What hospital?

[Guest guest]

My son is 20 years old. He was diagnosed with an immune deficiency soon after

birth. Needless to say because of the rare form of deficiency, has never had any

immunizations. He has chronic lung disease as well so he suffers from pneumonia

from time to time on top of his usual cough. He has had several surgeries to

insert/remove/insert/etc. ports for his monthly infusions of gamaglobulin. He

was on weekly IM treatments at home until that proved too painful due to his low

body fat, and is now back on his monthly IV treatment. He has had several other

secondary complications due to his immune deficiency. Last year he suffered

severe hepatitis and was hospitalized for over a week. He was not tested as his

immunologist assumed his hepatitis was caused do to his immune problem. My son

has had several strange infections/reactions due to his immune problem so this

was reasonable to us. Now, a year later, he was hospitalized again for hep.

This time he was tested and underwent an ERCP where they installed 2 stents.

They did a liver biopsy but the only thing that was said from the liver biopsy

was that it gives us a ground floor to base his progression on. The GI did say

that his hepatic ducts were very " ratty " and therefore 2 stents were inserted.

His billirubin was SO high he was scratching sores into his flesh. He was

treated for this and that has now stopped after the stents. He is on several

medications including Cipro in order to fight off infections due to his immune

deficiency(which they discovered a very bad infection at the time of the ERCP).

He must now return on June 3rd to undergo another ERCP to take out the stents.

He will be a junior in pre-med at TCU this fall. Over the past two years he has

had hep twice, pneumonia twice, an auto accident, sinus surgery, ear

surgery..... and I don't know how the kid moves forward outside of the fact that

he is more grounded in his faith and connected to God that it gives him a power

indescribable. You would never know when you look at him that he has had so many

difficult journeys in his life.

He sees a pediatric immunologist(his case is so rare that the Dr. dare not send

him to an adult immunologist due to so many strange complications/history/etc.)

He sees a pediatric GI doc and now an adult GI doc that has agreed to share

information with both of these two pediatric doctor's.

My question to you all is this: Cooks Children's Hospital here in Fort Worth is

a great hospital. It has kept my son alive for almost 21 years and he wasn't

expected to make it past 13. I do wonder now if we shouldn't try to consult with

another institution such as Hopkins, Mayo?

What are your thoughts? I assume we should probably ask his primary doctor as we

would dare not do anything without his advice or blessing.

Your advise is greatly appreciated,

Stacey