RE: Re: breathing problems, gagging on food, coughing etc??Lea

[Guest guest]

Some things that HAVE worked from my

feeding therapist include bigger noodles- like penne, because with the low tone

she needs to FEEL it , or have more feedback in her mouth. Food that is smooth

or slippery my daughter does not like because it doesn’t give her enough

feedback. Toast, crunchy foods or bigger pieces of things work well. Just a

thought in case no one has mentioned it to you. Thanks for your input, at least

I don’t feel so alone with this issue.

From: ndstarzl

Sent: Monday, April 04, 2005 12:53

PM

To: Mito

Subject: Re: breathing problems, gagging on

food, coughing etc??

Well I keep trying to respond but for some reason

my message keeps

dissappearing?? I'm going to try this again.

First off, my Lea has complex one and no body has

ever mentioned to

me about milk protein. Even when we saw a

dietician at Mayo- she

told us that we could keep her diet about the same

as what our other

(healthy) kids eat?? Cow's milk has been a staple

for Lea ever since

she weaned from nursing -- plus we use the dairy

proteins because

they are also so full of fat.....

I can relate about the eating issues. Lea goes

through times where

she chokes and gags on foods when she is tired, or

when recovering

from an illness. Right now we are struggling with

what to feed her,

after a long winter full of one illness right

after another, she

seems to be choking and gagging on even the most

smooth food items.

Although she normally is not one to demand to be

fed, right now her

appetite is even lower then

" normal " . We are lucky if we can get

even a few bites in before she turns away and

closes her lips tight.

Ironically though, when I had her in to see the

ped last week she

had gained 2 pounds in 4 weeks! How can that be

possible if she is

not eating or drinking much? Someone suggested

that she isn't

burning calories like normal since she is weak...

but I don't agree.

While her eating and other fine motor skills are

weak, her gross

motor seems ok. She still gets around the house by

scooting on her

butt and is cruising furniture and stuff. So why

the sudden gain?

le and 2yo Lea, partial complex 1

and 6 other very healthy kiddos!

> I thought milk protein was contraindicated

for folks with Complex

1 issues? I would take her off of the milk and see

if her

croup/cough, etc. improves. None of mine can

handle liquid milk or

ice cream at all- 2 can have a yogurt every now

& then. My most

affected has no casein ( milk protein ) in his

diet at all.

> Cindy-GA

> breathing problems, gagging on food,

coughing

etc??

>

>

> I have read a few things here

lately that have made me curious.

When my three year old is tired- she seems to gag

on food more. Has

been doing it a lot lately and refusing to eat.

She has always been

a challenge to feed. What is the tie in with mito and why have I

read kids have been orally fed and then gone to

tube fed. Is it just

because of poor weight- nutrition etc? Zoe drinks

a lot of milk and

is at a very healthy weight, but this seems to

happen more.

>

>

>

> I recently had some prelim labs

on my 4 year old, by a local

peds, local lab, not a mito doc. Her coQ10 was abnormally low by a

few points. She gets croup a lot and

complains of fatigue. Now she

seems to cough when she is tired as well and has

also been gagging

on food a bit now and then. So here is the

question moms- am I being

overly suspicious, what does this all mean? Any

similar experiences..

>

>

>

> I think I am going to take the 4

year old for labs at the Clev.

Clinic when I take my 3 year old next month. But

wanted to get some

other opinions on the specific things I am

seeing..

>

>

>

> Suzanne in AZ, mom to Zoe,

complex 1-

>

>

>

>

>

> Please contact

mito-owner with any problems or

questions.

>

>

>

>

-------------------------------------------------------------------

-----------

>

[Guest guest]

Some things that HAVE worked from my

feeding therapist include bigger noodles- like penne, because with the low tone

she needs to FEEL it , or have more feedback in her mouth. Food that is smooth

or slippery my daughter does not like because it doesn’t give her enough

feedback. Toast, crunchy foods or bigger pieces of things work well. Just a

thought in case no one has mentioned it to you. Thanks for your input, at least

I don’t feel so alone with this issue.

From: ndstarzl

Sent: Monday, April 04, 2005 12:53

PM

To: Mito

Subject: Re: breathing problems, gagging on

food, coughing etc??

Well I keep trying to respond but for some reason

my message keeps

dissappearing?? I'm going to try this again.

First off, my Lea has complex one and no body has

ever mentioned to

me about milk protein. Even when we saw a

dietician at Mayo- she

told us that we could keep her diet about the same

as what our other

(healthy) kids eat?? Cow's milk has been a staple

for Lea ever since

she weaned from nursing -- plus we use the dairy

proteins because

they are also so full of fat.....

I can relate about the eating issues. Lea goes

through times where

she chokes and gags on foods when she is tired, or

when recovering

from an illness. Right now we are struggling with

what to feed her,

after a long winter full of one illness right

after another, she

seems to be choking and gagging on even the most

smooth food items.

Although she normally is not one to demand to be

fed, right now her

appetite is even lower then

" normal " . We are lucky if we can get

even a few bites in before she turns away and

closes her lips tight.

Ironically though, when I had her in to see the

ped last week she

had gained 2 pounds in 4 weeks! How can that be

possible if she is

not eating or drinking much? Someone suggested

that she isn't

burning calories like normal since she is weak...

but I don't agree.

While her eating and other fine motor skills are

weak, her gross

motor seems ok. She still gets around the house by

scooting on her

butt and is cruising furniture and stuff. So why

the sudden gain?

le and 2yo Lea, partial complex 1

and 6 other very healthy kiddos!

> I thought milk protein was contraindicated

for folks with Complex

1 issues? I would take her off of the milk and see

if her

croup/cough, etc. improves. None of mine can

handle liquid milk or

ice cream at all- 2 can have a yogurt every now

& then. My most

affected has no casein ( milk protein ) in his

diet at all.

> Cindy-GA

> breathing problems, gagging on food,

coughing

etc??

>

>

> I have read a few things here

lately that have made me curious.

When my three year old is tired- she seems to gag

on food more. Has

been doing it a lot lately and refusing to eat.

She has always been

a challenge to feed. What is the tie in with mito and why have I

read kids have been orally fed and then gone to

tube fed. Is it just

because of poor weight- nutrition etc? Zoe drinks

a lot of milk and

is at a very healthy weight, but this seems to

happen more.

>

>

>

> I recently had some prelim labs

on my 4 year old, by a local

peds, local lab, not a mito doc. Her coQ10 was abnormally low by a

few points. She gets croup a lot and

complains of fatigue. Now she

seems to cough when she is tired as well and has

also been gagging

on food a bit now and then. So here is the

question moms- am I being

overly suspicious, what does this all mean? Any

similar experiences..

>

>

>

> I think I am going to take the 4

year old for labs at the Clev.

Clinic when I take my 3 year old next month. But

wanted to get some

other opinions on the specific things I am

seeing..

>

>

>

> Suzanne in AZ, mom to Zoe,

complex 1-

>

>

>

>

>

> Please contact

mito-owner with any problems or

questions.

>

>

>

>

-------------------------------------------------------------------

-----------

>

[Guest guest]

If yo have not done so already, you might consider giving Lea some Pediasure. It is a good supplement. I am sure you have tried the yoghourt smoothie route.

We find the same with Max. Much more choking and gagging when she is sick or getting sick.

hope this helps

rosy, mom to max, 5 going on 6