Neocate and metabolic tests

February 17, 2005

Has anyone ever heard of blood/urine metabolic tests being false

positives due to the fact that the child is only on Neocate formula?

We went and saw a new doctor at s Hopkins today and she said that

Isaiah's metabolic tests could have come back fine because he is only

on Neocate formula and it is so elemental that it does not allow

proteins and stuff to build up in his system. I have never run

across this type of information and was just wondering if anyone else

had.

She and the neurologist do believe that Isaiah does have a metabolic

disorder....first the neuro told me mitochondrial. Still learning

what the differences are!

Thanks

Willow

Mother to Isaiah 2, GERD, EE/EG/EC, severe gastroparesis, hiatal

hernia. Neocate 1+ only. Seizures...cause being investigated.

Currently being tested for mitochondrial disorder and/or metabolic

disorder, and the neurologist thinks he has neurofibromatosis. EEG

showed a predominence of " irregular activity " and " slower than

average background activity for age " (no one can tell me what that

means). Failed food trials: 6/04 watermelon, 9/04 pears, 12/04 green

beans (may try again), and 2/04 potato.

http://www.caringbridge.org/md/isaiah

February 17, 2005

Sorry I meant to say " fasle normal " not false positive!

Willow

---- Original Message ----

From: Layne199@...

To: Mito

Subject: RE: Neocate and metabolic tests

Date: Fri, 18 Feb 2005 02:09:00 -0000

>

><html><body>

>

><tt>

>Has anyone ever heard of blood/urine metabolic tests being false

>positives due to the fact that the child is only on Neocate formula?

>

>We went and saw a new doctor at s Hopkins today and she said

>that

>Isaiah's metabolic tests could have come back fine because he is

>only

>on Neocate formula and it is so elemental that it does not allow

>proteins and stuff to build up in his system. & nbsp; I have never

>run

>across this type of information and was just wondering if anyone

>else

>had.

>She and the neurologist do believe that Isaiah does have a

>metabolic

>disorder....first the neuro told me mitochondrial. & nbsp; Still

>learning

>what the differences are!

>Thanks

>

>Willow

>Mother to Isaiah 2, GERD, EE/EG/EC, severe gastroparesis, hiatal

>hernia. Neocate 1+ only. Seizures...cause being investigated.

>Currently being tested for mitochondrial disorder and/or

>metabolic

>disorder, and the neurologist thinks he has neurofibromatosis. & nbsp;

>EEG

>showed a predominence of & quot;irregular activity & quot; and

> & quot;slower than

>average background activity for age & quot; (no one can tell me what

>that

>means). & nbsp; Failed food trials: 6/04 watermelon, 9/04 pears, 12/04

>green

>beans (may try again), and 2/04 potato.

><a

>href= " http://www.caringbridge.org/md/isaiah " >http://www.caringbridge.

>org/md/isaiah</a>

>

> & nbsp;

>

></tt>

>

>

><tt>

>Please contact mito-owner with any problems or

>questions.</tt>

>

>

>

>

>

><tt><hr width= " 500 " >

>

February 18, 2005

I have never heard of that one before. Grace was soley on Neocate for all of her initial bloodwork, before her diagnosis, and nobody told me that. She was off the Neocate by the time she had her muscle biopsy, and the results were still "off". I don't understand how the Neocate would have less vitamins or protein than the regular formula. I've never heard of a "healthy" child needing Neocate, so I would think that it would have more of everything good in it. Who knows?

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February 18, 2005

on 2/18/05 6:48 AM, at themommyx5@... wrote:

I don't understand how the Neocate would have less vitamins or protein than the regular formula. I've never heard of a " healthy " child needing Neocate, so I would think that it would have more of everything good in it. Who knows?

I don't know about how it effects the results of things, but I do know it doesn't have any " real " protein in it. It has all the pieces of the important proteins in it, but they are already broken down into their " elemental " pieces. That's why it can work so well for kids who can't break the protiens down themselves (missing enzymes) or who are allergic to certain proteins. My son Will was on it for quite awhile because of protein intolerances. At least that's how it was explained to me. It has all the pieces needed for complete nutrition, but they are broken down to small pieces.

I guess I can see in the sense why it could effect some tests. Especially ones where it would be necessary to have been exposed to something, or test to show if the body is not handling things correctly. I'm not sure though, it makes sense.

J

in Colo

February 18, 2005

Just thought I would throw this in--my 16 month old was put on

Nutramigen after problems with all the other formulas. But she still

has lactic acidosis and abnormalities consistent with the diagnosis of

her older sibs.

February 23, 2005

The majority of all my sons metabolic tests done including his muscle biopsy and his bllod work were done when he was on basically NEOCATE only. The biopsy was done when he was eating but was still about 50% tube fed neocate. All his initial blood work and urine tests etc done at By Dr. and also at CHOP were all done on neocate and his results were always positive.

hugsSharonI ran the Marine corps marathon on 10-31-04 and I am ran the Las Vegas Marathon half marathon in 2:30 on 1-30-05 - If you believe you can do it -- YOU CAN!!!

Re: Neocate and metabolic tests

Just thought I would throw this in--my 16 month old was put onNutramigen after problems with all the other formulas. But she stillhas lactic acidosis and abnormalities consistent with the diagnosis ofher older sibs.Please contact mito-owner with any problems or questions.

February 23, 2005

Thank you for all the responses. Not sure what I think about the

suggestion that the formula could alter metabolic tests. The doctor

did say that it wouldn't affect ALL the tests, just 2 I think. I

knew a simply " yes, that could happen " would be way too good of an

answer for the boy without answers...LOL. Guess we will just keep

plugging away for answers!

Thanks again

Willow

Mother to Isaiah 2, GERD, EE/EG/EC, severe gastroparesis, hiatal

hernia. Neocate 1+ only. Seizures...EEG showed a predominence of

" irregular activity " and " slower than average background activity for

age " (no one can tell me what that means). Current thought of

doctors: metabolic disorder, autonomic nervous system disorder.

Failed food trials: 6/04 watermelon, 9/04 pears, 12/04 green beans

(may try again), and 2/04 potato.

http://www.caringbridge.org/md/isaiah

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