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Everything posted by croatianmum

  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 for 3 weeks, somethimes for 2-3 month.Than it goes away and motor tics come, so they just switch . I'm also gonna have a nervous brake down,..just can't stand it anymore. every time he get's better I hope they will maybe never return. But they do and I hate them..so, the point of this post is that You are not alone. I know it's not helpful, and I'm sorry.. The only thing I can recommend is botulin injection directly oraly in his troat. This was recommened to us by a TS docotr in Milano, Europe. But, as said at the time we were dscovering pandas because of his history of strep and high ASO titers, so we never tried it. But, if it continous to be like this, I will think about it as an option.
  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 his system stronger in fighting with EBV and HHV6. Any help is appreciated.
  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 agains strep and viruses?Or what? The same thing/questions is with herbs.. And a question about the gut - my son had allreday had candida in his gut; we were treating it with Plymicol. Now he is on low dosage of abx so I'm only giving him a good probiotc. Is that engough? sorry for so many questions - but I would really like to know the answers. Thank You all for Your help
  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 available here, check for Lyme , bartonela ecc. Hope something will give some results.. he is doing litle bit better - but the fear of tics comming back just paralises me so I can't even enjoy the good days I was thinking about giving him B-complex; and can You please recommend a good antiviral I can give it to him?
  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 now not even to send his blood to some other country like germany or UK. Also, When my son was growing up he was sick most of the time..always something, some viruses, infections, ecc. Who knows what was going on and how many things were undiagnosed. Lyme is also possible - he grow up with 6 dogs, (my mother has them - working dogs, not pets). The dogs have lot's of ticks every time they come from a walk in the wood and my son is spending a lot of times with them. I can not rmember ever beeing beated by a tick - but, maybe we missed some minor infection..who knows. Even than I was very careful when he came back from the walk with dogs, having him shower immediatly because I knew long time ago that tick can be dangerous. But, again - who knows.. I just wish we could find something..some reason why is he not getting better, so we can fight the real enemy. This way , I feel like Don quihote..(hope You know him Fighting and fighting but I constantly have a feeling that there's a puzzle piece missing, and that he will get better when we find this piece. It's very exhausting, he also has ADHD, so things can be pretty bad sometimes (most of the time) And powpow - yes, it takes a lot of time and energy traying to help him from here where we are..so, again, I'm thankful for all of Your help. This forum means a lot to me.
  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 come false positive - what do I do than? No one in our country will be willing to treat him for Lyme whiteout positive tests. So, a dead road. I also suspect bartonella because of the rash my son used to have on his back (strech marks, very red). I sent pictures of the rash to a Lyme specialist dr. in UK, asking for opinion and he said it looks like bart..But what now? I don't have the money any more to go from our country to another one to see a doctor. My son is currently in treatment with dr. K; who diagnosed him with pandas and he is very helpful, answering emails ecc., but I feel it's not engough because it's difficult to treat a child with pandas by email. So, from my piont of wiev; I have no proof of autoimmune response..because no testing was done when he was in a flare, except for prednisone course wich made things worse. Eve the facck that my son is now 2,5 month post 2.nd IVIG and doing better, I feel that his tics will come back again, so, I'm exploring other options..asking questions..answers.. Most of You also know how hard it is to treat pandas in USA - can You imagine dealing with it from outside USA?? Most of the time I'm my son's advocate and doctor. everything I know I learned thanks to You people here and on FB who are always willing to help and answer to my questions, thank You for that. So, what's next..?Lyme testing; Bart testing ecc.. PEX? plasmapheresis, another IVIG? Honestly - I don't know. For now patience is the most important weapon that I need..
  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 problem are his tics; and this one very loud squeeking tic is the worst. So, after beeing on abx for 16 month (the last 4 month on Hd abx); after no help with steroids (made him a LOT worse); after having 2 IVIGs with little or no sucsess; I'm beginning to think - if it's too late for him? this doc story is something I was affraid of. I know our bodies are different, and everybody reacts differently, but I'm just so sad because nothing seems to work for him. Offcourse, I will not give up, I will not stop fighting; and I will try to do anything..it's just that I don't have so much fate like I used to have. I don't expect him to be cured 100%; but, if only this tics would get a little bit better so he can walk arround whiteout this scream it would be great. well, i's a long journey still in front of us..thank You for help and for beeing supportive, it makes things easier when You have someone to talk to
  16. yesterday I had a long talk to immunologist doc. here in our country He was treating one 17 yo pandas boy. Tried IVIG; abx; Pex, had medicine for lyme and bartonella also...nothing was working, the boy didn't improve.he was better for a while but than again all his ocd and tics came back again. This doctor opinion is: ONLY in a early stage pandas can be improved with abx and IVIG or pex. If you start treating pandas years after first symptoms, the children can not be helped. hi said that the brain damage is allreday to big to be fixed;it's permanent, and that there is nothing else to help.. Is it really so? Are there some sucsessfull stories in treating pandas years after first symptoms? my son is 13; 2 IVIGs didn't helped him, so I'm really kind of hopeless, aspecialy after what this doc.told me
  17. just came from the doc. Our younger (non pandas) child (2 yo) has strep in his troat (fewer, vommiting, not able to swallow for the last 7 days..). So, tomorrow morning I'm going to show the lab test to his doctor. he will probably get some penicilin; but the question is: 1. how long do I keep him on abx? is the usual one round of 10 days on abx engough for him to get rid of the strep? It's his 2. throat infektion in the last 4 month. 2. How do I protect my older 13 yo PANDAS child (7 weeks post IVIG, on hd abx for the last 4 month ) from getting strep again? he had the last strep infection 7 weeks ago, unfortunatly right after IVIG.. Obviusly, they are just playing ping-pong with this strep beast..how do I stop this??
  18. my 13 yo son is 5 weeks post IVIG. On the day before going to the IVIG treatment his tics just exploaded, but I assumed it was the stress because of the going to the hospital the next day. So he got HD IVIG; and his tics were present all the time.His ASO was meassured when we arrived to the hospital and it was 69. The tics have continued, didn't improved at all. So, I tought maybe there's something going on. few days ago I decided to check his ASO titers and they are 250 again. he had t&A removed this summer) . So, in this after IVIG month they have increased. he is on HD abx (augmentin 2x 1ooo mg for the last 3 month). His tics are bad, vocal and motor. So, what now? is our IVIG ruined by a strep infektion that appear on the same day as we went to the hospital? Could this be possible? because the increase started right before IVIG? Do I need to change abx? What do we do? I'm desperate..
  19. Just an update: talking to bhenry mom here in another post; she mentioned bartonella rash. I wen tto google and so I found some pictures of bartonella rash which look the same as my son's rash. my son had it for 5 times in the last year, and no one couldn't tell us what it really is.So, on one hand; I'm hoping this is bartonella related; and it explains why the first IVIG was so ineffective. Offcourse, I'm not 100% shure; and we will run some tests; but, it would explain certaing things to me.
  20. Dear bhenry mom, Now when You mentioned rash; I went to google; - bartonella rash- pictures...and OH MY GOD!!!!!! some pictures have the sam rash as my son had 3 times in the last 1 year on his back!!!! Exactly the same!! I can not be more surprised than this! At the time, we took him to the dr. office; and N oONE (not even dr. K who saw the picture of this rash) conected this with bartonella. They told us this is maybe an autoimmune reaktion, maybe vascultiies; maybe nothing...but they offcourse did nothing. But he had it in total 5 times in the last year!! And it really does makes sence! But, the rash would always come and go in 3-4 days. Is this normal with bartonella? Oh, well this a big, big thing for us! Thank God for the people on this forum, thank You bhenry mom for mentioning this rash to me!
  21. dear bhenry, my son is augmentin 2x1000 daily for the last 1 year.no help at all. . We tried steroids in Janury 2012 - the worse time ever!!!he had his 2.nd IVIG 3 weeks ago. So, now we wait to see the results from this IVIG; but, unfortunatly his condition is still the same, so I'm preparing to do some additional lab tests for lyme ecc. as some dear people here advised me here. Hope Your IVIG will be approved.
  22. I just saw Your post. my son is 13 now, but when he was 8 he had coprolalia also, together with a lot of different tics; and also a loud vocal tic. We did at the time . also risperidone, orap, clonidine for a couple of Years Years later, he got diagnosed for pandas and we gave him prednisone in one of his f.lares and it only made things worse!!It took him about 14 days to get to his previous condition. I haven't read all this answers here, but I will do it later (my baby son just woke up); I'm courius about the answers because we have very, very simmilar symptoms. Best of luck to You
  23. Thank You for Your answers. I will do the testings . I called the lebs here and they can do it. The question is if it's ok to do it so early after his 2.nd ivig (3 weeks ago).? And about dr. K. he never mentioned any other possible virus/lyme ecc. he insists on augmentin, even when I asked him about some other solutions he never said anything abour adding /changing abx.he also never mention 23andme (I don't know what is is, but I sopose some lab test ). he ordered some lab tests for ASO; andtiDnazeB; and some circulation immunokomplex; but they all came just fine.Only his ASO was 500. all other tests we have done are fine. I feel so lost.I feel like I'm playing a doctor..thank God for You people here. You are all so helpful.Not to mention that there is NO dr. here who knows anything about pandas, so; it's a battle on every field, so Your help I highly appreciate.
  24. well, You have convinced me to check for lyme and other coinfections.I wrote that there is no lyme here, because this is what the doc. here told us. The ticks are dangerous but in northwestern croatina, and not on the coast where we are.. Also, to mention, as soon as got home form a 2.nd ivig; he we all had a big cold in, we all had one. can this little cold ruine IVIG treatment? if so, how on earth am I gonna protect him from getting a cold; or some other virus...he has a little brother who get's sick like any other 2 year old boy; ; and he goes to school, meets other children. winters are cold here with typical winter deseases, flu ecc. how do I keep him healthy? How do You keep Your children healthy?
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