Beth

[Guest guest]

Beth, I could spit at what he told you. That is not true about Portland

and Atlanta being the only 2 good places - what about NY and California

and Cleveland???. I myself only have experience with Atlanta so of course

I think it is the best but do not tell me Cleveland is not a good, reliable

place to go too. Maybe the problem is political but it is wrong to t ll

you that.

As for no other metabl specialists in the area - CHW is getting a metabolic

doctor soon - I will find out exactly when or you could by calling genetics

clinic and asking. I think it is May or June. .

I'm sorry but I do think he is trying to push you into a corner to do a

frozen biopsy. And btw - the freezing damages the inner membrane which

last time I checked is part of the structure of the mitochondria. He is

wrong and I would be happy to give you the documentation to prove that. We

had a situation before Zach's biopsy where a MD tried to force us into

doing the biopsy here at home - in fact told me if I did not then he would

not see Zach anymore. Then he actually wrote a letter to insurance saying

he could not provide coordinated care if we used someone from somewhere

else. Well good riddance - honestly and now he wants to jump on the band

wagon and treat the kids - no way. People like that are not looking out

for what is in the child's best interest and not listening to the family.

For Clayton a biopsy is a huge issue -and the last thing he needs is a

second one unnecessarily when you are willing to drive him to Cleveland to

have it done fresh.

It is not that frozen is inaccurate or not reliable but it is less so. And

you can also tell him that close to 60% of the people who have gone to

Atlanta for a repeat biopsy have had inaccurate results with the frozen -

so hello! this is not rare.

The bottom line is you do what is best for your family and if it is to stay

here and have frozen then you absolutely should do that. But do not do it

because someone is not giving you correct information or saying they will

not treat your son if you do not do it their way.

Anne