Re: charge children and swallowing

[Guest guest]

Janet,

For any change that affects a child as significantly as you are mentioning,

it is very important to consult with a doctor immediately. You want to be

sure your child is receiving adequate nutrition and is adequately hydrated.

I would call the pediatrician and express your concern and ask for

tests. The ENT may be necessary to check on the swallowing. Perhaps a GI

doctor will be necessary. But, don't wait as your child needs this

resolved very quickly. First and most important step: call the

doctor. Persist until you are satisfied with the answers. If tests are

suggested, ask this list for information on those tests if you would like

as there is lots of experience with a huge variety of tests.

My daughter often won't swallow when she has a strep infection. That may

or may not be the case now for you, but checking with the doctor will give

you all peace of mind. Some sensory issues may also be associated with some

difficulties with gagging.

Mom to Kendra, and Camille

At 08:55 AM 6/22/01 -0700, you wrote:

>Could someone please advise on children with charge

>and

>swallowing or gagging and thinking they are going to

>vomit. Secretions from the back of the throat have

>always been a problem for my child but in the last

>month she had stopped eating for fear that she will

>vomit. I am really concerned that she may have

>something major going on in the GI tract but need to

>know from other charge parents the first step and the

>best step to take in this matter.

[Guest guest]

Hi Janet: How old is your child? I'll list some of the related

problems in CHARGE with swallow and gagging. Normally cranial nerve

involvement (affects swallow amoung other things) common but can be

compromised with other issues. The choanal atresia can return in some

cases. Hiatus hernia (stomach moves up through the hole in the bottom of

the diaphram causing more heart burn, reflux, chest pain.) Could be ear

infections causing lack of air pressure in eustatian tube, somewhat

involved in the swallow. Aspirated food to lungs. Latex allergy (it

gets more severe with greater exposure, and in unsuspected food during

preparation, milk bags, restaurants using latex gloves, lots of places);

and milk or protein allergies had caused an increase in mucous

production and choking/gagging. Delayed stomach emptying, (sometimes

neurological, sometimes atresia) digestion and absorption problems also

cause more reflux. (especially after long period antibiotic use) Most

serious, Coartication of the aeorta of the heart, (sometimes difficult

to find by Dr.'s)--more common in CHARGE then we thought. As the child

grows it starts to choke off the eosophagus, some even have the artery

looped around it. Also, there has been a case that we know where a

trachia eosophagia fistula developed at age 12, very uncommon (a whole

between the windpipe and eosophoas.)

ANN GLOYN, Deafblind Specialist

Janet wrote:

> Could someone please advise on children with charge

> and

> swallowing or gagging and thinking they are going to

> vomit. Secretions from the back of the throat have

> always been a problem for my child but in the last

> month she had stopped eating for fear that she will

> vomit.

[Guest guest]

Ann,

My daughter just turned 13 at the end of May. She was

born with Choanal Atresia which was repaired at birth.

We have had two episodes once when she little she

choked on a strawberry at daycare. They had to perform

the heimlich on her and she was in a brace for back.

We

presumed this was not anything serious at the time but

she has never been one to vomit alot and she doesn't

have a trach or anything. She has suffered from

chronic

sinus drainage all of her life. But a little over a

month ago she started saying that she was feeling like

she was going to vomit. She will refuse to eat if she

gets this feeling. We were at a conference about a

month ago and she got choked on a piece of candy and I

had to perform the heimlich on her there and since

then

she has been on antibiotics for her sinuses but I

still

feel that there is something major wrong. She can't

stand for a doctor to come at her with a tongue

depressor. She completely freaks out. She cannot let

them look down her throat. We also found out several

years ago that she has malrotated intestines and that

was found because we were performing a barium enema to

find out what was causing her to have more frequent

episodes of potty accidents. She had a PDA and ASD

which the PDA has been repaired and supposedly the ASD

closed on its own. Alot of other problems and

surgeries

as well. She suffers from OCD, Tourettes spectrum and

that is also hard to deal with. In the last two months

she has complained alot about heartburn and she does

have alot of indigestion. Please feel free to update

me

on anything else or ideas or suggestions. I would

greatly appreciate it.

Thanks ,

Janet

--- Ann Gloyn wrote:

> Hi Janet: How old is your child? I'll list some of

> the related

> problems in CHARGE with swallow and gagging.

> Normally cranial nerve

> involvement (affects swallow amoung other things)

> common but can be

> compromised with other issues. The choanal atresia

> can return in some

> cases. Hiatus hernia (stomach moves up through the

> hole in the bottom of

> the diaphram causing more heart burn, reflux, chest

> pain.) Could be ear

> infections causing lack of air pressure in

> eustatian tube, somewhat

> involved in the swallow. Aspirated food to lungs.

> Latex allergy (it

> gets more severe with greater exposure, and in

> unsuspected food during

> preparation, milk bags, restaurants using latex

> gloves, lots of places);

> and milk or protein allergies had caused an increase

> in mucous

> production and choking/gagging. Delayed stomach

> emptying, (sometimes

> neurological, sometimes atresia) digestion and

> absorption problems also

> cause more reflux. (especially after long period

> antibiotic use) Most

> serious, Coartication of the aeorta of the heart,

> (sometimes difficult

> to find by Dr.'s)--more common in CHARGE then we

> thought. As the child

> grows it starts to choke off the eosophagus, some

> even have the artery

> looped around it. Also, there has been a case that

> we know where a

> trachia eosophagia fistula developed at age 12, very

> uncommon (a whole

> between the windpipe and eosophoas.)

> ANN GLOYN, Deafblind Specialist

>

> Janet wrote:

>

> > Could someone please advise on children with

> charge

> > and

> > swallowing or gagging and thinking they are going

> to

> > vomit. Secretions from the back of the throat have

> > always been a problem for my child but in the last

> > month she had stopped eating for fear that she

> will

> > vomit.

>

>

>

__________________________________________________

[Guest guest]

Janet,

About three months ago Patty who is 16 was having some problems. In the past

she has had little feeding problems compared to everyone else. She had the

coanal atresia and reflux as a baby. She also has Tourettes... About three

months ago she complained she felt like she would vomit all the time,

especially in the morning. At first I didn't know to believe her or not.

Nothing made sense. Then she stopped eating hard foods, went basically on a

soft diet unless I forced her. Then one day she actually did vomit. She

just stood there and said " I have to vomit, " and did. Since she hadn't

vomited in many, many years, even when ill, I took her to the doctor again.

They couldn't find anything at all. She did loose some weight but not too

much. She was also going pale and was quite cranky. We don't know why this

happened and it slowly went away. She still can't eat first thing in the

morning and when she does she says she can't eat cereal or toast. She says

it is too hard to swallow and makes her ill.

I don't know what to tell you. Actually, I hope you find the answer

because we never got one. It finally did slowly go away. I sure hope you

find out what is going on. Maybe doctors will listen to you.

Bonnie, Mom to Patty CHARGE 16, Kris 18, and wife to

[Guest guest]

What do you mean by " silent reflux " ? I've never heard that term.

Jourdan's biggest problem right now is mucus and secretions in her nose and

throat. If not for that I think we would be doing good. Kelley has a

suction machine at home and uses it several times during the day. Jourdan is

also sleeping with a cool-air humidifier. Can anyone tell me where all the

extra secretions come from and how long this will last?

I baby-sat with Jourdan yesterday for the first time at home. I was a

little reluctant at first because of no backup. There is no nurse to call

like at the hospital. But I managed fine and Kelley got to go out to run

some errands. Kelley's Mom will also stay with the baby so Kelley gets a

chance to get out of the house now and then. Jourdan is so lucky to have her

for a Mom as she seems to be on top of everything with the suctioning and

wound care. I don't know if I mentioned that Kelley is a nurse although she

has no experience with infants. (The heart surgery incision is finally

almost healed and the gtube site is doing well.)

We are waiting patiently for the smiles to return. Since the gtube

surgery, we can't get Jourdan to smile very much. Between the congestion

problems and gas, she just doesn't seem to be a happy camper. BUT yesterday

Kelley did get one genuine smile (not in her sleep), and today another, so

maybe she is feeling better and getting back to herself. We hope so. We

miss the smiles.

Lynn (grandmother to Jourdan 3months-Possible

Charge)

[Guest guest]

Janet,

Do you know if your child has an aberrant subclavian artery that might be

around the esophagus? What type of heart defects does your child have?It's

also called a vascular ring.

My daughter Jillian has this and they wanted to sever the artery but we

decided to wait and see as she grows if it tightens. If it tightens and she

can no longer swallow, then we will do surgery. but as for now, we don't

want to put her through a surgery because MAYBE it will cause a problem in

the future.

Her first year of life was choking, gagging, etc, and they thought it was

the artery around the esophagus was unable to handle the mucus and it was

spilling over into her trachea, vut at about 1 year, all the gagging and

choking stopped so we wrote it off as " silent reflux " and never had the

surgery. Glad we didn't !!!!!!!

Foley, Mom to 5 1/2, ( CHARGE in heaven) and Jillian 3

cHaRGE

charge children and swallowing

> Could someone please advise on children with charge

> and

> swallowing or gagging and thinking they are going to

> vomit. Secretions from the back of the throat have

> always been a problem for my child but in the last

> month she had stopped eating for fear that she will

> vomit. I am really concerned that she may have

> something major going on in the GI tract but need to

> know from other charge parents the first step and the

> best step to take in this matter. Also, she does not

> have a trach or anything. She did have choanal atresia

> at birth which has been repaired and alot of the

> secretions that she has I felt may be why she is

> gagging alot. But, at a recent conference she

> participated in she got choked on a piece of candy and

> I had to perform the heimlich on her. I am worried

> sick and I want the fastest service I can get for her.

> Please respond to me with any suggestions you may

> have.

>

>

> __________________________________________________

>

[Guest guest]

We used a humidifier with my son because our

nurse told us to buy one to loosen his secretions.

Well, he went the other way and had so much secretions

that his lungs got congested. And everytime we had to

take him to the emergency room. There is also a

bacteria issue with those things as well, spreads

germs really easy. Since we threw it out, he's still

had some problems but not near as much as with the

humidifier. We have to chest pt him all the time.

Ken

--- RSFARMS@... wrote:

>

> What do you mean by " silent reflux " ? I've never

> heard that term.

> Jourdan's biggest problem right now is mucus and

> secretions in her nose and

> throat. If not for that I think we would be doing

> good. Kelley has a

> suction machine at home and uses it several times

> during the day. Jourdan is

> also sleeping with a cool-air humidifier. Can

> anyone tell me where all the

> extra secretions come from and how long this will

> last?

> I baby-sat with Jourdan yesterday for the first

> time at home. I was a

> little reluctant at first because of no backup.

> There is no nurse to call

> like at the hospital. But I managed fine and Kelley

> got to go out to run

> some errands. Kelley's Mom will also stay with the

> baby so Kelley gets a

> chance to get out of the house now and then.

> Jourdan is so lucky to have her

> for a Mom as she seems to be on top of everything

> with the suctioning and

> wound care. I don't know if I mentioned that Kelley

> is a nurse although she

> has no experience with infants. (The heart surgery

> incision is finally

> almost healed and the gtube site is doing well.)

> We are waiting patiently for the smiles to

> return. Since the gtube

> surgery, we can't get Jourdan to smile very much.

> Between the congestion

> problems and gas, she just doesn't seem to be a

> happy camper. BUT yesterday

> Kelley did get one genuine smile (not in her sleep),

> and today another, so

> maybe she is feeling better and getting back to

> herself. We hope so. We

> miss the smiles.

> Lynn (grandmother to

> Jourdan 3months-Possible

> Charge)

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Ken--

Same here with Josh. We tried the humidifier thing--Ended up with a massive

infection and hospitalization.

Iris

[Guest guest]

Hi Janet,

Sounds on the face of it as if your daughter may have severe reflux which

certsainly affects the desire and capacity to eat. I'd get her looked at at

once as this is controllable but potentailly very damaging and unpleasant if

let go.

Cheers,

Marea Howe

Re: charge children and swallowing

>Ann,

>My daughter just turned 13 at the end of May. She was

>born with Choanal Atresia which was repaired at birth.

>We have had two episodes once when she little she

>choked on a strawberry at daycare. They had to perform

>the heimlich on her and she was in a brace for back.

>We

>presumed this was not anything serious at the time but

>she has never been one to vomit alot and she doesn't

>have a trach or anything. She has suffered from

>chronic

>sinus drainage all of her life. But a little over a

>month ago she started saying that she was feeling like

>she was going to vomit. She will refuse to eat if she

>gets this feeling. We were at a conference about a

>month ago and she got choked on a piece of candy and I

>had to perform the heimlich on her there and since

>then

>she has been on antibiotics for her sinuses but I

>still

>feel that there is something major wrong. She can't

>stand for a doctor to come at her with a tongue

>depressor. She completely freaks out. She cannot let

>them look down her throat. We also found out several

>years ago that she has malrotated intestines and that

>was found because we were performing a barium enema to

>find out what was causing her to have more frequent

>episodes of potty accidents. She had a PDA and ASD

>which the PDA has been repaired and supposedly the ASD

>closed on its own. Alot of other problems and

>surgeries

>as well. She suffers from OCD, Tourettes spectrum and

>that is also hard to deal with. In the last two months

>she has complained alot about heartburn and she does

>have alot of indigestion. Please feel free to update

>me

>on anything else or ideas or suggestions. I would

>greatly appreciate it.

>

>Thanks ,

>

>Janet

>

>--- Ann Gloyn wrote:

>> Hi Janet: How old is your child? I'll list some of

>> the related

>> problems in CHARGE with swallow and gagging.

>> Normally cranial nerve

>> involvement (affects swallow amoung other things)

>> common but can be

>> compromised with other issues. The choanal atresia

>> can return in some

>> cases. Hiatus hernia (stomach moves up through the

>> hole in the bottom of

>> the diaphram causing more heart burn, reflux, chest

>> pain.) Could be ear

>> infections causing lack of air pressure in

>> eustatian tube, somewhat

>> involved in the swallow. Aspirated food to lungs.

>> Latex allergy (it

>> gets more severe with greater exposure, and in

>> unsuspected food during

>> preparation, milk bags, restaurants using latex

>> gloves, lots of places);

>> and milk or protein allergies had caused an increase

>> in mucous

>> production and choking/gagging. Delayed stomach

>> emptying, (sometimes

>> neurological, sometimes atresia) digestion and

>> absorption problems also

>> cause more reflux. (especially after long period

>> antibiotic use) Most

>> serious, Coartication of the aeorta of the heart,

>> (sometimes difficult

>> to find by Dr.'s)--more common in CHARGE then we

>> thought. As the child

>> grows it starts to choke off the eosophagus, some

>> even have the artery

>> looped around it. Also, there has been a case that

>> we know where a

>> trachia eosophagia fistula developed at age 12, very

>> uncommon (a whole

>> between the windpipe and eosophoas.)

>> ANN GLOYN, Deafblind Specialist

>>

>> Janet wrote:

>>

>> > Could someone please advise on children with

>> charge

>> > and

>> > swallowing or gagging and thinking they are going

>> to

>> > vomit. Secretions from the back of the throat have

>> > always been a problem for my child but in the last

>> > month she had stopped eating for fear that she

>> will

>> > vomit.

>>

>>

>>

>

>

>__________________________________________________

>

[Guest guest]

Lynn,

Silent reflux is the same as reflux where the child throws up except the

substances don't get far enough to get thrown up. I gguess thats' as simple

as I can put it. The first year of Jillian's life, i was in fear of

penumonia because she sounded soooo congested, but she never even had

bronchitis the first year. After seeing a pulmonoligist at 7-8 months of

age, we found out it was reflux. But Jillian NEVER threw up. (her first 2-3

months of life, if she threw up at all, it came out her nose and never her

mouth) but after those couple of months she NEVER threw up, not even a

little. I thought that was weird because I thought ALL babies spewed a

little when they burped, but not Jillian.. She never threw up or ever

drooled one little drop of spit when she was even teething!!!

It sounds weird that reflux presents itself as a congested sound, maybe one

of the medical professionals on the list can tell you why that is. It's a

question I have never had answered.

Foley

Re: charge children and swallowing

>

> What do you mean by " silent reflux " ? I've never heard that term.

> Jourdan's biggest problem right now is mucus and secretions in her nose

and

> throat. If not for that I think we would be doing good. Kelley has a

> suction machine at home and uses it several times during the day. Jourdan

is

> also sleeping with a cool-air humidifier. Can anyone tell me where all

the

> extra secretions come from and how long this will last?

> I baby-sat with Jourdan yesterday for the first time at home. I was

a

> little reluctant at first because of no backup. There is no nurse to call

> like at the hospital. But I managed fine and Kelley got to go out to run

> some errands. Kelley's Mom will also stay with the baby so Kelley gets a

> chance to get out of the house now and then. Jourdan is so lucky to have

her

> for a Mom as she seems to be on top of everything with the suctioning and

> wound care. I don't know if I mentioned that Kelley is a nurse although

she

> has no experience with infants. (The heart surgery incision is finally

> almost healed and the gtube site is doing well.)

> We are waiting patiently for the smiles to return. Since the gtube

> surgery, we can't get Jourdan to smile very much. Between the congestion

> problems and gas, she just doesn't seem to be a happy camper. BUT

yesterday

> Kelley did get one genuine smile (not in her sleep), and today another, so

> maybe she is feeling better and getting back to herself. We hope so. We

> miss the smiles.

> Lynn (grandmother to Jourdan 3months-Possible

> Charge)

>

>

>