melanie

Brooke what is your childs dx? Is it PANDAS?

Hi Good uck tommorrow.Please tell me how you got BCBS to cover this I have them too they covered 1 but wont do it again HELP

I dont know about zith but with dannys other meds the answer is YES!! Even his psych says theres a difference.Teva is suposed to be the better generic so I hear go onto crazymeds.com or org(not sure) you can read some good stuff about generics.Also if the md writes no substitution sometimes the pharmacy has to give it to you.Some insurance companys suc* like mine right now and if they offer generic you have toget it or pay the full price. Good luck Melanie

That sounds like a rash dannys 15 so he gets pimples

Thats funny that you say that about acne When danny is at his worst tics and behavior, I notice his face has pimples , when hes at his best his skin looks better.I always thought hum acne hormones testosterone pimples(oh and risperadal) but maybe its the other way around the pimples cause an exeserbation(sp) of symptoms.I love this forum! Melanie

Definitely give Dr. T. a call. I don't know how safe clindimycin is long term? If I were you I would ask about going on daily Azith. (perhaps 500mg/day) esp. since your son has responded to that in the past and it seems pretty safe for long term use. He just called Hes putting him back on the clindimicin so I feel better stilla waiting the blood results Melanie

Hi dannys been on clindimicin 150 x2 a day .Im out now and am awaiting reply from DrT.Hes been pretty good not great but better than before the meds.(I think)should he go back on it should it be increased?Still awaiting blood work results from Dr T now what now what. Melanie

Today was pretty good too.I gave him the antibiotic this morning and 400n mg advil around 9am i didnt see any motor tics untill later this afternoon.Did start ticcing around 3-4 pm interesting he wasnt cursing nor angry at all.Im loiking this .How long does advil last? Melanie

Looks like the hospital requested that we not give Advil during the day before or the day of her IVIG. Why not advil when we did the ivig we were told to use tyl too .But If advil helps why not .Im giving danny some advil (testing) 400mg am I hope this is ok?

It wasnt that much blood for the test we did and no I go to lab corp.I dont know if Dr T does do blood.I cant get blood done there I have to go to LAb orp because my new insurance su--s!Oh Im a little mad about my insurance.How much zith r u on?Im going to ask Dr T to increase the clindimicin to see if that even can help more.Not sure if the behavioral change is even related Is there a way to find out? Happy Turkey Day Mines in the oven Melanie

I dont know what it is hopefully its the clindimicin kicking in.Were still awaiting blood work with Dr.T Ill take it for a while god knows we need it.Wehave been using some advil 400 mg in the am Not sure if thats it .Danny was pretty sick last week sore throat and fever.No strep but glands were swollen maybe mono?maybe not? Seems all better now . Have a nice Thanksgiving Melanie and danny

Could you all please post the contact information for Immunologist you have found helpful? It would be great if someone could start a thread on that. Isabel What state are you in?

how much does your cho;d weigh

Hi Ellen We see Dr.T also and am taking clindimicin Im feeling good about Dr.T also my son is 15 and not doing to well He has verbal tics and curses whenever he hears people stammer Its driving him crazy and we really need help Melanie

Was Dr K able to get the insurance to cover any of the second IV?

peglem, I imagine you have looked at this already, but I thought I would pass it along... "Some people with low serum IgA have a clinical course very similar to people with Common Variable Immunodeficiency." http://www.immunedisease.com/patients-and-...deficiency.html Oh I think this is what triffiletti tested danny for He said his ig?was low and if its low maybe he could get ivig treatments but wait if he is low and now hes sick wouldnt that make the igm gigh making low levels not sow low get it? Does that make sense? Melanie

It was a long night he was snifffling and blowing he has a low fever . Ive been giving him advil every 7 hours and a tyl pm around 3am .gLANDS ARE SWOLLEN Hope this goes fast ,His behavior at school wasnt great yesterday and todays not looking great Im tired Im confused Im frusterated melanie

Went to the md no strep but mabe mono or something viral.Needless to say she knew nothing of pandas.It was kindof funny she asked why is he on clidimicin i said pandas she said acne i said pandas and she said oh oh It was funny.Any way hes sick and his throat is sore and he has a fever.Not much but Im sure it will get worse .Ill give him advil I called Dr T maybe he can up the clindimicin. Thank god its the weekend. Melanie

Hi Sue I got a history from the pediatrician call and ask foer a copy mine made me pay a dollar a page but (58$$$)that means 58 pages he was always sick . Melanie

I cant believe this his throat hurts and hes on clindimicin why why I ask why Im taking him to the md in an hour to get a strep test This is just unbelieveable I guess Ill call Trifilietti Melanie

thanks

Hi anyone have an issue with sight .At school today danny complained to the teacher that his eyes hurt and that he couldnt see the stripes on the american flag.Also when he was writing he said he couldnt see the words on the paper.This happened quickly and went away just as fast. Hes acting fine but well wanted to put this out there.I called the psy and the neuro both think it may have been the increase in the risperadal.So Im going back to the original dose of .5x2 Melanie

For what is it worth, my 16-year-old was just diagnosed with PANDAS. He is not completely through puberty, but well on his way. IHis case has been relatively mild compared to the severe onset of my 8-year-old who had the horrific rage, ADD, OCD, Anxiety. A lot has improved since we did IVIG in July 09 and started Augmentin. I too had a very difficult time restraining him. He is 8 and weighs 95 lbs, and was up to 100 lbs before IVIG. I have been told that it goes away, or they "outgrow it". I am kind of stumped about what I should do with my older one though. He has OCD/anxiety and tics mostly, and fortunately for him, the ocd has helped with school. I am seriously interested in finding out if I have PANDAS@! I think it goes away if its treated properly My son is 15 definitly going through puberty still and is finally being treated for an illness he has had for a long long time Melanie

Ifyou can name a drug we have tried it SSRIs arethe worst he takes risperadal .5 2xperday and buspar 15mg Rispeadal worked at first pretty good now well Im not sure IVIG worked great for about 21/2 weeks Melanie