Gastroparesis

T

TreasureGoddess

Member
I've cross posted this in the adult's section to try to get more responses...<br><br>Posts on this subject seem a few years old.  My son's almost 12 and has
been diagnosed with "severe delay in gastric emptying" aka
Gastroparesis.  We've been fighting with the GI clinic to do anything
other than just having him do more cleanouts....every appt or phone call
or ER visit ended with "go home, do another cleanout and follow up with
your GI dr."  We've followed up and followed up and have FINALLY found
out WHAT is causing my son's pain, vomiting and partial blockages. <br><br>I'm
battling the hospital and the GI dept to try to actually DO something. 
I'm having to research online and see there's a list of meds, including
Reglan.  He's been on arithromycin for a few weeks now and it's NOT
working.  He's currently in the hospital with his first NJ tube, down
past the stomach so even though his body is getting nutrition, his
stomach is empty and he feels like he's starving to death.  They were
going to send us home with the tube, told me to figure out how to come
up with a pump & the formula & oh, it's not covered by
insurance.... When I asked what the PLAN was, why after this he won't go
immediately back to the pain & nausea, etc and was just told to
"follow up with your GI dr."  I asked HOW LONG on the tube only with no
food, and guess what I was told...."follow up with your GI dr."  <br><br>I
said I'm not leaving this hospital without a plan and got the patient
advocate's office involved.  I'm hoping it will help in our negotiations
for someone to look at this kid and offer a different solution.<br><br>Has
anyone else been working with Gastroparesis lately?  Anything work?  My
son's already been on miralax 3x/week, amitiza (increased dose for last
2 weeks) and arithromycin.  Before this his guts were FINE.  He had
symptoms of this 1.5 years ago along with flare-up of mrsa in his lungs
and he was treated with a golytely cleanout & vancomycin IV for the
lung infections.  I've read that infections can be a cause of it, maybe
the IV meds could help this time too?  Drs don't seem to think that's an
option.  <br><br>ANY COMMENTS would be appreciated.  Sorry for the long
post, it's been a long 2 months of getting the runaround at the local
children's hospital/cf clinic.  I've been asking the CF drs for input or
ideas and they just say "that's the GI dept".  <br>
 
T

TreasureGoddess

Member
I've cross posted this in the adult's section to try to get more responses...<br><br>Posts on this subject seem a few years old. My son's almost 12 and has
been diagnosed with "severe delay in gastric emptying" aka
Gastroparesis. We've been fighting with the GI clinic to do anything
other than just having him do more cleanouts....every appt or phone call
or ER visit ended with "go home, do another cleanout and follow up with
your GI dr." We've followed up and followed up and have FINALLY found
out WHAT is causing my son's pain, vomiting and partial blockages. <br><br>I'm
battling the hospital and the GI dept to try to actually DO something.
I'm having to research online and see there's a list of meds, including
Reglan. He's been on arithromycin for a few weeks now and it's NOT
working. He's currently in the hospital with his first NJ tube, down
past the stomach so even though his body is getting nutrition, his
stomach is empty and he feels like he's starving to death. They were
going to send us home with the tube, told me to figure out how to come
up with a pump & the formula & oh, it's not covered by
insurance.... When I asked what the PLAN was, why after this he won't go
immediately back to the pain & nausea, etc and was just told to
"follow up with your GI dr." I asked HOW LONG on the tube only with no
food, and guess what I was told...."follow up with your GI dr." <br><br>I
said I'm not leaving this hospital without a plan and got the patient
advocate's office involved. I'm hoping it will help in our negotiations
for someone to look at this kid and offer a different solution.<br><br>Has
anyone else been working with Gastroparesis lately? Anything work? My
son's already been on miralax 3x/week, amitiza (increased dose for last
2 weeks) and arithromycin. Before this his guts were FINE. He had
symptoms of this 1.5 years ago along with flare-up of mrsa in his lungs
and he was treated with a golytely cleanout & vancomycin IV for the
lung infections. I've read that infections can be a cause of it, maybe
the IV meds could help this time too? Drs don't seem to think that's an
option. <br><br>ANY COMMENTS would be appreciated. Sorry for the long
post, it's been a long 2 months of getting the runaround at the local
children's hospital/cf clinic. I've been asking the CF drs for input or
ideas and they just say "that's the GI dept". <br>
 
T

TreasureGoddess

Member
I've cross posted this in the adult's section to try to get more responses...<br><br>Posts on this subject seem a few years old. My son's almost 12 and has
been diagnosed with "severe delay in gastric emptying" aka
Gastroparesis. We've been fighting with the GI clinic to do anything
other than just having him do more cleanouts....every appt or phone call
or ER visit ended with "go home, do another cleanout and follow up with
your GI dr." We've followed up and followed up and have FINALLY found
out WHAT is causing my son's pain, vomiting and partial blockages. <br><br>I'm
battling the hospital and the GI dept to try to actually DO something.
I'm having to research online and see there's a list of meds, including
Reglan. He's been on arithromycin for a few weeks now and it's NOT
working. He's currently in the hospital with his first NJ tube, down
past the stomach so even though his body is getting nutrition, his
stomach is empty and he feels like he's starving to death. They were
going to send us home with the tube, told me to figure out how to come
up with a pump & the formula & oh, it's not covered by
insurance.... When I asked what the PLAN was, why after this he won't go
immediately back to the pain & nausea, etc and was just told to
"follow up with your GI dr." I asked HOW LONG on the tube only with no
food, and guess what I was told...."follow up with your GI dr." <br><br>I
said I'm not leaving this hospital without a plan and got the patient
advocate's office involved. I'm hoping it will help in our negotiations
for someone to look at this kid and offer a different solution.<br><br>Has
anyone else been working with Gastroparesis lately? Anything work? My
son's already been on miralax 3x/week, amitiza (increased dose for last
2 weeks) and arithromycin. Before this his guts were FINE. He had
symptoms of this 1.5 years ago along with flare-up of mrsa in his lungs
and he was treated with a golytely cleanout & vancomycin IV for the
lung infections. I've read that infections can be a cause of it, maybe
the IV meds could help this time too? Drs don't seem to think that's an
option. <br><br>ANY COMMENTS would be appreciated. Sorry for the long
post, it's been a long 2 months of getting the runaround at the local
children's hospital/cf clinic. I've been asking the CF drs for input or
ideas and they just say "that's the GI dept". <br>
 
M

MamaDee

Guest
I don't have any real ideas for you, but my friends son who is just over 1 year old has been battling gastroparesis since birth. He was on nj tube, then gj, and now just a g tube for draining and sometimes a stomach pumping. He is now eating everything orally, but that is very recent. They had a very hard time getting answers that were suitable for them them as well and considered going to Ohio to see a gastroparesis specialist. I really hope you get the answers you need ASAP!
 
M

MamaDee

Guest
I don't have any real ideas for you, but my friends son who is just over 1 year old has been battling gastroparesis since birth. He was on nj tube, then gj, and now just a g tube for draining and sometimes a stomach pumping. He is now eating everything orally, but that is very recent. They had a very hard time getting answers that were suitable for them them as well and considered going to Ohio to see a gastroparesis specialist. I really hope you get the answers you need ASAP!
 
M

MamaDee

Guest
I don't have any real ideas for you, but my friends son who is just over 1 year old has been battling gastroparesis since birth. He was on nj tube, then gj, and now just a g tube for draining and sometimes a stomach pumping. He is now eating everything orally, but that is very recent. They had a very hard time getting answers that were suitable for them them as well and considered going to Ohio to see a gastroparesis specialist. I really hope you get the answers you need ASAP!
 
P

Printer

Active member
You didn't mention enzymes. Is your son taking enzymes to assist in his digestion of the food he eats? Is his GI a CF doctor as well?

Bill
 
P

Printer

Active member
You didn't mention enzymes. Is your son taking enzymes to assist in his digestion of the food he eats? Is his GI a CF doctor as well?

Bill
 
P

Printer

Active member
You didn't mention enzymes. Is your son taking enzymes to assist in his digestion of the food he eats? Is his GI a CF doctor as well?
<br />
<br />Bill
 
T

TreasureGoddess

Member
Joe's on enzymes for his food, any gi issues (mild in the past) had been dealt with by our CF docs and CF nutritionist. Now the GI team here does NOT have a CF specialist in it, but does have a mobility expert. We've finally gotten the hospital to see that there's a real issue here and that because of the CF can't just be sent home and figured out on our own.

We're using amitiza & miralax for motility, erythromycin to empty the stomach and he's got an nj tube for feeding. He's had multiple cleanouts over the last 2 months (they just saw the CF and said do another cleanout.....) until we figured out that this ISN'T a simple CF slow digestion issue.

Sounds like we've now got a plan and a lot more adults have this issue than we'd realized. I'm getting some good info on the post in the adults section.

Part of our main issue was the CF docs said it was a GI issue. The GI docs said it was a CF issue and no one would help out. cripes! I got the patient advocate office involved and now there's a little communciation between the two fields, but still not to the level needed.

Our goal now is to get my child healthy enough to head home and be able to tolerate a little bit of food, and then find somewhere that specializes in this and get him seen by that team.

What's helped the MOST is hearing that people with CF DO ACTUALLY HAVE THIS ISSUE. We were told it didn't happen in CF to this level and that he's unusual. Actually, an intern called him a "special kid" and that since he had "special problems" they'd have to find a "special way" to make him feel better. I about punched her in the face (and I'm not the least bit violent) as my child was crying apologizing for his body not working right. OOOOOOHHHHHH I asked her to leave, talked with the advocate office and the attending doctor of the floor and said that she is NEVER to say that to another child or parent again. She also was telling me "I understand your feelings" over and over too.
wow.

Better care now that I've been very assertive that we're not settling for anything less than people working to HELP my child and not just put a bandaid on this situation and send us home to return in worse case yet again.
 
T

TreasureGoddess

Member
Joe's on enzymes for his food, any gi issues (mild in the past) had been dealt with by our CF docs and CF nutritionist. Now the GI team here does NOT have a CF specialist in it, but does have a mobility expert. We've finally gotten the hospital to see that there's a real issue here and that because of the CF can't just be sent home and figured out on our own.

We're using amitiza & miralax for motility, erythromycin to empty the stomach and he's got an nj tube for feeding. He's had multiple cleanouts over the last 2 months (they just saw the CF and said do another cleanout.....) until we figured out that this ISN'T a simple CF slow digestion issue.

Sounds like we've now got a plan and a lot more adults have this issue than we'd realized. I'm getting some good info on the post in the adults section.

Part of our main issue was the CF docs said it was a GI issue. The GI docs said it was a CF issue and no one would help out. cripes! I got the patient advocate office involved and now there's a little communciation between the two fields, but still not to the level needed.

Our goal now is to get my child healthy enough to head home and be able to tolerate a little bit of food, and then find somewhere that specializes in this and get him seen by that team.

What's helped the MOST is hearing that people with CF DO ACTUALLY HAVE THIS ISSUE. We were told it didn't happen in CF to this level and that he's unusual. Actually, an intern called him a "special kid" and that since he had "special problems" they'd have to find a "special way" to make him feel better. I about punched her in the face (and I'm not the least bit violent) as my child was crying apologizing for his body not working right. OOOOOOHHHHHH I asked her to leave, talked with the advocate office and the attending doctor of the floor and said that she is NEVER to say that to another child or parent again. She also was telling me "I understand your feelings" over and over too.
wow.

Better care now that I've been very assertive that we're not settling for anything less than people working to HELP my child and not just put a bandaid on this situation and send us home to return in worse case yet again.
 
T

TreasureGoddess

Member
Joe's on enzymes for his food, any gi issues (mild in the past) had been dealt with by our CF docs and CF nutritionist. Now the GI team here does NOT have a CF specialist in it, but does have a mobility expert. We've finally gotten the hospital to see that there's a real issue here and that because of the CF can't just be sent home and figured out on our own.
<br />
<br />We're using amitiza & miralax for motility, erythromycin to empty the stomach and he's got an nj tube for feeding. He's had multiple cleanouts over the last 2 months (they just saw the CF and said do another cleanout.....) until we figured out that this ISN'T a simple CF slow digestion issue.
<br />
<br />Sounds like we've now got a plan and a lot more adults have this issue than we'd realized. I'm getting some good info on the post in the adults section.
<br />
<br />Part of our main issue was the CF docs said it was a GI issue. The GI docs said it was a CF issue and no one would help out. cripes! I got the patient advocate office involved and now there's a little communciation between the two fields, but still not to the level needed.
<br />
<br />Our goal now is to get my child healthy enough to head home and be able to tolerate a little bit of food, and then find somewhere that specializes in this and get him seen by that team.
<br />
<br />What's helped the MOST is hearing that people with CF DO ACTUALLY HAVE THIS ISSUE. We were told it didn't happen in CF to this level and that he's unusual. Actually, an intern called him a "special kid" and that since he had "special problems" they'd have to find a "special way" to make him feel better. I about punched her in the face (and I'm not the least bit violent) as my child was crying apologizing for his body not working right. OOOOOOHHHHHH I asked her to leave, talked with the advocate office and the attending doctor of the floor and said that she is NEVER to say that to another child or parent again. She also was telling me "I understand your feelings" over and over too.
<br />wow.
<br />
<br />Better care now that I've been very assertive that we're not settling for anything less than people working to HELP my child and not just put a bandaid on this situation and send us home to return in worse case yet again.
<br />
 
M

Murgie

New member
Christine,
I am so impressed with your strength and fortitude in being a terrific advocate for Joe. I have not heard of these severe issues before and I have to ask you how you came to know this was much more than the regular digestive issues. Does Joe also have diabetes? Is his pancreas a culprit at all or is this all gastro, hope you dont mind my asking, but I have a 14 year old with stomach aches often and would like to be aware of anything beyond what we have been told. It is too bad a GI doctor is not on your CF team, that would be so helpful if they would all communicate, especially in your issue! Best wishes to you!
 
M

Murgie

New member
Christine,
I am so impressed with your strength and fortitude in being a terrific advocate for Joe. I have not heard of these severe issues before and I have to ask you how you came to know this was much more than the regular digestive issues. Does Joe also have diabetes? Is his pancreas a culprit at all or is this all gastro, hope you dont mind my asking, but I have a 14 year old with stomach aches often and would like to be aware of anything beyond what we have been told. It is too bad a GI doctor is not on your CF team, that would be so helpful if they would all communicate, especially in your issue! Best wishes to you!
 
M

Murgie

New member
Christine,
<br /> I am so impressed with your strength and fortitude in being a terrific advocate for Joe. I have not heard of these severe issues before and I have to ask you how you came to know this was much more than the regular digestive issues. Does Joe also have diabetes? Is his pancreas a culprit at all or is this all gastro, hope you dont mind my asking, but I have a 14 year old with stomach aches often and would like to be aware of anything beyond what we have been told. It is too bad a GI doctor is not on your CF team, that would be so helpful if they would all communicate, especially in your issue! Best wishes to you!
<br />
 
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