Baby Needs LC Formula to Survive!!
 

:cry: :cry: I'm posting this hoping that those of you who live in Canada and Britain may be able to help this couple. Their baby son is unable to digest carbohydrates and was getting a formula that the FDA just banned and removed from the shelves.

They desperately need this formula....

But the FDA took it off the market in the US... details in the article:
www.channel4000.com/sh/health/stories/

The family is looking for anyone who can help.

I couldn't find the article. Has the couple's pediatrician given them any advice? Have they looked at soy based formulas which could be easier to digest than milk based?

i coudn,t find it either.we need more info

christine

Here is the link of the page when I am there, staring at it - I hope it will take you there because there is a video clip. However, most of the video clip is written out below.
http://www.channel4000.com/sh/healt..._12000008082003


Family Begs For Medicine To Keep Son Alive
FDA Suspends Distribution Of Formula That Provides Special Diet
Updated: 1:50 p.m. EDT August 8, 2003

HARMONY GROVE, Wis. -- A Wisconsin couple are fighting the clock and red tape to keep their 15-month-old son alive.

Video Report

The boy's father says they are frantically searching for someone who can help them.
Little Tyler has a rare neurodegenerative disorder. The Tracys have found a miracle for their little miracle, but they can't get their hands on it.

Ketocal is a formula that provides the diet Tyler needs to keep him alive. The Food and Drug Administration has suspended distribution of the formula, which provides a ketogenic diet high in fat and very low in carbohydrates.

"It's the only thing that keeps him going," his dad, Jeff, said. "It's the only thing that keeps him alive. We need it now. We need it now for Tyler because he needs it."

Dr. Jaj Sheth said the Tracys are in a very difficult situation.

The pediatric neurologist who has treated Tyler said there are alternatives to ketocal, but Tyler has been unable to tolerate them. Sheth said the disorder Tyler suffers from presents a life-and-death scenario.

"In children that present at a very young age, typically they have a life span that's limited," Sheth said.

The supply of KETOCAL formula is down to a week for Tyler now. The Tracys normally get it from a hospital nutritionist, but when the supply ran dry, the Tracys found a Canadian distributor. The formula could be sent to a pharmacist or other third party.

"From there, I'd have to get it into the U.S. on my own either through the mail or bring it over the border," the boy's father said.

Smuggling in ketocal for Tyler is still an option, but the family hopes to cut through the red tape and get ketocal like they used to get it.

Until then, Tyler's dad will talk to anyone who will listen.

"Put a spotlight on the issue, try to expedite the process to get it back in production, get it back on the shelves, get it back in our kitchen," Jeff said.

The Tracys said they haven't gotten any answers about exactly why ketocal, manufactured in Great Britain, is no longer available.

Tyler's nutritionist said that as soon as Tyler goes off the special formula, his condition could deteriorate quickly.

U.S. Rep. Tammy Baldwin, D-Wis., is working directly with the Food and Drug Administration and the Department of Health and Human Services on behalf of the family.

what about breastmilk?
 

there are a lot of places (in the US anyway) that have breastmilk that lactating women have donated. is this an option? if so, maybe i could look up some places and see what i can find out...