melanie

I knew he had a sinus infection but didnt know about the sore throat till this am.Hes staying home again but ..Hes on IVIG every 21 days and antibiotics right now ..I had some blood work tuesday to see if Im carring anything..UGHHH Melanie

Not sure if this will help but..Dr.said it is a sinus issue with eye sensitivity.We saw the immunologist yesterday and she put danny on med said he has a sinus infection again.His eyes have been driving him crazy allergys and now sinus.He has been wearing sunglasses everywhere Try that ..Oh and allergy eye drops help too.AND TRY GIVING HIM CARROTS.. That always helps distract him. melanie

HI Danny has had many infusions and his eyes are always bothering him.I have had them checked several times and they always say allergys

60 grams so I think thats 1 g per kilo maybe low according to this group

Dr said she typilcally doesnt prescribe it for sinus I am so sensitive to the ones that do treat for sinus.Azith and leviquin.Im just wondering why I feel better maybe it wasnt a sinus thing Melanie

I think I need a lyme test,ps my back didnt hurt as much either

I think I had a sinus infection so the mD gave me cipro.I think my head is sooo much clearer ,Im not tired and feel much more alert. anyone know how cipro works and what specificlly it treats. I feel better than I have in months and Im not even sure if it was a sinus infection .Just guessing Melanie

I cant believe how fast 21 days is sometimes.Well 20 this round counldnt schedule the IV tomorrow had something else scheduled. Last month wasnt so great but hes had some real great months so . Have a great day everyone Melanie

Really interested in this.Thanks for the help.I started yesterday at 600 was concerned that was high .But I guess not Ill try it 2x a day 1200 and go from there.Im stressed with him right now.I like it better when things are good.Hes soo OCD right now.I dont know why.Dr J thinks its his asthma,I dont hink thats it.He was 80% up till last month .Now 60% .Iv scheduled for thursday . Melanie

OMG YES dannys have been off for 2 years but I definitly saw increased symptoms when they went on.Im not sure if its just the age when they went on Coincedience or what but yes.

Decided to try the NAC because I cant get the Risolone(sp).Read alot on OCD websites about studies and success .I know that it has had some success. Question is How long till you see results if any? How much 135lb male 16 yrs old ASD/PANDAS IVIG every 21 days 60 grams Thanks for the help melanie

Hi we did a lyme test and it came back (boderline) he gets IVIG every 21 days so all tets will be inaccurate.I started NAC today 600 mg Ill see what that does .I read some studies seemed promissing,we will see . Thanks Melanie

I think I tried NAC before ,Ive tried everything,but holiday break is comming so maybe Ill try it again.What dosage ?Hes 135lbs 16 yrs old IVIG every 21 days 60 grams. HELP melanie

Insurace says its not FDA approved for OCD and its 1,000 dollars OOP.I know it has to do with Glutamate (sp) what else works simularly??HELP Melanie

Hi havent been around much because things are pretty good.Still having some of the anger issues .Im not sure if its the ASD or the Pandas.Hes not really taking anything Intuiv celebrex and a baby asprin.Nothing for the anger ,feel loke he needs just a little something.Any suggestions ?Hes a;sp doing the listening program week 4 I dont really see anything so Melanie

ditto mom md

Very Very happy for you!!Please let us knownhow the boys are doing Danny is 16 and the age thing I get..Were having IV #14 or #13 tomorrow cant even keep track anymore . Melanie

Social worker for school or state.That can make you worse then me haha.But yet Im covered under NJ direct same insurance .My sister has NJ direct too .shes a SW for schools and my BFF is a social worker for the state and she has the same insurance as I do. melanie

Im also a NJ direct (teacher) Im covered I dont know the dx coverage I have to look Melanie

We Have BCBS NJ we do IV every 21 days at home.I dont know the DX code but he is immune deficient Melanie

I dont get how these numbers arent scued due to the IVIG.My immunologist says that most of these tests arent accurate because of the IVIGs.Maybe its just us we do them every 21 days. Melanie

Cant get insurance to cover the meds.Psy wants me to contact them to enter study. Melanie

We do 1g per kilo every 21 dys.That is working for us.This is a very touchy subject.The best advice is to find the best MD you can ,someone who you completly trust. Melanie

I think I tried that and he had alot of hot flashes Melanie