weight loss

[Guest guest]

Hello,

I took to the doc yesterday for her ear infection that

medication doesn't do anything for anymore, plus immense decrease in

weight. She has gone from 73lbs. to 63lbs. in 3 months. Her diet of

pureed foods with duocal, 12 ensure puddings a day and other soft

food remain the same. The weather has been extremely hot here and

her appetite has decreased, but not so much that it would allow her

to shed 10 pounds, I wouldn't think. has a hiatel hernia

that makes it very difficult for her to swallow at times,

unfortunately no one is willing to repair this as they say it is a

huge risk to them to operate on her. She has a feeding tube but,

legally, will not be allowed to live with me if she become dependant

on it. Stupid, if you ask me, as I have been taking care of her for

8 years!!

Any insight? What is being added to the foods that you all blend

for the kids?

, friend to , 24 on 9/5!!, CHARGE

[Guest guest]

I've been boosting calories with Haagan Daz (270 calories for 1/2 cup I think),

bananas (100 cal each) and avacodos (300 calories each) (mixed with water or

juice) in the blender.

Good luck with the weight gain! It is so frustrating!

Lori Myers

's (4 on 9/4) Mom and also mom to (7) and Emma (2 in October)

-------------- Original message --------------

> Hello,

>

> I took to the doc yesterday for her ear infection that

> medication doesn't do anything for anymore, plus immense decrease in

> weight. She has gone from 73lbs. to 63lbs. in 3 months. Her diet of

> pureed foods with duocal, 12 ensure puddings a day and other soft

> food remain the same. The weather has been extremely hot here and

> her appetite has decreased, but not so much that it would allow her

> to shed 10 pounds, I wouldn't think. has a hiatel hernia

> that makes it very difficult for her to swallow at times,

> unfortunately no one is willing to repair this as they say it is a

> huge risk to them to operate on her. She has a feeding tube but,

> legally, will not be allowed to live with me if she become dependant

> on it. Stupid, if you ask me, as I have been taking care of her for

> 8 years!!

> Any insight? What is being added to the foods that you all blend

> for the kids?

>

> , friend to , 24 on 9/5!!, CHARGE

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information

> will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact

> CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

-

Many stores around here sell lactose free or lactose reduced milk.

And if that's not in your area perhaps you can try the enzyme drops

which convert the lactose to glucose. Just a thought ...

From the keyboard of courtneyandheather:

> Ahhhhh!! is lactose intolerant, therefore, she can't have

> any of the dairy concoctions.(eats ice crams and yougurt in

> moderation.) ...

--

+ Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html +

| Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & |

| Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and |

| birth defects, not by eliminating them or making them happen only to bad |

| people (He can't do that), but by summoning forth friends and neighbors |

+ to ease the burden and to fill the emptiness. " -- Harold S. Kushner +

[Guest guest]

,

When Jeff lost almost 30 lbs from back surgeries we used a product

called " Med Pass 2.0 " by Hormel. It is a balanced fortified nutritional

supplement. We used the vanilla flavor. Jeff loved it! Jeff has Celiac

Disease and he is also lactose intolerant. This product is gluten free

and lactose free. He would drink it straight between meals 3 X a day,

and I would also mix it with " Soy Dream " or any other brand of frozen soy

dessert for a shake once or twice a day. The Med Pass has 480 calories

in 8 oz. The frozen soy (like ice cream) varies depending on the

flavors. I always bought the one with the most calories, usually some

chocolate+ flavor. That added another 230 - 460 calories depending on

how much I added. Jeff's regular doctor wrote a RX for the Med Pass and

I got it filled thru our hospital dietitian. It was covered by Medicaid.

Along with this, I added butter to everything that it could be added to,

and he loved avocados. Good luck and I hope you can find something to

work for . I do hope there is nothing serious going on. You are

doing a wonderful job at caring for her. I'm glad she has you!

Smiles from,

Baker - Mom to Jeff (20 yrs. CHARGEr), Steve (21 yrs. and coming

HOME in 7 days after serving a 2 year Mission in Brazil), and others

married with children of their own.

Idaho, USA

wrote:

Ahhhhh!! is lactose intolerant, therefore, she can't have

any of the dairy concoctions.(eats ice crams and yougurt in

moderation.) Bananas are out as well, she foams at the mouth. She

does like mild guacamole though. The doc had recommended intant

breakfast and we can't do it. The GI has been called and we are

waiting to hear back from him.

She had blended meatballs and noodles with duocal, 2 ensure

puddings, an applesauce cup, gogurt and her thickened juice at her

day program today, when she came home she voided it, so this all

makes me think that there is something very wrong going on.

, caregiver to , CHARGE, 24 on 9/5!!

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