melanie

HI yes insurance pays he has an id dx so its covered melanie

he was on flagyl until yesterday.Finished .I see her Dr J on Friday I know shes contemplating higher dosage with him.Hes doing real well today,always does for a week or so.Hes going to camp for 5 days hope so at least they will see the good danny Melanie

Hi Thanks for the responses I always like to see what other on this site think.I know you all know how i feel.i spoke with Dr Js nurse today and I have an appointment next Friday hope she will up the dosage but shes not easily convienced of much..We were on flagyl for 2 months she ants him off of that now too,We do 1g per kilo every 21 days and it definitly stops working after 14 -16 days.Some blips lots of good stuff.All of his behaviors come from sounds!! Every sound causes a behavior,so weird.Certain voices cause him to tic or get him angry.So weird. Todays IV was 6 hrs almost done . Melanie

Sitting here awaiting the arrival of the iV nurse for IV #10. I am getting tired of these IVs ,Danny isnt looking forward to this either but since he doesnt really know about this site I can just speak of my own feelings. I am very confused about the next step to take .I said I would continue these IVs as long as he was showing progress. His OCD is ramped up and he isnt fun to be around.My personality is directly effected by his behaviors.Im becoming a misarable human being,whos not much fun to be around either. I think I may abondandon this IV thing ,maybe ,I dont know .I have seeen some good stuff but Im not sure anymore.Its been a rough few days and im feeling lost and tired. Thanks for listening the nurse just got here.Here we go again Melanie

sso your taking which antibiotics foe lyme?

Hi Im in the same boat 1g every 21 days .danny does great for a week than not great and then ok days 15-18 then not great OCD rises then tics lower .OMG what a freaking roller coaster ride.We have done 9 Ivs and #10 is comming next friday.Danny also has HF ASD and is 16 so Im not sure if thats the factor that changes our Drs.His Dr is a immunologist (ped) she swears DR K is doing wrong with this dosage .I wish the papers published would say 1.5g!!!! But they dont. I will not leave Dr J right now.I saw Dr B and liked him,my insurance oked the IV with him ,Im concerned ,he never called me back,schedulled the IV and when I called to ask medical questions wouldnt return calls.That freaked me and my husband ou.Im not saying i wouldnt ever use him or that hes not an unbelievale Dr just Im confiendent that Dr J really perfect for Danny.

Sorry for what they did to you and your DD.How dare they,sorrry but how dare they..I dont really get the Psychiatrists part in the whole thing.wasnt there a MD prescribing the Plasm??Where were they? Was this throught Dr L? So Sorry and I know what ASD is a little to well Melanie

I don't remember I think it was an eeg he had all of the probes attached all over him. We thought he was having seizures so I doubt it was a sleep study only.

I have BCBS of NJ and they did cover for PANDAS in the hospital IVIG.They did say later on they shouldnt have.They do cover his IVIG treatments monthly now for ID.Glad to hear things are going well. Melanie

We did it at Columbia Presp about 1 1/2 years ago,Imglad we did.Dan was wetting the bed for a week or 2 and we thought he was having seizures.We didnt know it was PANDAS at that time.No issues with wetting since IVs so Im glad we know for sure hes not having seizures.So to rule out any serious med issues I would do it.

Is Dr J from uNDMJ?

Hi May Glad you are going to do the IV ,we do it at home also and its been great.Why at night while shes sleeping?The nurse has to do vitals every 20-30 minutes,they need to drink lots of fluids so shes probably going to have to use the bathroom frequently.did the md tell you to do it at night? The 1st IV we did was in the hospital and the night was a mess for us ,just for us.We do it duing the day,we plan movies and although its long(we use optigam) 6 hours ok we get through it EVERY 21 days!! Melanie

Does anyone know what dosage of IVIG they are planning???

Im going to chime in here . Ive been a teacher for 18 years,I have a son who is a special education student in a special education school who has some behavioral issues,some that are directly related to his ASD,and PANDAS. Never and I mean never have I heard of a teacher requesting a student to be put into a self contained classroom with "slower"(OMG) children.There is a long process of classifying children,you just dont say his child needs to be in SE for no reason.NO WAY!!That teacher must have very specific concerns,my son is very bright I wouldnt say hes the brightest in his school or his class but still hes pretty smart. There is a specific protocol for classifying children (legal )Child study teams must do many tests. I took offense to this posting as Im sure many other parents here have Special Ed students. Melanie

Hi Im interested in this too.Im a IVIG monthly family too.The last report from our MD was 2-3 years of IVs.Love to read this info.I get the monthly thing,I dont always get tje 1-2 high IVs but EVERY KID IS DIFFERENT..I do get that now. Melanie

how much does he weigh??75lbs??

Thrilled sounds like you have got a handle of this.I know how good it feels when things are good.He deserves to be well.Hope and pray its over,finally over!!!Keep posting Melanie

we do it every 21 days(1g)

Danny takes flagyl,does that help with ld if you have it??

Thanks but is that bad or just it is what it is? Melanie

nope,after the episode he laid down ,took a nap woke up and felt better..Eye Dr said maybe blood pressure dropped?? Melanie

We use intuniv (tenex) now 2mg . We did try abilify several years ago,and several other medications.Had several issues try the tenex first.

He started school today and his teacher said when the kid's asked why his moving so much he told them he got an infection from the pandas You are kidding me!!a TEACHER SAID THIS!!

Just got back and everything is fine.The eye structure is good no issues at all.Im tired of Drs.He was nice and danny didnt tic 1x.I called and explained before I went.