Hello!

[Guest guest]

I just wanted to say 'Hi " to everyone and find out where we are all

from?

I am from Michigan and decided to join this group because my 20 yo

son has CVID ( diagnosed in '99) and his medicaid is being cut off,

effective Jan 31 2007.

We applied for insurance through Aetna and was turned down. Of course

I would like to know why? Could it be that he is high risk?

Here is a brief history of

Born at 36 weeks gestation with a Tracheal Esophogeal Fistula (

T.E.F.)

A feeding tube was inserted right after birth. TEF repair was

performed the next day. Admitted to the NNICU for one month. 3

episodes of Apnea. Came home on a monitor.

Illnesses:

Pneumonias.......too many hospitalizations to list.

* 1989.....age 3. I take him to to the ER for spiked temp. (103) and

severe vomiting and difficulty breathing ( had already been diagnosed

with asthma). Chest xrays are taken and confirmed that he has double

pneumonia. A bolus of amonophylin (sp) is given. He is transported to

his hospital room. Still has the IV of amonophyllin in form the ER. I

notice a few hours later that he is acting 'whacko'and totally out of

it. He is also in an O2 tent. Nurse comes in to check him and leaves

the room quickly. Comes back with his doctor and I am told that he

has to be admitted to the PICU because his theophyllin levels were

above 60! He has to go on a ventilator. Also a charcoal rx is given

to get some of the meds out of his system. He was on the ventlator

for, if I recall correctly, about 4 days. He stays in the PICU for 2

weeks and ten is transferred back on the floor for another 3 weeks.

So....what turned out to be a few day stay turned out to be about a

month! I will never forget that!

He also has tracheomalasia, bronchomalasia, rx of sinus infections, (

has had them surgically cleaned and scoped a few times) rx of reflux,

( he had the thal fundoplication done in fall of 1996. His reflux has

been greatly reduced and so far the wrap is holding. No leaks so far!

Today he is 'ok' but worried that if his infusions are stopped he

will get gravely ill. His last IgG level was was at 700. Before he

started infusions, they were in the low 300's. We have been told by

is Immumonlogist/Allergist that he will need these infusions if he

wants to have a 'normal' life.

So now we have to find insurance for him. Medicare? Any help or

advise would be extremely appreciated.

I look forward to hearing from all of you.

Take care

Charlotte MI