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PKM

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Posts posted by PKM

  1. 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.

     

     

    Anyone attributing migraines to PANDAS? or is that a whole other issue you think? I just wonder with the 'swelling' in the brain if it would be.
  2. 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".

     

     

    Does anyone know if SC kids react to non-strep illnesses like PANDAS kids?
  3. 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!!!

     

     

    Hi All -

     

    After yet another exhausting discussion with my sons doctors about prophylactic antibiotics ("for how long ?", "how much ?", "which product ?", "there is no evidence, that it might work to use a higher dose ... and by the way there is still a lot of controversy as to the PANDASdiagnosis itself. Maybe he should not even have the antibiotics, he is given today !", "could we at least not give it a try ?", "oh no, we have to consider the risk of resistence !", "well, considering the risk of resistence, my child is suffering ! how about that !" etc. etc. ... you all know, what I mean), I am planning to buy antibiotics without having a prescription.

     

    I am told, that it should be possible, for example via Canadian pharmacies, but I find it very difficult to see whether it is the sites of real or fake pharmacies.

     

    Does any of you have experience with this ??

     

    Best wishes to all of you and your children !

     

    PANDAS_Denmark

  4. 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

     

    Hi,

    Each tablet is 0.1 mg. He has been on it since last Jan. and it took me a while to figure out the doses/ times etc.. He would do great for a month or two and that his tics would come back (not as much before the pills). It was a process. I also waited to give him the 1/2 tablet in the morning until the summer b/c I was worried about his being tired in school. It did take him a couple of weeks for his body to adjust to this. Ryan was very emotional at first and a bit spacey about an hour after taking the pill. However, he now does not experience that at all. I hope things work out for you. My experience is that you need to give it time so that your child can adjust and if it's not working I would talke to the neuro. GOOD LUCK.

  5. 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

     

     

    so he takes 2.5 total per day? wow, that's a lot!! what's his resting blood pressure?

     

    im glad you've found something that works for you :(

  6. 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

     

     

    :wacko: Yeah, I'm on a roll today. This is the first week DH is back at work (after being home all summer and then the few weeks at beginning of school year) and week 3 post IVig for us. She's in week 2 of school and week 2 of having our special needs nanny. We have A LOT going on.

     

    I'm just feeling fried. I don't know what to do and how to react because there is always something new to react to. The rage attacks are directed at me when DH is not here and they HURT. It is all I can do to hold her. I managed to restrain her today for 30 minutes but then she must have sensed my weakness because she suddenly bolted and I could not stop her. I just physically could not. Luckily at that point she ran to her room and didn't throw herself into anything. She's also started biting and I have bruises up and down my arms and today I think she must have popped a vein because I have a lump on my forearm that is blue and swollen and hurts beyond belief.

     

    We hired the nanny in the hopes that we could have someone help me restrain her in her loft bed when needed, as that is how we have managed her for the past two years (she needs total quiet and no stimulation for a few minutes) and we found out quickly that that isn't going to work. It takes both of us totally muscle strength to force her up the ladder while kicking and hitting and biting and spitting at us and then on Monday she threw herself over the edge saying she didn't care if she hurt herself and she hoped she did. Luckily, we were there to catch her, but still....

     

    We've tried making a safe room with mattress and cushions, we've tried having her go to a quiet safe space where she feels safe and confined (she will sometimes hide in the drapes or in her closet and slide the door shut) but she will actively seek us out to hurt us- like, chase us all over the house knocking over furniture and hissing and clawing us until she's put someplace on her own a few minutes. Holding her door shut does nothing- she will fight for hours. She seems to have endless energy. And she can somehow get out of any restraining hold I can do. In fact, when she was a toddler we called her Baby Houdini because she could undo any straps and everything- car seat, etc.

     

    I'm just at my wits end. She is literally abusing me. I'm sore from head to toe from the beatings and have popped almost every joint out of place trying to restrain her (I have Fibromyalgia and have bone spurs on hips and shoulders) so I am walking around (barely) with a migraine trying to do all of this and I am really just wanting to hide in a hole with some strong pain reliever.

     

    I also have a 2 year old who got slapped a couple of times on Monday before I could get her out of range and I'm just SCARED for all of us. Believe me, I would not put a hand on her except she really is endangering herself while doing this too- like, throwing herself at the piano and picture window, screaming at furniture while tossing it over and rolling around or spinning or flailing with eyes shut tight while it's all going on.

     

    I feel like I'm at my wits end. I am really opposed to hospitalizing her :( but I know that when we did an outpatient stint a year ago it really helped.

     

    ???

    Manda

  7. 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??

     

     

    PKM,

    Hi, I got the Cunninghams test sent to me through Fedex. When I got the test, I thought I could go to my family doctor and get my sons blood drawn. But apparently in Canada doctors can't do that. They have to get permission to get blood drawn for research studies. And that can take along time to get permission, to do that. So I thought maybe I could go to a different lab and pay to get it done but no luck :wub: I started to get very discouraged!! Then I remembered that I had seen a ND doctor for my son awhile ago and she had drawn my sons blood for another test. So, I decided to ask her if she would draw my sons blood for the study. She agreed, I was so happy! I got my sons blood drawn and spun. I sent it back through Fedex and did not have a problem sending it across threw customs, to the USA. Have you found any doctors in Canada who treat Pandas yet and believe it really exits? Char...

  8. 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

     

    SF Mom,

    Thanks for the responding! My mind is running in circles right now! My son has had systoms for awhile now. I just keep thinking only if I knew before now :wacko: I am going to take my son to get long term antibiotics right away. I hope my sons doctor will prescribe them! What is IVIG treatment for Pandas? Does Dr.L take patients from Canada? I just feel really overwhelmed right now!!

  9. 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!

     

    otsmith/pkm,

     

    where do you live?

     

    lots of folks on this forum have had a good response with Azithromycin. It is immune modulating/anti-inflammatory (our Stanford immmunlogist agrees that this may be a big reason it works so well for our pandas dd) and it gets intracellular strep.

     

    amoxcillin and pennicillin has good activity against strep in vitro (in the test-tube), not necessarily in vitrol (in the body). Here's a good article http://www.entrepreneur.com/tradejournals/.../169459644.html

     

    H1N1: I read that this flu hits older kids harder than younger ones. Also, that secondary bacterial infections are a problem (in those that died)...so it makes sense to stay on a good anti-biotic (imo pen may be too narrow spectrum if you are worried about 2ndary infections from h1N1.)

     

    Even on Azith, I might have some concerns about using a lot of steroids during the school year (esp. with the h1n1)??

     

    My dd did a 6 day steroid burst (1mg/kg once a day). During the burst, we thought her mood got worse (but she was also in an exacerbation, so maybe things would have been even worse?? hard to say). 2 weeks later we say an improvement.

     

    I agree with MomMd about not worrying about the gluten/dairy.

     

    PKM...i remember reading somewhere that SC reacted only to strep? ?? could your child be pandas (which reacts to other things, once pandas is set in motion)?

  10. my 4.5year old daughterhas been Dx w/ Rheumatic Chorea for 3 months. She has movment disorder, severe behavioral dysregulation, hand tremors, joint pain,itching,crying spells....etc We were crusing along pretty well and she has had a significant set-back this week-end. bAck to ground zero. We are contemplating steroids now. Does anyone have any advice?

     

    She is on penciiian shots. She takes probiotics, antiviral oils, fish oils, b-complex,motrin, vitamin D. She just finished around of diflucan. I am having a hard time getting her off gluten/dairy (damm those PB and J's) Any other suggestions?

     

    Does anyone have any thoughts on gettinng flu vacciation h1n1.etc.....

     

    woulsd LOVE some feedback---otsmith

     

    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.)

  11. My 8 year-old son suddenly began developing neck, shoulder shrugging, knees slapping together tics that have been continuing for the last 6 weeks. My family doctor has referred us to a pediatrician, but we can't get in until September 30. I have just finished reading "Natural Treatments for Tics and Tourette's" and wonder about a few things

    1. Can anyone tell me the name of a good doctor in Vancouver who might knowledgeable about natural treatments for Tourette's.

    2. I am interested in ordering B. Grimaldi's TS-plus supplements. Should I wait until my doctor approves before ordering them.

     

    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.

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

    Thanks

     

    Hello all,

    Haven't posted for quite some time - we were out of the country most of the summer. For those who don't know us - Gaby was 7 1/2 when she had a virus (turned into an initial herpes simplex outbreak which then repeated itself almost every month thereafter).She developed typical PANDAS like symptoms of OCD, tics, sleep disorder, extreme anxiety, paranoia, visual hallucinations, decline in handwriting, math skills, reading, social skills, ability to dress herself, ate with fingers instead of fork (just to name a few). Her behavior had improved the summer before last for a few months, but with another viral outbreak, started all over again. We had IVIG last October which got rid of the tics, but all other behaviors hung on with January, February & March being the worst months. In April we started her on Kefir and she is still drinking it daily. It has now been over 5 months without a herpes outbreak (unbelievable). Last month I stopped all the vitamins & supplements that we had been doing for at least a year. The only other thing I do besides the kefir (since it has really boosted her immune system) is that if I detect the slightest sniffle I give a teaspoon of vitamin C powder diluted in small amt. of OJ (equivalent to about 5,000 mg) & by the next day she is usually fine (sometimes I have to give a second or third dose, but rarely). If she complains about a stomach ache or I suspect any kind of infection, I give 3 or 4 drops of oregano oil mixed with a tablespoon of any other oil (fish oil or olive oil - just to keep the oil of oregano from burning the throat - its strong).

     

    Gaby is about 98% herself now. No obsessive thoughts or questions. The only thing that remains is that she still gets a little more upset when provoked by her twin than she used to, but it's manageable.

     

    Since I can't cite any research studies that prove this - I can only say that since Gaby started drinking the goat milk kefir 5 months ago, she has not been sick and with that her behavior has gotten better & better. I can't say that she won't ever have this again - because who knows? I do know that this is the longest that she's gone since starting the symptoms of being close to her "normal" self. I tend to think that if the good microflora in the intestines are plentiful, this keeps the immune system functioning well - might help to ward off strep or viruses.

     

    Anyway, we're on a roll so let's keep our fingers crossed. Pat

  13. I can't give you any insight on the migraines/Pandas connection but I can tell you what I experienced personally as a child with migraines.

     

    I remember they started when I was very young and of course no one believed that I had headaches because I was so young. Each headache would last about three days and migrate from one side of my head to the other. They were always located on my temple and above my eye. Heat, humidity, light, sound and movement always made them worse. Over stimulation would lead to vomiting and vomiting would lead to more extreme headache pain. As i've gotten older the headaches have pretty much disappeared.

     

    My dd7 has been experiencing migraines since getting the IVIG. I was hoping my kids would not be blessed with this gift of heredity.

     

    Our Ped gave us a RX for Imitrex nasal spray. It is very expensive but the money.

     

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

    Thanks

  14. When I read your post, I researched SC a little. It does seem like frequent headaches, even migraines w/ vomitting happens with SC. However I could not find anything about them going away. For some, they say it is a permanent headache. In one study it did say that CT and MRI's didn't find anything and they weren't much help, but if you can get one, I'd still go for it. Like you asked...why would they go away when he has a problem w/ movements....

     

    Has he seen an opthamologist?

     

    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.

  15. Pixie also complains of headaches, but they never result in vomiting, etc. I find that she will not drink unless we are really vigilant about making her, and I wondered if they could be dehydration-related. I read someplace that most headaches are from dehydration that you don't even realize.

     

    Is he on any meds? The psych just ran a panel on her checking pituitary, etc to see if maybe the meds were causing a hormone (prolactin) increase and thus causing the headaches, but that was ruled out. Ped said another visit is in order at the neuro for us, but also because she is having some urinary issues that can not otherwise be explained.

     

    Have you had any neuro testing done? A CT, etc? Could it be hereditary? I started having migraines at 7, but looking back I wonder if I didn't have something else going on as well since I was sick, esp with strep, quite a lot. Very strange how all the pieces of the puzzle start to fit together and yet it is all still a mystery.

     

    FWIW, Pixie's tics and other PANDAS behaviors don't go away during her bouts of headaches, often it is the reverse. She also tends to complain of stomach pain and leg pain around the same time as headaches as well, so hers is obviously somehow related.

     

    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.

  16. Here is an old thread on headaches http://www.latitudes.org/forums/index.php?...mp;hl=headaches

     

    Do they respond to tylenol or advil? Many PANDAS parents find that advil (but not tylenol) also helps other pandas symptoms.

     

     

    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.

  17. 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???

  18. 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

     

     

    Does anyone have any idea what could be causing an eye rolling to the sides constantly? I started to worry last night because I read about tardative dyskenesia side effects from medicines. He is on a 15 mg dose of Abilify, 20 mg of Celexa and .01 in half of Clonidine. I have read TD can be a side effect from Abilify. I noticed it start on Fathers Day weekend. It does seem to be worse in the evenings when he is tired. He was sick June 5th weekend and has been having an epsiode since. I tried Claritin for allergies but if anything it seemed worse the next day. This time of year has always been bad for his eye tics. I have never seen this kind of weird eye rolling movements though. Should I consult with his neurologist, the eye Dr. or the psychiatrist? It seems like we can never get a break! I have been so worried about the bowel issues and now this! His OT commented on it on Thurs. because it was giving him visual perception trouble during therapy. How do you pinpoint what is causing it, the pool chlorine, the meds, the illness, stress? We have an eye Dr. appointment the 13th and the neuro the 14th should I wait? I did stop the antibiotic last week bacause of the bowel issues. So many things to worry about, I think I'm the one who needs the Celexa.
  19. 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.

     

    I would recommend getting the CAM kinase II lab done through Dr. C lab. I do not think getting it done elsewhere would work and the results may not be valid. I would call her lab and talk to someone. They are very accessible. Dr. Cunningham will even e-mail you back herself. I am sure they can accept blood from another country. Also, I think if left untreated (with IVIG or plasma exchange) SC may resolve in a few months but also may last for for several years and result in permanent movement and behavioral damage. As you can see it is not the step now causing the symptoms but the antibodies to the strep in the blood. The only way to clear those is IVIG or plasma exchange. Any stress (including vaccines, a viral infection, and in my son's case even anxiety) can cause a flare. It does sound like PANDAS but at the SC level.

    iIknow this is overwhelming but there is a treatment and we have been making great strides to get this reconized as a disease. They have even recently started doing IVIG for this at Stanford. As Dr.Cunningham said at a recent lecture...these patients are coming out of the woodwork. It is unbelievable.

  20. 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.

     

    Hi, PKM:

     

    Yeah, my son was originally diagnosed (Summer of 07) with ARF and SC because his symptoms started with polyarthritis, pain, muscle weakness, and then these "seizure-like" episodes where his limbs would twitch and jerk wildly for 30-90 minutes. Initially, no OCD at all, but the rest of the symptoms (emotional lability, separation anxiety, etc.) overlap a lot between SC and PANDAS.

     

    In Spring of 08, our local diagnosing doc attended a conference and came back to tell us that he thought our son was more PANDAS than SC. Our son's movements were episodic, and I guess classic SC movements are continuous. Then that summer, we had the overnight explosion of OCD contamination fears along with anorexia, urinary frequency, wildly dilated pupils, etc.; the classic PANDAS stuff.

     

    We had a phone consult with Dr. Latimer from D.C. area (you'll see many other posts about her - she's excellent), and she also wasn't sure whether our son's illness fit best under SC or PANDAS. She mentioned that, as far as she's concerned, SC and PANDAS are just parts of the same spectrum of disorders. Makes sense to us: both are neuropsychiatric, both believed to be caused by autoimmune response that attacks basal ganglia, and many of their symptoms overlap.

     

    Hope that helps. And best of luck finding a nearby doc willing and able to help - that's more than half the battle!

     

     

    Hi PKM...

     

    Some thoughts...

    Good question, PANDAS or sydenham's chorea? If you are able to run blood through Madeleine Cunningham (see worried dad's post) that might help you clear some of the confusion since SC kids tend to have higher CaM kinase II than PANDAS kids. Of course there is a "grey zone" but I do think it might help.

     

    re abs: lots of PANDAS kids are on something stronger than pen. Azith. gets intracellular strep and is also anti-inflammatory/immune-modulating...so that is a popular one. My dd (55 pounds) is on 250mg/day (has been for over a year). Her pediatric immunlogist felt this was a safe dose for her for years. It was the 4th antibiotic we tried and the only one which really helped.

     

    You could also start e-mailing around...Dr. K in Chicago, Sue Swedo at NIMH, Dr. Latimer in DC, Dr. Leckman at Yale to see if they have any recommendations for Canadian docs.

     

    What part of Canada are you in?

     

    Maybe Worried Dad (I don't know how often he is checking the forum) will chime in. His son also originally had a SC diagnosis...later he developed ocd symptoms as well and the diagnosis was eventually changed to PANDAS.

  21. 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 PKM...

     

    Some thoughts...

    Good question, PANDAS or sydenham's chorea? If you are able to run blood through Madeleine Cunningham (see worried dad's post) that might help you clear some of the confusion since SC kids tend to have higher CaM kinase II than PANDAS kids. Of course there is a "grey zone" but I do think it might help.

     

    re abs: lots of PANDAS kids are on something stronger than pen. Azith. gets intracellular strep and is also anti-inflammatory/immune-modulating...so that is a popular one. My dd (55 pounds) is on 250mg/day (has been for over a year). Her pediatric immunlogist felt this was a safe dose for her for years. It was the 4th antibiotic we tried and the only one which really helped.

     

    You could also start e-mailing around...Dr. K in Chicago, Sue Swedo at NIMH, Dr. Latimer in DC, Dr. Leckman at Yale to see if they have any recommendations for Canadian docs.

     

    What part of Canada are you in?

     

    Maybe Worried Dad (I don't know how often he is checking the forum) will chime in. His son also originally had a SC diagnosis...later he developed ocd symptoms as well and the diagnosis was eventually changed to PANDAS.

  22. 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

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