PEX and IVIG results

[dcmom]

ratlenhum-

Thank you for your post. I am so sorry you haven't found help with IVIG. How is your child now? I assume you are still dealing with the ups and downs of pandas episodes. Have you ever considered pex?

again- thanks,

 

Eileen

[ratlenhum]

My son will be 8 in November. We paid for IVIG out of pocket. Insurance wouldnt cover it. Doubt we could get PEX covered and I have no idea what that would cost, but I'm sure it's not cheap.

 

 

 

ratlenhum-

Thank you for your post. I am so sorry you haven't found help with IVIG. How is your child now? I assume you are still dealing with the ups and downs of pandas episodes. Have you ever considered pex?

again- thanks,

 

Eileen

[EAMom]

Is your son autistic plus pandas (vs. just pandas)?

 

Has he had an immune work-up?

 

Did you stay on antibiotics? Which one and what dose?

[ratlenhum]

Yes, he has autism, and before PANDAS hit he was well on his way to recovery. He was amazing with the way he was progressing and where he was.

 

He had a full immune work up. We flew from NY to CA to see Dr. Gupta at UC Irvine.

 

My son did IM Bicillin for 4 months. Cycle after cycle of Zithro rotating with Omnicef, and for over year now has been taking zithro 250 mg 2x a week.

 

Any thoughts? Suggestions? the way he's been lately I'm open to an exorcism!!

 

Is your son autistic plus pandas (vs. just pandas)?

 

Has he had an immune work-up?

 

Did you stay on antibiotics? Which one and what dose?

[dcmom]

What part of the country do you live?

 

There is a possibility of getting pex covered by insurance. I actually think it might be easier than IVIG- which is a "newer" treatment.

 

Have you considered doing the test by Dr Madeleine Cunningham for anti neural antibodies and/or a steroid burst?

[ShaesMom]

Yes, he has autism, and before PANDAS hit he was well on his way to recovery. He was amazing with the way he was progressing and where he was.

 

He had a full immune work up. We flew from NY to CA to see Dr. Gupta at UC Irvine.

 

My son did IM Bicillin for 4 months. Cycle after cycle of Zithro rotating with Omnicef, and for over year now has been taking zithro 250 mg 2x a week.

 

Any thoughts? Suggestions? the way he's been lately I'm open to an exorcism!!

 

 

What did the immune work show?

[KeithandElizabeth]

Since you live in New York, have you ever considered seeing Dr. Kenneth Boch? He is in Rhinebeck, N.Y. and works extensively with Autism and PANDAS.

 

I am just thinking aloud of other things to consider like a yeast issue, which can cause severe mental issues, or low iron? Perhaps food allergies? You just have to wonder why your child was progressing so well and then slid backwards. The antibiotics could have really did a number on your child's gut perhaps and caused fungus issues?

 

I am sorry you are going through this right now!

 

Elizabeth

[ratlenhum]

We've been with Dr. Bock for over a year. Switched to him from another DAN doctor. I think we have Bock stumped.

 

I think we have a good yeast protocol in place and even increased it a bit recently. I'm almost wondering if gut bacteria is an issue based on signs in the BMs.

 

I talk to Dr. Bock again next week I think. It can't come soon enough. The last month has been REALLY REALLY bad!!

 

Kerrie

 

Since you live in New York, have you ever considered seeing Dr. Kenneth Boch? He is in Rhinebeck, N.Y. and works extensively with Autism and PANDAS.

 

I am just thinking aloud of other things to consider like a yeast issue, which can cause severe mental issues, or low iron? Perhaps food allergies? You just have to wonder why your child was progressing so well and then slid backwards. The antibiotics could have really did a number on your child's gut perhaps and caused fungus issues?

 

I am sorry you are going through this right now!

 

Elizabeth