Re: BONE MARROW FAILURE-ANNE

March 23, 2003

---Anne,

's retic count is typically 0.1-0.0. every once in a while

we get a 0.4 and jump for joy...not that it means anything. We are

trying a new therapy of folic acid and pyridoxine + increased amounts

of CoQ10-up from 30mg fourxday to 3oomg fourxdays to equal

1200mg/day. Our doctor said that there is a physician in Chicago that

is researching mito and bone marrow and has good results with this

treatment. We are incresing her now...so we don't yet know if this

will help. Her liver is a mess but we have been monitoring bleeding

times and of right now they are okay.

What symtoms of the dysautonomic disfunction do Sam and Zach have?

I checked 's temp last night during her 2am tube feed and it

was 92.4. I just about freaked out, but i was able to wake her she

seemed fine so i just covered her up and monitored it. While she is

low like this she feels hot and sweats alot.

We are also looking into the possibility of removing her

spleen...probably this month. Her spleen has always been large but

like Sam she is eating through the blood way to quick and we hope

this may help.

Other than the bleeding, were there other signs of liver failure?

's white cells are usually about 3.5 with an ANC of 300-600. We

are not treating this yet either.

We do feel so alone too, as do our doctors. We actually have a new

doctor who is trying whatever she can think of to help, because our

last doctor was just at a loss.He just would treat the symptoms, but

not look for the answers.

I also worry about Mrgan's sister Molly. She is 20 mo. and I feel

like it's just waiting for the inenitable. Will she also get the bone

marrow problem?the Mito? It's horrible. She is developing wonderfully

and seems so healthy, but like you said, it can just happen almost

over night.

Please feel free to email me directly at the above address. I

would love to hear more. And thanks for sharing all of your knowledge

with me. is treated for the bone marrow issues at Akron

Children's Hops. and the Mito at the Cleveland Clinic by Dr. Cohen.

Dawn

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