Re: Colgan finally out of the Hospital

October 3, 2003

Hi my name is Becky my 6 year old was having these same problems and she was

finally found to need 45 calories per ounce to gain weight ask the

nutrititionist how to mix the formula and polycose to get the most calories also

there is

an enzyme called pancreacarb it has enzymes and some thing to buffer it for

the acid in little tummies with too much acid.I have had to learn the long hard

way as we didn't have a computer when Rebekah was little she had to have an

NG tube as an infant while she breastfed I had to bolus formula into the tube

in her nose or she would make it all come back up the tube and spew all over

the place (very stubborn baby she loved to nurse and she Hated that formula it

is nasty) .She had to have a nissan and g-tube at 8-9 months for failure to

thrive.I do remember the one time in the hospital she gained 1 pound in 24 hours

(we found the nurses had doubled her formula concentration she had 90

calories an ounce for 24 hours) that was scary but I learned everyone can make

mistakes and it taught me to question every thing any one wanted to do to my

child.I

hope you have some better results. How old is Colgan if he is old enough for

baby food you can put cream & butter and polycose in mashed potatoes to up

calories.BeckyB.

October 3, 2003

Golly , finally, you will have your hubby to share in this & the decision

making . You do need him here with you. I am so glad that is going to

happen. It appears that you will then be able to have more opinions & each,

I am sure mean well. But , if something isn't working, it will at least be a

start towards the search for the best help.. Your sweet Colgan will be in

his own beddy & have his mommy & daddy with him to help. Your stress

level-------though NOT leaving completely -will have a support system &

lessen somewhat.

Now try to re-assure yourself, things will get better. There are some super

docs all over, & if they would refer to each other, that would be even

better.

So, Gal, take 3 deep breathes. & smile with lots of special thoughts. I will

send mine as well.

LOVE & HUGS,

grandmomBEV

Colgan finally out of the Hospital

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

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The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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October 3, 2003

Ashauna,

I am glad to hear that you are home and that your hubby will be home soon. I am

so sorry that they weren't able to figure out what is wrong while you were in

the hospital. Have they changed his enzymes recently? Sometimes just switching

brands helps. Also you mentioned that Colgan is on Prevacid. takes

Zantac because the docs say it helps the enzymes work better. Has Colgan

already tried that? I really hope that this gets solved soon so Colgan can

start to feel better!