My son had to have his pump removed on Sunday due to a mild case of staff infection following a surgical pump adjustment. They had to remove it and the cathider. He is going through sever withdrawals now. I have read on the web where withdrawals have been know to last as long as 45 days. He is 14 years old and has had his pump installed for approx. 5 years.
If he pulls out of this, we are considering leaving him off the pump and oral baclofen. He has CP, so depending on the stiffness in his legs and his comfort level. We may leave him off all the drugs. Of course, the Dr. will definitely try and talk us into re installing the pump, but we would like to see how he does without it. After his staff infection is resolved, we will have to make the decision. At the end of March he is also going in for spinal surgery to correct his scoliosis. This kid has been through a lot.
Does anyone have any advice on Pump removals and the subsequent withdrawals.
Thanks.
0
Son Still In Intensive Care Unit For Past 3 Days
Started by
Hawkins
, Jan 18 2006 11:26 AM
9 replies to this topic
Top#2
Hawkins
-
- Members
- 3 posts
Lurker
Posted 19 January 2006 - 09:04 AM
Son out of intensive care. Still has spasms and is very tight. He is heavily sedated to help with the withdrawals. He has congenital heart defects, which had been corrected at birth; however, he is having heart arrhythmias and is going to have his heart shocked on Friday to help it get back on a better beat.
Dad to my 14 year old boy with CP
#3
Apparelyzed
-
- Admin
-
- 3,571 posts
The Boss!
- Gender:Male
- Country:UK
- Spinal Injury Level / Relationship:C5/6 Anterior Cord
- Injury Date:02-01-1991
Posted 19 January 2006 - 09:12 AM
Hi Hawkins,
There is an article on Baclofen withdrawal here which may give you a bit more information.
http://www.apparelyz...withdrawal.html
Best regards
Simon
There is an article on Baclofen withdrawal here which may give you a bit more information.
http://www.apparelyz...withdrawal.html
Best regards
Simon
Follow the Apparelyzed Forum on our Facebook and Twitter feeds.
#4
Joed
-
- Members
-
- 1,283 posts
Member
- Country:US of eh/Indiana
- Spinal Injury Level / Relationship:Incomplete para
Posted 19 January 2006 - 06:05 PM
Hi Hawkins and Welcome...
I hope they get his heart rhythms on track soon. That must be quite scary to have something from the past rear its head at this stage. But it sounds fairly straight-forward, so I'm confident that all will go well. Please let us know how it goes on Friday.
I hope they get his heart rhythms on track soon. That must be quite scary to have something from the past rear its head at this stage. But it sounds fairly straight-forward, so I'm confident that all will go well. Please let us know how it goes on Friday.
* * * * * * * * *
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
#5
Hawkins
-
- Members
- 3 posts
Lurker
Posted 22 January 2006 - 07:34 AM
Thank you for your words of comfort. It has been less than a week and he is doing exceptionally well. His withdrawals seem to be in the past, though he is taking 90 mg of oral baclofen and valium. He goes in Monday for the heart check up. They are taking a camera up through the groan and will also be shocking his heart to see how it reacts to electrical stimulation. If it makes a difference, they will be installing a defibulator.
It seems like, when ever a doctor has the opportunity to cut, modify, or implant something into somebodies body, they jump at the chance. I know, I know. They wouldn't be doing it unless it was necessary, but why is it always something?
He is doing much better. I'm surprised it didn't take longer. One other thing, His legs have gone from extreme high tone to very low tone. I can't image the oral baclofen could be making that big of a difference so quickly.
It seems like, when ever a doctor has the opportunity to cut, modify, or implant something into somebodies body, they jump at the chance. I know, I know. They wouldn't be doing it unless it was necessary, but why is it always something?
He is doing much better. I'm surprised it didn't take longer. One other thing, His legs have gone from extreme high tone to very low tone. I can't image the oral baclofen could be making that big of a difference so quickly.
Dad to my 14 year old boy with CP
#6
jsh2k7
-
- Members
-
- 5 posts
Newbie
- Spinal Injury Level / Relationship:Friend of S1 - S5
Posted 01 July 2006 - 03:46 PM
hello
I have not got An SCI, but have mild scoliosis, and get muscle Spasums just about all the time,
no one has surgested Baclofen, and iam not the one to go ask for mediction.
has any on got infomation on what causes them,,
thanks for help
I have not got An SCI, but have mild scoliosis, and get muscle Spasums just about all the time,
no one has surgested Baclofen, and iam not the one to go ask for mediction.
has any on got infomation on what causes them,,
thanks for help
#7
Apparelyzed
-
- Admin
-
- 3,571 posts
The Boss!
- Gender:Male
- Country:UK
- Spinal Injury Level / Relationship:C5/6 Anterior Cord
- Injury Date:02-01-1991
Posted 01 July 2006 - 08:14 PM
jsh2k7, on Jul 1 2006, 04:46 PM, said:
hello
I have not got An SCI, but have mild scoliosis, and get muscle Spasums just about all the time,
no one has surgested Baclofen, and iam not the one to go ask for mediction.
has any on got infomation on what causes them,,
thanks for help
I have not got An SCI, but have mild scoliosis, and get muscle Spasums just about all the time,
no one has surgested Baclofen, and iam not the one to go ask for mediction.
has any on got infomation on what causes them,,
thanks for help
Hi,
Take a look here: http://www.apparelyz...spasticity.html
Regards
Simon
Follow the Apparelyzed Forum on our Facebook and Twitter feeds.
#8
car
-
- Members
-
- 51 posts
Newbie
- Country:USA
- Spinal Injury Level / Relationship:Engaged to a c5-6 quad
Posted 02 July 2006 - 11:53 AM
jsh2k7, on Jul 1 2006, 03:46 PM, said:
hello
I have not got An SCI, but have mild scoliosis, and get muscle Spasums just about all the time,
no one has surgested Baclofen, and iam not the one to go ask for mediction.
has any on got infomation on what causes them,,
thanks for help
I have not got An SCI, but have mild scoliosis, and get muscle Spasums just about all the time,
no one has surgested Baclofen, and iam not the one to go ask for mediction.
has any on got infomation on what causes them,,
thanks for help
If you are followed by just a general practitioner then he might not know all things out there. You should be followed by a Physiatrist or rehab dr for spinal cord injuries. The closest largest hospital should have one. SOmetimes you have to travel a little but they can provide the best information for you and it is generally only 2 times a year
#9 *MCB-SpeedShop*
*MCB-SpeedShop*
-
- Guests
Posted 24 December 2006 - 02:08 PM
Hi
I can not tell you about the pump. I can Tell you about eating those pills 3 or 4 times a day. It is a huge Hassle. And speaking for my self, Some days were uneventful some days the pain or spasms and what ever else comes with it were normal pain and spasms etc. But , BUT! Some days were so bad that in my mind more is better and I would go find my pills and take to many and to much baclofen landed me in the Hospital with (i can't spell it) "Censure's." And if I did not take these things on time every time all time at the same time it messed up the chemicals in my brain and my whole personality changed.
I made a decision to stop it all. I went to the basics. And I went through Hell but by the grace of God I was able to go on with out it. All I take now is 1 Methadone Pill a day at 6AM. (And I'm supposed to take 4 and 5 Methadone Pills a day) But putting my self through so much hell by stopping it all and going one pill at a time to find out what worked and what did not , It worked out for me in the end. I was 3 years on 12 different pills a day. Today I only take 3. But my Doctors do not know this. So ..I did this against my family and every one I know ..But I am a now 37 year old man. And I will take my own life in my own hands. Your Son is to beautiful to take chances. All I know is I could not take all those pills at the right times. I'm only human not a computer.
I have real bad problems with bladder spasms. So Jan 30th they are going to cut out some stuff and fix it so I don't have them any more there very painful. BUT! For the last 3 and 4 years I have had to do all kinds of things on a schedule. And My bladder do not like having more then a spoon full of fluid i it so it would spasm and push it out. So I was always having to Cath. Well not to long ago they put in a cath in me that I strap to my leg (something about the surgery) and all I have to do is empty it 3 or 4 times a day. Mt life has went up 100% better I wish they would have done this along time ago! I have not had to worry about bladder spasms and caring around caths etc etc. You know the drill. You will have to always worry about those pills and running out and caring them around in a bag on and on.
MCB
I can not tell you about the pump. I can Tell you about eating those pills 3 or 4 times a day. It is a huge Hassle. And speaking for my self, Some days were uneventful some days the pain or spasms and what ever else comes with it were normal pain and spasms etc. But , BUT! Some days were so bad that in my mind more is better and I would go find my pills and take to many and to much baclofen landed me in the Hospital with (i can't spell it) "Censure's." And if I did not take these things on time every time all time at the same time it messed up the chemicals in my brain and my whole personality changed.
I made a decision to stop it all. I went to the basics. And I went through Hell but by the grace of God I was able to go on with out it. All I take now is 1 Methadone Pill a day at 6AM. (And I'm supposed to take 4 and 5 Methadone Pills a day) But putting my self through so much hell by stopping it all and going one pill at a time to find out what worked and what did not , It worked out for me in the end. I was 3 years on 12 different pills a day. Today I only take 3. But my Doctors do not know this. So ..I did this against my family and every one I know ..But I am a now 37 year old man. And I will take my own life in my own hands. Your Son is to beautiful to take chances. All I know is I could not take all those pills at the right times. I'm only human not a computer.
I have real bad problems with bladder spasms. So Jan 30th they are going to cut out some stuff and fix it so I don't have them any more there very painful. BUT! For the last 3 and 4 years I have had to do all kinds of things on a schedule. And My bladder do not like having more then a spoon full of fluid i it so it would spasm and push it out. So I was always having to Cath. Well not to long ago they put in a cath in me that I strap to my leg (something about the surgery) and all I have to do is empty it 3 or 4 times a day. Mt life has went up 100% better I wish they would have done this along time ago! I have not had to worry about bladder spasms and caring around caths etc etc. You know the drill. You will have to always worry about those pills and running out and caring them around in a bag on and on.
MCB
#10
Shadybug
-
- Members
- 3 posts
Lurker
- Spinal Injury Level / Relationship:Spina Bifida
Posted 29 December 2006 - 07:38 AM
Hello '
I'm sorry to hear about your sons condition, it's the 28th and I hope he's improved. My son has spina bifida and has been on oral baclofen for 2 years, he doesn't take it like he's suppose to, and when he doesn't, he does have mild withdrawlas. But if he's off it completely, he can't walk. My son is having the baclofen pump put in on January 17th, and I'm afraid for him, but he needs it. How long did your son stay in the hospital after the pump was put in ? Again I hope your son is fine, our prayers are with you. If your up to it, let me know about how long he was in the hospital.
Sincerely
Shadybug
I'm sorry to hear about your sons condition, it's the 28th and I hope he's improved. My son has spina bifida and has been on oral baclofen for 2 years, he doesn't take it like he's suppose to, and when he doesn't, he does have mild withdrawlas. But if he's off it completely, he can't walk. My son is having the baclofen pump put in on January 17th, and I'm afraid for him, but he needs it. How long did your son stay in the hospital after the pump was put in ? Again I hope your son is fine, our prayers are with you. If your up to it, let me know about how long he was in the hospital.
Sincerely
Shadybug
Hawkins, on Jan 18 2006, 02:26 AM, said:
My son had to have his pump removed on Sunday due to a mild case of staff infection following a surgical pump adjustment. They had to remove it and the cathider. He is going through sever withdrawals now. I have read on the web where withdrawals have been know to last as long as 45 days. He is 14 years old and has had his pump installed for approx. 5 years.
If he pulls out of this, we are considering leaving him off the pump and oral baclofen. He has CP, so depending on the stiffness in his legs and his comfort level. We may leave him off all the drugs. Of course, the Dr. will definitely try and talk us into re installing the pump, but we would like to see how he does without it. After his staff infection is resolved, we will have to make the decision. At the end of March he is also going in for spinal surgery to correct his scoliosis. This kid has been through a lot.
Does anyone have any advice on Pump removals and the subsequent withdrawals.
Thanks.
If he pulls out of this, we are considering leaving him off the pump and oral baclofen. He has CP, so depending on the stiffness in his legs and his comfort level. We may leave him off all the drugs. Of course, the Dr. will definitely try and talk us into re installing the pump, but we would like to see how he does without it. After his staff infection is resolved, we will have to make the decision. At the end of March he is also going in for spinal surgery to correct his scoliosis. This kid has been through a lot.
Does anyone have any advice on Pump removals and the subsequent withdrawals.
Thanks.
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users
