Can I have more re-assurance?

[Wilma Jenks]

She does not do well with Abx. Seem to make her worse.

Charcoal does not help

Motrin does not help.

Psych. drugs don't help.

Her handwritting did not decline suddenly.

Her suymptoms were not sudden. She was sick at birth.

She has 166 on Cam Kinase.

Her symptoms sound PANDAish.

High levels of Clostridia.

 

Doesn't sound like most PANDAS kids. Would you still try IVIG? Since she is non-functioning and something has to be tried. I know I sound wishy washy, but to me it's a BIG desicsion. I do not want to make this child suffer anymore, or make her worse, ya know? Thanks for understanding.

[butterflymom]

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Edited October 9, 2015 by tampicc

[butterflymom]

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Edited October 9, 2015 by tampicc

[Iowadawn]

Wilma-

 

I have to ditto everything tampicc wrote. IVIG maybe your best bet. Do the additional tests Dr. B recommends. Our son is a PANDAS/tick-borne infection case. The only IVIG's we have that have NOT been beneficial have been the ones at a lower dose. (Half the high dose). The ones that have been at 1.5g/Kg have helped. I REALLY recommend the lyme co=infections testing. We were VERY surprised. My son currently has bartonella rashes that have developed since we started treating it. We have NEVER seen these before. All over his back. Nasty bug for the brain. He did test slightly positive. He tested Very positive (by FISH) for babesia, and then lyme. My point---you will have covered a lot of ground by doing these tests while you wait for the IVIG. My two cents.

 

Hug & prayers,

Dawn

Edited April 23, 2011 by Iowadawn

[MichaelTampa]

Yes, as Tammy has said, IVIG is used sometimes for lyme, is used sometimes for PANDAS, and others, so perhaps it will be helpful regardless of what is going on. Regarding testing, IVIG does come from blood of others, so if you are contemplating testing for any infections, wise to get that done before IVIG if you can work it out that way. Any testing you do after IVIG, you won't be sure if it is from the IVIG that is causing the results.

 

Sorry things are so tough.

[SSS]

I'm at a total loss on what to advise other parents, but will share we were at a very dark place with pandas when we did our 1st HD-IVIG. We did a 2nd one at 6-7 weeks post the first one, and things are better now than they have been for a long, long time. Steady trend upward (fingers crossed, please God) my dd6 is happier than we've seen her. The psychotic rages are gone. Her relationship with her little sister (dd4) is better than ever.

Sending you prayers for the right direction----