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Everything posted by ma2ar2rm2

  1. My son is having high dose IVIG this friday and Saturday July 13 and 14, 2012 it's our 1st time doing IVIG. I would love to hear from all of you.. any advice for before and after? How long was recovery time for you all, was your child sick for long? How did the up and downs of it go weeks/months later? Was there much turning back the page with it?? Just anything you think would be helpful for me to know.. thanks.
  2. all my kids present differently.. my two with the dx of PANDAS my daughter biggest symptom was sensory where she couldn't wear her cloths cuz they were hurting her so bad to touch her.. she also had major fears and seperation anxeity.. no tics or anything like that.... My son had OCD checking and tapping major fears and intursive thoughts, eye blinking, head turning and throat clearning tics, then when he was exposed to MycoP it went into what looked like sydenham choriea movement and left him looking like a fish out of what.. My youngest son who is not dx but I see it in him.. crys at a d
  3. about 3 1/2 years ago when my then 7 year old daughter she is 10 now was dx with PANDAS I was wondering the same thing.. she is #3 of 4 children and after reading all about PANDAS I started questioning if my others kids could have had it when they were younger, cuz alot of the symptoms they had over the years growing up.. My oldest dd who is 16 now when she was 3 had a blinking winking eye tick they dx it as seizure activity and gave her meds for it, but she also had the mood swings. My oldest son who was 9 at the time is 12 now.. showed classic PANDAS symptoms all though out his life starti
  4. Thank you.. I kind of figured that would be the case.. but I wasn't sure. He is on 4g a day at the moment.. 2g in the morning and 2g in the evening.. I wasn't sure how slowly to wean but today I dropped him to 1g in the morning and 1g in the evening.. not sure if that is too much or not.. but he seemed fine today.. might give him a few days at that befor lowing him again.. thanks again.
  5. Hello I have a question about stopping Inositol... My son has been on it for 2 months without any problems at all, but he is starting a new medication and I would like to stop the inositol and let the new med see if it can help. But I didn't know if inositol is something you can just stop or do you need to wean off of it???? thank you for your help.
  6. when my son was in his 1st crisis we did 100mg one pill onces a day for 5 days next time we did a 3 weeks taper 80mg for 7days, 40mg for 7days and 20 mg for 7 days. With the 5 day burst we didn't start seeing results till day 5 and it lasted about 20days before symptoms started to show again. With the 3 week taper we started seeing results around day 5 again.. he was good the whole time on them and for 6 1/2 weeks off them... Then he got sick. he got sick on Wed of this week and all his big jerking and violent tic sort of movments came back full force.. I got him to the pedi that
  7. Thank you all for your responce.. I'm going to lower the dose with both of them and see how they do... and also go and read all the links you have listed at the top. As for additional testing.. they don't have anything ordered as of now. Dr T in New Jersery did find a doctor here in Ohio that he recomended who does all sort of testing and treat both antibiotics and bio med. I spoke with the office on the phone, but i can't make the appt yet.. They don't take insurance and right at this time I don't have the money to pay upfront.. my husband company closed down 10 months ago and he has yet
  8. Hello.. I did a search for Inositol and found you all.. I have been reading alot of the thread about it, but most of them were posted years ago.. so I thought i would jump in here since it was more resent.. I just started my two PANDAS children on Inositol this weekend.. My 10 year old daughter has been dealing with PANDAS for 3 years dx 2 years ago and so far her only treatment has been daily antibiotics.. her symptoms were ocd(without to much C but alot of O) high anxeity, sepration anxeity, and big time sensory issues mostly with clothing. most all of this went away with antib
  9. Great explanation. Let us not forget, however, that the biggest factor at play here is a compromised BBB. Strep infections are just about as common as colds and flu, yet only a very few develop PANDAS. Why? It's pretty obvious to me that when the average person gets Strep, the BBB remains intact and the antibodies never gain access to the basal ganglia and the auto-immune response is never developed. Theoretically (and I think practically as well), once the integrity of the BBB is restored PANDAS goes away completely. You can't eradicate Strep and some people are genetically coded
  10. IVIg goes further to get the child back to 100% or as close as possible. As I said, its healing effects are stronger and longer-lasting. To me, my son isn't completely functional unless he's 90%+. Anything less than that and he still has enough ups and downs and difficulty focusing to keep him away from school and other activities from time to time. That, to me, is unacceptable. At 90%+ (really 95%+), he is able to manage it pretty much 100%. We won't stop until that becomes the new baseline and my gut tells me he will eventually get to 99-100%. In your case, I would definitely do
  11. That is a very interessting thought. hmmmmmm but if the brain is always under attack. how do we account for the good days, weeks, months of no symptoms?? It does make sences in a logical way that the brain isn't going away so the antibodies are always there.. but so far with PANDAS there doesn't seem to be much logic in it LOL.. stuff happens that doesn't seem like it should be stuff doesn't happen that seems like it shouldn't ~sigh~
  12. How long ago has it been since you did the IVIG and how is your dd doing these days.. Does she still get symptoms to exposure or non strep illnesses? Did it take 1, 2 or more IVIG treatments???
  13. What would your oppion be if your child with in a month of antibiotic was at 90% but then got sick again and an incress are antibiotic took her back to 90% only a few months later got sick again and went back down to 75% I think my dd since 1st starting to treat for PANDAS with antibiotics back in May 2010 keeps jumping up and down between 75% to 95% I can't say she ever really got 100% better cuz everytime she is exposed to something she gets mild symptoms.. but even at that time I say she is about 85 to 90% but when she gets sick.. it just goes down hill. Would IVIG stop that???
  14. I have been wondering alot of the same things. We have been dealing with the PANDAS symptoms for 2 years.. but didn't know it was PANDAS until 10 months ago.. at which time they started her on antibiotic and she has been on them ever since.. with in a month of starting the antibiotic she was 99% better.. only having mild symptoms when exposed to someone sick. Then she got an infection in Oct 2010 in the form of an abscessed tooth(which the dentist and doctors have told me most abcessed are a form of strep)Which sent her into a big PANDAS flare up for the whole month of Oct and most of Nov..
  15. Thank you Nancy.. this has been very helpful for me as well.. my DD has the rest of this year and next year befor she moves up to the next school where they team teach with about 4 or 5 teacher for two years and then into the Jr High and High school.. I guess I didn't think past the elementary stage to look at how this might not work as well when she gets older.. Oh how I pray PANDAS is under control and may never come back by then.. but I will keep the IEP in mind for her as well as her 504 we already have.. Thank you In our experience, a 504 seems adequate for elementary school
  16. Some days I just want to throw in the towel and homeschool, just to take the pressure off both her and me.... I know that feeling well.. and I really really looked into it and wanted to do it.. not so much for just taking hte pressure off but because it would mean she comes in contact with less illnesses which means she would have less symptoms.. ~sigh~ Only when my dd isn't having a symptom day... School is her favorite thing.. she loves everything about it.. the work her friends... she loves learning and loves showing off her good grades and loves playing and working with her frie
  17. It took some time but I did push and we got a 504 for my dd who is in 3rd grade.. up until this point she was a straight A student.. teacher pet...perfect kid... sort of student.. no problems at all.. except that she was missing alot of school... that was because I kept her home when she was having melt downs and the school didn't see it.. After finding out what we were dealing with PANDAS.. I went for the 504.. they didn't feel she needed a IEP.. but agreeded with me that she needed the 504.. I took the approch of laying it all out there for them and then asking them to help me protec
  18. WE have minor immune stuff going on - but minor - at least not major enough for insurance to consider it an issue. we have immunologist working on one last autoimmune thing - ds doesn't make pneumoniae titers - but since he doens't get pneumonia or bronchitis, it ins't considered an issue. Normal people would revax and see how child reacts - but I'm to chicken to vaccinate. My PANDAS dd 9yrs old.. has this same thing going on.. We went to an immunologist and had the immune testing done end of Dec.. They said she wasn't making the S pneumonie IGgs. I was scared out of my mind to revax her
  19. wonderful advice.. My daughter reacts when exposed to strep.. I call her the strep detector.. she seems to get symptoms about 2 or 3 days before I find out that someone she was around test pos for strep.. This last time it was myself and my older son. My PANDAS daughter started having symptoms for 2 days that is what made me even think to get my son tested for strep when all he was complaining about was his tummy hurting, no fever no sore throat, just his head hurt and his belly was killing him.. got to the doctor and his throat was all red and they did a swab and it came back pos for strep.
  20. Mono was what triggered my dd's PANDAS.. I know her doctor says it was only strep.. but all the changes I saw in her like things hurting her when they touched her like clothing and blankets, and being extreamly moody and crying alot all happened with the mono.. but when she got strep on top of it, things just got that much worse and all the fear and anxeity kicked in. but when she caught the 2nd strep infection and all heck broke loose on her is when they called it PANDAS and started treating her.. Mono of Feb 2009, June 2009 was strep and then Spring 2010 was when all heck broke loose and t
  21. Thank you Emerson Reading your post always give me a better understanding of what my daughter might be feeling, even when she is not willing to talk about it herself. Thank you.
  22. Dedee, I would tell you to have your husband read this thread so you can say, "see?", but unfortunately he will most likely say, "those women are crazy, don't read that stuff!". I know the pandas-dad too well. Hahaha... though it's not funny.. but really what is it with the PANDAS dad... My husband will not really read anything and learn, he just listens to what I read and tell him about... and then he doesn't undestand what and why she does what she does.. and Just this week I looked at him and said.. you know its a disability really, she isn't going to responde and act like you thin
  23. My mom and dad has dealt with my dd in melt down form while she was at there house but there house is her 2nd home.. So they understand my IL's would not want her back if they saw this.. and my MIL has asked me over and over if I think maybe she could be just putting on a show to get her way... Honestly I think if I hear that one more time I might lose my cool with my MIL.. but I have just excepted that unless people are going though this they are not going to understand it.. But the whole falling apart infront of mom/dad thing is so crazy.. my dd spent the night at my parents house
  24. OH YES!!!!!!!!!!!!!!!!!! OMGoodness Yes...... BTW my dd is in a major nasty mood at the moment due to a flare in PANDAS symptoms.. She is crying and moody and irritable, and having night time fears... but has gone to school every day, played nicely with her friends... but it seems the minute the bell rings she just lets loose.. and UGH... Love her dearly and I understand it is the PANDAS and not her because when she is not in a flare she is the sweetest nicest little girl every willing to bend over backwards to be kind and loveing. but holy cow.. right now she is screaming at her
  25. when I 1st took my dd to the Dr for what was going on with her(I had never heard of PANDAS) her doctor told me what was going on with her was OCD, anxeity with a conversion disorder. What her biggest symptom was was like a sensory issue where her clothing were hurting her, everything that touched her was hurting her and putting her in pain. A few weeks after I took her in and that is what the doctor told me, All heck broke loose with her.. She sat naked on my bed arms curled around her knees rocking back and forth crying her eyes out in pain. She couldn't sleep because when she laid down on
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