breathing problems, gagging on food, coughing etc??

[Guest guest]

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-

[Guest guest]

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]

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.

>

>

>

> -------------------------------------------------------------------

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>

[Guest guest]

Galactosemia, which is suspected by the presence of reducing substances in the urine, is treated by elimination of galactose and lactose (glucose + galactose) from the diet.

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hyperammonemia/high amnonia levels

Dietary management may consist of limiting the amount of protein from natural foods and using Mead PFD-1 or PFD-2 to provide calories, vitamins, and minerals. Some patients will self-treat by avoiding foods high in protein, such as milk and meats. Occasionally more extreme interventions may be required to control hyperammonemia at the time of diagnosis, such as dialysis and/or intravenous administration of combined sodium benzoate and sodium phenylacetate and L-arginine. After the acute hyperammonemia is in control, most late-onset patients will require continued use of enteral sodium phenylbutyrate and L-citrulline or L-arginine for control of ammonia levels. Patients with mild forms of argininosuccinic aciduria will usually require only L-arginine supplements. In general, monitoring of individuals with late-onset forms of the disorders is the same as for those with neonatal forms, except at less frequent intervals.

[Guest guest]

Hi, My son has always gagged on food and refluxed (sometimes coughs instead of actually vomitting) much more when stressed by any kind of viral illness like a minor cold. I really don't know why . . . . . I remember panicking about it when he was a baby--I thought he was losing his swallowing reflex and regressing. Now I just know it's part of the whole mito thing. I don't really know why. As far as NG or other tube feedings, it was considered at one point for my son because he was not gaining well. That has since resolved and he continues to eat well and gain at a consistent pace---at the bottom ot the curve but proportionate.

Lori and (5 1/2, complex I and IV, MR, non-walker/non talker so far, reflux, very lovable and happy!)

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.

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[Guest guest]

In some situations the gagging could be caused by low muscle tone in the back of her mouth. This is also what causes alot of Gracies speech difficulties.

Grace got her g tube for a few various reasons. At the time it was put in, she was not eating well and loosing weight. Her problem was caused because she was taking so much medication, that eventually everything she ate and drank had something in it. We also had to add MCT oil to her foods, wich made everything greasy. We did the g tube so we could give her medications through it and hopefully she would begin to eat again. Thankfully it worked well. We do not use the g tube anymore for medications, since she has been able to get off alot of them, but it is still there for hydration purposes.

Hope this is some help

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[Guest guest]

Like others on the group, we have dealt with the swallowing issues.

Asenath did what you are seeing and it never made her lose ability

permanently, just went up and down in severity according to how she was

feeling. When ill or stressed/tired, she would gag and cough and have

problems and then as time went on, she would regain the skills of swallowing

properly again. We still see the issues once in a while, but not as

frequently as when she was younger. On the other hand, Zipporrah had much

more difficulty. Her swallow problems resulted from strokes and caused

tongue weakness, inability to cup the tongue, cheek and throat muscle

weakness, tracheomalacia, and other issues. All of these caused her to

aspirate easily and not be able to suck from a bottle, nurse well, or eat

orally until just the past 2-3 months. You definitely want to be very

cautious with what you give your child if they are showing signs of swallow

issues as aspiration causes pneumonia and choking is much more common as

well in children having swallowing problems. I have been advised by our

therapists to change Zipporrah's (and Asenath) diet daily according to how

they do. If I give her a sipper cup and she starts to cough or gag, I take

it away and either use a thickener or just increase her tube feedings. Same

with food. We chop food smaller, don't do any chunks, or avoid to much

texture when she struggles more. There is a positive we have seen! In the

past couple months, Zipporrah has amazed us with her increased ability to

eat orally. We wondered if she ever would be able to and now we can give

her so many different foods and are working on getting her to eat more

rather than just " snack. " Hope you are able to figure out what is going on

with your child. You may want to ask for a swallow study WITH an OT present

or speak to a GI about it to be on the safe side, although, even if the test

shows your child is ok, she still may have issues because fatigue, illness,

or stress can cause her to be worse at a different time than when she is

tested, so that is why it is important to really discuss what you are seeing

and WHEN you are seeing it with the docs.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

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-

>

>

>

>