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Showing results for tags 'nothing is helping..what now?'.
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..?