Colgan finally out of the Hospital

[Guest guest]

Hello everyone again!!!!! After 13 days of being couped up in the

hospital we are finally home. This time we went in because of Colgan's

weight and absorption problems. And left with the same problems because

I was sick and tired of hearing I don't know what to do next.

He has not gained any weight and kept in on in nearly 5 months.

To me this is really ridiculous. The main reason at this point is

because he is not absorbing a lot of his calories and they are going

right through. He has had trouble eating enough calories as well but is

eating some so I want to try to keep feeding tube out of the question

for right now at least. I did consult with Surgery though so that I

could get questions answered because it may come up again in the future.

Ok so Colgan is taking 2,200 units of lipase per kilo per meal a

total of 75,000 units. He is only 8 months old and as far as anything

that I have read goes most doctors will not prescribe over 2500 units

per kilo per meal in most cases anyways. Why is he needing so many

enzymes.

These are all of the things that we ruled out while at hospital

No bacterial overgrowth in gut and intestines

No lactose intolerance

( these both tested with the Hydrogen Breath Test)

No deficiancies with any mineral of vitamin found

Nothing wrong with Urine ( could have been acitosis ) something

like that causing some sort of infection.

These are the meds that we are not now

Periactin for appetite increasing

Prevacid for GERD

Erythromycin ethyleccinate used for its Pro Kinetic abilities not for an

antibiotic

_ it is given at a low dose to help stomach empty out faster.

Said to work better than Regan and with less side effects.

Creon 5 - no more than n 15 capsules per day

* this is still not enough to stop malabsorption problems, but can

go no higher and this is too high.

He also is taking Pregestimil at 30 cal now mixed with Ploycose and MCT

oil.

We left the hospital very angry because they were willing to settle for

this being as good as it was going to get. I just wanted to scream the

entire time that we were there. 13 days of rambling back and forth and

in the end finding nothing except changing a few meds and going home

with the same troubles that we went in with. Finally I just told our CF

doc that I wanted to go home. He agreed with me that he would be better

off at home there where already several cases of RSV in hospital and

other respiratory stuff as well. UGHHHHH I did not want him to get any

of that. I hope we got out of there soon enough we will see in the next

couple of days.

My husband is being sent home because of all of the complications

so that we can fight to get transferred to a new area for a chance to

see better doctors. This will mean another move but I am willing to try

anything. We are going to fight for Baltimore area. If any of you all

use clinics and hospitals in the area perhaps you could give me some

information about the clinics. I mean how you like them and stuff I can

look up phone numbers and stuff like that. I just want to make the

right decision because we will not be able to relocate again with

military after this one. Any advise in any of this stuff I am grateful

for.

I am going to continue looking at oral GSH and Crataegus as well as

taurine as possible supplements to help Colgan with this terrible

problem that he is having. I am very leary of all of it just because I

don't feel I know about them enough but I am really looking into them.

I am such a chicken about trying these things on my little baby.

Well, Frustrated as ever but glad to be back on line with all of you

and hope that you and your families are doing wonderful

love to all of you

Ashauna