11 replies to this topic

[Kath]

Hi
My name is Kath and I'm new to this site! I stumbled over it while researching Baclofen Pumps. I have to say, that reading all the postings from you all and all the shared Knowledge you all have, I am finding out so much information!
My 7 year old daughter,Lily has CP. She is mainly a wheelchair user who has some use of her legs,but not much really. We recently underwent an assessement in Oswestry for gait analysis. This has now presented us with the option of a Baclofen pump.Her consultant said this was a fairly new thing in CP and he had no other children who had had it so he couldn't tell me how well it can work or anything! I really think it's the way forward for her,but I'm really really worried about possible side effects. I am not in possession of many facts but leaking, swelling and terrible headaches do sound quite off putting.Also, what if it doesn't work,or they get the dose wrong?She had such a traumatic start to life and gets so down sometimes about being disabled,I can't bear the thought of puttting her through something that may not even work for her.On the other hand,if it does work,she may well be able to put her feet flat on the floor and walk.My god.What a thing that would be!!
Can I please please have some honest feedback about how Baclofen can work for you,and is the risks of surgery and complications worth it??
Many thanks for taking the time the read my ramble!
Kath

[Billy's Mom]

Kathy,

If you read my post regarding the 2nd implant then you'd know some of the complications. BUT, the difference in ours son's legs when he has the pump compared to the oral medicine is huge. I can actually spread his legs apart without need a crow bar He had surgery on May 22nd and we're still waiting to see if this one will work but for him it was worth it to try. He didn't have any other complications - no pain, no headaches only the leaking which was more of a nuisance than anything.

Good luck. I know as a parent it is a difficult decision because all they have been through.

Chris, Billy's mom

[adi]

Hello Kath, Billy's mom and all the rest of you...

same as you, kath, i was also very happy to come across this forum while researching baclofen pumps...

i can't give you any answers really but i can join to your questions and interduce myself as it seems like we're both looking for similar information.

our girl is 9 years old and has CP. she walks with a walker but is very unindependent. this week she went to a doctor (an orthopedist) for evaluation who (at the bottom line) said that usually when a child doesn't walk by him/herself by the age of 7-8 then it is very unlikely that they'll ever walk independently (meaning without any aids).

hearing this was obviously very upsetting and disappointing but the good news (we hope) are that this professor is not familiar with the baclofen pump system and has no experience with it... i dare to conclude then that what he said might be irrelevant (or not compeletly accurate) if taking into account the baclofen pump system results... then we are now seriously considering giving it a try...

what do you all think?
if you have a child with a similar case would you be kind enough to share some of your stories and experiences?

good luck to everyone and thanks in advance. i am so happy to have found this community.

Adi.

[cyclops12]

hello im new here this is my first post
first im a para t6 complete and ive had very bad spasms from day 1[ bike crash 9 years ago]
i used 2 take baclofen tablets [the max dose] and all they did for me was make me very drousy for a couple hours after taking them[took 3 times a dy]
my spasms were so bad i used to throw myself on the floor and i swear i could have walked on them also when not spasming my legs and back were rock solid!!
i had the pump put in 5 years ago and would recomend getting 1 to anybody as it has changed my life
i can move my legs with ease now and i havent fell out of my chair since ive had it
the only problem ive had is when it ran out the docs got my refill date wrong and baclofen withdrawalls aint nice so have a word with your doc about this before you make up your mind
its life thretning if the pump runs out or fails and i wasnt told this


i hope this helps [sorry about bad spelling]
paul

Edited by cyclops12, 25 June 2006 - 11:16 PM.

[davebahm]

Hello Kath, Billy's Mom, Adi and Cyclops,
I hope I'm not wearing out my welcome by posting so often, but my story is changing daily and I hope I can offer some encouragement for you.

Adi, I am 38 years old with CP, and my doctor in 1969 or so told my Dad and birth mother I would die before I was a teenager (which I believe was part of her reasoning in leaving my Dad and me, but that's another story). Well, here I am, with CP and healthy, college grad, career in graphic design, married, 2 stepsons, drive 2 cars, have a mortgage, etc. I crawled around the house till first grade when I got a walker. My Dad remarried when I was 3 and I think they just didn't want to face that fact that I needed assistance till it was necessary (starting school). Even all these years later, I was reluctant to tell them I was getting the pump. They're the faith-healer types, and though my Christian beliefs have moved beyond the sophistry that they believe, I still didn't want to tell them because I kind of felt they would see me as a failure for doing this (another long story behind that).

My Dad and stepmom (aka "Mom") aren't perfect, but the best thing they did for me was not let me feel sorry for myself. They recognized my limitations and accomodated them, but boy did they push me! I school, in relating to others - I am so thankful they treated me as any other kid and expected me to behave as any "normal" kid. They had two daughters, my sisters, who have no disabilities, and they treated each of us equally. I love my sisters and would do anything for them. I just hope as parents, you all can be encouraged by this.

Billy's Mom, I am so sorry your son has had trouble with infectons and fluid leakage. That must be frustrating. I don't understand why spinal fluid is leaking from around the pump site.

I am in my sixth day since the surgery and doing well. The most difficult part has been sitting around doing nothing! One of my coworkers visited yesterday, and everyone at work is bugging him about my status. My wife won't let me go in the kitchen and wash dishes (she's working from home this week so she can help me). Per my past post, my digestive system is waking up but seems to be working in slow motion like the rest of my body. However, I am noticing little improvements every day (I could stand this morning while Jen redressed my back incision, then I brushed my teeth and washed up without feeling like I was going to fall down, and yesterday I stood up the whole time I showered). Some clear liquid stained a small spot my t-shirt yesterday, so Jen is concerned about the back incision a little. The pump incision is doing great (even slept on that side last night). I stopped taking the narcotic pain med, and haven't taken anything for pain since yesterday afternoon. My pain is mostly in my rear end from sitting and lying down. Ugh! Luckily I have a Mac Powerbook, a card table and power recliner, so hey, I can do some freelance graphic design work for one of my clients.

Oh, Kath, your doctor will do the pump test before any surgery. I had this done two months ago. My neurologist injected Baclofen directly into my lower spine and waitied to see what happened. Two hours later we knew that I was a good candidate. My doc's attitude was kind of like, "You have reservations about doing this?! You're the perfect candidate so let's do this thing!" I remember that when I am in pain or haven't been able to move my legs in the last six days. Prior to surgery I was very mobile, so this post-surgery muscle weakness and resting is cramping my lifestyle!

Dave

[Lillehammer94]

Wow Dave,

Thanks for sharing such an incredible inspiring story! Welcome to all the new posters. Like Dave I have CP and at 25 have had my Baclofen Pump for almost 3 years. So much of what was said about not being treated differently is really important, my family did the same thing. I started walking on my own at age 3 and walked unaided for 20 years. Since my pump I use a cane to walk distances because I use more muscle to walk than spasticity which makes me tire more easily but I am doing great and just completed my first year of college. I too had some set backs in finding the right dose only I kept getting too much Baclofen and overdosing. Once we got that straightened out things have been fine. I think the most important thing to remember about the pump is that it is no miracle and will not give you a lot of abilities you don't already have. Rather, what it will do is greatly enhance the abilities that you do have.

Gretta

[Kath]

Dave
YOU are fantastic! Than you so much for your posting! I can't tell you how much you have helped me.
All of you who have replied have been great.It is sooo usefull to hear all sides. I guess you all know that sometimes, you feel as if you are the only family that are going through all of this. I feel so much more informed thanks to all of you!
Bless you

[davebahm]

Thanks Gretta and Kath.
Hey Gretta, I just realized that you're the one who shared her story in CP Magazine last year! I have the PDF of the story on my desktop and was referred to it a couple of months ago. I read it again a couple of days ago and asked Jen to read it as well. Your story was one of the many things that prompted me to do this, so thank you so much. As far as P.T., yes, it looks like I may be admitted to Spalding Rehab Hospital here in Denver in about a week. I'm hoping to be able to drive by then so I can just go there every day on an outpatient basis. It kind of depends, because my insurance allows 30 days inpatent and 20 outpatient (so the inpatient stay may be more beneficial). It looks like my wife cannot spend the night with me there, which would not be fun. Kinda sounds like physical therapy boot camp/prison!

If you all are interested, I just set up a landing page on my website to document my progress. It has QuickTime videos with sound that my wife shot. The address is http://www.davidabahm.com/IBT

Still improving after 8 days, but slowly. I just scrubbed the kitchen sink and got pretty tired (had to do something productive). But just I drank an Ensure, and wow do those help!

David

[Lillehammer94]

Thanks Dave,

I'm glad that my article was helpful in your decision making process. It's the reason why I agreed to write the piece and share my story. Good luck with you're PT, I think you will find the progress you will make very rewarding. I never stayed inpatient but did many months of outpatient rehab that made all the difference.

Gretta

P.S. You are a wonderful artist!

[Billy's Mom]

David,

I noticed in your recovery pictures you had some type exercise equipment for your thighs. Where did you buy it - that is exactly what my 12 y.o. son needs. Until his stitches come out and we can start doing some good strengthening, I've been stuffing a pillow between his legs when he's sitting or laying down to try to stretch the muscles.

Thanks
Chris (Billy's mom)

[davebahm]

A coworker built that for me with the help of one of our welders (I work for a magnet company). I wish I knew where you could find a similar gadget... so sorry. Several people have suggested we market it, but I wouldn't know where to begin and if it would even sell.

David

[Stacy]

 Billy's Mom, on Jul 5 2006, 02:31 PM, said:

David,

I noticed in your recovery pictures you had some type exercise equipment for your thighs. Where did you buy it - that is exactly what my 12 y.o. son needs. Until his stitches come out and we can start doing some good strengthening, I've been stuffing a pillow between his legs when he's sitting or laying down to try to stretch the muscles.

Thanks
Chris (Billy's mom)

Hi all.
This is my first time on. I am a Physical Therapist and am researching the baclofen pump for a client I work with at a long term care facility. I've been trying to get him into get evaluated and am having trouble with the insurance company.....anyhow
I saw you asked about the device David was using to abduct (spread) his thighs. We have devices very similar to that one....though I realize your son may be past the point of needing it. They can be purchased through Medical Equipment companies that carry braces...and are probably called Abductor brace or something similar. We primarily use them on folks who are not very mobile...as they are restrictive....but can also be used a few hours a day to get a good stretch. Two of the companies I know of are Marquis and Regal. If you need a phone number, feel free to email me....I can find it when at work.

Thanks for all the good info. I feel much better about my efforts to try and get a pump for this young man.

Stacy