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Thesuzie

Plasmapheresis next week

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Nutshel - We got tonsils out before PEX. It didn't help (except that he was his old self for a about a day after the surgery). It is pretty rough - lots of pain which did not help our anger issues. The possible good thing is that they do a deep culture on the tonsils and may find a specific bacteria that leads you to a better antibiotic choice.

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Your son sounds alot like mine—mine would definately pull the line out. We were hoping they would sedate him the whole time but I guess eveyone thinks that its too much time under.

We've been down to NYC to see Najjar. He recommended PEX but the neurologist in NH we're seeing isn't comfortable doing it. SO we're hoping someone at Tuft's or maybe Najjar will try. Initially, we saw Drs. Walters and Williams at MGH. They wanted to do PEX but the hospital said no, and, at that point he wasn't aggressive. In fact most of the treatment plan they had suggested was dienied by MGH. We should have left there earlier but at that point I didn't realize the politics invovled.

 

We've had some luck with Benadryl too. So, I've been thinking about trying another, longer term H1 blocker. I spoke with the nurse at Moleculara Labs (My DS did the Cummingham panel) She mentioned some folks are having luck with H1 and H2 blockers...so worth a try given our slim success with benadryl.

 

For Nitshel—Dr. Najjar, and Duke never said tonsillitis before PEX. I'd get another opinion if it was my kid before a surgery.... given the sensitivty of these kids and the difference in opinons of all the docs. weve spoken to. UGH

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