another IVIG

[norcalmom]

DS had horrible migraines, nausea last IVIG- for two weeks after IVIG last time. It was HORRENDOUS. And, he was very hydrated - we we know that wasn't the issue. So this time I'm asking for some steroids.

 

IF any of you that are reading this have Dr B (or another doc that uses steroids to avoid IVIG side effect-) - my question is - do you get steroids before/during or only after? and about what dose?

 

For any of you that know our story and are wondering why we are doing another IVIG - Overall, things are not bad, not nearly as bad as when he had first IVIG, not as bad as second one either - so I think the antibiotics switch has helped a lot. We just got his mycoplasma titer numbers back, and it went down 200 points, which isn't really significant when your titer is 3000 but, what is significant is that it stopped going up. He only had one cold last winter, and he only had a minor blip in progress, but he had a weird gum infection for over a month that I think stopped his progress and set him back. Still not sure if he picked his gums until infected, or he had an infection and therefore was picking at them.

 

But, he still has one very significant OCD thing (misophonia), and while I am open to going to the other side of the country for 3 weeks of CBT - I'm not going to do it if this is still immune based and it will do nothing but torment him, or be reversed with first cold he gets this winter.

 

If I could get a cunninghams' test to show me that his neuronals were normal, and that IVIG would therefore probably not be helpful, I would just do the CBT. But, I can't get one until the lab opens (rumor at IOCD conference was December/January).

 

For us, the IVIG has been very helpful, and I don't see it as a conflict with treating mycoP and Lyme. Our LLMD was supportive of the last time we did it.

 

Thanks for your help with the steroids stuff ! I just want to have an informed discussion with our immunologist - I know he doesn't normal prescribe them.

[Tamistwins]

DS had horrible migraines, nausea last IVIG- for two weeks after IVIG last time. It was HORRENDOUS. And, he was very hydrated - we we know that wasn't the issue. So this time I'm asking for some steroids.

 

IF any of you that are reading this have Dr B (or another doc that uses steroids to avoid IVIG side effect-) - my question is - do you get steroids before/during or only after? and about what dose?

 

For any of you that know our story and are wondering why we are doing another IVIG - Overall, things are not bad, not nearly as bad as when he had first IVIG, not as bad as second one either - so I think the antibiotics switch has helped a lot. We just got his mycoplasma titer numbers back, and it went down 200 points, which isn't really significant when your titer is 3000 but, what is significant is that it stopped going up. He only had one cold last winter, and he only had a minor blip in progress, but he had a weird gum infection for over a month that I think stopped his progress and set him back. Still not sure if he picked his gums until infected, or he had an infection and therefore was picking at them.

 

But, he still has one very significant OCD thing (misophonia), and while I am open to going to the other side of the country for 3 weeks of CBT - I'm not going to do it if this is still immune based and it will do nothing but torment him, or be reversed with first cold he gets this winter.

 

If I could get a cunninghams' test to show me that his neuronals were normal, and that IVIG would therefore probably not be helpful, I would just do the CBT. But, I can't get one until the lab opens (rumor at IOCD conference was December/January).

 

For us, the IVIG has been very helpful, and I don't see it as a conflict with treating mycoP and Lyme. Our LLMD was supportive of the last time we did it.

 

Thanks for your help with the steroids stuff ! I just want to have an informed discussion with our immunologist - I know he doesn't normal prescribe them.

Dr. B's office gives a script for orapred I thing 15 mg and u take it two days before treatment, then continue the two days of treatment and the two days after treatment.

 

Other docs give solumedral I'm sure you can request this, it goes in just like the ivig and it is given for about 20 minutes before the Ivig. This helps alleviate side effects.

[norcalmom]

Thanks Tamistwins!

[bulldog24]

I was told we would get a doseIv both days after infusing

[Mom63]

Norcalmom,

 

Did your son's misophonia improve? And if so what helped? Grateful for anything you can share.

[norcalmom]

 

Mom 63 -

Sorry, but no. He seemed to improve for a bit, then slid back.

 

The third IVIG was not as helpful as the other two. Seems diminishing returns. I think Swedo talked about tis in a speech a awhile back.

 

But in general, he's not too bad - the misophonia is there. And anxiety (does not handle stress well). Occasional insomnia (but rare now). high functioning in school. Oh, and skin picking - it was bad a while back, he would pick spots on his legs, much less so now.

 

On no meds, or even supplements at the moment. Stopped antibiotics over a year ago. I will get back to supplements - I just needed to take a break from trying. Vit D probably single most helpful supplement we found over the years.

 

I need to retest his mycoplasma titer - and plan to soon. If elevated will go back on Doxy.

 

I've been off the forum for a long time, part of my "taking a break". I came on today to see if the NIMH study or the mouse BBB study have been published yet. Seems like they have been taking a LONG time to get that done.