melanie

Hi wilma I use Dr Novatny at UMDNJ in piscataway. She is familure with PANDAS and we see her actually we see her today.Shes a psychopharmacologist(sp)so shes great with meds.She does work mostly (i think ) with autistic spetrum kids. 732-254-4119. Melanie

im in Monmouth county

Is it safe,Im thinking of it for me and maybe danny sorry about the spelling melanie

http://clinicaltrials.gov/ct2/show/NCT00354770 NAC google tric and NAC tons of research and its harmless ..We use it for OCD works Melanie

I see some old OCD stuff too..Are you still doing IVIG?

Just spoke with immunologist she said theres a virus going around and she suspects its that I dont know I m very frusterated!!Hows allie

Hi Dawn 5mg seemed ok until saturday ,6 days.it doesnt mean its definitly the namenda could be something else,but what?I took him off the NAC and we started the namenda.He takes intuniv 1mg am and ciproevery 2 days.(maybe that) His face is covered in acne and his anxiety is bad.Im going to call mds today who will all tell me to do something different.Im sad ,dissapointed and frusterated .He has an infussion saturday and Im not sure if im going to do it. Melanie

Please anyone who has experience witht his med tell me if you see this.He seems very anxious today ,Dan started namanda 1 week ago and I see anxiety and alot self talking.He does have anxiety so Im not sure if Im looking to far into this ..HELP melanie

I have phoned the doc the office said theat he will call me tonite hopefully. Melanie

thinking about you and Allie and prayong for her Melanie

wow thanks were starting tonight my question is dans 16 is it to late for the results in this study??I am going to google this dr andsee if he has any older kids on it Melanie

Dan does have tics I googled it for tics doesnt say makes it worse I sure hope not I hate his Tics !!Although I think his tics are brought on by his OCD ... Should I stop the nac melanie

Dans Psych gave us the script and I picked it up anyoneuse it good? Bad? Melanie

Hi He takes Cipro Ive tried ssris many times with horrible results.I dont think they are an option . Thanks also fish oils seem to make it worse too Melanie

What are you doing to combat this symptom? Do you have any studies to back this ? We are using NAC and had amazing results up until this week Dont know why but seems like it stopped working 1,200 mg 600 am 600 pm .HELP !!! Melanie

can you post the inositol study

Whats the dosage from Dr T?? I love him hes the dr who got the IV approved .We dont use him right now for the iv we use UMDNJ,thinking maybe to go back to him if need be. but Dr T is dannys neurologist we love him and trust him. melanie

Hi We get IV every 21 days with a CIVD dx through our immunologist.I have BCBSNJ direct.It wasnt easy but the immunologist and Dr T wrote a letter and it was covered. Melanie

Calling the MD but thought Id ask here too(more helpful) Anger and backpain any ideas?? Melanie

Im so happy you posted this THANK YOU!!!! I have been following this study and Danny gets 1,200 mg .Igive him 600 mg am 600pm .I amgoing to up it because I totally see a difference.He had back pain this am and I want to make sure its not the NAC .I would love to be a part of the study and started using it because my insurance turned me down for the precription the MD ordered.I didnt realize it was 3,000 mg.I also read I need to add Vit C ? Melanie

Why no iP? Danny gets celebrex with cipro

My 2 cents We do IVIG every21 days The 1/2 life is 21 days .We definitly saw the need about day 19-20.Kept great records on a small calander for about 10 months.Theres a pattern so look for it and tell Dr B .I asked him why he does it every 28 days and he didnt have the same answer our MD did ,I think it was thats what he sees that works(dont quote me) We have done over 1 yr of IVs and theres no end in site.Dans doing great for a 16 yr old who has had this for 13 yrs un DXed.Slowandsteady dontlook for the quick fix listen to your head and heart.Dr B is great but we dont use him. Dans rages were horrible to worse than horrible.Wanted to send him to a boarding school (almost did) I havent seen any in a while ,small bursts of anger here and there,look for mycroplasm infections(rage big time)Dr T is a great MD to speak with on that. Dont know what to say except keep posting here thhe people on this site are about the best human beings I have ever not met... Melanie

I did Under CIVD I have BCBSNJ

We tried it and he was allergic to it..I was on it for 3 years.I had no issues at all !!It did make me very tired and I always took it at night before bed.It would knock me out in 20 minutes.It helped my squirlly head and I had no side effects.Some pimples popped up but all in all I liked it.Danny couldnt use it hes allergic to all mood stabilizers except depacote. Melanie

Hi Peg Dan ended up in the hospital when we tried lamictal 3 yrs ago.I hear its a good med but he was one of the ones whos allergic to it. If you think her behavior is better off lamictial than on then theres no decision to be made. Have you spoken to the dr about celebrex???If the ADVIL WORKS see if the immunlogist will let allie try it.I cant tell you how its helping danny. Melanie