Re: Advice about relactation

December 7, 2001

There are breast milk banks at various centers around the country that

would love to have your milk. They give it to premies until their

mothers' milk comes in. It is the only ideal nutrition that there is

for premies - formula companies have not been able to come up with

something synthetic that is easily digested. As far as I know you can

ship the milk frozen. I'm sorry I don't have the names of the banks on

hand, but let me know if you are interested and I may be able to help

you find out where to send it. I'm sorry to hear that Jessalyn can't

tolerate the breastmilk. I wish you luck in finding out a diet that

she can handle comfortably.

Angie

> Thanks to Lonnie, Cyndi and Angie for the advice on relactation. I

> truly wish that was an option. For some reason, Jessalyn does not

> tolerate breastmilk. Initially I breastfed her, then began

> supplementing with Enfamil when she did not gain weight properly.

> She was miserable during those first few weeks, with diarrhea, gas

> and extremely bad colic episodes. During a desperate attempt to find

> out what she could tolerate, I stopped nursing her and rented a

> breast pump. She eventually ended up on soy, and this was somewhat

> tolerable, though she was still pretty miserable poor thing. I

> started giving her the breastmilk again at my doctor's advice and

> Wow, what a nightmare. She had the worst 4 days of her life (and

> mine too I think) with the diarrhea, etc. all over again worse than

> before. I think she might be lactose intolerant but the pediatrician

> says its unlikely. In any case, no breastmilk for Jess. I do feel

> terrible that in trying to give her the best I caused her a lot of

> pain. Plus I have a whole freezer full of breastmilk that I can't

> bear to throw out. Oh well. She is on Nutramigen now and seems

> somewhat better. I am hoping this colic resolves soon.

>

December 7, 2001

My son is senstaive as well. I breast fed him for 5 months and then

he began to lose weight. He would not take a bottle and breast feed

at the same time so he went on to formula. After trying many

different formulas he seemed to do best on Alimentum. It is similar

to Nutramegen only different manufacturer (once Ronan had a gtube we

found he could tolerate nutrmagen as well, just didn't like the taste

as much as Alimentum). We now have him on a gtube diet of Peptamin

Jr. Ironically it too is an " elemental formual " (partially broken

down thus easier to digest). WE started him on this diet in July and

by Oct. he had jumped from the 10th percentile to the 25th! We are

not sure why this diet is the " one " but we aren't going to mess with

it either. Good luck.

December 8, 2001

I donated breast milk after my 1st son. The bank had a minium amout

for a one time donation. They said that the cost of testing the milk

was not worthwhile unless there enough. They were much more

interested in people who would give donations every day or every

week. Don't want to discourage you but don't be suprised if they are

not as interested as you would want.

Twana

> > Thanks to Lonnie, Cyndi and Angie for the advice on relactation.

I

> > truly wish that was an option. For some reason, Jessalyn does

not

> > tolerate breastmilk. Initially I breastfed her, then began

> > supplementing with Enfamil when she did not gain weight

properly.

> > She was miserable during those first few weeks, with diarrhea,

gas

> > and extremely bad colic episodes. During a desperate attempt to

find

> > out what she could tolerate, I stopped nursing her and rented a

> > breast pump. She eventually ended up on soy, and this was

somewhat

> > tolerable, though she was still pretty miserable poor thing. I

> > started giving her the breastmilk again at my doctor's advice and

> > Wow, what a nightmare. She had the worst 4 days of her life (and

> > mine too I think) with the diarrhea, etc. all over again worse

than

> > before. I think she might be lactose intolerant but the

pediatrician

> > says its unlikely. In any case, no breastmilk for Jess. I do

feel

> > terrible that in trying to give her the best I caused her a lot

of

> > pain. Plus I have a whole freezer full of breastmilk that I

can't

> > bear to throw out. Oh well. She is on Nutramigen now and seems

> > somewhat better. I am hoping this colic resolves soon.

> >

December 9, 2001

Have you tried carnitor. That stopped 's vomiting.

First we did IV then switched to oral.

Lonnie

bridgmanco wrote:

I donated breast milk after my 1st son.

The bank had a minium amout

for a one time donation. They said that the cost of testing

the milk

was not worthwhile unless there enough. They were much more

interested in people who would give donations every day or every

week. Don't want to discourage you but don't be suprised

if they are

not as interested as you would want.

Twana

> > Thanks to Lonnie, Cyndi and Angie for the advice on relactation.

I

> > truly wish that was an option. For some reason, Jessalyn

does

not

> > tolerate breastmilk. Initially I breastfed her, then

began

> > supplementing with Enfamil when she did not gain weight

properly.

> > She was miserable during those first few weeks, with diarrhea,

gas

> > and extremely bad colic episodes. During a desperate

attempt to

find

> > out what she could tolerate, I stopped nursing her and rented

a

> > breast pump. She eventually ended up on soy, and this

was

somewhat

> > tolerable, though she was still pretty miserable poor thing.

I

> > started giving her the breastmilk again at my doctor's advice

and

> > Wow, what a nightmare. She had the worst 4 days of her

life (and

> > mine too I think) with the diarrhea, etc. all over again worse

than

> > before. I think she might be lactose intolerant but the

pediatrician

> > says its unlikely. In any case, no breastmilk for Jess.

I do

feel

> > terrible that in trying to give her the best I caused her a

lot

of

> > pain. Plus I have a whole freezer full of breastmilk

that I

can't

> > bear to throw out. Oh well. She is on Nutramigen

now and seems

> > somewhat better. I am hoping this colic resolves soon.

> >

Please contact mito-owner with any problems or

questions.

December 9, 2001

My daughter Becca was the same way. She was too weak to nurse when she was

born, but I pumped and bottle fed with a special nipple. However, she could

not tolerate my milk. We switched to a soy formula, which seemed good for a

few days, then the screaming started again. We literally went weeks where

she did not sleep more than about 20 minutes at a time. We were exhausted

and I felt so guilty because I was really resenting my baby = ( The doctor

recommended Nutramigen, and that was a life-saver, she finally seemed

content. It was very expensive and she was a full year old before she could

tolerate going on to soy formula then follow-up formula. She did tolerate

stage 1 foods, but feeding has always been an issue, and now that she's 4,

it's really a battle. She just never wants to eat. I know she is on a lot

of meds for seizures and such so I try to start her off with things she

likes and that are easy on her stomach. Now we are having to revisit the GI

testing route because she is having reflux and stomach aches so often.

Sorry to be so long-winded, but I do need to ask a few questions of the

group. We just got test results back from Dr. Haas in San Diego and it

seems everything came back " normal " but HE CAN'T RULE OUT MITO! Her lactate

levels were normal (blood and spinal fluid) but when she had an MRS done 2

years ago, it showed high levels of lactic acid. This is so confusing! We

have opted not to do a muscle biopsy at this time because according to Jan

at Dr. Haas' office, since she doesn't have lactic acidosis, they really

wouldn't be able to treat her mito anyway. So they left the decision up to

us and I can't see putting her through surgery at this time. We are having

a heck of a time with seizure control lately (our miracle results with the

VNS have gone by the wayside...) and consequently are having trouble with

fatigue and stamina. Becca has gained back much of the losses she

experienced a few months ago with the onslaught of sz, but has not been

progressing in any areas and is just sort of hanging on. Anyway, I could

use some advice on whether to chuck this mito thing and get on with our

lives or continue searching for a dx. I'm sure others have been faced with

similar circumstances. Thanks for letting me ramble...

Rhonda-Mom to Becca the Brave

Advice about relactation