melanie

Thank You all.I will let you know whats going on Looks like second week Nov.Im off for teachers convention.(nj). Melanie

Thank You!!We have been doing IVIG every 21 days for almost 2 years.Change is hard for me but necessary.Hopedully the insurance thing works out.The MD said something about 5 excnges? Not sure what that meant or even if I heard him correctly.Hopefully Ill hear something this week.Dans 17 1/2 .142lbs,Is the port process that bad? I havent really told him much about it.Were your kids in the hospital for days or just 1 day? Melanie

d Think we are going to do it at NYU..Waiting for the insurance stuff Ill let you know when I get more details.I wish others would respond. Been doing IVIG for almpst 2 years .Looking for more.Never give up.

Please tell me what you know If you have done it and is it a good idea? Thank You Melanie

Has anyone been to the Rutgers PHd program ? Danny started sessions with their TS doctoral students .Im hoping they can help but weve been to so many therapists I not to sure what to expect. Melanie

didnt have a thorough read but did want to comment.Danny gets ivig every 21 days and has for 2 years (almost) Hes a different kid .Still has issues but night and day.Not treated by dr j or dr k.Has immune defiencys so its covered by insurance and the nurse comes here my home for infussions if anyone has questions pm me

Awesome !!! Love hearing this from you Nancy! Melanie

I should have guessed it such a better day He said this am what pill is this ?I said celebrex like an ultra advil.H ewent to work with his dad and had NO NO anger at all .. I am home tomorrow with him so Im going to push him a bit and see .. Melanie

Dans had a rough few weeks ..Dont know what exactly it is .Could be the stupid hurricane ,(MD says that) But his behavior and tics (verbal ) has been pretty bad..Cant have a conversation with him all he says is Im stammering and Im not .Im going to try the celebrex and see. Ughh Will this ever freakn end ! mELANIE

me too i think it is the hurricane crazyness in nj

I didnt know that cymbalta was a nsaid ..also good for anxiety,, Anyone ever tried this with pandas kid? Dan does well on celebrex (nsaid) Melanie

when danny was taking celebrex his md wanted him to take previcid (or something like that ) he took it one or 2 days and hacted bad ,bad..I had told his md he cant take that now I know why..But he can take benadryl(i think) no issues humm??? Melanie

Tried real hard Peg ,do you know what raises histamine? How can you tell ? Melanie

Low Histamine?? Then why antihystamines?? I thought antihystamines took away to high histamines? How do you lower hystamine levels?? I cantkeep up anymore Melanie

Were probably the winners with the most IVs on this site(if you can say winners).danny has had IVIG 1 gram per kilo for 1 1/2 years every 21 days.I lost count but Im sure its like 30 or more.Theres a definite difference in his behaviors and his tics.He has SPID and other dxs.He has verbal tics and I dont think they are ever going away at this point.Hes 17 and its not looking good.His motor tics are gone and he is much better than when he started. Melanie

Does anyone know if supplements able to cross the blood brain barrier? How much GABA is recomended?Anyone know.. Melanie

Hi Lynn Dr Novatny I think I gave you her name .Shes great with us .Im not saying she 100% Pandas but she is a psychopharacologist(sp) UMDNJ Piscataway office 732-235-4402 Shes the only Psych I used.She gives danny the Namenda. She specializes in Autism if thats ok with you,but ask. Melanie

Yes ! He had ear tubes at 3yrs old

So his immunologist emailed me back that this number is not high OMG 7X the highest number not high.I made an appointment witht he MD who has published the article at NYU but hes on vaca and I cant get the appointment untill October.Ughhh In Staten Island at least its close Thanks everyone Im aggitated at the MD (immunologist) I emailed her back see what she says.He has an IV tonight supplement is a good idea? Do you guys think adding gabba supplement is a good idea? melanie

Danny recieved his bloodwork back (its 6pm no MD around) GAD autoantibody test 7.2 0.0-1.5 is normal Triiodothyronine T3 ok Thyorid Peroxidase TPO 73 0-20 is normal Antithyroglobulin AB 50 0-40 normal I dont know what this means at all all I know is the GAD test meanssomething to do with Diabetes?? HELP!!!!!!

Bringing this back

Why would the namenda cause this?I called his psych cant see her for 2 weeks but still searching for therapist Not easy to find a qualified one Melanie

WELL THINGS ARE NOT AS GOOD AS THEY WERE.wE WENT ON VACATION TO pUNTA Cana and danny had an anxiety attack and or a Panic attack .It was scary.I have notified his MD but theres really nothing we can do.He cant go on meds because he has had reactions to mostly anything we try.Im getting to the point of well theres nothing left to try,Still doing the IVs every 21 days and taking the namenda 2.5mg .He is impossible to talj to totally in his own head,agitated and Im at the end of my rope.DXont know what to do except leave him in his head .Md says its to help him relieve his anxiety.Im looking for a new thearipst to help in th central NJ area.Called Rutgers and the NJ tourette society.I think the asperger dx along with the other dxes scares PHDs away.HELP Melanie

Ok so which histimine agonists should be the determing factor.Tagament? or is there a herbal form I could try.I saw Dr J today and showed her the study She said she read the paper and wasntimpressed and told me to stop reading ..I laughed and she smiled ..Here I am asking you LOL Melanie

HI We have done infusions for about 1 1/2 years with 60 grams IVIG every 21 days.We have gpne from horrible horrible misrable to very good .My son has other issues too but the PANDAS symptoms were the worst. Some times after the infusions things are great sometimes not so great its the long run.I guess there are some here that have been cured with 1 or 2 infussions but we arent them.weve had probably 30 so far give or take.I stopped counting.I dont want to stop them they are helping him soooo much. Let us know how your child is and thanks for being a part of this study. Melanie