REFLUX

[Guest guest]

Hi

My daughter is 18 mos. and has had refluck from the

beginning. In the mornings is usually the worst time

of day for some reason. Maybe from secretions being

swallowed through the night??? But she gags and gags

until a little tiny bit will come up or nothing at

all. Through the day she is usually ok but in the

mornigs..look out. This is not every day either. So it

could be reflux but you never know with these kids, it

is always something different than what you think.

Nothing has helped Lexi with it so far. She is on no

meds for it because they never helped and they have

too many side effects, which they might help for your

daughter though so you might check that out.

mother to Lexi

__________________________________________________

[Guest guest]

Jill,

My daughter has reflux. It has gotten better since she has

gotten older. But when she has a problem with the reflux it is in the

morning. We had her on propulsid which worked really well but they

have since taken it off the market. We are in the process of getting

her into the study so we can then keep her on the propulsid. In the

mean time we have been using tums. I don't know if Kayla can take

anything by mouth but tums has been working really well for .

Also I don't know if she is old enough to take them as well.

Doris Behan (mom to ) 18 in March

[Guest guest]

Jill,

They did a barium swallow. Which they just had her drink this barium drink

and then took films of how she drank and how it went down and then waited 15

minutes and took more x-rays to see what had happened to the barium.

Hope this helps.

Kim

mom the Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

[Guest guest]

Jill,

Does Kayla have a vascular ring??

Foley

Re: RE: reflux

>

>

> >Saleah is also having this problem in the mornings (mostly). She had a

> >swallow study done at about 10 months old and they said she was o.k. so

> they

> >took her g-tube out. Now I had her tested again about a month ago and

they

> >told me that she has reflux quite bad. Is this something that comes and

> >goes. She had it when she was born, then they said it was gone, now it's

> >back??? I had her tested again because for 2 months she would cough and

> >cough and cough until she threw up. It was horrible. At first I though

it

> >had something to do with the fact that she had her tonsils and adnoids

> taken

> >out (it started within a few days of that surgery), but the docs say no.

> So,

> >she is now taking Zantac and Reglan 3 times a day and it is helping some,

> but

> >mornings are still horrible. The second she wakes up she starts coughing

> and

> >doesn't stop until she gags and gets the dry heaves or if she's drank

> >anything in the night, she throws up. It's a horrible way to wake up

every

> >morning. She will also still cough during the day (once in a while)

until

> >she throws up.

> >

> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not the

> only

> >one...

> >

> >Kim

> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

> >

> >

> > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,

July

> >20-22, 2001. Information will be available first in CHARGE Accounts, the

> >CHARGE Syndrome Foundation's newsletter. "

> >

> >For information about the CHARGE Syndrome

> >Foundation or to become a member (and get the newsletter)

> >please contact marion@... or visit

> >the CHARGE Syndrome Foundation web page

> >at http://www.chargesyndrome.org

> >

> >

[Guest guest]

No Kayla doesnt have a vascular ring. She just had the coloboma at birth as

well as the coanal atresia which were both repaired. Now we are just

struggling with the cognitive delays. And maybe reflux. What is the vascular

ring? Jill mom to Kayla (5) charge and Dakota(2)

Re: RE: reflux

>Jill,

>Does Kayla have a vascular ring??

> Foley

> Re: RE: reflux

>>

>>

>> >Saleah is also having this problem in the mornings (mostly). She had a

>> >swallow study done at about 10 months old and they said she was o.k. so

>> they

>> >took her g-tube out. Now I had her tested again about a month ago and

>they

>> >told me that she has reflux quite bad. Is this something that comes and

>> >goes. She had it when she was born, then they said it was gone, now

it's

>> >back??? I had her tested again because for 2 months she would cough and

>> >cough and cough until she threw up. It was horrible. At first I though

>it

>> >had something to do with the fact that she had her tonsils and adnoids

>> taken

>> >out (it started within a few days of that surgery), but the docs say no.

>> So,

>> >she is now taking Zantac and Reglan 3 times a day and it is helping

some,

>> but

>> >mornings are still horrible. The second she wakes up she starts

coughing

>> and

>> >doesn't stop until she gags and gets the dry heaves or if she's drank

>> >anything in the night, she throws up. It's a horrible way to wake up

>every

>> >morning. She will also still cough during the day (once in a while)

>until

>> >she throws up.

>> >

>> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not the

>> only

>> >one...

>> >

>> >Kim

>> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

>> >

>> >

>> > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,

>July

>> >20-22, 2001. Information will be available first in CHARGE Accounts, the

>> >CHARGE Syndrome Foundation's newsletter. "

>> >

>> >For information about the CHARGE Syndrome

>> >Foundation or to become a member (and get the newsletter)

>> >please contact marion@... or visit

>> >the CHARGE Syndrome Foundation web page

>> >at http://www.chargesyndrome.org

>> >

>> >

[Guest guest]

Jill,

One quick question. Were Kayla's colobomas in her retinas? How were they

repaired?

Thanks

Kim

mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

[Guest guest]

Jill, a vascular ring is an artery from the heart that impresses on the

esophagus and/or trachea. In Jillian's case, they wanted to sver it because

she gagged and coughed so much the 1st year of life that they thought her

mucus built up at the indentation and spilled over into her trachea causing

the gagging and coughing...speaking of which she did it this morning before

school and puked ALL in her hair as I was dressing her and I had to stick

her in the tub.... A lot of the kids with the vascular rings are not

diagnosed with them until symptoms occur... It might be worth checking into.

Has Kayla had an echo?? (heart)

Foley

Mom to jackson 5 1/2, ( CHARGE in heaven) and Jillian 3 on March

22....cHaRGE

Re: RE: reflux

> >>

> >>

> >> >Saleah is also having this problem in the mornings (mostly). She had

a

> >> >swallow study done at about 10 months old and they said she was o.k.

so

> >> they

> >> >took her g-tube out. Now I had her tested again about a month ago and

> >they

> >> >told me that she has reflux quite bad. Is this something that comes

and

> >> >goes. She had it when she was born, then they said it was gone, now

> it's

> >> >back??? I had her tested again because for 2 months she would cough

and

> >> >cough and cough until she threw up. It was horrible. At first I

though

> >it

> >> >had something to do with the fact that she had her tonsils and adnoids

> >> taken

> >> >out (it started within a few days of that surgery), but the docs say

no.

> >> So,

> >> >she is now taking Zantac and Reglan 3 times a day and it is helping

> some,

> >> but

> >> >mornings are still horrible. The second she wakes up she starts

> coughing

> >> and

> >> >doesn't stop until she gags and gets the dry heaves or if she's drank

> >> >anything in the night, she throws up. It's a horrible way to wake up

> >every

> >> >morning. She will also still cough during the day (once in a while)

> >until

> >> >she throws up.

> >> >

> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not

the

> >> only

> >> >one...

> >> >

> >> >Kim

> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

> >> >

> >> >

> >> > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,

> >July

> >> >20-22, 2001. Information will be available first in CHARGE Accounts,

the

> >> >CHARGE Syndrome Foundation's newsletter. "

> >> >

> >> >For information about the CHARGE Syndrome

> >> >Foundation or to become a member (and get the newsletter)

> >> >please contact marion@... or visit

> >> >the CHARGE Syndrome Foundation web page

> >> >at http://www.chargesyndrome.org

> >> >

> >> >

[Guest guest]

Im sorry i ment that her crossed eyeys were repaired then they found the

colobomas shortly after birth. Hers are so far down thought that they

shouldnt bother her sight. Thanks for bringing that to my attention. Jill

Re: RE: reflux

>Jill,

>

>One quick question. Were Kayla's colobomas in her retinas? How were they

>repaired?

>

>Thanks

>Kim

>mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

>

> " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

>20-22, 2001. Information will be available first in CHARGE Accounts, the

>CHARGE Syndrome Foundation's newsletter. "

>

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter)

>please contact marion@... or visit

>the CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

>

>

[Guest guest]

No Kayla hasnt had a echo, they found a small murmmer at birth did a few

tests and everything is okay now. Where are you from? it seems we have some

of the same problems in common, it would be great to finnally share some of

my problems with Kayla with someone who has been there> JILL in Wisconsin

mom to Kayla (5) charge and Dakota (2)

Re: RE: reflux

>Jill, a vascular ring is an artery from the heart that impresses on the

>esophagus and/or trachea. In Jillian's case, they wanted to sver it because

>she gagged and coughed so much the 1st year of life that they thought her

>mucus built up at the indentation and spilled over into her trachea causing

>the gagging and coughing...speaking of which she did it this morning before

>school and puked ALL in her hair as I was dressing her and I had to stick

>her in the tub.... A lot of the kids with the vascular rings are not

>diagnosed with them until symptoms occur... It might be worth checking

into.

>Has Kayla had an echo?? (heart)

> Foley

>Mom to jackson 5 1/2, ( CHARGE in heaven) and Jillian 3 on March

>22....cHaRGE

> Re: RE: reflux

>> >>

>> >>

>> >> >Saleah is also having this problem in the mornings (mostly). She had

>a

>> >> >swallow study done at about 10 months old and they said she was o.k.

>so

>> >> they

>> >> >took her g-tube out. Now I had her tested again about a month ago

and

>> >they

>> >> >told me that she has reflux quite bad. Is this something that comes

>and

>> >> >goes. She had it when she was born, then they said it was gone, now

>> it's

>> >> >back??? I had her tested again because for 2 months she would cough

>and

>> >> >cough and cough until she threw up. It was horrible. At first I

>though

>> >it

>> >> >had something to do with the fact that she had her tonsils and

adnoids

>> >> taken

>> >> >out (it started within a few days of that surgery), but the docs say

>no.

>> >> So,

>> >> >she is now taking Zantac and Reglan 3 times a day and it is helping

>> some,

>> >> but

>> >> >mornings are still horrible. The second she wakes up she starts

>> coughing

>> >> and

>> >> >doesn't stop until she gags and gets the dry heaves or if she's drank

>> >> >anything in the night, she throws up. It's a horrible way to wake up

>> >every

>> >> >morning. She will also still cough during the day (once in a while)

>> >until

>> >> >she throws up.

>> >> >

>> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not

>the

>> >> only

>> >> >one...

>> >> >

>> >> >Kim

>> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

>> >> >

>> >> >

>> >> > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,

>> >July

>> >> >20-22, 2001. Information will be available first in CHARGE Accounts,

>the

>> >> >CHARGE Syndrome Foundation's newsletter. "

>> >> >

>> >> >For information about the CHARGE Syndrome

>> >> >Foundation or to become a member (and get the newsletter)

>> >> >please contact marion@... or visit

>> >> >the CHARGE Syndrome Foundation web page

>> >> >at http://www.chargesyndrome.org

>> >> >

>> >> >

[Guest guest]

Kayla has an appt with her peds doc. next week, I will bring this up then

thanks for letting me know, they said the murmmer is innocent whatever that

means. And yes i dont need any surprises later on. Is the echo alot involved

or just the simple procedure of hooking up all the wires as in other heart

tests? Jill

Re: RE: reflux

>Jill,

>Not to scare you but Jillian's had 3 heart defects found later after being

>cleared from the cardiologist 3 times never having to go back again and now

>she may need heart surgery!!! So just the simpple fact that Kayla has

CHARGE

>is reason enough to get a very thorough echo... You don't want any

surprises

>in the future. The murmur must come from something?????

> Foley

> Re: RE: reflux

>> >> >>

>> >> >>

>> >> >> >Saleah is also having this problem in the mornings (mostly). She

>had

>> >a

>> >> >> >swallow study done at about 10 months old and they said she was

>o.k.

>> >so

>> >> >> they

>> >> >> >took her g-tube out. Now I had her tested again about a month ago

>> and

>> >> >they

>> >> >> >told me that she has reflux quite bad. Is this something that

>comes

>> >and

>> >> >> >goes. She had it when she was born, then they said it was gone,

>now

>> >> it's

>> >> >> >back??? I had her tested again because for 2 months she would

>cough

>> >and

>> >> >> >cough and cough until she threw up. It was horrible. At first I

>> >though

>> >> >it

>> >> >> >had something to do with the fact that she had her tonsils and

>> adnoids

>> >> >> taken

>> >> >> >out (it started within a few days of that surgery), but the docs

>say

>> >no.

>> >> >> So,

>> >> >> >she is now taking Zantac and Reglan 3 times a day and it is

helping

>> >> some,

>> >> >> but

>> >> >> >mornings are still horrible. The second she wakes up she starts

>> >> coughing

>> >> >> and

>> >> >> >doesn't stop until she gags and gets the dry heaves or if she's

>drank

>> >> >> >anything in the night, she throws up. It's a horrible way to wake

>up

>> >> >every

>> >> >> >morning. She will also still cough during the day (once in a

>while)

>> >> >until

>> >> >> >she throws up.

>> >> >> >

>> >> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm

not

>> >the

>> >> >> only

>> >> >> >one...

>> >> >> >

>> >> >> >Kim

>> >> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

>> >> >> >

>> >> >> >

>> >> >> > " 5th International CHARGE Syndrome Conference, Indianapolis,

>Indiana,

>> >> >July

>> >> >> >20-22, 2001. Information will be available first in CHARGE

>Accounts,

>> >the

>> >> >> >CHARGE Syndrome Foundation's newsletter. "

>> >> >> >

>> >> >> >For information about the CHARGE Syndrome

>> >> >> >Foundation or to become a member (and get the newsletter)

>> >> >> >please contact marion@... or visit

>> >> >> >the CHARGE Syndrome Foundation web page

>> >> >> >at http://www.chargesyndrome.org

>> >> >> >

>> >> >> >

[Guest guest]

Jill,

I live in Virginia about 30 miles west of Washington DC....

Foley

Re: RE: reflux

> >> >>

> >> >>

> >> >> >Saleah is also having this problem in the mornings (mostly). She

had

> >a

> >> >> >swallow study done at about 10 months old and they said she was

o.k.

> >so

> >> >> they

> >> >> >took her g-tube out. Now I had her tested again about a month ago

> and

> >> >they

> >> >> >told me that she has reflux quite bad. Is this something that

comes

> >and

> >> >> >goes. She had it when she was born, then they said it was gone,

now

> >> it's

> >> >> >back??? I had her tested again because for 2 months she would

cough

> >and

> >> >> >cough and cough until she threw up. It was horrible. At first I

> >though

> >> >it

> >> >> >had something to do with the fact that she had her tonsils and

> adnoids

> >> >> taken

> >> >> >out (it started within a few days of that surgery), but the docs

say

> >no.

> >> >> So,

> >> >> >she is now taking Zantac and Reglan 3 times a day and it is helping

> >> some,

> >> >> but

> >> >> >mornings are still horrible. The second she wakes up she starts

> >> coughing

> >> >> and

> >> >> >doesn't stop until she gags and gets the dry heaves or if she's

drank

> >> >> >anything in the night, she throws up. It's a horrible way to wake

up

> >> >every

> >> >> >morning. She will also still cough during the day (once in a

while)

> >> >until

> >> >> >she throws up.

> >> >> >

> >> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not

> >the

> >> >> only

> >> >> >one...

> >> >> >

> >> >> >Kim

> >> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

> >> >> >

> >> >> >

> >> >> > " 5th International CHARGE Syndrome Conference, Indianapolis,

Indiana,

> >> >July

> >> >> >20-22, 2001. Information will be available first in CHARGE

Accounts,

> >the

> >> >> >CHARGE Syndrome Foundation's newsletter. "

> >> >> >

> >> >> >For information about the CHARGE Syndrome

> >> >> >Foundation or to become a member (and get the newsletter)

> >> >> >please contact marion@... or visit

> >> >> >the CHARGE Syndrome Foundation web page

> >> >> >at http://www.chargesyndrome.org

> >> >> >

> >> >> >

[Guest guest]

Jill,

Not to scare you but Jillian's had 3 heart defects found later after being

cleared from the cardiologist 3 times never having to go back again and now

she may need heart surgery!!! So just the simpple fact that Kayla has CHARGE

is reason enough to get a very thorough echo... You don't want any surprises

in the future. The murmur must come from something?????

Foley

Re: RE: reflux

> >> >>

> >> >>

> >> >> >Saleah is also having this problem in the mornings (mostly). She

had

> >a

> >> >> >swallow study done at about 10 months old and they said she was

o.k.

> >so

> >> >> they

> >> >> >took her g-tube out. Now I had her tested again about a month ago

> and

> >> >they

> >> >> >told me that she has reflux quite bad. Is this something that

comes

> >and

> >> >> >goes. She had it when she was born, then they said it was gone,

now

> >> it's

> >> >> >back??? I had her tested again because for 2 months she would

cough

> >and

> >> >> >cough and cough until she threw up. It was horrible. At first I

> >though

> >> >it

> >> >> >had something to do with the fact that she had her tonsils and

> adnoids

> >> >> taken

> >> >> >out (it started within a few days of that surgery), but the docs

say

> >no.

> >> >> So,

> >> >> >she is now taking Zantac and Reglan 3 times a day and it is helping

> >> some,

> >> >> but

> >> >> >mornings are still horrible. The second she wakes up she starts

> >> coughing

> >> >> and

> >> >> >doesn't stop until she gags and gets the dry heaves or if she's

drank

> >> >> >anything in the night, she throws up. It's a horrible way to wake

up

> >> >every

> >> >> >morning. She will also still cough during the day (once in a

while)

> >> >until

> >> >> >she throws up.

> >> >> >

> >> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm not

> >the

> >> >> only

> >> >> >one...

> >> >> >

> >> >> >Kim

> >> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

> >> >> >

> >> >> >

> >> >> > " 5th International CHARGE Syndrome Conference, Indianapolis,

Indiana,

> >> >July

> >> >> >20-22, 2001. Information will be available first in CHARGE

Accounts,

> >the

> >> >> >CHARGE Syndrome Foundation's newsletter. "

> >> >> >

> >> >> >For information about the CHARGE Syndrome

> >> >> >Foundation or to become a member (and get the newsletter)

> >> >> >please contact marion@... or visit

> >> >> >the CHARGE Syndrome Foundation web page

> >> >> >at http://www.chargesyndrome.org

> >> >> >

> >> >> >

[Guest guest]

Jill,

An Echo is an ultrasound of the heart. They just

lie on a table (Wyatt got to watch a movie:) and have

it done. (Just like for Pregnancy:) Hope all goes

well with Kayla!!!

Strom

--- jill wrote:

> Kayla has an appt with her peds doc. next week, I

> will bring this up then

> thanks for letting me know, they said the murmmer is

> innocent whatever that

> means. And yes i dont need any surprises later on.

> Is the echo alot involved

> or just the simple procedure of hooking up all the

> wires as in other heart

> tests? Jill

> Re: RE: reflux

>

>

> >Jill,

> >Not to scare you but Jillian's had 3 heart defects

> found later after being

> >cleared from the cardiologist 3 times never having

> to go back again and now

> >she may need heart surgery!!! So just the simpple

> fact that Kayla has

> CHARGE

> >is reason enough to get a very thorough echo... You

> don't want any

> surprises

> >in the future. The murmur must come from

> something?????

> > Foley

> > Re: RE: reflux

> >> >> >>

> >> >> >>

> >> >> >> >Saleah is also having this problem in the

> mornings (mostly). She

> >had

> >> >a

> >> >> >> >swallow study done at about 10 months old

> and they said she was

> >o.k.

> >> >so

> >> >> >> they

> >> >> >> >took her g-tube out. Now I had her tested

> again about a month ago

> >> and

> >> >> >they

> >> >> >> >told me that she has reflux quite bad. Is

> this something that

> >comes

> >> >and

> >> >> >> >goes. She had it when she was born, then

> they said it was gone,

> >now

> >> >> it's

> >> >> >> >back??? I had her tested again because

> for 2 months she would

> >cough

> >> >and

> >> >> >> >cough and cough until she threw up. It

> was horrible. At first I

> >> >though

> >> >> >it

> >> >> >> >had something to do with the fact that she

> had her tonsils and

> >> adnoids

> >> >> >> taken

> >> >> >> >out (it started within a few days of that

> surgery), but the docs

> >say

> >> >no.

> >> >> >> So,

> >> >> >> >she is now taking Zantac and Reglan 3

> times a day and it is

> helping

> >> >> some,

> >> >> >> but

> >> >> >> >mornings are still horrible. The second

> she wakes up she starts

> >> >> coughing

> >> >> >> and

> >> >> >> >doesn't stop until she gags and gets the

> dry heaves or if she's

> >drank

> >> >> >> >anything in the night, she throws up.

> It's a horrible way to wake

> >up

>

=== message truncated ===

__________________________________________________

[Guest guest]

Jill,

An Echo is an ultrasound of the heart. They just

lie on a table (Wyatt got to watch a movie:) and have

it done. (Just like for Pregnancy:) Hope all goes

well with Kayla!!!

Strom

--- jill wrote:

> Kayla has an appt with her peds doc. next week, I

> will bring this up then

> thanks for letting me know, they said the murmmer is

> innocent whatever that

> means. And yes i dont need any surprises later on.

> Is the echo alot involved

> or just the simple procedure of hooking up all the

> wires as in other heart

> tests? Jill

> Re: RE: reflux

>

>

> >Jill,

> >Not to scare you but Jillian's had 3 heart defects

> found later after being

> >cleared from the cardiologist 3 times never having

> to go back again and now

> >she may need heart surgery!!! So just the simpple

> fact that Kayla has

> CHARGE

> >is reason enough to get a very thorough echo... You

> don't want any

> surprises

> >in the future. The murmur must come from

> something?????

> > Foley

> > Re: RE: reflux

> >> >> >>

> >> >> >>

> >> >> >> >Saleah is also having this problem in the

> mornings (mostly). She

> >had

> >> >a

> >> >> >> >swallow study done at about 10 months old

> and they said she was

> >o.k.

> >> >so

> >> >> >> they

> >> >> >> >took her g-tube out. Now I had her tested

> again about a month ago

> >> and

> >> >> >they

> >> >> >> >told me that she has reflux quite bad. Is

> this something that

> >comes

> >> >and

> >> >> >> >goes. She had it when she was born, then

> they said it was gone,

> >now

> >> >> it's

> >> >> >> >back??? I had her tested again because

> for 2 months she would

> >cough

> >> >and

> >> >> >> >cough and cough until she threw up. It

> was horrible. At first I

> >> >though

> >> >> >it

> >> >> >> >had something to do with the fact that she

> had her tonsils and

> >> adnoids

> >> >> >> taken

> >> >> >> >out (it started within a few days of that

> surgery), but the docs

> >say

> >> >no.

> >> >> >> So,

> >> >> >> >she is now taking Zantac and Reglan 3

> times a day and it is

> helping

> >> >> some,

> >> >> >> but

> >> >> >> >mornings are still horrible. The second

> she wakes up she starts

> >> >> coughing

> >> >> >> and

> >> >> >> >doesn't stop until she gags and gets the

> dry heaves or if she's

> >drank

> >> >> >> >anything in the night, she throws up.

> It's a horrible way to wake

> >up

>

=== message truncated ===

__________________________________________________

[Guest guest]

Jill,

An echo is like an ultrasound. Just a little jelly on the chest and they rub

that thing on it.

Foley

Re: RE: reflux

> >> >> >>

> >> >> >>

> >> >> >> >Saleah is also having this problem in the mornings (mostly).

She

> >had

> >> >a

> >> >> >> >swallow study done at about 10 months old and they said she was

> >o.k.

> >> >so

> >> >> >> they

> >> >> >> >took her g-tube out. Now I had her tested again about a month

ago

> >> and

> >> >> >they

> >> >> >> >told me that she has reflux quite bad. Is this something that

> >comes

> >> >and

> >> >> >> >goes. She had it when she was born, then they said it was gone,

> >now

> >> >> it's

> >> >> >> >back??? I had her tested again because for 2 months she would

> >cough

> >> >and

> >> >> >> >cough and cough until she threw up. It was horrible. At first

I

> >> >though

> >> >> >it

> >> >> >> >had something to do with the fact that she had her tonsils and

> >> adnoids

> >> >> >> taken

> >> >> >> >out (it started within a few days of that surgery), but the docs

> >say

> >> >no.

> >> >> >> So,

> >> >> >> >she is now taking Zantac and Reglan 3 times a day and it is

> helping

> >> >> some,

> >> >> >> but

> >> >> >> >mornings are still horrible. The second she wakes up she starts

> >> >> coughing

> >> >> >> and

> >> >> >> >doesn't stop until she gags and gets the dry heaves or if she's

> >drank

> >> >> >> >anything in the night, she throws up. It's a horrible way to

wake

> >up

> >> >> >every

> >> >> >> >morning. She will also still cough during the day (once in a

> >while)

> >> >> >until

> >> >> >> >she throws up.

> >> >> >> >

> >> >> >> >I feel like I'm going crazy sometimes, but I'm glad to know I'm

> not

> >> >the

> >> >> >> only

> >> >> >> >one...

> >> >> >> >

> >> >> >> >Kim

> >> >> >> >mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

> >> >> >> >

> >> >> >> >

> >> >> >> > " 5th International CHARGE Syndrome Conference, Indianapolis,

> >Indiana,

> >> >> >July

> >> >> >> >20-22, 2001. Information will be available first in CHARGE

> >Accounts,

> >> >the

> >> >> >> >CHARGE Syndrome Foundation's newsletter. "

> >> >> >> >

> >> >> >> >For information about the CHARGE Syndrome

> >> >> >> >Foundation or to become a member (and get the newsletter)

> >> >> >> >please contact marion@... or visit

> >> >> >> >the CHARGE Syndrome Foundation web page

> >> >> >> >at http://www.chargesyndrome.org

> >> >> >> >

> >> >> >> >

[Guest guest]

She was on Reglan for about 2 years. Which helped a great deal. She

eventually outgrew the need for it (YEAH !!) Slowly, we just kept weening

her from it and she did well.

She also had a constriction at her TE fistual repair site which caused

problems when she finally started eating solid foods. In fact, she would

not eat any solids until the drs. intervened (probed the site and opened it

back up) it was as though she knew bcause right after that she would eat

just about anything. We had to have to probes done 1/month for about 5

months. Knock on wood, haven't had the need to go back in about 2 years.

reflux

Juli

Is she on any reflux drugs? That would really help.

We would either feed Caitlyn in her bouncy chair, or

on the couch with the cushion propped up, or in the

stoller. We also had a walker that had wheels that

locked--kind of like an exersaucer. We used that too

and had toys on the tray.

Jeanne

__________________________________________________

[Guest guest]

Ken,

Does have a fundoplication? That worked wonders for us, I am a fan of them, although I have heard where some of them fail. Also, Kennedy is on a formula called "Vivonex Pediatric" which is actually for kids with bowel problems, etc and it's already broken down some, it's milk free as well and very easy to tolerate. It might be something to ask your nutritionist about.

Reflux has been one of the worst things about having a child with CHARGE that we had to experience, I know how awful it is and how guilty you feel putting that food into them. I hope you come to some kind of a resolution soon. On a bright note, some of the kids a little older, a year and a half, 2 years can outgrow the reflux as well so he just may "outgrow" it. But, I think with a lot of CHARGErs, it's nerve-related so they won't "outgrow" it.

Keep us posted Ken...

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

reflux

is a year old now, and was on Enfamil 24 calorieformula. Still G-tube fed, He goes through spells ofconstant reflux, then won't spit up at all for a fewdays, then reflux again. His nutritionist switchedhim to Pediasure and he isn't handling it very well,but didn't have great luck with Enfamil either. Yes,we give him Zantac, and Reglan. We have to suctionhim constantly. He has already had a soft palaterepair. Does anyone have any ideas or stories oranything that I might be able to use? Poor littleguy, I feel guilty everytime I eat. How many otherpeople get mad at God sometimes? I know I shouldn'tbut I am only human, and I get reminded of that daily.Ken__________________________________________________

[Guest guest]

>

>Reply-To: CHARGE

>To: CHARGE SYNDROME <CHARGE >

>Subject: reflux

>Date: Sun, 1 Apr 2001 11:05:02 -0700 (PDT)

>

> is a year old now, and was on Enfamil 24 calorie

>formula. Still G-tube fed, He goes through spells of

>constant reflux, then won't spit up at all for a few

>days, then reflux again. His nutritionist switched

>him to Pediasure and he isn't handling it very well,

>but didn't have great luck with Enfamil either. Yes,

>we give him Zantac, and Reglan. We have to suction

>him constantly. He has already had a soft palate

>repair. Does anyone have any ideas or stories or

>anything that I might be able to use? Poor little

>guy, I feel guilty everytime I eat. How many other

>people get mad at God sometimes? I know I shouldn't

>but I am only human, and I get reminded of that daily.

>

>Ken

>

>__________________________________________________

>

[Guest guest]

Another thing that many people have found helpful with reflux with a child

feeding by tube is to change them from a " formula " diet to a " blended " diet

of regular foods. The foods are blenderized and put into the tube. Some

people use exclusively a blenderized diet. Others use a combination of the

formula and the blenderized diet. I am on another list for people with

g-tubes. It is mostly parents of kids with tubes on the list. Some of

those folks have tons of exerience with blended diets. I don't. If you

want to check it out go to: http://www.gtube.org for list information.

--

[Guest guest]

,

That is what we feed Kennedy, blenderized meat, veggies & fruit and her Vivonex formula! I think it's great...

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: Re: reflux

Another thing that many people have found helpful with reflux with a childfeeding by tube is to change them from a "formula" diet to a "blended" dietof regular foods. The foods are blenderized and put into the tube. Somepeople use exclusively a blenderized diet. Others use a combination of theformula and the blenderized diet. I am on another list for people withg-tubes. It is mostly parents of kids with tubes on the list. Some ofthose folks have tons of exerience with blended diets. I don't. If youwant to check it out go to: http://www.gtube.org for list information.--"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Hello Ken,

It is really upsetting when the multitude of issues with CHARGE keep

popping up. Believe me, I know how hard this can be. Regarding your

reflux question, I wanted to let you know that at least for our daughter

there was no way she could tolerate either Enfamil or Pediasure. She

became unable to process breast milk at 4 months of age. We knew this

because of severe diarrhea, reflux and bleeding in her stomach. She could

not tolerate any formulas. She was put on a specialized formula,

Pregestemil and it was one of the things I am sure has been critical for

her survival. It is a formula that is completely broken down and the child

does not need to work hard to digest it. 'Predigested' is what is

important to this formula. The amino acids are already accessible to the

child without further digestion due to the makeup of the formula. It was

available at our local grocery store. However, it did not stop the reflux

and she required a fundoplication.

There are several other similar " predigested' or otherwise easily digested

formulas available ('s Kennedy has benefitted from one with a different

name and some other children have outgrown reflux.). Perhaps trying one of

these formulas could be helpful at this point. I would want to try these

possibilities before looking at a fundoplication.

I would love to see research into what makes the digestion so hard and/or

what makes reflux so common and difficult with many CHARGE babies. The

reflux probably comes from a variety of structural and tone issues. It

seems quite difficult to stop in many cases because the body doesn't know

how to process the food with peristalsis correctly.

Mom to Kendra, 14, , 20 and Camille, 23

At 11:05 AM 4/1/01 -0700, you wrote:

> is a year old now, and was on Enfamil 24 calorie

>formula.

[Guest guest]

Thanks for the responses. i print these out and take

them to his pediatrician and nutritionists.

Ken

--- Keedy wrote:

> Hello Ken,

>

> It is really upsetting when the multitude of issues

> with CHARGE keep

> popping up. Believe me, I know how hard this can

> be. Regarding your

> reflux question, I wanted to let you know that at

> least for our daughter

> there was no way she could tolerate either Enfamil

> or Pediasure. She

> became unable to process breast milk at 4 months of

> age. We knew this

> because of severe diarrhea, reflux and bleeding in

> her stomach. She could

> not tolerate any formulas. She was put on a

> specialized formula,

> Pregestemil and it was one of the things I am sure

> has been critical for

> her survival. It is a formula that is completely

> broken down and the child

> does not need to work hard to digest it.

> 'Predigested' is what is

> important to this formula. The amino acids are

> already accessible to the

> child without further digestion due to the makeup of

> the formula. It was

> available at our local grocery store. However, it

> did not stop the reflux

> and she required a fundoplication.

>

> There are several other similar " predigested' or

> otherwise easily digested

> formulas available ('s Kennedy has benefitted

> from one with a different

> name and some other children have outgrown reflux.).

> Perhaps trying one of

> these formulas could be helpful at this point. I

> would want to try these

> possibilities before looking at a fundoplication.

>

> I would love to see research into what makes the

> digestion so hard and/or

> what makes reflux so common and difficult with many

> CHARGE babies. The

> reflux probably comes from a variety of structural

> and tone issues. It

> seems quite difficult to stop in many cases because

> the body doesn't know

> how to process the food with peristalsis correctly.

>

>

> Mom to Kendra, 14, , 20 and Camille, 23

> At 11:05 AM 4/1/01 -0700, you wrote:

> > is a year old now, and was on Enfamil 24

> calorie

> >formula.

>

>

>

__________________________________________________

[Guest guest]

Ken-

My grandson had a nissen done at 2 weeks. The surgery consist of taking the top part of the stomach and wrapping it around the end of the esophagus to prevent reflux and aspiration. It has prevented some of the reflux but not all--He is on Zantac twice a day. The trick with Josh is to feed slow.

Needless to say, he hasn't had pneumonia. But we have had other problems.

GI bleed not related to the surgery caused changes of formulas until we got it right. Just putting on weight is the problem. Josh still acts like he strangles at times when he's fed too soon.

Josh is on Nutramangen with polycose for extra calories. Josh only weighs 13 1/2 lbs. He now has two teeth, is rolling over, attempting to sit up. and scoots on him back to get around the floor. We are so proud of him.

I would suggest the nissen to anyone!!!

Iris, mom and grandmom of Chargers--Kriste, age 28 and her son Josh age 10 months

[Guest guest]

Ken,

I thought the same thing about not putting Bryce through another surgery

to have the nisssan, but after having one at 15 months, his day to day life

improved significantly. I wished I had done it sooner. Just my experience. It

is so hard to know what is best for these kids sometimes. Even the doctors

don't often know.

Deedee

[Guest guest]

I have heard of that, but I heard it called a necin.

I would hate to have him go through more surgeries.

Thanks.

Ken

--- Graeme & Weir wrote:

> Ken,

> A fundoplication is where they take the top of the

> stomach and " wrap " it closed, so nothing can come

> up. When the child needs to throw up, you open

> their g tube or button and let it come out that way.

> We are very happy with our decision to have a fundo

> done on Kennedy at 6 months of age. Reflux was

> awful, and I believe our decision to do it prevented

> numerous aspiration pneumonias.

> Here are a couple of websites you might want to

> check out:

>

http://www.tofs.ndirect.co.uk/info_leaflets_nissen.htm

> http://www.surgeonsgroup.com/nissen.htm

>

> Mom to Kennedy 3yr old CHARGEr, 11, 9, and

> wife to Graeme

> New Brunswick, Canada

> Visit the " Weir homepage " at:

> http://www.geocities.com/SunsetStrip/Palms/5716

> ICQ #1426476

>

> reflux

> >

> >

> > is a year old now, and was on Enfamil 24

> > calorie

> > formula. Still G-tube fed, He goes through

> spells

> > of

> > constant reflux, then won't spit up at all for

> a

> > few

> > days, then reflux again. His nutritionist

> > switched

> > him to Pediasure and he isn't handling it very

> > well,

> > but didn't have great luck with Enfamil

> either.

> > Yes,

> > we give him Zantac, and Reglan. We have to

> > suction

> > him constantly. He has already had a soft

> palate

> > repair. Does anyone have any ideas or stories

> or

> > anything that I might be able to use? Poor

> little

> > guy, I feel guilty everytime I eat. How many

> > other

> > people get mad at God sometimes? I know I

> > shouldn't

> > but I am only human, and I get reminded of

> that

> > daily.

> >

> > Ken

> >

> >

> __________________________________________________

> >