Gastroparesis

[Beccamom]

I realize that with any medication choise individuals must decide with their medical team risks versus benefits; however, my daughter took Reglan for over 4 years for gastroparesis and ended up with a facial tick (tardive dyskensia). You shoul read the FDA press release regarding Reglan, so you can make an informed decision for your child. This side affect was not known about when my daughter took Reglan. Tardive Dyskinesia is now the reason for a black box label on Reglan.
<br />http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm149533.htm
<br />
<br />My daughter did try Eurythromycin (sp?), which is from the same family as Zythromycin. Her gastroparethesis seems to improve with better mucus clearance and gets worst the more mucus she has in her system which is also associated with a decrease in PFTs. Overall getting more mucus out helps her lungs and digestive system.

 

[TreasureGoddess]

Thanks for all the great info! I finally got to talk with the main motility dr here and it sounds like he doesn't like the reglan because of the side effects. We're going to work HERE IN THE HOSPITAL for a while to see if my son can tolerate thicker liquids and soft foods with the erythromycin. He's already been on miralax 17g 3x/day and amitiza before the pain and issues got bad.

We've finally got the hospital to work WITH us and not just shoo us out the door saying "good luck with that" as they've been doing for the last 2 months. The doctor has discussed the domperidone as an option also.

We'd been told that people with CF usually didn't have this severe of GI issues and that it was rare. It helps SO MUCH for my son and for me to hear others have this and have found ways to deal with it.
THANKS!!

 

[TreasureGoddess]

Thanks for all the great info! I finally got to talk with the main motility dr here and it sounds like he doesn't like the reglan because of the side effects. We're going to work HERE IN THE HOSPITAL for a while to see if my son can tolerate thicker liquids and soft foods with the erythromycin. He's already been on miralax 17g 3x/day and amitiza before the pain and issues got bad.

We've finally got the hospital to work WITH us and not just shoo us out the door saying "good luck with that" as they've been doing for the last 2 months. The doctor has discussed the domperidone as an option also.

We'd been told that people with CF usually didn't have this severe of GI issues and that it was rare. It helps SO MUCH for my son and for me to hear others have this and have found ways to deal with it.
THANKS!!

 

[TreasureGoddess]

Thanks for all the great info! I finally got to talk with the main motility dr here and it sounds like he doesn't like the reglan because of the side effects. We're going to work HERE IN THE HOSPITAL for a while to see if my son can tolerate thicker liquids and soft foods with the erythromycin. He's already been on miralax 17g 3x/day and amitiza before the pain and issues got bad.
<br />
<br />We've finally got the hospital to work WITH us and not just shoo us out the door saying "good luck with that" as they've been doing for the last 2 months. The doctor has discussed the domperidone as an option also.
<br />
<br />We'd been told that people with CF usually didn't have this severe of GI issues and that it was rare. It helps SO MUCH for my son and for me to hear others have this and have found ways to deal with it.
<br />THANKS!!

 

[TreasureGoddess]

Thanks for the medicine ideas and especially for the place to look for donated formula nutrition!!  I'll check that out for sure.  It seems like we'll be on our own as nothing (even the pumps or supplies) are going to be covered by insurance.<br>

 

[TreasureGoddess]

Thanks for the medicine ideas and especially for the place to look for donated formula nutrition!! I'll check that out for sure. It seems like we'll be on our own as nothing (even the pumps or supplies) are going to be covered by insurance.<br>

 

[TreasureGoddess]

Thanks for the medicine ideas and especially for the place to look for donated formula nutrition!! I'll check that out for sure. It seems like we'll be on our own as nothing (even the pumps or supplies) are going to be covered by insurance.<br>

 

[ehtansky21]

I am not sure I am even qualified to chime in, as my son has not technically been diagnosed with gastroperesis. It sounds like your sons issues are more severe than ours, so again, not sure I will be of any help. But I am 89% sure we have been dealing with it. He has been having issues with throwing up at meals and he would end up throwing up food he had eaten hours ago.
Things seem to have improved majorly in the last months, so I will let you know what we have doing you.
One of the major things that works for my boys digestive issues, is probiotics. My 7 year old is taking a very high dose, 30 billion units probiotics a day.
We also started on a product called Iberogast. It is an herbal supplement that is used to treat delayed gastric emptying.
He has also started taking 350mg sodium bicarbonate at each meal and snack to help his enzymes work better.

He is doing so much better and has stopped throwing up and no stomach complaints and is actually gaining weight...Praise God!!!!

blessings,
missa

 

[ehtansky21]

I am not sure I am even qualified to chime in, as my son has not technically been diagnosed with gastroperesis. It sounds like your sons issues are more severe than ours, so again, not sure I will be of any help. But I am 89% sure we have been dealing with it. He has been having issues with throwing up at meals and he would end up throwing up food he had eaten hours ago.
Things seem to have improved majorly in the last months, so I will let you know what we have doing you.
One of the major things that works for my boys digestive issues, is probiotics. My 7 year old is taking a very high dose, 30 billion units probiotics a day.
We also started on a product called Iberogast. It is an herbal supplement that is used to treat delayed gastric emptying.
He has also started taking 350mg sodium bicarbonate at each meal and snack to help his enzymes work better.

He is doing so much better and has stopped throwing up and no stomach complaints and is actually gaining weight...Praise God!!!!

blessings,
missa

 

[ehtansky21]

I am not sure I am even qualified to chime in, as my son has not technically been diagnosed with gastroperesis. It sounds like your sons issues are more severe than ours, so again, not sure I will be of any help. But I am 89% sure we have been dealing with it. He has been having issues with throwing up at meals and he would end up throwing up food he had eaten hours ago.
<br />Things seem to have improved majorly in the last months, so I will let you know what we have doing you.
<br />One of the major things that works for my boys digestive issues, is probiotics. My 7 year old is taking a very high dose, 30 billion units probiotics a day.
<br />We also started on a product called Iberogast. It is an herbal supplement that is used to treat delayed gastric emptying.
<br />He has also started taking 350mg sodium bicarbonate at each meal and snack to help his enzymes work better.
<br />
<br />He is doing so much better and has stopped throwing up and no stomach complaints and is actually gaining weight...Praise God!!!!
<br />
<br />blessings,
<br />missa
<br />

 

[Beccamom]

Ehtansky21 great point about the probiotics. My daughter did start them about 6 months ago and that is also the same time period she began to gain weight and grow. I also learned that their different types of probiotics that contain different numbers of units in them recently. She takes Lactinex now. I basically now go to the pharmacist and ask for the probiotic they keep in the frig behind the counter and it has many times more units than the Culturell she used to take.

 

[Beccamom]

Ehtansky21 great point about the probiotics. My daughter did start them about 6 months ago and that is also the same time period she began to gain weight and grow. I also learned that their different types of probiotics that contain different numbers of units in them recently. She takes Lactinex now. I basically now go to the pharmacist and ask for the probiotic they keep in the frig behind the counter and it has many times more units than the Culturell she used to take.

 

[Beccamom]

Ehtansky21 great point about the probiotics. My daughter did start them about 6 months ago and that is also the same time period she began to gain weight and grow. I also learned that their different types of probiotics that contain different numbers of units in them recently. She takes Lactinex now. I basically now go to the pharmacist and ask for the probiotic they keep in the frig behind the counter and it has many times more units than the Culturell she used to take.

 

[peter]

As these more confusing medical issues get aired , I wonder if there should be more sharing of genetic code/mutation. It may surprise lukers and writers alike how important it is. That is where it's all heading anyway and this community could help define parameters and standards for the myriad combinations are reflected in the manifestations. Perhaps we need to form a private login section for this sensitive information. Any thoughts may be instructive.  Just a thought.

 

[peter]

As these more confusing medical issues get aired , I wonder if there should be more sharing of genetic code/mutation. It may surprise lukers and writers alike how important it is. That is where it's all heading anyway and this community could help define parameters and standards for the myriad combinations are reflected in the manifestations. Perhaps we need to form a private login section for this sensitive information. Any thoughts may be instructive.Just a thought.

 

[peter]

As these more confusing medical issues get aired , I wonder if there should be more sharing of genetic code/mutation. It may surprise lukers and writers alike how important it is. That is where it's all heading anyway and this community could help define parameters and standards for the myriad combinations are reflected in the manifestations. Perhaps we need to form a private login section for this sensitive information. Any thoughts may be instructive.Just a thought.

 

[Keepercjr]

Peter

While some believe that the mutation you have determines your disease pattern and outcome, there are many sibling groups who have the same 2 official mutations but have different progressions. I always cite my brother and myself as an example - he died when he was 13 and was sick most of his life. I am now 30 and doing fine. There has to be something else going on (modifier genes?).

 

[Keepercjr]

Peter

While some believe that the mutation you have determines your disease pattern and outcome, there are many sibling groups who have the same 2 official mutations but have different progressions. I always cite my brother and myself as an example - he died when he was 13 and was sick most of his life. I am now 30 and doing fine. There has to be something else going on (modifier genes?).

 

[Keepercjr]

Peter
<br />
<br />While some believe that the mutation you have determines your disease pattern and outcome, there are many sibling groups who have the same 2 official mutations but have different progressions. I always cite my brother and myself as an example - he died when he was 13 and was sick most of his life. I am now 30 and doing fine. There has to be something else going on (modifier genes?).
<br />

 

[Keepercjr]

I was going to suggest probiotics as a starting point. I have no experience with gastroparesis (other than the docs thinking I had it at one point). I hope you can get some answers and a plan that works.

Beccas mom - I take culturelle (along with another probiotic) because culturelle contains Lactobacillis GG. That is the strain that was used in all the probiotic studies (including studies with CF). It isn't clear whether it was the one strain that was helping or the fact that it just was a probiotic. Any probiotic is better than no probiotic and I'm glad you can find one with a high CFU count.