croatianmum

thank You rowingmom, I really don't know what to do any more.he squeekes; his neck is jerking; his mouth are opening; his eyes are rolling; his shoulder is twiching... There are no doc's in our country, so I'm alone here, ''playing'' and pretanding to be a doctor, following Your advices and than traying to find out (alone, again) what can cause the problem. And the language is also a problem, so sometimes I don't understeand everything You write about so many lab tests..I have never even heard about some of the testsuntill now. But, I will try to do what You say.. I'm allready giving him flaxseed ol, b complex vitamine and probiotics. Unfortunatly, my instincts are whispering that his symptoms are more TS like than pandas..but, if dr K belives it's pandas, than I should trust him, right? thank You again, I will check tomorow for some possible lab tests for lyme, bartonella ecc. in our country. But

Just to explain shortly our story. My ds 13 is having problems, mostly tics and some minor OCD since he was 6, with a very big tic explosion at the age 8.We live in europe and so he was diagnosed with TS, and he was on different meds for the next 3 years. Than we met dr. K who diagnosed him PANDAS, and this seemed very logical to us aspecialy because my son's ASO titers were high since he was 4 yo. We had our first IVIG in June 2012 with some results (I'm still not shure if the short lasting betterment was becuase of IVIG or because of the waxing and waning of symptoms). he was on Augmentin (and still is, 2x1000mg daily). Couple of month later his tics have returned, and he's biggest problem is this horrible loud vocal tic so in flares he is losing his speech, we are sometimes not even able to understeand what's he saying.. We have tried ibuprufen - did nothing. In january 2013; we tried prednisone; 5 days; 40 mg daily. this was a living nightmare. His tics have gotten so much much worse, it took him more than 14 days to feel some betterment after this. Than, because his ASO was still high, we have removed his tonsiles and adenoids in May 2013. He was getting IV abx before, during and after the surgery. he was doing absolutely great for a month, and than, again, all the symptoms have returned. So, we decided to go for a 2.nd IVIG. He got at the end of August 2013, -about 2,5 weeks ago. Still no relief. he screams, and screams..every word beginns with a loud scream.. So, I was thinking about Lyme; but, he was never bitten by a tick; and in our country here on the mediterranian sea they are not dangerous at all. so, no Lyme probably, and very probably no other coinfektions..but, I'm gonna test him soon. So, what do You think? What are the chances..no help from abx; no help from IVIG; got worse on prednisone..the only thing pointing to pandas is his high ASO for the last 8 years. There's a voice in my head telling me that maybe he really has TS not pandas and that I should stop with all this abx; IVIG's ecc... but I just can't give up. How do I know? What do I do? Why notthing is helping him..there are so many great stories about children gettng better only from abx..Why isn't he getting better? What do I do next? Another IVIG? PEX?Does it makes any sence.. I would really like to hear some experiences from You who have had more than one IVIG.It would be great to hear someone to tell me that Your child did not response to first IVIg but a second one or even a third one made a different.. Is there any hope at all..?

dear bhenry, we are in a very simmilyr situation. (I'm just gonna write a new post with some more questions here).. My son is 13 now. he had symptoms since he was 6.Missdiagnosed untill 11,5. he recived 2 IVIG's allready (high dose, 2 mg per kg), he's on abx for 1,5 year now..and still no relief. Before our first IVIG But, we had an appointment with dr. K, and he told us that no matter how long a child is having the symptoms,one month or one year or even years, if it's pandas IVIG will be helpful. so, Your chances are pretty good I if I were You I would definitly give it a try best of luck

oh yes, it helps. Offcourse we have them here. I had no idea what it menas. thank you

we are also on a high dose of augemntin, but his ASO is rising anyway,so, we hope the tonsilecotmy will be some relief because he has got a lot of terrible tics.

Soory for asking,maybe this is a stupid question but I see here so many parents talking about getting IV ABX; but I don't know what it is. I'm from europe, so sometimes I can not understeand everything You are talking/writtenig about, so any info would be appreciated, thank You

My son was soposed to get IVIG; but, after meeting our PANDAS doc., and because his ASO is rising (was 260; now on 500); he want us to remove his tonsils first. So we hope to remove the problem with strep. he also said that he will feel worse after tonsilectomy. The question is -have You seen some long term betterment after removing T&A? Any one had some obvious positive results from tonsilectomy ?

Oh, that's so great to hear.You all gave me hope. We are preparing for the second IVIG, before we do that whe also needs a tonsilectomy (sorry for my english writting). Can You maybe tell me for which infektions I need to look? His ASO titer is 270 for the last few month; and since we live in Europe; it would be helpful to know where and what kind of infektions are most coomon in PANDAS children?I'm reading here about bartonella; mycoplasma pneumonia, Lyme ecc. Is this engough? What would You suggest? Wich tests do we need to make? We are lucky that the doc. here would prescribe all the neccesary testings as far as know wich ones?

Is there anyone who had verry little or no improvement with a first IVIG, but a second one made a different? My son is 13 allready.. Really need some encouregement..

thank You. I jut got results from another lab, and there is ASO even higher it's 275; dnaseB is negative. but, again, it is a confiramtion that he had a some kind of contact with strep?

I just wrote a previous post about my son's ASO, and it was before reading a post from Buster explaining the ASO very well. Butafter reading Buster's post, (and maybe it's because of the language), I would like to clearly understeand one thing. My son's ASO is 260, and he has a strong exerbation for the last 3 weeks. So, the question is: no metter if ASO is rising, or falling - elevated ASO is still pointing that something in his body reacted to strep? he can not have ASO higher than normal if there is /was absolutely NO strep ? So, ASO is an answer of antibody's to strep?

I had some problems with signing in, so I needed to change my members name, but it' very similar to the former one (Croatian Mum) so, some of You will hopefully remember us.. Just sorry for the pemails and messages. We have really long long history; but just in short let me tell You what happened lately: my ds12 had IVIG 21.July 2012. he was doing fine, and than right before Christmas he got tics back again. We have tried Ibuprufen, he is still taking 2000 mg of Augmentin 2 x daily; and finnaly we have tried prednisone in january wich only made his tics much worse. It took us exactly 14 days after prednisone to see some improvements . Than, he was Ok for 7 days, and right after that his brother got some stomach virus, fever etc. So, my son got also fever; and I was SHURE that he is getting the virus from his brother. His fever lasted for 1 afternoon, and suddenly all his tics came back.. Soon after that he got the flu; and interesting thing: after flu (and I was treating him because of the high fever with ibuprufen for 6 days); most of the tics were gone. So, he was able to funktionmore or less, not doing great, but but he was ok. The last 2 weeks (exsactly 1,5 month after his first fever), his tics are on maximum. Have no idea how will he go to school. Don't think he will. Anyway; we had some blood test done because we are (finally) at the end of preparation for IVIG; and his ASO came 260! So, the dr. here explained that there was a strep infektion going on so the titers are falling slowly; or than a infektion is here , so the titers will rise. We haven't checked them before (STUPID ME); because we were convinced that he can not have strep if he is taking so much abx. So, after beeing so worried and full of doubts if my son has Panads or Ts; don't You think that this is a sign? I know that the ASO titers 260 are not that high; but they are higher than normal, and this could only mean that the body was/is fighting the strep?because they don't rise for any other bacteria but strep? Am I wright?