Saw the immunologist again

[melanie]

Saw Dr J today and we spoke about raising the IVIG again.She understands my concern ,she explained why she doesnt do the 2g dosage and told me If thats what I wanted to do I could ,she definitily wont do that now and is concerned that there are many of us that are doing it,She has spoken with many others in the feild about this and says main stream medicine isnt doing this .She did know of Dr K and his work .....Any way danny wasnt great today ticccccing like crazy.We are going back to azith and then to omincef and back and forth. I trust her

 

We did realize that he was getting privigin instead of gamunex she thinks this could make a huge difference so she contacted the phar to make sure they give him gamunex.also she may have to increse his treatments to every 2 weeks \\

 

He has an autoimune disease maybe its not PANDAS

 

melanie

[dee45]

Hang in there Melanie!!

 

Deanna

[Fixit]

Saw Dr J today and we spoke about raising the IVIG again.She understands my concern ,she explained why she doesnt do the 2g dosage and told me If thats what I wanted to do I could ,she definitily wont do that now and is concerned that there are many of us that are doing it,She has spoken with many others in the feild about this and says main stream medicine isnt doing this .She did know of Dr K and his work .....Any way danny wasnt great today ticccccing like crazy.We are going back to azith and then to omincef and back and forth. I trust her

 

We did realize that he was getting privigin instead of gamunex she thinks this could make a huge difference so she contacted the phar to make sure they give him gamunex.also she may have to increse his treatments to every 2 weeks \\

 

He has an autoimune disease maybe its not PANDAS

 

melanie

 

Hi melanie......not trying to rock the boat..and it''s nice to trust someone...and its good you are getting someone to listen 'somewhat"

but the statement......"says main stream medicine isnt doing this "....just......i'm biting my tongue.......main stream medicine doesn't recognize pand/pit

i don't realy know the iviig thing yet.....just starting to really think about it.

I think switching to gamunex will be good!!! IT's just that that statement rubs me...

I think pit/pans it an autoimmue issue to, on some level. You will get there!!!

[thereishope]

You tried. At least there is some hope that the changes she is making will help Danny. Please keep us updated.

[melanie]

Saw Dr J today and we spoke about raising the IVIG again.She understands my concern ,she explained why she doesnt do the 2g dosage and told me If thats what I wanted to do I could ,she definitily wont do that now and is concerned that there are many of us that are doing it,She has spoken with many others in the feild about this and says main stream medicine isnt doing this .She did know of Dr K and his work .....Any way danny wasnt great today ticccccing like crazy.We are going back to azith and then to omincef and back and forth. I trust her

 

We did realize that he was getting privigin instead of gamunex she thinks this could make a huge difference so she contacted the phar to make sure they give him gamunex.also she may have to increse his treatments to every 2 weeks \\

 

He has an autoimune disease maybe its not PANDAS

 

melanie

 

Hi melanie......not trying to rock the boat..and it''s nice to trust someone...and its good you are getting someone to listen 'somewhat"

but the statement......"says main stream medicine isnt doing this "....just......i'm biting my tongue.......main stream medicine doesn't recognize pand/pit

i don't realy know the iviig thing yet.....just starting to really think about it.

I think switching to gamunex will be good!!! IT's just that that statement rubs me...

I think pit/pans it an autoimmue issue to, on some level. You will get there!!!

 

 

I think she meant mainstreet Pandas drs.She has many pandas patients.I even met a boy named adamwho comes from Ireland for treatments.She think that maybe the kids that are having the larger dosages have high strep ttiters ,danny doesnt have that.

He has tons of anxiety poor guy

 

Melanie

[Suzan]

I have to believe that twice monthly IVIG at a lower dose is better than no IVIG. It's got to be doing something, maybe just slower?? I hope the switch to the other brand helps. Hang in there. Things will move, he will start to improve or you will change your direction. I know you are tired and worn out. Keep coming here for support. You will get through this.

 

Susan

[peglem]

We did realize that he was getting privigin instead of gamunex she thinks this could make a huge difference so she contacted the phar to make sure they give him gamunex.also she may have to increse his treatments to every 2 weeks \\

 

So what's the difference between the 2 that she thinks will make a huge difference? How is gammagard different than those 2?

 

We did the first IVIG on Wednesday- low dose-just under .5g/kg- its been almost a week and so far, she's a bit worse than she was before...She's way better than she was in full exacerbation in November, but not as good as she was in Jan, Feb, and up til the IVIG. We're supposed to do it again in 2 more weeks (3 weeks apart) and again every 3 weeks.

From what I can tell from researching dose-this is the proper dose for immune deficiency. I so much would love to see research on dosage in PANDAS.

[melanie]

We did realize that he was getting privigin instead of gamunex she thinks this could make a huge difference so she contacted the phar to make sure they give him gamunex.also she may have to increse his treatments to every 2 weeks \\

 

So what's the difference between the 2 that she thinks will make a huge difference? How is gammagard different than those 2?

 

We did the first IVIG on Wednesday- low dose-just under .5g/kg- its been almost a week and so far, she's a bit worse than she was before...She's way better than she was in full exacerbation in November, but not as good as she was in Jan, Feb, and up til the IVIG. We're supposed to do it again in 2 more weeks (3 weeks apart) and again every 3 weeks.

From what I can tell from researching dose-this is the proper dose for immune deficiency. I so much would love to see research on dosage in PANDAS.

 

Hi Peg

 

The 2nd and 3rd dosage was still 1g per kilo but they used privigin instead of gamunex.The Immunologist said the best is the oxigir(something like that )only available in England and very hard to get here.Then the Gamunex then gamaguard .The Gamunex is great for autoimmune issues.I think they just started making the other kinds recently.Its like some powder form or something like that.Hard to grasp all of this information .I was soposed to get the delivery today of the meds they called and arent delivering until thursday.I use optoion care a subsidery of walgreens.

 

Melanie(sorry the spelling is so off)