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croatianmum

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About croatianmum

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  1. When EBv and HHV6 were discovered he was at the hospital because he went from 20% to 150% ticcing in 2 days. BUT, our doctors said that he don't need any treatment at all.he also said that he does not belive in pandas at all, and that he would stick to TS experts 8and there are NO ts experts in our country) at all. So, You be clever.
  2. Before our secont IVIG my corespodention with dr. K was great. I wrote only when something was really wrong - worsening, instructions for IVIG - thing like this. I never bothered him with loong mails,any many questions (not that I didn't want to,but, I belived that he is busy, so I was traying to be concrete) and he always answered. and after I told to dr. K that his tics are fully back again even after his 2. IVIG he never answered to my email.I sent another one with the same short question, only few sentences about what to do - he never answered..
  3. Dear, my son has a screaming tic too - so I know how You feel. He can go from a quiet one up to a very, very loud scream every minute. You can check my posts here, and on pandas forum too because I still don't know where we belong. We are fighting this scream since he was 8, and he is 14 now. he was at the hospital 4 days ago for 10 days, and they found that he has EBV and HHV 6, so I'm traying to find a way to solve this thinking that maybe EBV is causing a flare. I haven't found anything to calm this scream yet. It's horrible, loud, every 2 seconds somethimes..somethimes it last
  4. unfortunaly, out 5 days trial with steroids were a disaster. His tics exploaded up to the level I have never seen before.
  5. We have a loong loong story behind us. 2 IVIG's with no sucsess. few days ago we dicovered he has EBV and HHV 6 titers. he also get a very strange kind of rash on his back. The docotrs here in our country told us it's vasculities, but they are not shure at all. and this time I noticed that after that rash showes the symproms get much worse. I'we read that EBV can cause this. I know that EBV is here for a lifetime, but I'm thinking if his immunesystem is strong engough maybe the virus can ''sleep'' and not disturb - not cause a flare. So, I need a good something to make h
  6. oh, soory - I reported Your post instead of writing an answer to You ..I apologize for that. My question was : I don't speak english so good to understeand everything - so can You maybe explein this bit better to me? My son had his ANA negative, IgG, and IgM levels are fine, but after 2 IVIG's he is not doing better at all so I'm thinking about pex. Is is worth doing it if his autoimmune tests are all negative? And when we tried steroids last year he had a terrible reakction to them - ticcing worse than ever.. So confused about all of this...
  7. our sory is the same as dgfindley. he is 13 yo, 2 IVIG's behind us - no help at all. he is in a big flare right now, having A LOT of tics all day long. Also thinking about pex so I would like to follow this topic
  8. thank You all - so what do I do about b-complex? we were never tested for HMHF mutation (don't even know what it is). From what I've read, I undrestood that B12; B3 and aspecialy B6 are good for the tics. Do I buy them separately - is it better? And about homeopathy - I'm not shure that homeopathy is developed in our coutry as is it in USA or in some other even european countrys. I can try to find someone good - but - what do I ask for? I'm definitly shure that no one of them here has never heard about PANS/PANDAS! So, what do I ask for? Something for his immunesystem? Something ag
  9. I will do my best. You must also know that most of the antiviral, herbs ecc., even some vitamins are impossible to be find here. I just don't have engough confidence even to try homeopathy - because most of the doc's don't know anything about pandas and homeopathy is here still not developed engough for me to risk. He is now taking only abx (augmentin) and probiotics and Flax seed oil. One step at the time -I've got a list of most of the usual testings that You do In USA (got it from FB), first we will do is to talk to our infektiologist to see which tests are avail
  10. thank you all again. I have contacted lyme doc. in our country and he is willing to make some lab tests but we need to wait some more time because we are 2.5 month post IVIG. You should also know that my son was not diagnosed for 7 years (or more), we went from one doc. to another, spent most of our money on some wrong tests..When my son was at his very worse (even echolalia) at the age of 8; i qiut my job so I could stay home with him and help him with school and general things. Our country like many others is going to the economy crisis, no jobs here. There is no money left right n
  11. thank You all. Unfortunatly, my son had very little tests done because we are in europe, where pandas is even more controversal than in USA.The ones we have done all came back OK, except for high ASO titers which was elevated even on HD abx . My son, unfortunatly had a very bad reaktion to steroids. He was so, so ,so worse during the 5 days course of prednisone. It took him 21 day to come to the piont before prednisone, and far from beeing good. I just don't know any more. about Lyme - many parents advised me to do the testing - even if I do the lyme testings - but they often com
  12. So, my son is 13 yo. we had 2 IVIG's in the past. never checked for lyme or any other co infektions. We are now 11 weeks post 2.nd ivig. My son's tics are now much better, but I feel that they will come back. I don't know why, but I think that this betterment now is not because of IVIG, than because of the waxing and wanning..so, I'm allreday checking for some other option. What are Your experience with PEX after unsecsessfull ivig?
  13. thank You all..everytime I think I will find a solution something happens.. Today, unfortunatly, my younger non pandas son,sweet 2 yo; just got a scarlet fever..I can not be more sad than I am right now.. offcourse, my older pandas child reacted with a worsening .maybe I should write a new post about asking how long do I keep my younger on abx to make shure the strep is gone..I post something about ping pong strep, and I was definitly not mistaking (:
  14. Honestly - I dont know wich infektion was treated. Any I would say. he started with IVIG right after diagnosis; and got his first Augmentin 2 weeks before IVIG, and continued for the next 16 month. I increase the dose of augmentin when he's in a flare, up to 2x1000 mg daily; but with no sucsess. I even ask his doc (dr. K) about changing abx, but he said no. so, he is taking augemtnin profilactic, but, again, as I said, with no help.Don't know why, when it's obvius they aren't helping any more, but I can not take him off abx - too affraid to do it whiteout doc's blessing
  15. wow.. I'm so glad You and Yourr children are feeling better now. It's just that my son had his first strep when he was 1,5 yo; and than the other strep at the age of 6 resolved with pandas ( I belive it's PANS).He had his worse time at the age of 8, but at the time he was treated for Tourettes. finally, when he was 11, he got the dx for pandas and got his first IVIG. it took us almost 5 years to come to the right way. My son's ocd is very mild, (he is also cleaning his room every evening but - honestly I don't mind this at all - don't find this disturbing in any way ) His
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