Re: delayed gastric emptying

January 16, 2003

The treatment varies with the severity of the problem. Sometimes the child

can just take a motility agent and this helps move things through the GI

system. It seems in most cases with our kids, if they do have the delayed

emptying, that the exit from the stomach into the intestine is too thick and

narrow. It requires surgery to correct.

The test for this in 1 1/2 hour in length. It is a nuclear medicine test.

The child's stomach must be empty to start the test and they give the child

what would be their normal feeding in volume with an every so small amount

of radioactive isotopes in the formula. They can then watch your child's

stomach fill and empty. If reflux is present they can see that too.

Many people bring videos for their child to watch because the test is long

and they are restrained. You want to dress them in light weight clothing

because they do get HOT. Some places supply the video. Ask questions so you

are prepared.

If you are going to be or are a patient of Dr Harbison's she has modified

this test slightly for RSS children..but still do not let them put more

volume in the stomach than your child gets in a normal feeding. if the

stomach is overfilled Alyssa will vomit. If Alyssa normally vomits after a

meal make sure the technicians are prepared for this since Alyssa will be

restrained.

Typically it is a long and boring test. Janelle has had it three times and

in each one she behaved differently.

Good luck hope this helps.

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

Reply-To: RSS-Support

Date: Thu, 16 Jan 2003 11:04:49 -0600

To: RSS-Support

Subject: Re: Re: From Cameron's mom

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Thu, 16 Jan 2003 10:57:35 -0600

What is the treatment for delayed gastric emptying? What is the test like?

I am starting to wonder if this may contribute to Alyssa's not wanting to

eat. Any info would be helpful!!

Thanks, Dayna, Mom to Alyssa 1year, 13lbs 8oz.

Re: From Cameron's mom

> Resent-From: laura@...

> Resent-To: bugwilder@...

> Resent-Date: Wed, 15 Jan 2003 20:26:05 -0600

>

> Hi a,

>

> Are you seeing an endocrinologist? That's probably the best

> specialist for Cameron to see. Besides what Jodi mentioned, I'd also

> ask about a feeding tube. What kind of weight gain would the doctor

> like him to have on Periactin, and if he doesn't achieve that, should

> he have a feeding tube. What is the timeframe for that (3 months, 6

> months)? Will the doctor monitor him every 3 months?

>

> You could also ask him about growth hormone therapy. You don't need

> to make a decision on this anytime soon, but it would be good if the

> doctor could give you a lot of information about the advantages and

> disadvantages, potential side effects, his experience with GHT, and

> what he sees as Cameron's long-term treatment options.

>

> It would also be nice if he could give you his e-mail address so you

> can contact him easily. We only send our doctor an e-mail very, very

> occasionally, but it's good to have just so we don't feel like we

> have to remember absolutely everything at the appointment or wait

> another 3 months to see him.

>

> (Tyler, nearly 4, 24.5 lbs, 35.5 " ; , 2 1/2; Kelsey, 8 mos)

>

January 16, 2003

,

Thank you so much for all of the information. Does the narrow intestine

cause difficulties with hard stools?? We have a terrible time with Alyssa

being constipated.

Thanks again, Dayna

Re: From Cameron's mom

> > Resent-From: laura@...

> > Resent-To: bugwilder@...

> > Resent-Date: Wed, 15 Jan 2003 20:26:05 -0600

> >

> > Hi a,

> >

> > Are you seeing an endocrinologist? That's probably the best

> > specialist for Cameron to see. Besides what Jodi mentioned, I'd also

> > ask about a feeding tube. What kind of weight gain would the doctor

> > like him to have on Periactin, and if he doesn't achieve that, should

> > he have a feeding tube. What is the timeframe for that (3 months, 6

> > months)? Will the doctor monitor him every 3 months?

> >

> > You could also ask him about growth hormone therapy. You don't need

> > to make a decision on this anytime soon, but it would be good if the

> > doctor could give you a lot of information about the advantages and

> > disadvantages, potential side effects, his experience with GHT, and

> > what he sees as Cameron's long-term treatment options.

> >

> > It would also be nice if he could give you his e-mail address so you

> > can contact him easily. We only send our doctor an e-mail very, very

> > occasionally, but it's good to have just so we don't feel like we

> > have to remember absolutely everything at the appointment or wait

> > another 3 months to see him.

> >

> > (Tyler, nearly 4, 24.5 lbs, 35.5 " ; , 2 1/2; Kelsey, 8 mos)

> >

January 16, 2003

Hi Dayna,

I'm barging in here. Colin had lots of issues with constipation when

he was on the Enfamil AR formula with rice. His doctor prescribed

Lactulose and this really helped keep things moving. It is a liquid

med that we added to all bottles. You might ask your doctor about it.

The constipation is not good for reflux so it is important to have

this treated.

Colin (RSS) and Hayden - 25 mo. twins

> ,

>

> Thank you so much for all of the information. Does the narrow

intestine

> cause difficulties with hard stools?? We have a terrible time with

Alyssa

> being constipated.

>

> Thanks again, Dayna

> Re: From Cameron's mom

> > > Resent-From: laura@b...

> > > Resent-To: bugwilder@a...

> > > Resent-Date: Wed, 15 Jan 2003 20:26:05 -0600

> > >

> > > Hi a,

> > >

> > > Are you seeing an endocrinologist? That's probably the best

> > > specialist for Cameron to see. Besides what Jodi mentioned,

I'd also

> > > ask about a feeding tube. What kind of weight gain would the

doctor

> > > like him to have on Periactin, and if he doesn't achieve that,

should

> > > he have a feeding tube. What is the timeframe for that (3

months, 6

> > > months)? Will the doctor monitor him every 3 months?

> > >

> > > You could also ask him about growth hormone therapy. You don't

need

> > > to make a decision on this anytime soon, but it would be good

if the

> > > doctor could give you a lot of information about the advantages

and

> > > disadvantages, potential side effects, his experience with GHT,

and

> > > what he sees as Cameron's long-term treatment options.

> > >

> > > It would also be nice if he could give you his e-mail address

so you

> > > can contact him easily. We only send our doctor an e-mail

very, very

> > > occasionally, but it's good to have just so we don't feel like

we

> > > have to remember absolutely everything at the appointment or

wait

> > > another 3 months to see him.

> > >

> > > (Tyler, nearly 4, 24.5 lbs, 35.5 " ; , 2 1/2; Kelsey,

8 mos)

> > >

January 16, 2003

Hi Dayna,

I'm barging in here. Colin had lots of issues with constipation when

he was on the Enfamil AR formula with rice. His doctor prescribed

Lactulose and this really helped keep things moving. It is a liquid

med that we added to all bottles. You might ask your doctor about it.

The constipation is not good for reflux so it is important to have

this treated.

Colin (RSS) and Hayden - 25 mo. twins

> ,

>

> Thank you so much for all of the information. Does the narrow

intestine

> cause difficulties with hard stools?? We have a terrible time with

Alyssa

> being constipated.

>

> Thanks again, Dayna

> Re: From Cameron's mom

> > > Resent-From: laura@b...

> > > Resent-To: bugwilder@a...

> > > Resent-Date: Wed, 15 Jan 2003 20:26:05 -0600

> > >

> > > Hi a,

> > >

> > > Are you seeing an endocrinologist? That's probably the best

> > > specialist for Cameron to see. Besides what Jodi mentioned,

I'd also

> > > ask about a feeding tube. What kind of weight gain would the

doctor

> > > like him to have on Periactin, and if he doesn't achieve that,

should

> > > he have a feeding tube. What is the timeframe for that (3

months, 6

> > > months)? Will the doctor monitor him every 3 months?

> > >

> > > You could also ask him about growth hormone therapy. You don't

need

> > > to make a decision on this anytime soon, but it would be good

if the

> > > doctor could give you a lot of information about the advantages

and

> > > disadvantages, potential side effects, his experience with GHT,

and

> > > what he sees as Cameron's long-term treatment options.

> > >

> > > It would also be nice if he could give you his e-mail address

so you

> > > can contact him easily. We only send our doctor an e-mail

very, very

> > > occasionally, but it's good to have just so we don't feel like

we

> > > have to remember absolutely everything at the appointment or

wait

> > > another 3 months to see him.

> > >

> > > (Tyler, nearly 4, 24.5 lbs, 35.5 " ; , 2 1/2; Kelsey,

8 mos)

> > >

January 16, 2003

Barging?? I am always open to information from anyone who has experience or

just 2 cents!!

She is currently on concentrated Neosure and I add Karo syrup. It has

remedied the problem, it just seems like there should be a permanent

solution! It also seems to be the most calories per ounce using formula.

We decided to try this before a prescription. Nonetheless, I really

appreciate your thoughts and will definately keep it in mind.

We have been blessed with no reflux to date!

Thanks!!

Dayna, Mom to ALyssa

Re: From Cameron's mom

> > > > Resent-From: laura@b...

> > > > Resent-To: bugwilder@a...

> > > > Resent-Date: Wed, 15 Jan 2003 20:26:05 -0600

> > > >

> > > > Hi a,

> > > >

> > > > Are you seeing an endocrinologist? That's probably the best

> > > > specialist for Cameron to see. Besides what Jodi mentioned,

> I'd also

> > > > ask about a feeding tube. What kind of weight gain would the

> doctor

> > > > like him to have on Periactin, and if he doesn't achieve that,

> should

> > > > he have a feeding tube. What is the timeframe for that (3

> months, 6

> > > > months)? Will the doctor monitor him every 3 months?

> > > >

> > > > You could also ask him about growth hormone therapy. You don't

> need

> > > > to make a decision on this anytime soon, but it would be good

> if the

> > > > doctor could give you a lot of information about the advantages

> and

> > > > disadvantages, potential side effects, his experience with GHT,

> and

> > > > what he sees as Cameron's long-term treatment options.

> > > >

> > > > It would also be nice if he could give you his e-mail address

> so you

> > > > can contact him easily. We only send our doctor an e-mail

> very, very

> > > > occasionally, but it's good to have just so we don't feel like

> we

> > > > have to remember absolutely everything at the appointment or

> wait

> > > > another 3 months to see him.

> > > >

> > > > (Tyler, nearly 4, 24.5 lbs, 35.5 " ; , 2 1/2; Kelsey,

> 8 mos)

> > > >

January 16, 2003

Constipation can be a sign of low motility through the intestinal tract.

To clarify, the delayed gastric emptying is due to the stomach being too

thick and narrow at it's exit to the intestine. If I am incorrect someone

please correct me.

For constipation I always gave my son a few spoonfuls of prunes with every

meal. the prune juice did not work twice a day because he would still be

constipated from the meal he did not have prunes with. My son is non RSS.

Good Luck and keep asking questions.

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

Reply-To: RSS-Support

Date: Thu, 16 Jan 2003 13:38:44 -0600

To: RSS-Support

Subject: Re: delayed gastric emptying

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Thu, 16 Jan 2003 13:30:01 -0600

,

Thank you so much for all of the information. Does the narrow intestine

cause difficulties with hard stools?? We have a terrible time with Alyssa

being constipated.

Thanks again, Dayna

Re: From Cameron's mom

> > Resent-From: laura@...

> > Resent-To: bugwilder@...

> > Resent-Date: Wed, 15 Jan 2003 20:26:05 -0600

> >

> > Hi a,

> >

> > Are you seeing an endocrinologist? That's probably the best

> > specialist for Cameron to see. Besides what Jodi mentioned, I'd also

> > ask about a feeding tube. What kind of weight gain would the doctor

> > like him to have on Periactin, and if he doesn't achieve that, should

> > he have a feeding tube. What is the timeframe for that (3 months, 6

> > months)? Will the doctor monitor him every 3 months?

> >

> > You could also ask him about growth hormone therapy. You don't need

> > to make a decision on this anytime soon, but it would be good if the

> > doctor could give you a lot of information about the advantages and

> > disadvantages, potential side effects, his experience with GHT, and

> > what he sees as Cameron's long-term treatment options.

> >

> > It would also be nice if he could give you his e-mail address so you

> > can contact him easily. We only send our doctor an e-mail very, very

> > occasionally, but it's good to have just so we don't feel like we

> > have to remember absolutely everything at the appointment or wait

> > another 3 months to see him.

> >

> > (Tyler, nearly 4, 24.5 lbs, 35.5 " ; , 2 1/2; Kelsey, 8 mos)

> >

January 16, 2003

Dayna:

Lactulose is an rx.

love

mom

Re: From Cameron's mom

> > Resent-From: laura@...

> > Resent-To: bugwilder@...

> > Resent-Date: Wed, 15 Jan 2003 20:26:05 -0600

> >

> > Hi a,

> >

> > Are you seeing an endocrinologist? That's probably the best

> > specialist for Cameron to see. Besides what Jodi mentioned, I'd also

> > ask about a feeding tube. What kind of weight gain would the doctor

> > like him to have on Periactin, and if he doesn't achieve that, should

> > he have a feeding tube. What is the timeframe for that (3 months, 6

> > months)? Will the doctor monitor him every 3 months?

> >

> > You could also ask him about growth hormone therapy. You don't need

> > to make a decision on this anytime soon, but it would be good if the

> > doctor could give you a lot of information about the advantages and

> > disadvantages, potential side effects, his experience with GHT, and

> > what he sees as Cameron's long-term treatment options.

> >

> > It would also be nice if he could give you his e-mail address so you

> > can contact him easily. We only send our doctor an e-mail very, very

> > occasionally, but it's good to have just so we don't feel like we

> > have to remember absolutely everything at the appointment or wait

> > another 3 months to see him.

> >

> > (Tyler, nearly 4, 24.5 lbs, 35.5 " ; , 2 1/2; Kelsey, 8 mos)

> >

January 16, 2003

I thought I would throw a few questions out regarding this topic because our son

Jonah has been dealing with constipation for a while now. We have started

putting flaxseed oil in his food which seems to help (incidentally, this is very

high in calories), but his stool is still hard. He is going more, but it is

hard. We have also added acidophilus to his food. Anyway, this is one problem,

but the other one is that Jonah gets congested when he has his bottle and the

gastro doctor thinks it is reflux so she had him on pepcid. We stopped the

pepcid because it did not seem to do much. Can someone tell me what their

experience with reflux is because other than the congestion, Jonah does not spit

up.? We are thinking maybe it is an allergy or just something to do with the

formula. We are going back to the gastro doctor to see if there are any GI

problems as the gastro doctor never actually did any tests. We are concerned

now because Jonah is at a place where he is not gaining and growing enough and

his endo is thinking of starting GH, but first we have to see what is happening

with his digestion; is there a problem or is he just not absorbing. Our doctor

was not so enthusiastic about Periactin.

I hope this makes sense and someone can give us to advice. All this is making

us anxious.

and Gene(parents of Jonah, age 16 months, RSS)

Re: From Cameron's mom

> > > > Resent-From: laura@b...

> > > > Resent-To: bugwilder@a...

> > > > Resent-Date: Wed, 15 Jan 2003 20:26:05 -0600

> > > >

> > > > Hi a,

> > > >

> > > > Are you seeing an endocrinologist? That's probably the best

> > > > specialist for Cameron to see. Besides what Jodi mentioned,

> I'd also

> > > > ask about a feeding tube. What kind of weight gain would the

> doctor

> > > > like him to have on Periactin, and if he doesn't achieve that,

> should

> > > > he have a feeding tube. What is the timeframe for that (3

> months, 6

> > > > months)? Will the doctor monitor him every 3 months?

> > > >

> > > > You could also ask him about growth hormone therapy. You don't

> need

> > > > to make a decision on this anytime soon, but it would be good

> if the

> > > > doctor could give you a lot of information about the advantages

> and

> > > > disadvantages, potential side effects, his experience with GHT,

> and

> > > > what he sees as Cameron's long-term treatment options.

> > > >

> > > > It would also be nice if he could give you his e-mail address

> so you

> > > > can contact him easily. We only send our doctor an e-mail

> very, very

> > > > occasionally, but it's good to have just so we don't feel like

> we

> > > > have to remember absolutely everything at the appointment or

> wait

> > > > another 3 months to see him.

> > > >

> > > > (Tyler, nearly 4, 24.5 lbs, 35.5 " ; , 2 1/2; Kelsey,

> 8 mos)

> > > >

January 17, 2003

Hi ,

I am, by no means, an expert on this subject, but I do know that you do

not have to see spit up, for the child to be refluxing. rarely spit

up, but he had severe reflux. Likewise, we were told that just because a

child spits up, it does not mean that they suffer from reflux.

Dr H feels that, despite the Nissen fundoplication, is still

refluxing, and then micro-aspirating, causing irritation in his lungs

(especially the R side). Some of the things she said to watch for are a

preference for laying on the R side, repeated R side lung irritation and/or

wheezing, arching, and chewing, when there is nothing present in B's mouth.

Does Jonah have the same congestion problems, if he drinks from a cup,

sitting in an upright position?

I hope this helps.

Pat (g-ma to

January 19, 2003

Hi Pat,

Thank you for writing. I too have heard that about reflux, but I was not sure

about it. We are seeing the gastro doctor on Friday and hopefully we will have

some answers. She has always thought he had some reflux, but this was never

confirmed with any tests. We are doing to try and find out if Jonah is

absorbing his food and try to figure out why he has been so constipated. What

is a Nissen fundoplication? Actually, no Jonah does not get congested when he

is sitting up drinking from a cup. We try to give him the bottle in the most

upright position, but I guess he is still somewhat reclined.

Anyway, thanks again for all your help and I hope is doing well. We

hope to know more on Friday.