Post by Amy Lombardi on Mar 31, 2009 9:31:13 GMT -5
Subject: later stages?
Name: Phyllis
Date Posted: Oct 5, 08 - 3:33 PM
Email: Click here to Email
Message: It has been a long time since I have posted on here. My daughter Megan is 21 JNCL, she has been in the hospital recently for uncontrolled siezures. She is having the smaller petite siezures but one after another after another. The only way we can half-way control them is Valium every four hours around the clock. Since starting the Valium Megan has started to have urinating problems and constipation issues. We are lucky if Meg urinates 1 or 2 times a day that is it. Now she is also constipated she takes enulose and Miralax.
My question is although I'm sure that I know the answer are we coming to the end? Does Valium have these side effects? Ir we are coming to the end are Battens Children usually catherized in the end? What do I expect next?
Name: Anonymous
Date Posted: Oct 5, 08 - 7:26 PM
Message: The constipation and trouble urinating could be the Valium. Narcotics are notorious for having constipation as a side effect since they slow the digestive system way down. Trouble urinating is a rarer, but possible side effect, so my advice would be to talk to the prescribing physician.
I found some basic information here:
www.medicinenet.com/diazepam-oral/article.htm#SideEffects
Name: peg davis
Date Posted: Oct 6, 08 - 12:37 AM
Email: Click here to Email
Message: hello! my 3 adult children had times when they didn't urinate or have troubles with the bm's and it has gone on for years--for them it wasn't at the end of life stage--
i make sure they have a regular bm schedule--my second child has troubles urinating and i either wait for her to go in the morning--some mornings she is totally dry for 12 hours of rest--when we are in a hurry i will use a cath for her--when i give her a bath and use digital stimulation for the bm i will also push on her belly and inside her rectum to help her urinate--
my son also had troubles with urinating--we tried a pill for it but now looking back i think the pill really didn't help much--i would also cath him on occasion--
my son and youngest daughter take ativan everyday--i would think this might help them to relax more--the same for the valium?
have they tried ativan instead of valium for the seizure control??? i found ativan being more effective--longer lasting and didn't build up such a resitsance as the valium did---Peg
Name: Phyllis
Date Posted: Oct 6, 08 - 9:06 AM
Message: Thank-you for your responses. Megan doesn't seem to respond well to ativant for some reason, that is why we are using the valium. Megan was on a BM schedule before the valium started, this is just been in the last 2 weeks that this has been going on. Thank-you for help. Phyllis
Name: Roger Crane
Date Posted: Oct 17, 08 - 4:39 PM
Email: Click here to Email
Message: Phyllis,
Who can tell what is "later stages"? You have to do what you feel is right and, as I have said before, our job on this board is to support you.
Some of what Peg suggests may seem drastic but I have been here and done that myself. There may even be times when you will need to dislodge the "plug" with a gloved finger!
Our youngest went for nine days on one occasion. When things finally happened it was prolific to put it politely.
Phyllis, you are not alone. You can scream as loudly as you like and your fellow travellers will listen to you. The road is rough, and sometimes long but those of us who have travelled it before are there for you.
Kind regards from "Down Under".
Roger Crane
Name: jb
Date Posted: Nov 3, 08 - 6:42 PM
Message: have you tried diazapam rectally? my son gets good
seizure control for 24 hours this way. and we
use senakot 2 tablets 2x a day and 3 tablets if
he goes 2 days without a good movement but he
does have a feeding tube the miralax relies on
having enough water in your body and its hard to
get in sometimes with the battens and can lead
to dehydration and then the demintia seems worse
have you talked to any one in hospice you don't have
to think you cant call them they can just come and
learn about your daughter and talk to you about
where you are and what your options are and they
can help your doctors stick to quality of life and
work more towards comfort it helped us a great deal
when we did this the doctor came to the hospital
even though he wasn't on staff there but really made
a diffence in the care my child recieved and even
made thing better for us at home with meds and equipment it couldn't hurt to explore the idea
they aren't going to force anything on you but can
really help you succeed in what you want to do for
your child. lots of love
Name: Phyllis
Date Posted: Oct 5, 08 - 3:33 PM
Email: Click here to Email
Message: It has been a long time since I have posted on here. My daughter Megan is 21 JNCL, she has been in the hospital recently for uncontrolled siezures. She is having the smaller petite siezures but one after another after another. The only way we can half-way control them is Valium every four hours around the clock. Since starting the Valium Megan has started to have urinating problems and constipation issues. We are lucky if Meg urinates 1 or 2 times a day that is it. Now she is also constipated she takes enulose and Miralax.
My question is although I'm sure that I know the answer are we coming to the end? Does Valium have these side effects? Ir we are coming to the end are Battens Children usually catherized in the end? What do I expect next?
Name: Anonymous
Date Posted: Oct 5, 08 - 7:26 PM
Message: The constipation and trouble urinating could be the Valium. Narcotics are notorious for having constipation as a side effect since they slow the digestive system way down. Trouble urinating is a rarer, but possible side effect, so my advice would be to talk to the prescribing physician.
I found some basic information here:
www.medicinenet.com/diazepam-oral/article.htm#SideEffects
Name: peg davis
Date Posted: Oct 6, 08 - 12:37 AM
Email: Click here to Email
Message: hello! my 3 adult children had times when they didn't urinate or have troubles with the bm's and it has gone on for years--for them it wasn't at the end of life stage--
i make sure they have a regular bm schedule--my second child has troubles urinating and i either wait for her to go in the morning--some mornings she is totally dry for 12 hours of rest--when we are in a hurry i will use a cath for her--when i give her a bath and use digital stimulation for the bm i will also push on her belly and inside her rectum to help her urinate--
my son also had troubles with urinating--we tried a pill for it but now looking back i think the pill really didn't help much--i would also cath him on occasion--
my son and youngest daughter take ativan everyday--i would think this might help them to relax more--the same for the valium?
have they tried ativan instead of valium for the seizure control??? i found ativan being more effective--longer lasting and didn't build up such a resitsance as the valium did---Peg
Name: Phyllis
Date Posted: Oct 6, 08 - 9:06 AM
Message: Thank-you for your responses. Megan doesn't seem to respond well to ativant for some reason, that is why we are using the valium. Megan was on a BM schedule before the valium started, this is just been in the last 2 weeks that this has been going on. Thank-you for help. Phyllis
Name: Roger Crane
Date Posted: Oct 17, 08 - 4:39 PM
Email: Click here to Email
Message: Phyllis,
Who can tell what is "later stages"? You have to do what you feel is right and, as I have said before, our job on this board is to support you.
Some of what Peg suggests may seem drastic but I have been here and done that myself. There may even be times when you will need to dislodge the "plug" with a gloved finger!
Our youngest went for nine days on one occasion. When things finally happened it was prolific to put it politely.
Phyllis, you are not alone. You can scream as loudly as you like and your fellow travellers will listen to you. The road is rough, and sometimes long but those of us who have travelled it before are there for you.
Kind regards from "Down Under".
Roger Crane
Name: jb
Date Posted: Nov 3, 08 - 6:42 PM
Message: have you tried diazapam rectally? my son gets good
seizure control for 24 hours this way. and we
use senakot 2 tablets 2x a day and 3 tablets if
he goes 2 days without a good movement but he
does have a feeding tube the miralax relies on
having enough water in your body and its hard to
get in sometimes with the battens and can lead
to dehydration and then the demintia seems worse
have you talked to any one in hospice you don't have
to think you cant call them they can just come and
learn about your daughter and talk to you about
where you are and what your options are and they
can help your doctors stick to quality of life and
work more towards comfort it helped us a great deal
when we did this the doctor came to the hospital
even though he wasn't on staff there but really made
a diffence in the care my child recieved and even
made thing better for us at home with meds and equipment it couldn't hurt to explore the idea
they aren't going to force anything on you but can
really help you succeed in what you want to do for
your child. lots of love