what about NO post IVIG "turning back of the pages"?

[gremlin44]

My 8 yo son's IVIG is this Fri/Sat with Dr. K. I'm completely comfortable with the procedure itself.

 

What is starting to give me anxiety and panic attacks is the "turning back of the pages" total regression/symptom flashback that Dr K and many on this board mentioned.

 

When he says a large percentage, how many?

 

Did anyone here not have that big or long of a terrible post IVIG period? We got scheduled as soon as we could, but my son's school starts Aug 24. Terrible timing, but we couldn't get earlier and we couldn't wait til next summer.

 

My son can get physically violent with me when he is in a high PANDAS state. He has a 3 yo brother (who he would not hurt) and I don't know how I'm going to manage restraining the oldest around him.

 

I don't want false hope, but I keep hearing Dr. K's voice echoing in my mind "We call it a parental suicide time."

[peglem]

Our turning back pages was only the re-emergence of some old OCD behaviors, but the intensity of the anxiety was turned way down. We did not see the return to violence and aggression.

[JAG10]

Well, not to add to your anxiety, but I didn't get the parental suicide period speech I've heard about from Dr. K. He told me my dd10's recovery would be boring, that he wasn't worried and he was right. Certainly, there were ups and downs, but more hills than mountains.

 

Perhaps the best advice is to prepare for the worst and hope for the best.

 

Remember, if things get bad, there is somebody on this board that has had a similar experience to offer advice, empathy and a friendly cyber ear.

[sptcmom]

Each child is different. Most children I've heard do experience flipping. We had it day one after IVIG (1st day) and things continued for 3-4 weeks post. It wasn't suicide period just anxiety because its hard to watch the little ones suffer. DS was 95% symptom free before IVIG and we still went ahead with the procedure so it was hard.

Dr K infact likes to hear of herxing/flipping- says IVIG is doing its job. Ds's anxiety was waaaaay down post IVIG so it was bearable.

I agree, just be prepared, knowing that if theres no reexposure, your child is actually recovering. I would suggest doing bentonite clay or charcoal to get those toxins out faster. That was wonderful advise SF Mom Wendy gave me and I saw an immediate difference the morning after.

We saw stuff come back from when DS was 33 months and it was a revelation of sorts. A breathing whoosing sound tic we thought was allergy related came back on the plane ride back home two hours, and it hasnt returned yet. We know DS has had Pandas since 22 months probably right after MMR at 18 months and all 4 Prevnar failures.

I didnot take Dr K's advise of putting DS back in school and exposing him to grups of children right away. Diana P.'s story is very compelling and I went that route and kept DS home for 4 weeks and then tried camp for 2 hours a day. Got reexposure anyways- twice, pulled him out and he's on the mend now. I wish I had totally followed Diana P.'s suggestion and kept him home all summer.

GOODLUCK!

[JAG10]

Jodie brings up some good points. Where is your child in the recovery process as they enter IVIG? If abx and steroids have already resulted in much of the "flipping", but symptoms persist, you may not see as much flipping from the IVIG.

 

I charted 4 major categories of symptoms during the abx/steroid phase of treatment pre-IVIG. Post IVIG, two of the categories were on one side of the pendulum, two on the other. Every so many days the pendulum would swing to the other two set of symptoms, but each time a swing occurred, the pendulum lost energy and the symptoms lost intensity. Some kiddos are much more dramatic than that, but I would definitely put my dd10 in the slow, fade away camp. Again, Dr. K was spot-on about everything to expect with my daughter, amazingly so like he had a crystal ball.

[momaine]

My dd was on steroids the month leading up to ivig which puts her in a pretty good place. We stopped steroids and one antibiotic, as well as advil when she had ivig. Considering that we stopped those 3 medications, I thought that it would be a lot worse. Pre-ivig, dd's worst symptoms were reassurance questions and other reassurance isses (needing me to look at her) Post ivig those things went away pretty quickly but her repeating issues that had not been as strong while on prednisone, worsened. Then they got a little better, then they really stalled out and then slowly began to get worse after 5 weeks. And now reassurance issues are creeping back in too, but nothing like they used to be. Now, I stress if she asks a handful of reassurance questions but they used to be all day long. She is also avoiding doing many things again which she does when the urge to reapeat is too strong. I'm looking forward to the next ivig in two weeks.

 

 

the one othe thing that changed immediately post ivig is that her anger and frustration about the ocd issues lessened immediately.

 

good luck!

Angela