Re: food intolerance

[Guest guest]

In a message dated 99-03-28 14:57:44 EST, you write:

<< and does not seem dehydrated. I asked his paed about it on

Friday and she said it was proba >>

Elaine,

Even if you don't think he is dehydrated, be on the lookout!! Make sure he has

tears when he cries and watch for hands and feet and lips turnin blue. I never

thought Jillian was dehydrated either and if I had waited one more day, we may

have lost her, so just look for these signs (especiallty the tears)

Foley

[Guest guest]

Dear Elaine,

I would think that it certainly could be possible that Jack has developed an

intolerance to milk and dairy products.

Kendra developed such a condition when she was four months old and this is a lot

younger than Jack is. Kendra had only

breast milk for four months and then could not tolerate it without diarrhea and

bleeding in the stomach. She was ill

when this developed and never got over it. SO, at first it was thought to be an

infection or virus of some sort but

once she was not ill anymore she could not tolerate breast milk or formula

again. She started on PREGESTIMIL formula

which is broken down into amino acids and did very well on that.

Once we reintroduced milk in the form of yogurt at age 6, Kendra developed

constipation that we are finally seeing

improvements in. In fact I just returned from the health store a few minutes

ago where I bought powdered acidophilus

to give her in place of yogert as this particular powder is milk/lactose free.

It is thought that Kendra can't tolerate

the protein in milk. she may or may not have problems also with the sugars.

In my mind there are several unanswered questions about the milk problems. You

know before the list and before we knew

Kendra had CHARGE, we attributed her difficulty with milk to the trauma of

multiple surgeries and illnesses. Antibiotic

use can lead to problems with digestion and Kendra like most CHARGERs had many

antibiotics in order to live. Since

reading of so many cases where colic, constipation, diarrhea and allergies are

present in CHARGERs I'm wondering if

there is something that needs to be looked into in terms of metabolism for all

CHARGERs with these difficulties. For

example is there a lack of certain enzymes and so on. Or does the digestive

system just get maxed out due to

antibiotics?

I often think of Jack as I'm hoping his eating and growth with take a leap

forward. Let us know what you decide about

the milk intolerance question. I'm certain there are many substitutes for food

if it does turn out he has an

intolerance.

Best wishes to you,

wendy

Mom to Kendra - 12 CHARGE, 18 and Camille 21

Portland, OR

Keedy@...

> From: JMurraybel@...

>

> Hello All,

> Jack has still got diarrhoea. He has now had this for a full week. He has not

> been vomiting and does not seem dehydrated. I asked his paed about it on

> Friday and she said it was probably a virus and as he seemed otherwise well

> just to carry on as we were for the next few days. He has lost weight again

> and is now down to 16lb3oz. I am going to call his paed in the morning as the

> diarrhoea is no better.

> The question I wanted to ask you all is this:-

> Could Jack have suddenly developed an intolerance to milk and dairy products

> and if so how would I know? Apart from the diarrhoea he is fine-- no wheezing,

> no rashes, no swelling etc.

>

> Thanks in advance

> Elaine mum to Elise(6yrs) & Jack(20mths) CHaRGE

> Dumfries, Scotland

>

[Guest guest]

Elaine,

I am new to the charge list. My daughter has never had diarrhea before

and is almost 3, 4 weeks ago she got it and it last for almost a week. I

thought it was very strange, but doc said it was just a virus. She has been

sick since with other viruses. Right now we are on our third day of a fever

of 103.8 and lower.

I'm not sure about the intolerence to milk. Hope he gets better soon.

Amy mom to Lorna 2 1/2 (possible charge)

[Guest guest]

Elaine-

I don't know what to think. I'm convinced that Aubrie has a problem of

some kind with milk products. She was most successful (as far as

decreased reflux and increased weight gain) when on Nutramigen formula

which is for kids with milk protein allergy. But there was a time that

Aubrie had several instances of unexplained diarrhea that the doc

attributed to viral infection of some kind. It was driving me crazy to

keep dealing with sudden diarrhea, no treatment, and it'd suddenly

improve. I believe that was during the time that she was on the special

formula. So maybe what Jack is going thru really is just a viral thing

that will improve on its own. But then again, it seems like there are

several kids with some kind of milk intolerance. Let us know how Jack

progresses. I'm sorry to hear that he's continuing to lose weight.

Aubrie's not doing great in the weight area either and it is very

worrisome. Good luck!

Michele

mom to Aubrie (16 mos) CHarGE and (7 yrs), wife to DJ, in IL

westml@...

[Guest guest]

Hi everyone,

Since your talking about food intolerance and diarrhea, I thought I 'd

throw in KK's experiences. For almost a year(if my memory serves me

right) she had diarrhea to very soft stool. I never really thought

anything of it, until someone mentioned it and told me that it wasn't

normal. So as I started to look at what could be causing it, I became

very frustrated with what it was and why. I just couldn't figure out

what it could be. For months we had no answers which only made me even

more mad. Finally her nutritionist asked me " well why can she have that

cookie and not this cookie " . It was the oreo cookies verses WalMarts

oreo like brand. She did very well with WalMarts cookie. But had bad

diarrhea with the real oreo cookie. So she asked me to start looking and

taking note of the first 10 ingredients. For anyone who doesn't know

this,(I certainly didn't even know about much less give it much thought

before all this) but the first 5-10 ingredients of any product has the

most of it....like say you see ..Corn syrup, food coloring, sugar, this

and that.... Well the product has a high dose of Corn syrup, then the

next product is a high doses(but not as high as the corn syrup), and

sugar there is quit a bit in there, and so on. So we were told to look

at the first 10 ingredients. See what was consistent with her having

diarrhea. Turns out that Corn Syrup and Sugar, Fructose...were always in

there somewhere within the 10. So then we narrowed it down to the first

5 ingredients, and mixed and matched to find out what it was. Testing at

the time seemed out of the question since KK was very hateful of all

office personal. They didn't want to put anymore stress on her. So we

found out without having to spend money for medical testing, that she was

not really, allergic, but has some kind of allergies to sugar.

So the point to all this is.....could it be possible to do a home test

like this for Jack and others that are having this problem.? With

constipation, I can't help. We haven't dealt with that yet.

Hope this may help someone who's having diarrhea problems.

Korey mom to KK

Kabuki Syndrome, age 3

Bonney Lake, WA

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[Guest guest]

Elaine,

Both and I have had past problems with doctors saying nothing to

worry about as far as dehydration was concerned. SO yes if these isn't

tears, start the look out. Keep an eye out for the dehydration.

Constant bad diarrhea can and will cause the dehydration before you could

even get a chance to second guess it. If I remember correctly, it snuck

up on just like that. And with KK I knew her diarrhea along with

vomiting was getting bad, so that's why we went to see that " so called

doctor " to check and see about they dehydration. He said there was

nothing to worry about and that you can't get dehydrated within a 12-24

hr period. My mom was there weeks prior for the same thing. KK had

caught the same kind of flu. And the very next day after the ER visit,

we were at the Childrens ER for that very same thing~dehydration~...so

please please...don't let this happen to Jack. The two docs that were in

involved with and I were nothing short of ***holes!!! Excuse my

language....that subject still gets me so very mad.

OK I've said my peace... :0)

Korey mom to KK

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[Guest guest]

We had Jillian on a soy formula only becaus eof the mucus. They say milk

causes more mucus. Anyway about 3 weeks before she turned 1, I switched her to

the Next Step Toddler Soy formula. She screamed and tooted constantly. Gas...

So after about 4 days of that, I put her on Vit D reg. milk and have never had

a problem. The mucus did not return. She's not gassy and seems to tolerate

anything with dairy.

Foley

Mom to ,, and Jillian

[Guest guest]

In a message dated 99-03-29 01:22:11 EST, you write:

<< He said there was

nothing to worry about and that you can't get dehydrated within a 12-24

hr period. My mom was there weeks prior for the same thing. KK had >>

The hospital told me that dehydration was the #1 killer of babies in the

world!!

Foley

[Guest guest]

Michele Westmaas wrote:

>

>

>

> Elaine-

> I don't know what to think. I'm convinced that Aubrie has a problem of

> some kind with milk products. She was most successful (as far as

> decreased reflux and increased weight gain) when on Nutramigen formula

> which is for kids with milk protein allergy. But there was a time that

> Aubrie had several instances of unexplained diarrhea that the doc

> attributed to viral infection of some kind. It was driving me crazy to

> keep dealing with sudden diarrhea, no treatment, and it'd suddenly

> improve. I believe that was during the time that she was on the special

> formula. So maybe what Jack is going thru really is just a viral thing

> that will improve on its own. But then again, it seems like there are

> several kids with some kind of milk intolerance. Let us know how Jack

> progresses. I'm sorry to hear that he's continuing to lose weight.

> Aubrie's not doing great in the weight area either and it is very

> worrisome. Good luck!

>

> Michele

> mom to Aubrie (16 mos) CHarGE and (7 yrs), wife to DJ, in IL

> westml@...

>

Michele + Elaine,

I don't know if this will help but; MacKenzie seemed to tolerate

regular Similac fine until she was about 4 months old. At that time she

didn't sleep any more than 4 hrs. in a 24 hr. period. We did this until

she was 7 mos. old. We then switched to a lactose free formula and she

started sleeping that night. Since then she's moved to Pregestimil, a

pre-digested formula<kind of> and it has no milk products and she's done

even better. She weighs 21lbs. at 10mos. old. It seems obvious that many

of our kids have these problems, I think it's a case of trial and error.

Jeanie Colp

mom to MacKenzie 10mos.CHARGE

[Guest guest]

In a message dated 99-03-29 13:39:46 EST, you write:

<< She weighs 21lbs. at 10mos. old. >>

WOW!!!!!!

Foley