IVIg in hospital

[browneyesmom]

Hello all... we are still in the hospital. The EEG & MRI showed no abnormalities; we are still waiting for strep titers and spinal tap results.

 

Her pediatric neurologist is going to do an IVIg infusion today as well as tomorrow - she will begin the one for today in a few minutes - they are working on it right now. (I gave him Dr. B's phone numbers this morning and he was glad to have them.)

 

So, what I am wondering is this - what dosage have others been receiving for the IVIg infusions for their children that have had success?

 

Thanks!!

[peglem]

I believe most have been receiving 1.5-2g per kg of body weight for PANDAS.

[browneyesmom]

Thanks! I thought it was higher. She is getting 1g per kg tonight and they anticipate the same tomorrow. At this point, our understanding is that they are seeking to stabilize her so that we can get her to Dr. B in CT. Her neurologist also decreased her Prozac (which she takes for migraines) from 20 mg to 10 mg daily, he took Dr. B's number thankfully & said he'd discuss the antibiotics to decide what to do about those.

 

Is that 1.5 - 2 g / kg of body weight a one-time infusion or back to back two days in a row? They anticipate giving her the same tomorrow, which is a total between the two days of 2 g / kg. Does anyone know if these are the only ones they usually need, or do they generally continue for a while... or, long-term?

 

Oh, btw, the MRI & EEG are normal!! :~) We're still waiting on the rest of the results... they'll probably take a few days for the others.

 

She is resting comfortably now, so I'm going to try to get some rest myself.

[Buster]

what dosage have others been receiving for the IVIg infusions for their children that have had success?

1 gm/kg/day x 2 days ==> 2 gm/kg total dose in our case.

[browneyesmom]

Thanks! So, that makes more sense now, even in my sleepy stupor... he said that some will run the whole thing over one day, but he likes to divide it over two days. I'm going to rest now, feeling more hopeful! :~)

[Priscilla]

you may want to know if this is a 1gm/kg dose given over 2 days- ex. if she is 40kg she would get 40 grams total- 20g 1st day, 20g 2nd day. Or are they giving 1g/kg dose each day (40 g 1st day and 40 g 2nd day for a total of 80g). My dd had 2gm/kg (given in 1 day) for 4 total infusions, each 4 weeks apart. It did help alot, to the point that I took her off abx. But she had a cold after thanksgiving and she has now slipped alot. Back on abx, more blood testing monday, and possibly more ivig. Her progress did take a while, MAJOR decline 1 week after 1st ivig (that is when we went to ER), then the good changes started about 7-8 weeks after 1st (which was 3-4 weeks after 2nd infusion). It is a slow, sawtooth process, and here we are again, scratching our way back to what we call wellness (even though still lingering behaviors). So many prayers to you and your daughter, this is so hard on them. I have a rager, and last nite she felt one of the scratches she left on my neck and actually apologized (first time ever!) That meant alot to me, showed me my true girl is still in there somewhere. Keep your hope alive- you BOTH need it!

[browneyesmom]

Hi Priscilla & thank you so much for the prayers - that means so much to us right now.

 

Yes, I confirmed last night; it is 2g/kg total, given as 1g/kg each of the two days. He prefers to infuse it over a two day period as he said there are less side effects.

 

I have an aggressive rager too; she usually does not remember most of the episodes, but she had some recall of them the other day and was deeply upset.... crying, aplogizing, hugging us; it was heartbreaking!

 

Interesting that you mention the sawtooth nature of this condition. I designed a PANDAS awareness ribbon (I use it as my avatar) and I made the edges sawtooth for that exact reason.

 

Merry Christmas, I hope your daughter is back on track quickly!

[Joan Pandas Mom]

Merry Christmas to you. I am so happy you got IVIG quickly and the help you desperately needed. You did a great job. I hope and pray you will see progress every day.