RE: I finally have a question...

[Guest guest]

In a message dated 5/19/2003 12:14:31 PM Eastern Daylight Time,

_Schulte@... writes:

> I could not agree more with what Judi suggested. If your daughter has

> reflux and it goes untreated she may develop aspiration later on...in

> addition to many other syptoms of GERD. I strongly feel you should get

> another opinion from a specialist.

I also agree with Judi and . She may not have or get GERD, but she

may have a slower digestive system, as some kids with DS do. I think it's

called slow motility. My son had GERD caused in part by slow motility. He

took a drug called propulsid, which is off the market now, but it helped

tremendously. Seeing a pediatric a gastroenterologist is great idea. I

took my son after the pediatrician said nothing was wrong. Rather than argue

I just found a specialist and had her send the pediatrician a letter with her

findings.

Kathy, Liam's mom( 5)

[Guest guest]

In a message dated 5/19/2003 12:54:40 PM Eastern Daylight Time,

_Schulte@... writes:

> I absolutely know that I scare a few parents sometimes. But, I would rather

> have them worry for nothing than have a child go untreated when I could

> have said something. I wish someone had suggested GERD to me sooner so

> Blake wouldn't have had to go through all the respitory issues that he did.

> And I could have gotten a few more nights of sleep w/o the stridor.

>

I know a little boy (w/DS) who had permanent damage done to his epiglottis

because of reflux and a pediatrician who told the parents nothing was wrong.

It was the mother of that child who told me to have Liam seen after smelling

his breath.

My niece Caitie (NDA) had such bad reflux as a baby her parents had to feed

her next to the sink. She should have been seen by a specialist, but the

pediatrician said no. We're lucky she didn't have permanent damage. So it's

not just our kids with DS that need watching.

Kathy, Liam's mom( 5)

[Guest guest]

I would suggest seeing a pediatric gastroenterologist just because she has DS

and I know many many kids with DS, including my own, who have reflux bad enough

to require some sort of medication. Just a hunch, but since your regular ped.

isn't a specialist in gastrointestinal disorders, then this would be the logical

way to go. Even if it turns out that nothing's wrong, you'd probably feel

better by having your daughter seen by a specialist in the field. I think it's

like 50 to 60 % of our kids have some sort of intestinal thing which requires

being seen by a specialist.

Good luck!

Judi - Proud mother to Jordan 7, ds and Savannah 6 Months, nda

Ambition is a poor excuse for not having enough

sense to be lazy.

[Guest guest]

I could not agree more with what Judi suggested. If your daughter has

reflux and it goes untreated she may develop aspiration later on...in

addition to many other syptoms of GERD. I strongly feel you should get

another opinion from a specialist.

Schulte

Re: I finally have a question...

> I would suggest seeing a pediatric gastroenterologist just because she has

DS and I know many many kids with DS, including my own, who have reflux bad

enough to require some sort of medication. Just a hunch, but since your

regular ped. isn't a specialist in gastrointestinal disorders, then this

would be the logical way to go. Even if it turns out that nothing's wrong,

you'd probably feel better by having your daughter seen by a specialist in

the field. I think it's like 50 to 60 % of our kids have some sort of

intestinal thing which requires being seen by a specialist.

> Good luck!

> Judi - Proud mother to Jordan 7, ds and Savannah 6 Months, nda

> Ambition is a poor excuse for not having enough

> sense to be lazy.

>

>

>

[Guest guest]

Thanks ! I was worried because I don't want to give anyone the

impression that our kids are always having problems or medical issues, but I

basically go by what Jordan's been through medically. I was so hoping that I

didn't scare anyone with my advice. Thanks for the reassurance!

Judi - Proud mother to Jordan 7, ds and Savannah 6 Months, nda

Ambition is a poor excuse for not having enough

sense to be lazy.

[Guest guest]

I absolutely know that I scare a few parents sometimes. But, I would rather

have them worry for nothing than have a child go untreated when I could have

said something. I wish someone had suggested GERD to me sooner so Blake

wouldn't have had to go through all the respitory issues that he did. And I

could have gotten a few more nights of sleep w/o the stridor.

I've had two parents in the past month e-mail me and thank me for telling them

about the gastro problems because their children had reflux and they didn't know

it until I suggested it to them and they had a ph test done.

Schulte

Re: I finally have a question...

Thanks ! I was worried because I don't want to give anyone the

impression that our kids are always having problems or medical issues, but I

basically go by what Jordan's been through medically. I was so hoping that I

didn't scare anyone with my advice. Thanks for the reassurance!

Judi - Proud mother to Jordan 7, ds and Savannah 6 Months, nda

Ambition is a poor excuse for not having enough

sense to be lazy.

[Guest guest]

I absolutely know that I scare a few parents sometimes. But, I would rather

have them worry for nothing than have a child go untreated when I could have

said something. I wish someone had suggested GERD to me sooner so Blake

wouldn't have had to go through all the respitory issues that he did. And I

could have gotten a few more nights of sleep w/o the stridor.

I've had two parents in the past month e-mail me and thank me for telling them

about the gastro problems because their children had reflux and they didn't know

it until I suggested it to them and they had a ph test done.

Schulte

Re: I finally have a question...

Thanks ! I was worried because I don't want to give anyone the

impression that our kids are always having problems or medical issues, but I

basically go by what Jordan's been through medically. I was so hoping that I

didn't scare anyone with my advice. Thanks for the reassurance!

Judi - Proud mother to Jordan 7, ds and Savannah 6 Months, nda

Ambition is a poor excuse for not having enough

sense to be lazy.

[Guest guest]

True. Savannah had to be put on Zantac for a few months because she had such

bad reflux as a newborn.

Judi - Proud mother to Jordan 7, ds and Savannah 6 Months, nda

Ambition is a poor excuse for not having enough

sense to be lazy.

Re: I finally have a question...My niece Caitie (NDA) had

such bad reflux as a baby her parents had to feed

her next to the sink. She should have been seen by a specialist, but the

pediatrician said no. We're lucky she didn't have permanent damage. So it's

not just our kids with DS that need watching.

Kathy, Liam's mom( 5)

[Guest guest]

Thankfully her pediatrician is really awesome. She has been very on top

of things and helpful. I guess I just mentioned it a few visits ago. I

wasn't terribly worried so she said lets wait it out and that's what

I've been doing. Its just been more on my mind lately as she's been

sitting up and so doing it more. I will call her this afternoon to see

if she knows one that's good. I don't need a referral for insurance -

but she's recommended good specialists before - for stuff like thyroid

testing and eye/ear exams. Thanks for the info.

Michele

Re: I finally have a question...

In a message dated 5/19/2003 12:14:31 PM Eastern Daylight Time,

_Schulte@... writes:

> I could not agree more with what Judi suggested. If your daughter has

> reflux and it goes untreated she may develop aspiration later on...in

> addition to many other syptoms of GERD. I strongly feel you should

get

> another opinion from a specialist.

I also agree with Judi and . She may not have or get GERD, but

she

may have a slower digestive system, as some kids with DS do. I think

it's

called slow motility. My son had GERD caused in part by slow motility.

He

took a drug called propulsid, which is off the market now, but it helped

tremendously. Seeing a pediatric a gastroenterologist is great idea.

I

took my son after the pediatrician said nothing was wrong. Rather than

argue

I just found a specialist and had her send the pediatrician a letter

with her

findings.

Kathy, Liam's mom( 5)

[Guest guest]

Michele,

I'm glad to hear that you are going to pursue this with a specialist. I've

gotten a few lessons about the value of my " instincts " from situations that I've

experienced with Ethan. And one of those was because of his reflux. I don't

believe your situation is probably is like ours, but Ethan was spitting up forty

or fifty times a day, often mustard yellow. Repeated visits to the pediatrician

netted me the same tired response " 70% of infants reflux in the first year.

He's gaining well, and eating well. If it hasn't stopped by the time he's a

year old, we'll take another look at it " . I explained until I was blue in the

face that the reason he was gaining well was because I was literally chasing him

around with a bottle night and day, feeding him small amounts almost constantly.

Finally, at four months of age, I threw a small " tantrum " in the doctor's office

and insisted that he be referred to a pediatric GI. He couldn't get in until he

was 8 months old, but the day after they did his barium swallow he was in

surgery for an intestinal bypass. He had a severe duodenal web that needed

immediate attention. The surgeon at U of M told me that had it been left

unaddressed, he could easily have ended up with a perforated intestine. He

still has problems as a result because his stomach and esophagus were SO dilated

due to the fact that the food he ate had nowhere to go.

The point of my rather long story is this: you live with this child every day

and the doctor sees her only rarely. Your observations are crucial to the

doctor's ability to correctly diagnose and treat her. If you think there is a

possibility that there could be a problem, don't allow your " instincts " to be

shouted down by any doctor's education.

The worst part of Ethan's story is the reason it took four months for him to see

the specialists is because when his doctor called to make the referral they told

him there was no rush - that this was low priority. Ethan is still living with

the results of their mistake, and may for a very long time.

Re: I finally have a question...

In a message dated 5/19/2003 12:14:31 PM Eastern Daylight Time,

_Schulte@... writes:

> I could not agree more with what Judi suggested. If your daughter has

> reflux and it goes untreated she may develop aspiration later on...in

> addition to many other syptoms of GERD. I strongly feel you should

get

> another opinion from a specialist.

I also agree with Judi and . She may not have or get GERD, but

she

may have a slower digestive system, as some kids with DS do. I think

it's

called slow motility. My son had GERD caused in part by slow motility.

He

took a drug called propulsid, which is off the market now, but it helped

tremendously. Seeing a pediatric a gastroenterologist is great idea.

I

took my son after the pediatrician said nothing was wrong. Rather than

argue

I just found a specialist and had her send the pediatrician a letter

with her

findings.

Kathy, Liam's mom( 5)

[Guest guest]

Thanks to everyone for the responses - and a few scary stories! I

called the pediatrician and I told her I was concerned. She said we

should do a swallow study and she will call the specialist in the

morning. She felt that if she called and made the appt then we wouldn't

have to wait as long for an appt. She said sometimes they have a

several month waiting period - but if she called and explained the

situation and in her words " make it a priority " then they would fit us

in sooner. She really takes her cues from me - if I am concerned then

she runs with it. So hopefully we'll get an appointment soon. I just

hate to think that because Bethany is so happy and noncomplaining that

something is going on and she just doesn't let us know. Thanks again

for all the information! You guys are great!

Michele

Re: I finally have a question...

Michele,

I'm glad to hear that you are going to pursue this with a specialist.

I've gotten a few lessons about the value of my " instincts " from

situations that I've experienced with Ethan. And one of those was

because of his reflux. I don't believe your situation is probably is

like ours, but Ethan was spitting up forty or fifty times a day, often

mustard yellow. Repeated visits to the pediatrician netted me the same

tired response " 70% of infants reflux in the first year. He's gaining

well, and eating well. If it hasn't stopped by the time he's a year

old, we'll take another look at it " . I explained until I was blue in

the face that the reason he was gaining well was because I was literally

chasing him around with a bottle night and day, feeding him small

amounts almost constantly. Finally, at four months of age, I threw a

small " tantrum " in the doctor's office and insisted that he be referred

to a pediatric GI. He couldn't get in until he was 8 months old, but

the day after they did his barium swallow he was in surgery for an

intestinal bypass. He had a severe duodenal web that needed immediate

attention. The surgeon at U of M told me that had it been left

unaddressed, he could easily have ended up with a perforated intestine.

He still has problems as a result because his stomach and esophagus were

SO dilated due to the fact that the food he ate had nowhere to go.

The point of my rather long story is this: you live with this child

every day and the doctor sees her only rarely. Your observations are

crucial to the doctor's ability to correctly diagnose and treat her. If

you think there is a possibility that there could be a problem, don't

allow your " instincts " to be shouted down by any doctor's education.

The worst part of Ethan's story is the reason it took four months for

him to see the specialists is because when his doctor called to make the

referral they told him there was no rush - that this was low priority.

Ethan is still living with the results of their mistake, and may for a

very long time.

Re: I finally have a question...

In a message dated 5/19/2003 12:14:31 PM Eastern Daylight Time,

_Schulte@... writes:

> I could not agree more with what Judi suggested. If your daughter has

> reflux and it goes untreated she may develop aspiration later on...in

> addition to many other syptoms of GERD. I strongly feel you should

get

> another opinion from a specialist.

I also agree with Judi and . She may not have or get GERD, but

she

may have a slower digestive system, as some kids with DS do. I think

it's

called slow motility. My son had GERD caused in part by slow motility.

He

took a drug called propulsid, which is off the market now, but it helped

tremendously. Seeing a pediatric a gastroenterologist is great idea.

I

took my son after the pediatrician said nothing was wrong. Rather than

argue

I just found a specialist and had her send the pediatrician a letter

with her

findings.

Kathy, Liam's mom( 5)

[Guest guest]

I believe GERD stands for Gastroenteritis Reflux Disease.

Judi - Proud mother to Jordan 7, ds and Savannah 6 Months, nda

Ambition is a poor excuse for not having enough

sense to be lazy.

Re: I finally have a question...

Thanks ! I was worried because I don't want to give anyone the

impression that our kids are always having problems or medical issues,

but I basically go by what Jordan's been through medically. I was so

hoping that I didn't scare anyone with my advice. Thanks for the

reassurance!

Judi - Proud mother to Jordan 7, ds and Savannah 6 Months, nda

Ambition is a poor excuse for not having enough

sense to be lazy.