Their talking IVIG or Plasma eschange! Too Scarey!

[Wilma Jenks]

She tests high for PANDAS and has Clostridia. They are suggestin IVIG or Plasma exchange. She is quite stable right now on the low dose of lamictal and low dose of seroquel and lamictal. I am not sure if I want to risk one of these procedures. I need some advice.

[peglem]

Who is suggesting IVIG or plasma exchange?

[butterflymom]

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Edited February 3, 2016 by butterflymom

[Wilma Jenks]

The person treating her is suggesting it. Not sure if we are suppose to mention names. I think he is very knowledgable and I am not putting him down. It's just so new to me. All of this! I heard IVIG and plasma exchange are VERY risky. I need to research and think about it all.

[butterflymom]

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Edited February 3, 2016 by butterflymom

[peglem]

My daughter gets IVIG every 3-4 weeks. I was scared at 1st, but its really not a big deal. Keeping her entertained during the infusion is by far the biggest challenge.

[Wilma Jenks]

He mentioned steroids. He wants to treat clostridia first. He wants me to read up on the IVIG and plasma exchange. He thinks she is a candidate for IVIG, and not plasma exchange, because she does not have any tics.

[danddd]

Hi Wilma, My dd9 was on lamictal and seroquel also. She went off of the lamictal before she had ivig because i did not think it was doing anything, but stayed on the seroquel. one month after ivig, she was doing so well (no more rages) we took her off the seroquel. she is not 100%, but she is in a much better place mentally, and she is not on any psych. meds anymore. ivig is not for everyone, and i was terrified at first, but i am glad she had it, (and actually i am thinking about another one to see if we can get her feeling even closer to her old self).

 

good luck,

 

dan

[EAMom]

HI Wilma,

IVIG and/or plasmapheresis are not dangerous although I should point out that any medical treatment, including psych. drugs, carries certain risks. Heck, even getting in the car and driving to the store carries a certain risk (for example you could get hit by a drunk driver)!

 

My dd has had HD IVIG on 2 separate occasions and I would not hesitate to repeat IVIG if the situation called for it. IMO leaving a child with inadequately treated PANDAS (think mental illness, possibly continuing into adulthood) is much riskier than IVIG, plasmapheresis, and/or long term antibiotics.

Edited February 2, 2011 by EAMom

[norcalmom]

I nearly gave myself a coronary worrying about ivig..and if I was doing the right thing...in the end it was such a relief, and I wish I had done it sooner. We may get another (son is doing very well about 70-80 better but seems stuck here...we are waiting for more time to elapse the cold and flu season to pass and hoping for more healing (can go on for up to a year). There is a study going on with a number of the top researchers in the country - basically they are just repeating the IVIG study - you might be eligible for the study.

 

Look at the topics for the past few days, under "IVIG study posted" and you can find more info on how to participate if you are interested. These are THE top docs for pandas in the country - they know much more about it than anyone else out there.