ivig effects bad/good and for how long?

[danddd]

I am curious if you have done steroid bursts. Perhaps I missed that. Many believe that steroid bursts are a clue as to how the child will respond to IVIG.

 

 

She tried steroids and they were horribly scary, her rages got far worse.........does that mean she will respond similarly to ivig?

[LNN]

I am curious if you have done steroid bursts. Perhaps I missed that. Many believe that steroid bursts are a clue as to how the child will respond to IVIG.

 

 

She tried steroids and they were horribly scary, her rages got far worse.........does that mean she will respond similarly to ivig?

 

Have you tested for mycoplasma? This apparently comes with big-time rages and prednisone taken during an active infection could make it worse (just as it would make Lyme worse). If she took it after the infection were eradicated, maybe it would bring a different response?

[tapiash]

Have you had a Cam K test from Dr Cunningham? If you're sure your daughter has Pandas, then only treating with psych meds does not make sense to me. In fact, they could be part of the problem.

Something I noticed from the Sammy story on Mystery Diagnosis (I've never read the book) is that, though they stated that the psych meds did nothing, he got worse when on them and even worse when they kept raising them. Before we knew my daughter had PANDAS, we tried a LOT of psych meds- they either made things worse or made no difference.

I think if you're dealing w/ residual anxiety or OCD after you have PANDAS in remission, therapy can help to banish those- but if you're still seeing wildly out of control stuff, you're probably not in remission.

 

Were her titers ever high? I'm not sure they're the measurement to be using for decision making. Like measuring how many tissues you use to decide how bad a cold is. Lots of tissues probably means a bad cold. But not using lots of them doesn't mean there's no cold.

Oh, nice analogy!

 

One more point I'd like to make- If your child had cancer, you'd most certainly see an oncologist who has extensive experience in treating cancer. I'm not comparing cancer to PANDAS, just saying you may need somebody who specializes in treatment of PANDAS because its not something that most doctors really know what to do about.

 

My son was on psych meds for 9 days. I honestly thought I was going to lose him. I took him off the meds without asking the doctor. Honestly I new he was getting worse and I figured if I kept him on he would die. His OCD and contamination fears were out of this world. He took every piece of clothing item, bedspread and stuffed what he could in the washer . The washer would not even turn. It was smoking. He probably would have ended up like Sammy had I kept him on the meds. I feel for Beth and admire her courage and her strength to fight for her son. I am in the mental health field so I know first hand the reactions these meds have on children. I was desperate and that is why I tried them.

[Joan Pandas Mom]

My son was on abilify in 2007 when he was 12 for almost 1 year. It may have helped a little in the first few months, but it did cause rages. He became argumentative, rude and talking back to teachers. That was NOT my son. We took him off it. He still has some rage, but they are different, they are from sheer frustration from OCD torturing him every waking moment. I think Beth Maloney was talking about the SSRI, Zoloft, that was making Sammy worse. She took him off that but he did continue with Zyprexa for a while and that helped him. We tried Zyprexa in 2009, it made my son's head feel "swollen". He just didn't feel right on it. We stopped it after a few days. We had IVIG 4 weeks ago, still waiting for improvements but a few people have written me and told me it took 6-8 weeks for their child. I'm just going to sit tight and see what happens. I never realized how long a week was!!!!!