Re: I wonder if I've found Allie's problem

[Guest guest]

Debi,

Get an amino acid blood test.... if they find alloisoleucine, then

that combined with the burnt sugar urine smell should pretty much

confirm it. It is VERY rare, though. In the mean time, you can

restrict leucine, isoleucine and valine and see if that helps at all,

since that would be the treatment.

> Okay, I'm really wondering if Allie has Maple Syrup Urine Disease.

> I've always noticed her urine smells sweet, like brown sugar to me.

> I've read about it over the years but figured she wasn't always

> signficantly sick, like the classic form. BUT, since we've gone off

> gfcf I've been letting her eat Gerber Meat Sticks. EVERY TIME she eats

> these I can count on her waking up in the night. I always thought

> perhaps there was something to do with the milk powder in it. BUT, she

> was eating the crap out of those the day before she got sick, and now

> won't touch them. I'm wondering if this is what the problem has been

> all along, because when she's never eaten much protein. She does eat

> chicken nuggets, but heck, we all know how little meat is really in

> those. She will on occasion eat some peanut butter, but she's stopped

> eating it, too. She's never really liked milk, either.

>

> Is it possible that Allie's problem all along has been this? I'm about

> to cry sitting here thinking about it. I need to go pray because I'm

> getting a rush of thinking about all the doctors that have seen her

> chronic illness over the years and never even suggested it. But, we

> still don't have a test on it, I'm gonna ask Wed when we see ped.

>

> Debi

>

[Guest guest]

Thanks . Do you know where I could find a list of foods low in

that, particularly proteins? She hardly eats any as it is. Another

question, would the alloisoleucine be in her blood if she's not

consuming the foods? Since we've returned from the hospital she will

not eat any protein foods at all.

Supposed to see her ped in the morning, I'm gonna ask him to do the

testing while we wait on geneticist, unless he can get us in quickly

to see her.

Debi

>

> > Okay, I'm really wondering if Allie has Maple Syrup Urine Disease.

> > I've always noticed her urine smells sweet, like brown sugar to me.

> > I've read about it over the years but figured she wasn't always

> > signficantly sick, like the classic form. BUT, since we've gone off

> > gfcf I've been letting her eat Gerber Meat Sticks. EVERY TIME she eats

> > these I can count on her waking up in the night. I always thought

> > perhaps there was something to do with the milk powder in it. BUT, she

> > was eating the crap out of those the day before she got sick, and now

> > won't touch them. I'm wondering if this is what the problem has been

> > all along, because when she's never eaten much protein. She does eat

> > chicken nuggets, but heck, we all know how little meat is really in

> > those. She will on occasion eat some peanut butter, but she's stopped

> > eating it, too. She's never really liked milk, either.

> >

> > Is it possible that Allie's problem all along has been this? I'm about

> > to cry sitting here thinking about it. I need to go pray because I'm

> > getting a rush of thinking about all the doctors that have seen her

> > chronic illness over the years and never even suggested it. But, we

> > still don't have a test on it, I'm gonna ask Wed when we see ped.

> >

> > Debi

> >

>

[Guest guest]

Debi,

Almost every type of protein contains those branched chain amino

acids, and this is not limited to animal proteins. I would bet

alloisoleucine would still be in her system. Leucine is the one you

really have to watch as far as dietary restrictions. People with MSUD

have to eat a special " formula " and then there are also special foods

that can be prepared or ordered (similar to going GFCF but MUCH

harder to control).

You might find some useful info on this link:

http://www.msud-support.org/resource_dietary.htm

Keep us posted,

> Thanks . Do you know where I could find a list of foods low in

> that, particularly proteins? She hardly eats any as it is. Another

> question, would the alloisoleucine be in her blood if she's not

> consuming the foods? Since we've returned from the hospital she will

> not eat any protein foods at all.

>

> Supposed to see her ped in the morning, I'm gonna ask him to do the

> testing while we wait on geneticist, unless he can get us in quickly

> to see her.

>

> Debi

[Guest guest]

They do test for that at birth, but of course, test can be wrong...I

don't know if can show up later, but if she was born in a hospital

she almost surely had the test done.

Good luck, and I hope you figure out what is wrong.

Amnesty

>

> Okay, I'm really wondering if Allie has Maple Syrup Urine Disease.

> I've always noticed her urine smells sweet, like brown sugar to me.

> I've read about it over the years but figured she wasn't always

> signficantly sick, like the classic form. BUT, since we've gone off

> gfcf I've been letting her eat Gerber Meat Sticks. EVERY TIME she

eats

> these I can count on her waking up in the night. I always thought

> perhaps there was something to do with the milk powder in it. BUT,

she

> was eating the crap out of those the day before she got sick, and

now

> won't touch them. I'm wondering if this is what the problem has been

> all along, because when she's never eaten much protein. She does eat

> chicken nuggets, but heck, we all know how little meat is really in

> those. She will on occasion eat some peanut butter, but she's

stopped

> eating it, too. She's never really liked milk, either.

>

> Is it possible that Allie's problem all along has been this? I'm

about

> to cry sitting here thinking about it. I need to go pray because I'm

> getting a rush of thinking about all the doctors that have seen her

> chronic illness over the years and never even suggested it. But, we

> still don't have a test on it, I'm gonna ask Wed when we see ped.

>

> Debi

>

[Guest guest]

Here in TN they only test for a few of them, I think when she was born

they only tested for PKU and nothing else. Lol, nothing like that

standard of living in TN!

I thought when she was born they tested all that when we had her cord

blood stored. If she ends up testing positive for any disorder, I'm

tempted to pull her blood out of storage and have mercury levels and

metabolic disorder tested, to see if she showed any signs at birth. I

think it would be interesting if it showed at birth there was no problem.

Debi

> >

> > Okay, I'm really wondering if Allie has Maple Syrup Urine Disease.

> > I've always noticed her urine smells sweet, like brown sugar to me.

> > I've read about it over the years but figured she wasn't always

> > signficantly sick, like the classic form. BUT, since we've gone off

> > gfcf I've been letting her eat Gerber Meat Sticks. EVERY TIME she

> eats

> > these I can count on her waking up in the night. I always thought

> > perhaps there was something to do with the milk powder in it. BUT,

> she

> > was eating the crap out of those the day before she got sick, and

> now

> > won't touch them. I'm wondering if this is what the problem has been

> > all along, because when she's never eaten much protein. She does eat

> > chicken nuggets, but heck, we all know how little meat is really in

> > those. She will on occasion eat some peanut butter, but she's

> stopped

> > eating it, too. She's never really liked milk, either.

> >

> > Is it possible that Allie's problem all along has been this? I'm

> about

> > to cry sitting here thinking about it. I need to go pray because I'm

> > getting a rush of thinking about all the doctors that have seen her

> > chronic illness over the years and never even suggested it. But, we

> > still don't have a test on it, I'm gonna ask Wed when we see ped.

> >

> > Debi

> >

>

[Guest guest]

That is odd. I know where my son was born in GA, they tested for what

they called " the basic 7 " metabolic disorders. I know PKU and MSUD

were 2 of them, but I don't know all 7. They do here in CA too,

because I have a friend who's daughter's test came back positive for

one of the 7, I can't remember the name of it, but there are certain

proteins she can't digest. I was under the impression that everyone

got these tests, but there's no telling what can happen in the south,

lol. Good luck...

Amnesty

> > >

> > > Okay, I'm really wondering if Allie has Maple Syrup Urine

Disease.

> > > I've always noticed her urine smells sweet, like brown sugar to

me.

> > > I've read about it over the years but figured she wasn't always

> > > signficantly sick, like the classic form. BUT, since we've gone

off

> > > gfcf I've been letting her eat Gerber Meat Sticks. EVERY TIME

she

> > eats

> > > these I can count on her waking up in the night. I always

thought

> > > perhaps there was something to do with the milk powder in it.

BUT,

> > she

> > > was eating the crap out of those the day before she got sick,

and

> > now

> > > won't touch them. I'm wondering if this is what the problem has

been

> > > all along, because when she's never eaten much protein. She

does eat

> > > chicken nuggets, but heck, we all know how little meat is

really in

> > > those. She will on occasion eat some peanut butter, but she's

> > stopped

> > > eating it, too. She's never really liked milk, either.

> > >

> > > Is it possible that Allie's problem all along has been this?

I'm

> > about

> > > to cry sitting here thinking about it. I need to go pray

because I'm

> > > getting a rush of thinking about all the doctors that have seen

her

> > > chronic illness over the years and never even suggested it.

But, we

> > > still don't have a test on it, I'm gonna ask Wed when we see

ped.

> > >

> > > Debi

> > >

> >

>

[Guest guest]

Debi,

I wonder if she is reacting to the high fluoride levels contained in

the Gerber meat sticks. Deboned chicken products are also high in

fluoride. Fluoride is really hard on the gut! My daughter had

projectile vomitting when she was a baby and it was the fluoride

drops the ped prescribed for her.

Something to consider.

's Mom

>

> Okay, I'm really wondering if Allie has Maple Syrup Urine Disease.

> I've always noticed her urine smells sweet, like brown sugar to me.

> I've read about it over the years but figured she wasn't always

> signficantly sick, like the classic form. BUT, since we've gone off

> gfcf I've been letting her eat Gerber Meat Sticks. EVERY TIME she

eats

> these I can count on her waking up in the night. I always thought

> perhaps there was something to do with the milk powder in it. BUT,

she

> was eating the crap out of those the day before she got sick, and

now

> won't touch them. I'm wondering if this is what the problem has been

> all along, because when she's never eaten much protein. She does eat

> chicken nuggets, but heck, we all know how little meat is really in

> those. She will on occasion eat some peanut butter, but she's

stopped

> eating it, too. She's never really liked milk, either.

>

> Is it possible that Allie's problem all along has been this? I'm

about

> to cry sitting here thinking about it. I need to go pray because I'm

> getting a rush of thinking about all the doctors that have seen her

> chronic illness over the years and never even suggested it. But, we

> still don't have a test on it, I'm gonna ask Wed when we see ped.

>

> Debi

>

[Guest guest]

Not only that but fluoride is a known carcinogen and a potent

neurotoxin. My little brother died at 14 from osteosarcoma, now

known to be a direct result of the high fluoride content of our water

supply. In my opinion he was murdered. Fluoride has no business

being in our water. It's essentially rat poison. I use fluoride

filters and won't let fluoride toothpaste in this house. My

daughter's dentist tried to get me to give her fluoride supplements

when she was a toddler and more recently a fluoride treatment. I

laughed in her face. It's just unbelievable how these myths get

perpetuated.

> Debi,

>

> I wonder if she is reacting to the high fluoride levels contained in

> the Gerber meat sticks. Deboned chicken products are also high in

> fluoride. Fluoride is really hard on the gut! My daughter had

> projectile vomitting when she was a baby and it was the fluoride

> drops the ped prescribed for her.

>

> Something to consider.

>

> 's Mom

[Guest guest]

Hi! -

Please, tell me more about your fluoride filters! Fluoride is about the same

size as a water molecule and boils off at the boiling point of water so it

can't be distilled out. I really would love to know a way to filter this

out.

I am sorry about your brother. What a horrible loss.

It is also shocking how ignorant doctors and dentists are about fluoride.

Makes you wonder what they learned at school besides greed, and scare

tactics.

....

>

> Not only that but fluoride is a known carcinogen and a potent

> neurotoxin. My little brother died at 14 from osteosarcoma, now

> known to be a direct result of the high fluoride content of our water

> supply. In my opinion he was murdered. Fluoride has no business

> being in our water. It's essentially rat poison. I use fluoride

> filters and won't let fluoride toothpaste in this house. My

> daughter's dentist tried to get me to give her fluoride supplements

> when she was a toddler and more recently a fluoride treatment. I

> laughed in her face. It's just unbelievable how these myths get

> perpetuated.

>

>

>

[Guest guest]

Thanks for that info! I'll definitely consider it.

Debi

[Guest guest]

We use a filter that gets out the flouride, too.

Debi