Re: feeding problems can anyone help??

[Guest guest]

In a message dated 8/28/01 7:18:13 AM Pacific Daylight Time,

drizzt1199@... writes:

<< When he eats anything lumpy he gags. He cannot chew. Second during the day

he

tries to put his hands down his throat to gag himself and sometimes he

vomits

forcefully. He also coughs a lot. >>

Has he been scoped to check for esophagitis from reflux (GERD)? When

first had esophagitis, he did the same things...gagging, coughing, etc.

Dena

[Guest guest]

In a message dated 8/28/2001 10:57:20 AM Central Daylight Time,

waislandgirl@... writes:

<< << When he eats anything lumpy he gags. He cannot chew. Second during the

day

he

tries to put his hands down his throat to gag himself and sometimes he

vomits

forcefully. He also coughs a lot. >>

Has he been scoped to check for esophagitis from reflux (GERD)? When

first had esophagitis, he did the same things...gagging, coughing, etc.

Dena

>>

Hi Dena!

Thank you for replying has not been checked yet for GERD I was

thinking it could be Gerd too. Your child did the same thing? Is it a probe

test? Thank you

Angel

[Guest guest]

>Hi My friend's son has episodes of choking and gagging.

>When he eats anything lumpy he gags. He cannot chew. Second during the day he

>tries to put his hands down his throat to gag himself and sometimes he vomits

>forcefully. He also coughs a lot.

This is so timely! lies, Complex I, III Defects is doing exactly the

same thing. Our GI doc just gave me grief saying this was so unlikely. It

seems kids are only supposed to choke on liquids not solids. We have a

swallow study scheduled. lies is even choking on solid chuncks in

things like cream soups.

lies' case managing doc said he thinks it is a direct result of the

muscles not working properly and the symptoms didn't surprise him at all.

Now to convince the GI doc and devise a management plan before she

aspirates something.We are talking about either a liquid only diet or

pureed foods only. Of course, our 16 yuear old isn't thrilled with the

idea. I suspect her problem is twofold. She doesn't chew properly and the

mucles can't handle the solids. Plus, she can no longer cut food into

relatively small pieces compounding the problem.

Joanne Kocourek

The University of Chicago

jskocour@...

[Guest guest]

In a message dated 8/28/01 2:30:24 PM Pacific Daylight Time,

drizzt1199@... writes:

<< has not been checked yet for GERD I was

thinking it could be Gerd too. Your child did the same thing? Is it a probe

test? Thank you >>

To actually check if there is esophagitis " damage " (which can be reversed

with medication), an endoscopy (scope) is done. It's an outpatient

procedure, small biopsies are taken, and the results are back within a week.

But, yes, did the exact same thing when he was a toddler.

The pH probe will show if GERD is happening, but it does not show if

esophagitis exists. Only the scope/biopsies can show if the

esophagus/stomach is irritated/inflammed.

Dena (mom to 4 children with GERD, 3 with fundoplication surgery for same,

and possible mito)

Dena

[Guest guest]

Hi! We were just out to the Autism Conv. in State College, PA earlier this month and one of the seminars I attended dealt with feeding issues. The speaker runs a feeding clinic and was excellent!!! One of the main things she addressed was difficulties with mixed-textured foods,ie: Gerber Stage3, etc... She said this is the most difficult type of food to eat/learn to eat. When a child feels the puree or liquid in his mouth, the first natural instinct is to slurp/suck it straight back where it hits the epiglotis and gags or even lodges in the back of the throat causing coughing, choking, gagging, etc.... The child needs to be able to move the chunks from the middle front of the mouth by lateral tongue movement to the side of the mouth where it is chewed then moved to the back for swallowing. This a learned process which some kids (especially those with low-muscle tone, postural stability problems) have trouble with/take longer to master. If you want more indepth info. contact me and I will get you the exact name and contact info. plus access to the forms.

Davena(mom to Wyatt,3yo.,suspected ComplexI Def., hypotonia, PDD-NOS,etc andDavena Kay, almost 7,undergoing testing for poss. mito symp.)

davenalee@...

Re: feeding problems can anyone help??

>Hi My friend's son has episodes of choking and gagging.>When he eats anything lumpy he gags. He cannot chew. Second during the day he>tries to put his hands down his throat to gag himself and sometimes he vomits>forcefully. He also coughs a lot.This is so timely! lies, Complex I, III Defects is doing exactly thesame thing. Our GI doc just gave me grief saying this was so unlikely. Itseems kids are only supposed to choke on liquids not solids. We have aswallow study scheduled. lies is even choking on solid chuncks inthings like cream soups.lies' case managing doc said he thinks it is a direct result of themuscles not working properly and the symptoms didn't surprise him at all.Now to convince the GI doc and devise a management plan before sheaspirates something.We are talking about either a liquid only diet orpureed foods only. Of course, our 16 yuear old isn't thrilled with theidea. I suspect her problem is twofold. She doesn't chew properly and themucles can't handle the solids. Plus, she can no longer cut food intorelatively small pieces compounding the problem.Joanne KocourekThe University of Chicagojskocour@...Please contact mito-owner with any problems or questions.

[Guest guest]

Maybe it is a sensory issue as well. My daughter did the same thing. She

wouldn't eat anything unless it was mushy, not even mashed potatoes. She

has improved so much since we worked on the sensory issues with her OT but

occasionally does still choke. I used the brushing protocol for months and

what a difference in her. She was also placed on Prilosec finally and

that helped with the choking on liquids. Hope this helps and if you have

any questions regarding the sensory stuff, please ask.

cathy, mom to Mackenzie 2yo

feeding problems can anyone help??

> Hi My friend's son has episodes of choking and gagging.

> When he eats anything lumpy he gags. He cannot chew. Second during the day

he

> tries to put his hands down his throat to gag himself and sometimes he

vomits

> forcefully. He also coughs a lot. They did a swallow test with 4 bites of

> food and of course it went down fine and the Dr. read the test as normal.

> The gagging has been going on for 6 weeks. It scares my friend and I am

> scared for her. I think there is something wrong maybe with the valve in

his

> throat. They will have to make a trip to s Hopkins. is 19

months

> old. He has Marfan syndrome (connective tissue disorder low tone vision,

> heart and feeding problems) it is not a mito but something like it. I know

a

> lot of children on this board has troubles with feeding. (My son is being

> tested right now for mito but I read all of the posts and thought you

could

> help)

> Thank you so much for any info.

> Angel Millman mom to Isaac 21 months old hypotonia

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Angel,

This is very typical of a child sufferring gastro esophageal reflux Suggest to your friend to have this avenue looked into carefully

ne

(in Australia). Mum to Gaby 6 years, mito disorder, ketogenic diet, G Tube, microcephaly, global delays, and the prettiest smile.

-----Original Message-----From: drizzt1199@... Sent: Tuesday, 28 August 2001 11:00To: Mito Subject: feeding problems can anyone help??Hi My friend's son has episodes of choking and gagging.When he eats anything lumpy he gags. He cannot chew. Second during the day he tries to put his hands down his throat to gag himself and sometimes he vomits forcefully. He also coughs a lot. They did a swallow test with 4 bites of food and of course it went down fine and the Dr. read the test as normal. The gagging has been going on for 6 weeks. It scares my friend and I am scared for her. I think there is something wrong maybe with the valve in his throat. They will have to make a trip to s Hopkins. is 19 months old. He has Marfan syndrome (connective tissue disorder low tone vision, heart and feeding problems) it is not a mito but something like it. I know a lot of children on this board has troubles with feeding. (My son is being tested right now for mito but I read all of the posts and thought you could help)Thank you so much for any info.Angel Millman mom to Isaac 21 months old hypotoniaPlease contact mito-owner with any problems or questions.

[Guest guest]

Davena,

I was wondering where you are from. I am noticed you mentioned State College. I am in NE PA and my daughter did do a feeding clinic ( unsuccessfully) in Hershey, PA. I am curious to hear where this dr was from.

Re: feeding problems can anyone help??

>Hi My friend's son has episodes of choking and gagging.>When he eats anything lumpy he gags. He cannot chew. Second during the day he>tries to put his hands down his throat to gag himself and sometimes he vomits>forcefully. He also coughs a lot.This is so timely! lies, Complex I, III Defects is doing exactly thesame thing. Our GI doc just gave me grief saying this was so unlikely. Itseems kids are only supposed to choke on liquids not solids. We have aswallow study scheduled. lies is even choking on solid chuncks inthings like cream soups.lies' case managing doc said he thinks it is a direct result of themuscles not working properly and the symptoms didn't surprise him at all.Now to convince the GI doc and devise a management plan before sheaspirates something.We are talking about either a liquid only diet orpureed foods only. Of course, our 16 yuear old isn't thrilled with theidea. I suspect her problem is twofold. She doesn't chew properly and themucles can't handle the solids. Plus, she can no longer cut food intorelatively small pieces compounding the problem.Joanne KocourekThe University of Chicagojskocour@...Please contact mito-owner with any problems or questions.

[Guest guest]

~

hi!!! Sorry, the clinic did not go well, hopefully this can be solved soon, for you. As to where we live: we are also in NE PA, Mildred, Sullivan CO. We are about 25-40 miles from anything of any major convenience. But~ it is beautiful country and the people are different from "city-folk" or as some oldtimers here call them-"Flatlanders"

I have to run now, but when I return, I will look-up that info for you.

Davena

Re: feeding problems can anyone help??

>Hi My friend's son has episodes of choking and gagging.>When he eats anything lumpy he gags. He cannot chew. Second during the day he>tries to put his hands down his throat to gag himself and sometimes he vomits>forcefully. He also coughs a lot.This is so timely! lies, Complex I, III Defects is doing exactly thesame thing. Our GI doc just gave me grief saying this was so unlikely. Itseems kids are only supposed to choke on liquids not solids. We have aswallow study scheduled. lies is even choking on solid chuncks inthings like cream soups.lies' case managing doc said he thinks it is a direct result of themuscles not working properly and the symptoms didn't surprise him at all.Now to convince the GI doc and devise a management plan before sheaspirates something.We are talking about either a liquid only diet orpureed foods only. Of course, our 16 yuear old isn't thrilled with theidea. I suspect her problem is twofold. She doesn't chew properly and themucles can't handle the solids. Plus, she can no longer cut food intorelatively small pieces compounding the problem.Joanne KocourekThe University of Chicagojskocour@...Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Davena,

I am in Berwick. I am not sure where Mildred is. Where do you go for care and where did he get his diagnosis?

Thanks,

Re: feeding problems can anyone help??

>Hi My friend's son has episodes of choking and gagging.>When he eats anything lumpy he gags. He cannot chew. Second during the day he>tries to put his hands down his throat to gag himself and sometimes he vomits>forcefully. He also coughs a lot.This is so timely! lies, Complex I, III Defects is doing exactly thesame thing. Our GI doc just gave me grief saying this was so unlikely. Itseems kids are only supposed to choke on liquids not solids. We have aswallow study scheduled. lies is even choking on solid chuncks inthings like cream soups.lies' case managing doc said he thinks it is a direct result of themuscles not working properly and the symptoms didn't surprise him at all.Now to convince the GI doc and devise a management plan before sheaspirates something.We are talking about either a liquid only diet orpureed foods only. Of course, our 16 yuear old isn't thrilled with theidea. I suspect her problem is twofold. She doesn't chew properly and themucles can't handle the solids. Plus, she can no longer cut food intorelatively small pieces compounding the problem.Joanne KocourekThe University of Chicagojskocour@...Please contact mito-owner with any problems or questions.

[Guest guest]

NO WAY!!!!! I am from Berwick originally(GO Bulldogs!) In fact, we just moved back here from there on Dec.18th. My parents still live there(Market St.)and my brother lives not far from the Shickshinny St. Police barracks.

We will be in Danville at Geisingser on Fri. and in the Berwick area on Sat. for a family picnic. I get to town a couple of times a month or so; we DEFINITELY should get together sometime!

Sullivan County:AKA---Pennsylvania's Ice-Box, up over Red Rock Mountain. Out in the boonies. Only 6,100 year round residents in the whole county, one traffic light(whole county), one non-supportive school district. The flatlanders drove the price of land so high that those living here cannot afford to buy here and they have to go out of county for jobs, other than those who work for the school district or the state.

Did I mention it is Beautiful here!!!!!????

Looking forward to hearing back from you,

Davena

Re: feeding problems can anyone help??

>Hi My friend's son has episodes of choking and gagging.>When he eats anything lumpy he gags. He cannot chew. Second during the day he>tries to put his hands down his throat to gag himself and sometimes he vomits>forcefully. He also coughs a lot.This is so timely! lies, Complex I, III Defects is doing exactly thesame thing. Our GI doc just gave me grief saying this was so unlikely. Itseems kids are only supposed to choke on liquids not solids. We have aswallow study scheduled. lies is even choking on solid chuncks inthings like cream soups.lies' case managing doc said he thinks it is a direct result of themuscles not working properly and the symptoms didn't surprise him at all.Now to convince the GI doc and devise a management plan before sheaspirates something.We are talking about either a liquid only diet orpureed foods only. Of course, our 16 yuear old isn't thrilled with theidea. I suspect her problem is twofold. She doesn't chew properly and themucles can't handle the solids. Plus, she can no longer cut food intorelatively small pieces compounding the problem.Joanne KocourekThe University of Chicagojskocour@...Please contact mito-owner with any problems or questions.