ma2ar2rm2

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.

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 drop of a hat, has big time agression and moodieness everytime he is sick or everytime he loses a tooth. All three of them when symptoms are flared will have the big puplis.

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 starting with the bad night terrors, sensory issues with sounds as a toddler, then when he was 4 or 5 had a throat clearning tic that the doctors said was allergies and started him on all sort of allergy and asthma meds, he had OCD stuff to around 6 or 7 but I didn't know anything about OCD or fears of that sort.. all these things always happened when he was sick or there after and I always marked them off to something like he just doesn't feel well.. So after learning about PANDAS with my dd I mentioned it to my doctor and he blew it off.. NOT the best thing to do.... Because Last Sept 2011 my 2nd child my oldest son got sick, I thought it could be strep the rapid came back neg they didn't treat him.. two weeks later he had the biggest change in personality ever. Extream fears, and an eye blinking head turning and throat clearing tick.. all of it came on over night.. then started running a fever and he test Pos for strep.. He has been in a major excabation since then.. antibiotics helped a little, steroids helped alot, In Oct 2011 my oldest child had walking penomia and that my my son and my PANDAS daughter symptoms flare... incress of antibiotics helped my PANDAS dd but my son was left with full body tics/movements he couldn't sit or walk, he pretty much spent all day laying on the floor flopping around like a fish out of water.. Steroids burst and then a steroid taper brought him out of the worst of it and left him with just tremors in his hands and some fears. then my youngest son caught the flu in March.. and my oldest PANDAS son got a fever at that time and it brough back OCD tapping, and the hand shacking started non stop and he had big body jerking movements legs and arms flinging out.. incress of antibiotics and more steroids helped but he was left with the shaking of his hands and his head flinging back like every other min. We have also tried alot of medications they use for torettes but nothing is helping... only thing that helps is steroids.. We just got insurance approvel for the IVIG.. He is having it This Friday and Saturday July 13th and 14th. i guess my point is if you see symptoms of PANDAS and you already have one child dx with PANDAS I would say those symptoms mean your other child has it also... Our youngest child is 7 now and he too shows sings.. major agression and crying alot everytime he is sick, along with the dielated pupels He hasn't had any big time out break of it, like my two middle children have had where it changed their life and kept them from living it... but mild symptoms are there.. So right now anytime he shows any signs of being sick, we have him in the doctors asap getting him on antibiotics.

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.

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.

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 day because he was sick stomach hurting, feeling like throwing up, coughing, nose stuffed up and all the PANDAS symptoms flaring The pedi put him on 50mg of steroids one pill for 5 days. and when I got in contact with Dr T.. he put him back on treatment dose antibiotics for the next 10 days. so hopefully that will do the trick.. Praying you get out of crisis quickly..

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 to find another job so the 6 of us are still living off his unemployment check while he is looking for work. But my parents have offered to help out and our income tax check should becoming here in the next month... ONLY I haven't made up my mind which would be the next best step for my son. For my daughter I think the doc Dr T suggested would be best.. She is funtioning and living her life just with good days and bad days and I think the bio med route might be the way to go for her... but with my son.. I don't know which is my best opption. He has pretty much lost the last 7 months of his life and at this moment moving backwards.. So i don't know if I should try more testing and the different bio meds and supplements or if I should do IVIG and see if we can get him out of the worst of this.... Any thoughts on this is welcomed also since I really don't know what is best..

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 antibiotics with mild symptoms flaring up everytime she is exposed to something.. mild symptoms is moody and crying alot.. a little more then mild symptoms when she herself get sick is the obessive thinking, and alot of other OCD stuff such as checking glasses forks, plates so on to see if they are dirty.. Only eating certin things.. fear of seeing the dark to the point of not wanting to go out and having to have the curtin closed just right so she can't see out at all. that sort of stuff.. She hasn't had any of the sensory stuff in 2 years until this week a little bit with being picky over her socks. My 12 year olds son came down with PANDAS just this fall.. His symptoms are OCD, high anxeity, and tic and movement disorder.. BAD Bad major movements disorder to the point where he hasn't been able to attend school since Oct.. We started working with Dr T in January of this year and with high dose antibiotics and steroids he got so much better.. He was at the point of not being able to sit up or walk, his body was flopping around like a fish out of water.. and his OCD had him hiding in a tent he made with his bed where he was behind blankets 24/7 afraid to come out for weeks.. after the 5 day steroid burst and antibiotics he was back to his happy self with just a major fear of school remaining as far as the OCD/anxeity of it.. and as for the movements and tics.. everything went away except for a shaking in his hands and head which were going on pretty much non stop except for when he was sleeping.. So we did a 21 day steroid taper and brought him down to a maintance dose of antibiotics which is 250mg of azithro every other day he was back to his normal self thought wise, mood wise except for his fear of school(but he fights though it for his tutoring but afriad to go to the school building and letting any of the kids his age other then his friends see him with the shaking) the shaking itself was no longer none stop it was still there every day but he could go hours with out it happening.. which was such a major improvement... but he has been off of it for 6 weeks now and 2 1/2 3 weeks ago the shaking started getting worse again, and some of the flinging of his arms, legs and head jerking back started happening again... his anxeity over stuff is starting to get worse, he has even started crying over things again... now since both of my PANDAS children are going down hill at the time.. i don't know for my son if it is the effect of the steroids has worn off or for my daughter that she was exposed to strep by her best friend.. OR of for both of them that my youngest non PANDAS son and I both test pos for the flu on March 9, 2012 and they are reacting to that... I don't know what the reason is.. but I have been reading about inosital anyways and thought I would give it a shot for them.. My daughter is 10 and 60lbs and I started her friday night with 1g (1/4tsp of the powder) once a day figured i would do that for a week. but since starting it she has been complaining of her stomach hurting and she has had diareah each day. For my son who is 12 years old and 197lbs(big boy to start but steroids for a month and not being able to be active for the last 7 months has not helped at all) I started him on 2g a day.. but we didnt' start him until yesterday cuz he wasn't home on friday.. he said his stomic feels fine, and he isn't having issues with diareah... but his shaking got worse today and his head was flinging back alot.. so much more then yesterday. I guess my question is.. does anyone have advice for me as I start this.. is there anything I should know.. My son is on the azithro like i mentioned and also 1 1/2mg of tenex a day.. my daugher just on the antibiotic.. has anyone heard if Inositol can make tics and movements worse?? Thank you for your help and all comments are welcome.

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 to develop PANDAS once and only if the antibodies cross the BBB. If we could pick one thing to fix and that one thing was preventing compromises in the BBB, PANDAS could be cured or prevented in every case. As always, I'm willing to consider information to the contrary. This is the way I see it. This makes so much sences... if those antibodies couldn't cross the BBB we wouldn't have any problem... Now how to fix that???

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 IVIg if the abx aren't consistently bringing her back to 95%+. Well to this point the abx has always got her back there.. until she comes in contact with it again, or gets sick again herself.. She hasn't been off the antibiotic since we found out she had PANDAS.. but it doesn't seem to be enough to keep contact(exposer) symptoms away.. and she herself got sick twice while on the antibiotic.. not with strep but she had an abscessed tooth that sent her into a big flare, and this latest flare she is sick.. with what the doctors say is Croup. but she is still in a flare.. so I'm pretty such she has moved from PANDAS to PITAND.. UNLESS.. the abscess was caused by a form a strep.. and unless the doctor has missed the strep in calling this Croup. We did not do blood work with the Croup.. but we did run her ASO and stuff with the abscess and they were in the normal range.. I guess this line "aren't consistenly bringing her back" is sticking with me.. I am sick of bringing her back. would IVIG keep me from having to bring her back... or would the IVIG still only give me a few weeks/months of normal before she is exposed or sick again?? I'm sure there is no 100% answer to this.. I'm just thinking outloud here..

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~

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???

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??? could she get to 99 or 100% with IVIG and stay there... or would it be like it is on the antibiotic where when exposed she gets mild symptoms and when she gets sick it gets bad??? This is my question... That being said.. her immunologist told me she would be willing to treat her with IVIG if I wanted to go that route(saw this doctor today) Though she has never used IVIG for PANDAS my dd is her 1st PANDAS child.. she said she would want to see what Dr K and Dr C and the others are doing.. but she would be willing to do it for us... Now I don't know what to do...

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.. we incressed the antibiotic(we had moved her down to mantanince dose) and had the dental work done that was needed.. by the end of Nov and all of Dec 2010 she was back at 99% well again.. In Jan 4 of the 6 of us in our family caught strep.. This had her having symptoms of PANDAS for two weeks. but after that she did good 90 to 95% better for the end of Jan and 1st part of Feb, then 99% better at the end of Feb.. ONLY for her to get sick This month. Last tuesday he symptoms came back and has been getting worse and worse by the day. Last Thursday she started running a fever and was coughing her head off non stop.. So I took her into the doctors on Friday and they said she has Croup.. They did not increse her antibiotic but did start her on a 5 day treatment of steroids for the croup... since i always heard about Steroids helping with PANDAS.. I had great hopes that this would help both with the Croup and also with the PANDAS flare she seems to be in... but we took the last dose of steroids yesterday morning... and she is not only still coughing but the PANDAS symptoms are worse. So I am back to thinking about IVIG... but I have so many questions... One is every time my dd has been in a big flare since starting treatment for PANDAS has been when she herself is sick she gets mild emotion/mood symptoms when she is exposed to something.. but the big OCD, anxeity and fears and even bigger emotion adn mood symptoms like crying for hours and hours and not sleeping or letting me leave a room type stuff only comes when she herself has been sick. And what I have found to this point is that it takes an incresse of her antibiotic and then about 4 weeks for her to be back to normal. I'm wondering what would IVIG do better then the antibiotic... everyone is always talking about the wonders of IVIG and how it is the best for PANDAS. but then i read of it taking about 3 to 4 weeks for the benifits of the IVIG to start showing.. read today about a child who had it done 4 weeks ago and yet today would be only day 3 for there child to be having good days... so 4 weeks to see results with IVIG and 4 weeks to be symptom free with antibiotics. Then I have seen kids post IVIG who are still having the mild symptoms when exposed to strep.. and then those who end up with symptoms of PANDAS when they become sick.. again... So I don't really understand what is it about IVIG that is to be better then the antibiotic.. PLEASE don't take this post as me bashing IVIG in any ways.. I really know nothing about IVIG and the reason I'm posting at all is I want to know more.. because I"m thinking about if this is something I should be doing for my dd.

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 grades because, usually, your child is in one classroom most of the time, with the exception, maybe of fine arts or phys ed, so that one teacher just needs to be on the same page in terms of accommodations, techniques, etc. But once you get up into junior high and/or high school, where the kid is changing classes every 40 to 50 minutes and may have a team of as many as 7 or 8 teachers, assuming he still needs some significant assistance and accommodations during exacerbations, the IEP has made things a lot easier for us. The case-worker serves as our primary point of contact so, say, when he's moving into a period of exacerbation and we need to call upon an increase in his accommodations, all I have to do is get in touch with her, and it's her job to circle the team, fill them in, help DS advocate for his needs, etc. It really simplifies the process and gives you a "go-to" person.