PKM

My son began having migraines 3 years ago. I actually think it was the first neurological symptom resulting from repeated untreated strep infections. These migraines were happening 5 or 6 times a week. He still gets migraines occasionally now - but not like before - maybe only once a week or so.

My son (who was diagnosed with SC in Jan 09) continues to have trouble with anything that challenges his immune system (colds, flus etc.). Sometimes these setbacks have been pretty severe and sometimes more mild. I would have to say, however, that as the months go by, the setbacks are less severe "overall".

Here in Canada I have never been able to buy antibiotics without a doctor's prescription. I do know these internet pharmacies exist but I don't know anyone who uses them. Everyone I know gets prescriptions from the doc and then goes to have them filled at a pharmacy (just like in the USA). These internet pharmacies must be taking advantage of some legal loop-hole that is allowing them to mail-order prescription drugs. I'm not entirely sure how much I would trust these internet pharmacies myself - can you be sure of the quality?? - maybe the expiration dates are not accurate etc.?? That being said - if you have exhausted all other options - maybe it is worth a try. What if you told your doctor that this is what you now felt forced to do given the circumstances - that you now felt compelled to order antibiotics from an internet pharmacy - from another country. Do you think you would get anywhere?? Good luck - I just wish your doc would come around and give you what you need. So frustrating!!!

Thanks for sharing your experience. I find it odd that my son would experience insomnia and an increase in movements with the clonidine - but then we also had the same result with magnesium (Kid's Calm). It seems that these things that are supposed to be calming the brain (and even make you sleepy!) actually do the opposite for him. I wonder if it is because the etiology of the movements is different in Sydenham's / possible PANDAS than it is for other movement disorders? Anyhow - things do seem to be settling down a little - so we will just wait and see for a little while longer - hopefully he can catch a break one of these days. PKM

I'm just wondering how many milligrams each pill is?? (I'm pretty sure that Clonidine pills are sold in different sizes in Canada than they are in the USA. Each pill in Canada is only .025mg) I'm curious because my son just recently started taking Clonidine .05mg in the am and .05mg in the pm. He hasn't been diagnosed with Tourette's at this time but has been diagnosed with Sydenham's Chorea / possible PANDAS. When he first started taking the Clonidine he had a severe increase in movements and insomnia. Now......about 2 weeks later things seemed to have settled down a little. What were things like for your son when he first started with Clonidine? PKM

Things sound pretty rough for you guys right now. My thoughts and prayers go out to you and your family - hopefully there will be an end to this soon! We have been lucky enough never to have experienced rages with our son. However, I did work at a group home when I was in university and I took a course at the time called "non-violent crises intervention" which I found to be extremely useful for my work. I worked with adults - both men and women - most who were larger than me - most experienced frequent rages and outbursts. This course taught us different holds and strategies to help safely restrain and calm the client. We were not only taught various safe holds but also what to do when someone bites, pinches, pulls hair etc. in order to release the jaw, hand, etc. Very useful. It was a full day course (possibly 2 day course) but it sounds like something that might help both you and the nanny work safely with your child. I'm not sure who might offer this in your area but maybe a local school might know?? Or a public health nurse might know or at least be able to look into it for you?? I know you are thinking - sounds great - but where would I ever fit something like that into my life while I'm in crises mode??? I'm not sure......I can't imagine how tough things must be for you right now - but if you can find a similar course and find a way to get there - I do believe it would be helpful for you. It would give you a lot of strategies to help keep you, your daughter, and the rest of your family safe. Again - my thoughts are with you - you must be truly exhausted. Hopefully things will get better soon and you will see some relief. PKM

Char, Thanks for the info. re how you got the blood to Cunningham - it might prove to be helpful down the road. As for Canadian docs who treat/believe in PANDAS - not too much success yet. I emailed many of the docs in the states (Dr. K , Leckman, Latimer, Cunningham etc.) asking if they knew of any Canadian docs who treat PANDAS but they knew of no one. The pediatrician he sees does actually believe PANDAS exists but he wants to leave things up to neurology. We have our first neuro appt. on Weds. I am not sure what to expect but I'm not holding my breath. I am wondering if she will just diagnose him with Tourette's that is triggered by illness (as others have experienced). What has been your experience on this side of the border??

Hi there. I live in Winnipeg and I noticed you say that you are from Canada but that you did Cunningham's blood tests. Did you have any issues sending blood across the Canada / Us border?? I am just wondering about the logistics of it all.......... Thanks

Hi EAMom, I live in Winnipeg, Canada (I have not found any docs familiar with PANDAS in Canada!) Yes......I am wondering about PANDAS and I do watch this forum pretty closely. The docs think that the set backs with illness could still be SC (that he just isn't "over" the SC yet - that SC can take up to 2 years to resolve and the viruses are just "setting back" his recovery)???? The setbacks with his last 2 viruses (June and August) were certainly less severe. So.... I am hoping the docs are right and he will just continue to gradually improve. The only symptoms that return with illness are chorea and tics (he continues to have on-going occasional joint pain whether he is sick or not). I actually believe my son has had repeated untreated strep infections since he was about 2 1/2. Since that age he has had fairly frequent (about every 8 weeks or so) high fevers (104 F -105 F). These would last for about 2 days and then he would get better - no other symptoms - he just slept and had high fevers. I was just told that this was how he "was" - that everyone's body responds differently to viruses etc. Well.....since he has been on prophylactic antibiotics, this hasn't happened to him once. It seems to me that he must have been getting some kind of regular infection that the antibiotics are now keeping away - my guess is that many of those must have been strep. I also believe that many of his other health issues are related to these years of untreated strep - he started getting migraines (6-7 a week) in kindergarden. Now - those suddenly seem to be going away - or at the very least they have been significantly reduced. He also started getting exercise induced chest pains in first grade (he was checked back then but they found nothing except a left axis deviation and a murmur). The chest pains are still a concern and I would like him to be checked again - I understand tha valve damage can take some time to be evident?? Anyhow - this is all so confusing and I think that SC and PANDAS are all kind of on the same spectrum.........every case seems somewhat unique though - nothing too straight forward. At the moment - since he is doing quite well - my plan is to see if he will just continue to gradually improve. (I know his body is still working at getting better - he sure needs a lot of sleep!) I am not planning to push for PEX or IVIG yet. I know that if it is PANDAS, that treatment is most successful before the age of 10..........so......can't wait too long of course. I also read that children with neurological issues have also been hit quite hard with the H1N1 flu and so this also concerns me a little. This is a wonderful forum filled with great information and great people. I am certainly glad I found it and appreciate everyone's thoughts and insights!

My son was diagnosed with Sydenham's in January (then 7yrs - now 8yrs) and he is still not 100% better. He did experience some mild behavior issues (some separation anxiety, some age regression behavior (suddenly carried a stuffie everywhere he went), some irritability, and a few bouts of strange "inappropriate" laughing. These behavior issues cleared up pretty quickly. He has also experienced joint pain (still happens occasionally today). The worst of his problems were movement related - a lot of chorea (even a brief period of "paralytic" chorea) and tics. We have certainly seen a "saw toothed" recovery pattern with him. I am just wondering if your little girl might be coming down with a virus or infection of some kind? As my son has been recovering, he has had major set backs whenever he gets sick. The "Sydenham's" set back usually begins anywhere from about 3 to 9 days BEFORE he has any obvious symptoms of the upcoming virus or infection. (I assume it depends on the incubation period for the particular virus/infection.) It is very difficult to see him doing so well in his recovery only to slide so far back when he gets a flu or cold. Every setback he has had has been related to a cold or flu of some kind. On the upside - after 9 months into this, his last 2 setbacks (with cold viruses) have not been as severe or as long lasting. (Of course we are a little concerned about the H1N1 coming to our house.......not sure what that might do to him.) He has not been on any meds through all of this other than the prophylactic Pen VK. He takes a good multi, some fish oils and b vitamins. He also takes an iron supplement. I am sorry I don't have any experience to share re: steroids but I thought I should share our experience re: my son's Sydenham's set backs being related to viruses/infections. Keep your eye out - she might be coming down with something. I know how difficult this is - the ups and downs in the recovery pattern have given me many emotional ups and downs!! It is soooooooo hard to see your child suffering - you just want it all to go away!! (At least I do - I'm sure you do to.)

Just wondering if you have looked at the PANDAS information on this site?? You mention the "sudden" onset and this is very characteristic of PANDAS - it might just be worth having his throat swabbed (72 hour culture) and blood work taken for a strep titer test. This is something that your family doc. can do while you are waiting to see the pediatrician. I wouldn't order any supplements until you have done the strep investigation and until you see the pediatrician - just my personal opinion though. I can't help you find a good doc in Vancouver (sorry - I live in Winnipeg!) but it is nice to see another Canadian on here.

I am just wondering if you buy the kefir you give to Gaby or make your own?? Thanks

Is the Imitrex used to treat the pain once a headache begins or is it used as a preventative?? Thanks

He has seen an opthamologist - found nothing out of the ordinary. I still suspect that these are somehow related to the problems he has encountered with strep....the pattern must indicate something. Thanks for the info re SC and headaches.

The only thing he takes is penicillin......but these headaches began 2 years before the Sydenham's diagnosis (and 2 years before any chorea or tics). I believe though that he must have had untreated strep before and perhaps the headaches were an early symptom of this - especially considering that when he has the movement issues he as very few headaches - but as soon as the movements fade - the headaches come back. I just can't help but wonder if more swelling gives him the movement issues and less swelling gives him the headaches. Neurology sure is mysterious!! No one else in the family has migraines - so probably not heredity. (Never could find any patterns with food intake etc. either.) He had an MRI 2 years ago which came back fine. No other neuro testing done.

Yes - Advil works for him but Tylenol does very little. We used to be unsure if he really had bad headache pain when he first started getting them - but we quickly discovered that if we did not treat him immediately he would soon be on the floor vomiting and in extreme pain. Not fun for anyone - especially a little kid! Thanks for the link to the old thread.

I am just curious to know if anyone else's kids have problems with headaches and migraines? My son had an abrupt onset of migraines 2 years before his onset of diagnosed Sydenham's Chorea (which I do think might be PANDAS). I can't help but think the migraines might be related in some way. When he has problems with movements - he has no migraines - when his movements get better - the headaches come back - there certainly seems to be some sort of relationship there. I can't help but wonder if a certain amount of inflammation causes him to experience headaches/migraines but a greater degree of inflammation causes the movement disorder issues. These headaches/migraines can be very frequent at times - like 5 or 6 days a week. Anyone with any thoughts on this???

My son has had several eye rolling "tics". I don't really know for certain that is what they are but I assume so. He is not on any meds (except prophylactic penicillin VK). He has had one where his eyes were just constantly rolling back into his head with his eyes fully opened, another where his eyes were rolling back into his head but his eyes were only half open, another where his eyes rolled up but sharply to the left (eyes open) and still another where the eyes rolled up but sharply to the right (eyes open). These movements are most certainly disconcerting so I can relate to how you are feeling. I believe these are tics for my son because we know a little boy who has Tourette's syndrome - and one of his tics is eyes rolling up sharply to the left. My son's episodes always follow an illness of some kind or another - no other triggers yet. These episodes seem to last for about 4 weeks after he is better from the illness. The eye rolling "tics" happened during a couple of his episodes (that also had a lot of chorea and other tics present) and went away as the episode subsided. Hope that helps a little. Post again if you find out these are not actually tics but some sort of partial seizure. I would be very interested to know! Thanks PKM

Hi I'm worried because we are in Canada. There does not seem to be much of a community interested in PANDAS in this country. I too am feeling that it is PANDAS but my son doesn't seem to be among the worst of the cases out there. I am worried that if he doesn't get PEX or IVIG that he will only get worse. I would really like him to get treatment before that happens. So far he has only had movements (chorea, tics, and even some very "dystonic" like movements that have been held for 90+ secs). When he first fell ill he was a little extra grumpy but that soon passed. At its very worst, there was a day when his legs would not work at all (he kept rolling forward on his toes and falling to the floor - he was found to have an elevated CPK on this day) but that did eventually resolve itself. He also had a period of time where every muscle group was affected (eyes, jaw, mouth, neck, shoulders, arms, wrists, fingers, trunk, legs, ankles, and toes). He has also always had an overactive immune system (every new tooth meant a fever of at least 103 - and fevers with flus etc. have very often been at the 105 level). However - aside from the movements (and occasional knee and ankle pain) - he has not shown any other signs - no OCD, ADD, ADHD, separation anxiety etc. I'm just worried about trying to find someone here to help us. We have an appointment on Thurs. with his ped. but I am not holding my breath. He did mention PANDAS once before but when we last spoke he told me that he had just read an article that doubted the very existence of PANDAS. Moreover, you can't get into see any specialists here without a referral. It takes a year to see a neurologist and the chances of getting one who believes in PANDAS is probably pretty rare (there are only 3 ped neurologists in the city). I phoned the Tourette's clinic here but they don't believe in PANDAS. I emailed Dr. Cunningham on Fri and I hope I hear back from her. Do you know why the antibodies seem to go away for many SC patients but stick around for so many others (PANDAS patients included)?? Thanks for your time and interest. Much appreciated.

Your story scares me a little for the future! I will have to read more of your posts. Was your son already on abs before he had the sudden onset of OCD? Was it caused by another strep infection? Your son's movements do not sound quite the same as my boy's but I do think every case presents itself very differently. How many of those movement episodes would he have in a day? Do they still continue or have they gone away? Thanks for your input. Much appreciated.

I am not sure about running blood out of the country but maybe I can have the CaM kinase checked here with our doctor. We have an appointment next week and I will also try to talk about the choice of abs at this time. I am not convinced that this doc will really explore the whole PANDAS diagnosis. He mentioned it once earlier on but when we last spoke he said he had recently read an article doubting the very existence of PANDAS......hmmmm. I already emailed Dr.K and he knew of no one in Canada - but I will try the other docs you mentioned as well - maybe I will have some success (thanks for the list). Do kids need to have other symptoms besides movement to fit into the PANDAS spectrum? When he was very ill he was somewhat moody/irritable......but nothing too bad really. He also now complains of sore knees and ankles sometimes. Academically and socially he has no issues and no hints of any OCD, ADD or ADHD. Really his symptoms are thus far all movement related. He has had chorea and tics and some movements that have been very dystonic in nature (held for at least a 90secs). When things were at their worst - every muscle in his body was affected and movements virtually continuous (eyes, mouth-jaw, neck, shoulders, arms, wrists, fingers, abdomen, legs, ankles, and even toes). He was a moving boy! I am wondering if you know the answer to this question - If the antibodies eventually go away for SC why do they seem to stick around for PANDAS kids? Are some bodies just better at ridding themselves of bad antibodies than others? We live in Winnipeg, Manitoba (right the in the middle of Canada and close to Grand Forks, Fargo, and about 8 hours from Minneapolis). Thanks for your interest and help - you seem to know a lot about PANDAS!

Hi all. I am new here and I believe my 8 year old son might have PANDAS. He had an untreated strep infection at the end of Nov/beginning of December. Four weeks later he had a very sudden/rapid explosion of eye tics. These went away after treatment with antibiotics (he had elevated strep titer). He then suffered a very severe viral infection. Three days before the viral infection we noticed another sudden onset of tics - he then fell ill. He even had a period of time when he could not even walk. He definitely developed chorea at this point (and diagnosed with Sydenham's chorea). Once again the chorea and tics went away. He got sick again (viral) in mid March. Once again movements (combination of tics and chorea) started a few days before it was evident he had a virus and continued for about 4 weeks afterwards. He got sick in May - same thing happened again (combination of chorea and tics). He got sick again last week and this time he did not start movements until he actually had a fever. This time we have not seen chorea - only tics. We are waiting to see if they go away. He was put on prophylactic antibiotics back in March and has been on them ever since (Penicillin VK - 300mg 2x day). We are of course hoping that the strep antibodies are starting to go away and that is why this last viral infection didn't cause such a severe return of movements. Anyone with any thoughts?? Also does anyone know of any physicians in Canada who actually believe PANDAS exists? I can't seem to find much of a Canadian community for PANDAS. Any thoughts/input would be greatly appreciated. Thanks