(Re: Rogena --CSHCS)

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Cole's current dx is a partial IgA def. He does not seem to have any

lung issues. He is just receiving ABX therapy. He will be seeing a

GI in May due to the gastro issues. I switched him to Lactaid and

there seems to be some improvement in the number of bellyaches. He

has GERD and is taking meds for that. He seems to be having some

stool issues and that is where the remainder of the bellyaches are

coming from.

So in short, right now I only have the IgA def and GERD dx. I won't

have any further dx until I see the GI in May. I could try and sign

him up now, or maybe I'll wait till after the GI appt.

My 20 mo. old son, Flynn does seem to have asthma. I have an appt

with the pulmo in June. He is on neb treatments 2x/daily and has been

a different child! I guess after the pulmo appt and some sort of dx I

should be able to get him signed up.

I want to have Flynn and my 5 yr. old tested for PID because of their

lung issues and chronic ear/sinus problems. I just haven't gotten up

the courage to ask the ped for the testing. (I think she is starting

to view me as a pain in her side.)

-Rogena (Mom to 4 boys, including Cole -Partial IgA Def, GERD,

possible Celiac)

>

> Does Cole have asthma, by chance? or any lung issues? I ask only b/c

> that is an immediate in with the CSHCS. If you have a good dr, one

who

> will state that he has a PID, w/o chance of outgrowing it in the next

> yr, he really SHOULD qualify.

> Does Cole take IVIG? b/c they pick up the leftovers there too, cost

> wise.I am trying to think of everything you have told me that he

> has--diagnosis wise--b/c we have been dealing with CSHCS for nearly 4

> yrs---and see if anything else might get him into it. It really is a

> good program. Dont mind the receptionists--they dont know--they are

> just doing paperwork. IF your dr states all his problems, he should

be

> able to get in.

> Valarie

>