Did Dr. Swedo do 2g/kilo or 1.5?

[Joan Pandas Mom]

Does anyone know if Dr. Swedo do 2g/kilo or 1.5? If she did do 2? Why are our kids receiving 1.5?

[peglem]

Does anyone know if Dr. Swedo do 2g/kilo or 1.5? If she did do 2? Why are our kids receiving 1.5?

Swedo did 2kg. I think 1.5 is what is typically used for most autoimmune disorders and since the Immunoglobulin is expensive, they try to go w/ the smallest effective dose.

[EAMom]

Does anyone know if Dr. Swedo do 2g/kilo or 1.5? If she did do 2? Why are our kids receiving 1.5?

 

Yup, Swedo did 2gm/kg.

 

Dr. K. does (usually) 1.5 gm/kg.

 

I *think* Dr. Latimer and Dr. Lin do 2gm/kg. ???

 

It sure would be nice if there was a ginormous double blinded study to show once and for all what dose is most effective.

Edited September 28, 2010 by EAMom

[Priscilla]

we are doing 2gm/kg with Dr Lin. They just started a new study, anyone know what dose they are using?

[Joan Pandas Mom]

I'm wondering if I should push for 2 since 1.5 wasn't very helpful.

[norcalmom]

I ws double checking, so I went and looked it up. I have it below. but am confused...does this mean a total of 2, or was the over all dose 1? (I'm probably just used to seeing to seeing the overall dose? - 2 or 1.5)

________

This from the study:( I thik this is the only study she did IVIG with..it compares IVIG to PEX)

Therapeutic plasma exchange and intravenous immunoglobulin for

obsessive-compulsive disorder and tic disorders in childhood by

Susan J Perlmutter, Susan F Leitman, Marjorie A Garvey, Susan Hamburger, Elad Feldman, Henrietta L Leonard,

Susan E Swedo

________________________________________________________________________

 

After baseline assessment, children were randomly assigned

plasma exchange, IVIG, or placebo (saline solution) by

randomisation chart. Investigators and study participants were

unaware of whether the child received IVIG or placebo, but were

aware of who received plasma exchange. Children randomly

assigned IVIG or placebo received 1 g/kg IVIG (Gammagard,

Hyland Division, Baxter Healthcare, Deerfield, IL, USA) or the

same amount of saline solution daily for 2 consecutive days.

[norcalmom]

nevermind - its definatley 2. later in the paper it says 1mg/kg/day. Sorry.

[Joan Pandas Mom]

So if it's 1mg/kg/day are our kids getting 1.5mg/kg/day making it 3 total? I don't know how this works.

[momaine]

So if it's 1mg/kg/day are our kids getting 1.5mg/kg/day making it 3 total? I don't know how this works.

No, they are getting 1.5g/kg split into two days.

[norcalmom]

The way I read it is 1g per kg per day...where as we are used to see the total - 1.5 (weather administered all in one day or over two days).

 

so they did 2. We did 1.5 ( I know this for sure becuase we were adjusting amounts given on each day because I had an early flight, so he got more than half his dose the first day, and little less the second.)

[melanie]

Can someone please post this study..Is there a newer study than the 1999 one??

 

Thanks

Melanie

[Joan Pandas Mom]

I get it now. Sorry for the stupidity here. Anyone else have horrible brain fog these days? Overload! So, why are our kids getting only 1.5mg?

[EAMom]

Can someone please post this study..Is there a newer study than the 1999 one??

 

Thanks

Melanie

 

Annoyingly, I can't seem to access the full article anymore (used to be on the NIMH website). Here is the abstract: http://www.ncbi.nlm.nih.gov/pubmed/10513708

 

There isn't a newer one..that is the whole problem!

[norcalmom]

I'm ok with 1.5...the 2 was just as much a crap shoot from what I can tell! According to Dr K (and this is absolutely, just antecdotal, in his expereince he's had better success with 1.5 than with 2)..he's a bit a cowboy, and I don't know how throughly he researched this before making that statement to me in August..becaue I wanted to know why we were getting only 1.5 - thinking 2 would be better. He said not the case, although 2 is what he recommended to EAmom...so apparently sometime after her daughters relapse he took a look at his data!

 

Was there any info in the survey that Buster did that tells the level of ivig done and if another was needed?

 

I think Diana's son only got less than 1mg on his second round of ivig..she had felt that after one day he had had enough. Felt his immune system just needed a little boost to right itself. Maybe it acted like a steroid burst would have. Guess she was right since he is in full remission.