed at all!!). I thought this was why we didn't need to be re-vaccinated (for things like MMR etc.) even after PEX or IVIG because we should still have "copies" of those antibodies. If we keep "copies" of all of those good antibodies then why wouldn't we also keep "copies" of the bad antibodies?? Couldn't those bad antibody "copies" simply get called upon when the body thinks it needs them and then the body will manufacture more new bad antibodies (just like the the body would do if it suddenly encountered measles and it had been vaccinated against MMR (for example) before it had IVIG or PEX - the body would then find a copy of the antibody it needed to fight measles - manufacture more of the antibodies and fight the illness (in theory of course)?? As you can see my background is not in science!! This does kind of confuse me about PEX and IVIG though (the wheels were spinning around last night)!! I just don't get how IVIG and PEX can successfully separate the good from the bad antibodies. If anyone thinks they can help explain it I would really appreciate it!! Maybe even someone who sees Dr. K could ask him a little about it (If he is open to these types of discussions.)?? Thanks
  13. I replied to the poll and checked off "other" for my husband's occupation. He is an accountant. I wonder if there is a possible "common" link there (almost similar to engineer really - good at math??) This is one that I do wonder about - my son is really good at math and always has been really good at math (he has been able to figure out rather complex mathematical ideas/concpets on his own since he was very small). Sammy was/is also very gifted in math. I wonder if others have noticed this in there PANDAS kids as well??
  14. Has she been on any antibiotics other than amox and azith?? Ever tried augmentin or keflex?? Have you already tried IVIG or PEX?? The roller coaster is awful - I know what it is like to just want your child to get better - it doesn't seem fair. Don't give up - keep plugging away - there are success stories out there. There just doesn't seem to be a standard treatment that works for every child - don't give up hope that something will work.
  15. If Pen VK is supposed to be the antibiotic of choice for strep - why does it seem that Augmentin and Azith work better for children with PANDAS?? Also, does anyone know if Augmentin and Azith are as good as Pen VK at preventing any possible new strep infections? Just trying to wrap my head around this a little better. My son was diagnosed with Sydenham's (I really think Sydenham's / PANDAS fall within the same spectrum) about one year ago. He is on Pen VK prophilactically. He had been doing really well but he has suddenly taken a turn for the worse. He has had 4 viruses in the last 6 weeks and his body has just not been able to cope very well with the last 2 viruses. I am wondering if we should switch him to Augmentin XR but I am just not sure. Any thoughts / insights would be greatly appreciated. Thanks
  16. That is wonderful that your son is doing so well! You must be thrilled. My son (8) was also diagnosed with Sydenham's (about one year ago) and he was put on Pen VK prophilactically. His primary issues have been related to movment - mostly chorea and tics. He did have some emotional lability but that is gone and it was pretty short lived. He has never had anything that resembles any OCD or even OCD tendencies (and I have read closely what people have described as OCD on this site and elsewhere). My son was progressing nicely up until a few weeks ago. He has had 4 viruses in the last 6 weeks and he has had some VERY difficult days movement wise. I am starting to wonder if it might be a good idea to switch him to Augmentin XR. I am wondering if your son was on Pen VK prophilactically and you switched him to the Augmentin XR or was he on nothing prophilactically before you started the Augmentin XR?? Any movement issues with your son or has it always mostly been OCD related issues? Thanks
  17. My son was diagnosed with Sydenham's Chorea about 1 year ago (had a sudden onset of severe chorea and tics post strep infection). He is still having some issues. In the fall the neurologist wanted to try him on clonidine to see if it would help him with the movements. His movements became worse on it and he had trouble communicating verbally while on it (the movements were so bad that they kept interfering with his flow of speech). Moreover, he had a lot of trouble sleeping while he was on it (trouble falling asleep and trouble staying asleep). I do believe that it is rare for a child to respond to clonidine in this way (usually they have an easier time falling asleep and I don't think it generally makes movement issues worse!). We also found that my son responded in a very similar way to magnesium (Kid's Calm) - it just seemed to make his movements a little worse and it kept him awake at night. Maybe this is because the etiology for TS and post-strep issues is different??? I really don't know but whatever we try that often works for kids with TS only seems to backfire and do the opposite for him. This was our experience with clonidine. That being said I wouldn't be afraid to try it because some kids do very well on it (and if your child doesn't do well on it you can always take him off - just make sure you taper him off slowly otherwise you can really mess with his blood pressure).
  18. My son was diagnosed with Sydenham's Chorea about 10 months ago (sometimes we wonder about PANDAS though). Nonetheless he is somewhere on the Sydenham's Chorea/PANDAS spectrum. Right now he is doing very well and he continues to improve as the months pass (just a very long recovery!!). About 6 weeks ago he had his first dose of the H1N1 vaccine (in the arm - not the nasal mist). He did not appear to have any sort of a reaction to the vaccine. He had his booster H1N1 vaccine about 2 weeks ago - again no reaction - no setbacks of any kind (yet). At this time, he continues to slowly progress and get better despite the vaccines. That being said I would not have given him the vaccine if it weren't for his underlying health conditions. Moreover, I have no plans to give him any future vaccines for a very long time (unless we have another pandemic.....). PKM
  19. Oh wow.....! Thanks so much for posting that! (Sometimes it seems like nothing is ever being done for PANDAS in Canada!) I will bring it to our next neurology appointment. Thanks again. PKM
  20. Thanks so much. I really appreciate it and it is hopeful to see at least one doctor listed there!! When I reach the "brick wall" in Winnipeg (which I no doubt will at some point!) I will contact him for sure. Thanks again!
  21. I too am a fellow Canadian (Winnipeg). I'm always looking for fellow Canadians on here because our experience with our health care system is so different than in the US. I'm just wondering where abouts you live and if someone has actually given you a formal PANDAS diagnosis here?? Also did you ever do the Cunningham tests and if yes did you have the blood drawn by someone in Canada or did you cross the border to do it??
  22. I didn't really know what to do regarding my son and the H1N1 vaccine. He was diagnosed with SC about 10 months ago (although not sure if it might be PANDAS). He also has some underlying health issues (asthma and some mild heart complications). In the end I went ahead and gave him the vaccine (half dose in the arm - booster to follow in 4 weeks (usually booster is given after 21 days but they felt he would be better off waiting an extra week). That is how the vaccine is given in Canada - not sure if it is the same in the US. He had the vaccine 10 days ago and so far he is fine - no problems whatsoever (yet). In the end we decided that we could likely handle the potential consequences from the vaccine better than we could handle the potential consequences of H1N1. For him - H1N1 would have resulted in a neurological setback and possibly much worse. We felt that the vaccine could result in a neurological setback but probably not death - it sort of became the lesser of 2 evils so to speak. We are faced with so many difficult decisions along the way. It is always hard to know what to do. I know that he only got this vaccine because it is H1N1 and he has underlying health conditions. We hope to not to vaccinate him for anything else for a very long time (we plan to skip his next scheduled vaccines).
  23. I just had my son vaccinated yesterday (only a little over 24 hours ago). This was a very difficult decision for me but in the end I decided to go ahead. I felt that we could likely deal with the possible neurological complications from the vaccine but I wasn't too sure how his body would handle H1N1 (he has asthma, some mild heart abnormalities and Sydenham's Chorea (although I keep thinking it might be PANDAS). Anyhow - I don't think the vaccine will kill him but I feel he is at risk of dying from H1N1. In short - vaccinating him seemed like the lesser of 2 evils. I know most people who get H1N1 are just fine - but - it seems to me that more and more people are having serious complications from this nasty little flu. I am keeping him home from school for a little while post-vaccine to keep a very close eye on him and to let him get extra rest etc. Hopefully things will go well. Also in case you are wondering - here in Canada - nobody is getting the vaccine up the nose. My son got half the vaccine given to him yesterday (in the arm) and he will go back for the other half in four weeks time. The rest of us all got one full dose of vaccine (because we are all 11 or older). I will post if anything happens to him as a result of the vaccine.
  24. My son never had sore throats with strep infections - he doesn't doesn't have a raspy voice either.
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