Re: G tube feeding heart repair and enzymes

January 22, 2009

Did you go through any genetic testing. We had friends that had a daughter,

they thought cp. She has anglemans syndrome.

Tammy

G tube feeding heart repair and enzymes

My daughter Isabell who will be 3 February 21 was born with a heart

defect and had surgery when she was 3 days old. She has a cadaver

blood vessel grafted from her pulmonary artery to her right ventricle

witch is not alive. Will enzyme therapy affect this cadaver blood

vessel? Second question she has severe oral issues, as in she eats

only when she feels like the moon and stars are aligned just right,

and has had a G tube since 3 months old. How do other parents give

there children enzymes while on continuous feeds over a 13 hour

period of time? She is on Neocate Junior 30 cal per oz, this is a

corn based formula for children with gastro problems, and she has not

had a solid bowel movement since we started it 2 years ago. I don't

mean to graphic but her bowel movements are almost like water. I and

my wife have brought this up to her gastric DR several times and we

always get the same answer " Don't worry its normal " I'll bet the

people here have never herd that phrase before.

I can say that when they diagnosed her with ASD I and my wife were

happy. I know your thinking HAPPY! yes happy that meant that there

was an answer to all the questions, and when you have several DR's

telling you that it's RETT syndrome and she will be like a Vegetable

for the rest of her life or it's this syndrome and she will probley

die by the age of five, at least autism offered some kind of hope. It

made sense the no eye contact, no speech, the hand flapping, constant

vomiting, and getting sick.

Thank you

January 22, 2009

My daughter is g tube fed and has been since 10 months old. She was on

breastmilk for 2 years then I added blenderized foods one at a time and

eventually she had a good enough variety to do away with the breastmilk. She

got her last bottle of breastmilk on her 3rd birthday. She always vomited(dr

called it reflux, but it was vomiting) on my milk, but it was not as bad when I

eliminated milk and soy. When I added the foods I realized she also had

increased vomiting with milk, soy, corn, eggs and oranges so I eliminated those.

She tolerates some forms of corn, but not all. She did not tolerate the formula

you are talking about, it caused severe pain and vomiting. Anyway I have not

used enzymes with her, but I will start as soon as I can afford to buy them.

She does get many raw foods so she is getting some enzymes from that. I would

like to suggest looking into the blenderized diet for your child, there is a

group for blenderized diets and

that is where I got a lot of info on it, but I was already doing it when I

discovered the group. Many kids don't tolerate formula whatsoever, but

tolerate real whole healthy foods and the blend can be varied to meet your

child's specific needs unlike a one size fits all formula. Water like bms are

not normal, but many drs think it is because all their tube fed kids have that

or constipation because they are fed formula. They assume it is a tube fed

thing, but it is really a formula fed thing.

-Undiagnosed Asperger's Syndrome

Stay at home mom to 3, Wife to

-6-6-02-Autism Spectrum, the light of my life

Katy-11-19-03-undiagnosed genetic syndrome that includes cleft palate-Pierre

Robin Sequence, scoliosis, heart defects, short stature, low muscle tone,

developmental delay, oral defensiveness, g tube fed part time-working on oral

feeding, slightly dysmorphic features, and my joy

J.D-no issues except he is totally in love with mommy, cutest baby in the world

visit my blog http://busiestmommyinamerica.blogspot.com

" If you think my hands are full, you should see my heart! "

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From: caveman_mex

Subject: G tube feeding heart repair and enzymes