Blake S

[Guest guest]

Hi

Thank You for the advice. It does come in handy at this time for us

as we are still in shock that Transplant has even reached the mind

for Blake. I have learned a lot just from your letter & I greatly

appreciate it!!!

Thank You for your advice as well Below is the reason Blake

is not a candidate for Transplant.

I can tell you this that Blake did see his Immunologist on Friday.

he does have yet another case of Pneumonia(5th in 6 months) & pan

sinusitis(10th in 6 months) He was placed on the adult dose of

Prednisone(steroid). he will do 30 mg. 2 X's daily for 21 days as

well as finish the IV rocephin...21 days left) we will rescan at the

end of this time to see what is going on with the sinuses. As for

the pneumonia it is in the bottom of both lungs. His PFT's on Fri

were 29% after 3 tries. We are told that he looks as bad physically

as he does " clinically " & he does!!!!

We did discuss the " transplant issue " No He is NOT a candidate at

all. he has too many issues as far as blood clotting going on & the

Hem/Onc. Drs. will not okay it. we are being told that Blake's

problems as far as the blood cloting goes are genetic. he has a 16

fold chance of blood clots because he does not make natural heparine

(protein C & S def. this can not be replaced other than him taking

Lovenox for the rest of his life. We were also told both issues are

genetic. Both & I have passed this on(DNA & genetic testing

prooved it)

So, " we are doing all we can for Blake at the time " sad to hear but

at least we know!!! The Immunologist did say that there is a " great

possibility " for Blake to have Omenn's' Syndrome(it is rather late

to " notice this but it has happened before according to him) & that

is why his Pediatrician brought it up . he said that DUKE DID bring

this to mind in 1998 & when we started IVIG in 1999.

He did say that when Blake is feeling better physically & clinically

he does plan to look more into this. for now he is holding off with

the confirmation of the DX. But he does say that Blake is CVID with

Complete T-Cell Dysfunction because he does not have any response to

the Vaccines at all & he never had one(even when we trusted the

first immunologist who told us to NOT let anyone tell us there was a

problem with Blake's immune system. The Immuno. says it is all over

the paper work that there definitley was a problem from day one of

visiting the first Immuno. She just used Blake to make money off

the " allergy shots " that were not even working).

Gotta run so I can get some Sleep!!

HAPPY NEW YEARS TO EVERYONE. Hope is it a Good year for your

family!!!

The s Clan

& The Blakester