Delayed Gastric Emptying

[Guest guest]

Any one out there with a child with delayed gastric emptying? Henry's stomach emptied 1/2 in 122 minutes with normal from 60-90 minutes. This is considered mild but he will not each much at one sitting so we are not sure how this is affecting him.

I'd love to hear others experiences with this.

Thanks,

Betsy mom to Henry unspecified FOD 4 yrs old

[Guest guest]

Hi Betsy,

My daughter is 5 1/2 and also has delayed emptying. At 15 months she had a pyloroplasty ( surgical procedure) done to correct it but she still is not emptying properly. She takes Reglan to help this but I dont think its doing to much.

As for the lack of appetite, Miranda has no desire to eat and is J tube fed. every once in a while she will suprise us and take a bite or two of something but for the most part, its minimal. She is tube dependant.

Delayed Gastric Emptying

Any one out there with a child with delayed gastric emptying? Henry's stomach emptied 1/2 in 122 minutes with normal from 60-90 minutes. This is considered mild but he will not each much at one sitting so we are not sure how this is affecting him.

I'd love to hear others experiences with this.

Thanks,

Betsy mom to Henry unspecified FOD 4 yrs oldPlease contact mito-owner with any problems or questions.

[Guest guest]

When was one month old, his gastric emptying study showed only 33

percent emptying after 1.5 hours, with the normal shown to be 50 percent or

greater at one hour to one and one half hours. He later had a fundo, as did

, but still refluxed. Since being on the Bicitra, metabolic diet,

Carnitor, they have not noticed any reflux at all and we are even trying

off of his proton pump inhibitor (Prilosec/Nexium) with good results.

He remains on his Gastrocrom however.

Dena (enjoying " meeting " in person many of the list families here in Dallas!)

[Guest guest]

When was one month old, his gastric emptying study showed only 33

percent emptying after 1.5 hours, with the normal shown to be 50 percent or

greater at one hour to one and one half hours. He later had a fundo, as did

, but still refluxed. Since being on the Bicitra, metabolic diet,

Carnitor, they have not noticed any reflux at all and we are even trying

off of his proton pump inhibitor (Prilosec/Nexium) with good results.

He remains on his Gastrocrom however.

Dena (enjoying " meeting " in person many of the list families here in Dallas!)

[Guest guest]

When was one month old, his gastric emptying study showed only 33

percent emptying after 1.5 hours, with the normal shown to be 50 percent or

greater at one hour to one and one half hours. He later had a fundo, as did

, but still refluxed. Since being on the Bicitra, metabolic diet,

Carnitor, they have not noticed any reflux at all and we are even trying

off of his proton pump inhibitor (Prilosec/Nexium) with good results.

He remains on his Gastrocrom however.

Dena (enjoying " meeting " in person many of the list families here in Dallas!)

[Guest guest]

has a delay in emptying...it was 60% full after two hours..tested when she was a few months old. She is now 4 1/2. She also has reflux. She takes Prilosec and Reglan. It seems to be working. is also on the ketogenic diet to give her alternative enegry since she has PDH deficiency.

Amy (mom to )

Delayed Gastric Emptying

Any one out there with a child with delayed gastric emptying? Henry's stomach emptied 1/2 in 122 minutes with normal from 60-90 minutes. This is considered mild but he will not each much at one sitting so we are not sure how this is affecting him.

I'd love to hear others experiences with this.

Thanks,

Betsy mom to Henry unspecified FOD 4 yrs oldPlease contact mito-owner with any problems or questions.

[Guest guest]

has a delay in emptying...it was 60% full after two hours..tested when she was a few months old. She is now 4 1/2. She also has reflux. She takes Prilosec and Reglan. It seems to be working. is also on the ketogenic diet to give her alternative enegry since she has PDH deficiency.

Amy (mom to )

Delayed Gastric Emptying

Any one out there with a child with delayed gastric emptying? Henry's stomach emptied 1/2 in 122 minutes with normal from 60-90 minutes. This is considered mild but he will not each much at one sitting so we are not sure how this is affecting him.

I'd love to hear others experiences with this.

Thanks,

Betsy mom to Henry unspecified FOD 4 yrs oldPlease contact mito-owner with any problems or questions.

[Guest guest]

In a message dated 6/8/2002 8:39:11 AM Eastern Daylight Time,

krystena@... writes:

<< f I am wrong about the Bicitra, do you know of any medication that does

such. He told me to figure out what medication it was and we would talk it

over.

>>

Hi Krystena,

First and foremost, I am NOT a doctor or a pharmacist. I do know that

Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically

addresses lactic acid. In fact, I know it is used to buffer ketoacids in

's case. I'd ask your doc or your pharmacist to explain this more

fully. *Anecdotally*, I know that many on the OAA list (with all sorts of

organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in

their children's leg pain getting better. That has been our experience.

's " cramps " went away with the Bicitra. needed the Bicitra

AND Carnitor before his improved.

What I have found, yet no one told us to expect it, is that **for **,

treating his acidosis (he has elevated urinary organic acids lactic acid, but

NOT blood level lactic acid, and he has extremely high ketone bodies) has

resulted in many of his other organ system problems (particularly GI and

pulmonary) improving IMMENSELY.) While we were previously treating reflux,

GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung

function), etc., all separately based on symptom, when the basic ketoacidosis

was treated for different reasons, everything (except muscle atrophy and heat

intolerance) improved. My personal opinion is that with the acidosis,

everything was " out of whack " and treating the acidosis eliminated the need

to treat a lot of those individual " symptoms. " But, again, I caution, this

might be unique to and 's ketone utilization disorder

situation. I do wonder if a lot of refractory reflux patients perhaps have

ketoacidosis though.....It's interesting that I don't see a single GI or

pulmonary doc here at the conference..although these are the specialists that

often see mito symptom patients before mito is considered. (reflux,

dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).

Hope this helps,

Dena

[Guest guest]

In a message dated 6/8/2002 8:39:11 AM Eastern Daylight Time,

krystena@... writes:

<< f I am wrong about the Bicitra, do you know of any medication that does

such. He told me to figure out what medication it was and we would talk it

over.

>>

Hi Krystena,

First and foremost, I am NOT a doctor or a pharmacist. I do know that

Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically

addresses lactic acid. In fact, I know it is used to buffer ketoacids in

's case. I'd ask your doc or your pharmacist to explain this more

fully. *Anecdotally*, I know that many on the OAA list (with all sorts of

organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in

their children's leg pain getting better. That has been our experience.

's " cramps " went away with the Bicitra. needed the Bicitra

AND Carnitor before his improved.

What I have found, yet no one told us to expect it, is that **for **,

treating his acidosis (he has elevated urinary organic acids lactic acid, but

NOT blood level lactic acid, and he has extremely high ketone bodies) has

resulted in many of his other organ system problems (particularly GI and

pulmonary) improving IMMENSELY.) While we were previously treating reflux,

GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung

function), etc., all separately based on symptom, when the basic ketoacidosis

was treated for different reasons, everything (except muscle atrophy and heat

intolerance) improved. My personal opinion is that with the acidosis,

everything was " out of whack " and treating the acidosis eliminated the need

to treat a lot of those individual " symptoms. " But, again, I caution, this

might be unique to and 's ketone utilization disorder

situation. I do wonder if a lot of refractory reflux patients perhaps have

ketoacidosis though.....It's interesting that I don't see a single GI or

pulmonary doc here at the conference..although these are the specialists that

often see mito symptom patients before mito is considered. (reflux,

dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).

Hope this helps,

Dena

[Guest guest]

In a message dated 6/8/2002 8:39:11 AM Eastern Daylight Time,

krystena@... writes:

<< f I am wrong about the Bicitra, do you know of any medication that does

such. He told me to figure out what medication it was and we would talk it

over.

>>

Hi Krystena,

First and foremost, I am NOT a doctor or a pharmacist. I do know that

Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically

addresses lactic acid. In fact, I know it is used to buffer ketoacids in

's case. I'd ask your doc or your pharmacist to explain this more

fully. *Anecdotally*, I know that many on the OAA list (with all sorts of

organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in

their children's leg pain getting better. That has been our experience.

's " cramps " went away with the Bicitra. needed the Bicitra

AND Carnitor before his improved.

What I have found, yet no one told us to expect it, is that **for **,

treating his acidosis (he has elevated urinary organic acids lactic acid, but

NOT blood level lactic acid, and he has extremely high ketone bodies) has

resulted in many of his other organ system problems (particularly GI and

pulmonary) improving IMMENSELY.) While we were previously treating reflux,

GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung

function), etc., all separately based on symptom, when the basic ketoacidosis

was treated for different reasons, everything (except muscle atrophy and heat

intolerance) improved. My personal opinion is that with the acidosis,

everything was " out of whack " and treating the acidosis eliminated the need

to treat a lot of those individual " symptoms. " But, again, I caution, this

might be unique to and 's ketone utilization disorder

situation. I do wonder if a lot of refractory reflux patients perhaps have

ketoacidosis though.....It's interesting that I don't see a single GI or

pulmonary doc here at the conference..although these are the specialists that

often see mito symptom patients before mito is considered. (reflux,

dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).

Hope this helps,

Dena

[Guest guest]

Hey Dena,

What is: Bicitra used for? Is that the drug that takes down the lactic acid?

I was talking to the resident who works with my son's dr. yesterday and was trying to tell him about a drug that takes away the lactic acid. I think it was you I was thinking of. Please correct me if I am wrong. I was thinking you said something like that. They have upped Caden's Neurontin to a pretty high dose! He has so much pain in his legs (mostly after exercise and has shown elevated lactic acid before). I think he could benefit from something that would ward off the lactic acid buildup instead of a pain medication.

If I am wrong about the Bicitra, do you know of any medication that does such. He told me to figure out what medication it was and we would talk it over.

Thanks for your help,

Krystena s

Caden 3 GAII

Re: Delayed Gastric Emptying

When was one month old, his gastric emptying study showed only 33 percent emptying after 1.5 hours, with the normal shown to be 50 percent or greater at one hour to one and one half hours. He later had a fundo, as did , but still refluxed. Since being on the Bicitra, metabolic diet, Carnitor, they have not noticed any reflux at all and we are even trying off of his proton pump inhibitor (Prilosec/Nexium) with good results. He remains on his Gastrocrom however.Dena (enjoying "meeting" in person many of the list families here in Dallas!)Please contact mito-owner with any problems or questions.

[Guest guest]

Hey Dena,

What is: Bicitra used for? Is that the drug that takes down the lactic acid?

I was talking to the resident who works with my son's dr. yesterday and was trying to tell him about a drug that takes away the lactic acid. I think it was you I was thinking of. Please correct me if I am wrong. I was thinking you said something like that. They have upped Caden's Neurontin to a pretty high dose! He has so much pain in his legs (mostly after exercise and has shown elevated lactic acid before). I think he could benefit from something that would ward off the lactic acid buildup instead of a pain medication.

If I am wrong about the Bicitra, do you know of any medication that does such. He told me to figure out what medication it was and we would talk it over.

Thanks for your help,

Krystena s

Caden 3 GAII

Re: Delayed Gastric Emptying

When was one month old, his gastric emptying study showed only 33 percent emptying after 1.5 hours, with the normal shown to be 50 percent or greater at one hour to one and one half hours. He later had a fundo, as did , but still refluxed. Since being on the Bicitra, metabolic diet, Carnitor, they have not noticed any reflux at all and we are even trying off of his proton pump inhibitor (Prilosec/Nexium) with good results. He remains on his Gastrocrom however.Dena (enjoying "meeting" in person many of the list families here in Dallas!)Please contact mito-owner with any problems or questions.

[Guest guest]

Hey Dena,

What is: Bicitra used for? Is that the drug that takes down the lactic acid?

I was talking to the resident who works with my son's dr. yesterday and was trying to tell him about a drug that takes away the lactic acid. I think it was you I was thinking of. Please correct me if I am wrong. I was thinking you said something like that. They have upped Caden's Neurontin to a pretty high dose! He has so much pain in his legs (mostly after exercise and has shown elevated lactic acid before). I think he could benefit from something that would ward off the lactic acid buildup instead of a pain medication.

If I am wrong about the Bicitra, do you know of any medication that does such. He told me to figure out what medication it was and we would talk it over.

Thanks for your help,

Krystena s

Caden 3 GAII

Re: Delayed Gastric Emptying

When was one month old, his gastric emptying study showed only 33 percent emptying after 1.5 hours, with the normal shown to be 50 percent or greater at one hour to one and one half hours. He later had a fundo, as did , but still refluxed. Since being on the Bicitra, metabolic diet, Carnitor, they have not noticed any reflux at all and we are even trying off of his proton pump inhibitor (Prilosec/Nexium) with good results. He remains on his Gastrocrom however.Dena (enjoying "meeting" in person many of the list families here in Dallas!)Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks Dena! May I print your email to take with me?

krystena

Re: Delayed Gastric Emptying

<< f I am wrong about the Bicitra, do you know of any medication that does such. He told me to figure out what medication it was and we would talk it over. >>Hi Krystena,First and foremost, I am NOT a doctor or a pharmacist. I do know that Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically addresses lactic acid. In fact, I know it is used to buffer ketoacids in 's case. I'd ask your doc or your pharmacist to explain this more fully. *Anecdotally*, I know that many on the OAA list (with all sorts of organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in their children's leg pain getting better. That has been our experience. 's "cramps" went away with the Bicitra. needed the Bicitra AND Carnitor before his improved. What I have found, yet no one told us to expect it, is that **for **, treating his acidosis (he has elevated urinary organic acids lactic acid, but NOT blood level lactic acid, and he has extremely high ketone bodies) has resulted in many of his other organ system problems (particularly GI and pulmonary) improving IMMENSELY.) While we were previously treating reflux, GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung function), etc., all separately based on symptom, when the basic ketoacidosis was treated for different reasons, everything (except muscle atrophy and heat intolerance) improved. My personal opinion is that with the acidosis, everything was "out of whack" and treating the acidosis eliminated the need to treat a lot of those individual "symptoms." But, again, I caution, this might be unique to and 's ketone utilization disorder situation. I do wonder if a lot of refractory reflux patients perhaps have ketoacidosis though.....It's interesting that I don't see a single GI or pulmonary doc here at the conference..although these are the specialists that often see mito symptom patients before mito is considered. (reflux, dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).Hope this helps,DenaPlease contact mito-owner with any problems or questions.

[Guest guest]

Anyone has permission to print any of my personal emails to take with them.

I don't believe that I should post anything on the mito (or other open

listserv) that I don't want others to read, since you never know who is

lurking on the list anyway. ;-)

I've found that out here at the mito conference, since unfortunately, I found

out I have somewhat of a " reputation " because of all the MSBP/PCF info I've o

[Guest guest]

Anyone has permission to print any of my personal emails to take with them.

I don't believe that I should post anything on the mito (or other open

listserv) that I don't want others to read, since you never know who is

lurking on the list anyway. ;-)

I've found that out here at the mito conference, since unfortunately, I found

out I have somewhat of a " reputation " because of all the MSBP/PCF info I've o

[Guest guest]

Dena

I don't know alot about ketoacidosis, but I do know they have talked a lot

about his ketones being out of wack, when acidodic. I'll have to ask. Just

had never heard of it.

See ya later bye

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

Dena

I don't know alot about ketoacidosis, but I do know they have talked a lot

about his ketones being out of wack, when acidodic. I'll have to ask. Just

had never heard of it.

See ya later bye

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

Dena

I don't know alot about ketoacidosis, but I do know they have talked a lot

about his ketones being out of wack, when acidodic. I'll have to ask. Just

had never heard of it.

See ya later bye

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

> Any one out there with a child with delayed gastric emptying?

Henry's stomach emptied 1/2 in 122 minutes with normal from 60-90

minutes. This is considered mild but he will not each much at one

sitting so we are not sure how this is affecting him.

> I'd love to hear others experiences with this.

> Thanks,

> Betsy mom to Henry unspecified FOD 4 yrs old

Hi Betsy my name is melissa and im new with this mito stuff, but

Hailee was diagnosed with severe delayed stomach emptying, when they

did the test her stomach hadnt even begun to empty by the end of the

test, but the surgeon we have is a jerk and wont do surgury she needs

to have that fixed and have a fundal when they did her g tube they

didnt give her one and she is refluxing all feeds and meds.

[Guest guest]

All three of my kids were diagnosed with delayed gastric emptying,

ranging from 20% to only 9% emptied after 120 minutes. We treated them

with a variety of medicines to improve motility and small frequent

feedings. We fed small volumes every two hours, and one of them had

tube feedings. Eventually when emptying worsening or growth became

severely affected, two of them had surgery to improve the ability of the

stomach to open or stay open.

Jeannine

and Betsy Furler wrote:

> Any one out there with a child with delayed gastric emptying? Henry's

> stomach emptied 1/2 in 122 minutes with normal from 60-90 minutes.

> This is considered mild but he will not each much at one sitting so we

> are not sure how this is affecting him.I'd love to hear others

> experiences with this.

[Guest guest]

All three of my kids were diagnosed with delayed gastric emptying,

ranging from 20% to only 9% emptied after 120 minutes. We treated them

with a variety of medicines to improve motility and small frequent

feedings. We fed small volumes every two hours, and one of them had

tube feedings. Eventually when emptying worsening or growth became

severely affected, two of them had surgery to improve the ability of the

stomach to open or stay open.

Jeannine

and Betsy Furler wrote:

> Any one out there with a child with delayed gastric emptying? Henry's

> stomach emptied 1/2 in 122 minutes with normal from 60-90 minutes.

> This is considered mild but he will not each much at one sitting so we

> are not sure how this is affecting him.I'd love to hear others

> experiences with this.

[Guest guest]

Anne K Juhlmann wrote:

> The only time surgery will help is when the delay in emptying is mild or there

> is something anatomically not right. (as in pyloric stenosis in infancy).

Actually the surgery did work for both of my girls for different reasons, and I

don't think their emptying problems were mild. My youngest was actually on TPN

(intravenous feedings) after we could no longer pass a feeding tube thru her

pylorus. Both of my girl's stomachs were 90% full after two hours of scan,

because there was no longer enough motility in the stomach and pylorus to cause

the pylorus to open. This was observed thru endoscopy and emptying studies, and

the surgeon also noted that physiologically the pylorus was normal. This may

only work in a small percentage of cases, and definately has it's drawbacks,

such as a dumping syndrome, but it was our only alternative for my youngest.

I think a lot depends upon where the dysmotility is, and the nature of it, as to

whether this procedure will help or worsen the condition.

Jeannine

[Guest guest]

Anne K Juhlmann wrote:

> The only time surgery will help is when the delay in emptying is mild or there

> is something anatomically not right. (as in pyloric stenosis in infancy).

Actually the surgery did work for both of my girls for different reasons, and I

don't think their emptying problems were mild. My youngest was actually on TPN

(intravenous feedings) after we could no longer pass a feeding tube thru her

pylorus. Both of my girl's stomachs were 90% full after two hours of scan,

because there was no longer enough motility in the stomach and pylorus to cause

the pylorus to open. This was observed thru endoscopy and emptying studies, and

the surgeon also noted that physiologically the pylorus was normal. This may

only work in a small percentage of cases, and definately has it's drawbacks,

such as a dumping syndrome, but it was our only alternative for my youngest.

I think a lot depends upon where the dysmotility is, and the nature of it, as to

whether this procedure will help or worsen the condition.

Jeannine

[Guest guest]

Anne K Juhlmann wrote:

> The only time surgery will help is when the delay in emptying is mild or there

> is something anatomically not right. (as in pyloric stenosis in infancy).

Actually the surgery did work for both of my girls for different reasons, and I

don't think their emptying problems were mild. My youngest was actually on TPN

(intravenous feedings) after we could no longer pass a feeding tube thru her

pylorus. Both of my girl's stomachs were 90% full after two hours of scan,

because there was no longer enough motility in the stomach and pylorus to cause

the pylorus to open. This was observed thru endoscopy and emptying studies, and

the surgeon also noted that physiologically the pylorus was normal. This may

only work in a small percentage of cases, and definately has it's drawbacks,

such as a dumping syndrome, but it was our only alternative for my youngest.

I think a lot depends upon where the dysmotility is, and the nature of it, as to

whether this procedure will help or worsen the condition.

Jeannine