Baclofen

[Lou33]

Has anyone used it ? Ds2's neurologist has said he may benefit from it, as Botox is not suitable yet, and he is getting stiffer .

I will do a google search, but want real opinions too.

Thanks.

Anyone?

Not the same as personal experience, but I foundthis recent review on Pubmed which reveiwws a whole lot of recent papers, and sounds fairly encouraging:

"Intrathecally delivered baclofen has been used as a treatment for severe spasticity since 1984. A systematic literature review was conducted from 1984 to December 2002 to analyze the results of this treatment and to collect data on complications. Studies were included if the following criteria were met: clear selection of patients suffering from spasticity of spinal or cerebral origin, clear measurements of outcome (Ashworth score, Spasm score and/or reflex score and/or functional scales), average follow-up of at least 6 months. Almost all the studies had open follow-up with no control groups (controls were used to examine the effect of test doses of baclofen rather than to assess long-term results). Studies often included heterogeneous patients groups with different causes of spasticity (spinal and/or cerebral etiology) and functional outcome was measured using different scales from one study to another. This literature review shows evidence that intrathecally administered baclofen is effective in reducing the positive signs of spasticity (tone, spasms, reflex activity). Significant reductions in spasm-related pain were noted. The reduction in spasticity led to improvement in ability to transfer and ease of nursing care in the majority of patients. Significant improvements were noted in terms of mobility. Benefits were most notable in bedridden patients who became able to sit in a wheelchair. Many benefited from improved wheelchair mobility, ability to sit down comfortably, and improvement in their ability to transfer. Such benefits were approved by all the patients as an improvement of their quality of life. Ambulatory patients could also benefit from an improved gait but were less often treated because they usually relied upon their spasticity for support during ambulation. Complications were rather rare and mainly were not life-threatening, although there was a high rate of catheter dysfunction (10 to 45%) leading to reoperation. Wound complications were the leading cause of explantation in children with cerebral palsy. Despite the risks, patient satisfaction was high and was related to the improvement of the quality of life."

HTH! (at least it will keep this thread at the top )

Lou i'm sorry to hear your ds is getting stiffer.

And sorry i can't help you on Baclofen.

But if there is ever anything i can help just shout - i'd like to be there for you like you have been for me.

Your a fantasitc mum to your kids and i'm sure you'll find a way you always do.

love fairydust.

Tamum, very interesting, thanks. The doc wants to administer it orally though at first. I'm concerned it will be a a bit too generalised in his body, and he has low tone in his trunk already (it's his legs that are getting stiffer), so i don't want it to get worse iyswim. It lets me know what to expect if he ever has it intrathecally though, so it was a help .

FD, that's a lovely offer, thank you for thinking of me .

Forgot to add. The neuro thinks mobility at 5 is optimistic, he says it could be even later, so we may be looking at a wheelchair for when he starts school (he is 3 next month) . Bit of a depressing appointment, but ds2 hardly cried at all this time (he usually screams the place down), and in fact charmed the socks off everyone!

Tomorrow he has to go to the paed ward and have bloods done for lack of weight gain and growth. And the neuro wants another hip xray because he is very tight there now as well. What a week!

Lou hope it goes okay today. Sorry not much help on the drugs front but on the weight side, we had similar problems at one stage. Our dd had to have the metabolic/allergy tests etc which were all clear. Then she had to have a high calorie diet and fortini drinks. She did soon put the weight on and after 6 months did not need the fortini drinks anymore. Let me know how you get on.

Oh Lou - what a week... No experience of this drug at all I'm afraid. Do hope today's appt was 'ok'. Give him a hug from me

Well, he was a real star having the blood taken. No crying/tears at all! I had to stay at the playgroup the whole time though, he is going through another refusing to settle phase. He was so tired by the time we got home from the hospital that he slept through his physio session . Just as well, because she turned up with his new walking frame (a Ponywalker), so we spent the entire time trying to put it together!

lou he sounds really brave! Sorry can't help on the Baclofen, but hope if you use it it works well. Best of luck with the weight gain too, we're still having problems with dd2 - she's been stuck at about 22lbs for what seems like forever, despite high calorie drinks.

Thanks Caroline. We are seeing the dietician in a couple of weeks as well, so she will probably give him something like that as back up I expect.

He loved it in his ponywalker today, called it his motorbike, lol.

I doubt if it is of any help as I am an adult with a different disease. I am wheelchair bound and began to develop uncontrollable muscle spasms that were very painful and always occurred at the most inconvenient times! My doctor at the hospital prescribed Baclofen orally for me and it has made a tremendous difference. I take 100mgs four times a day. The hospital pharmacist told me it is what they call an 'inert' drug as it has few side affects and does not interact with any other drugs, (of which I take pleanty!). Baclofen has altered my life as my spasms used to be so severe that they could sometimes 'throw' me forward out of my wheelchair. I know I am an adult with a different illness but Baclofen for me, taken orally works wonders without upsetting the balance of my other medication. I do not know if this is any help but if you want any info. on baclofen I have the patient info. leaflet from the packet or could look it up in the the BNF for you. good luck.

Glad he was so well behaved for you lou I am not suprised our children become clingy with all the different people they have to see. Hospital appointments have started to turn my well behaved little angel into a monster!

Thank you Bunglie, that was very helpful to know. I think on balance he will have it, or at least give it a go. Just have to get dh to talk about it now.

Fio, ikwym. I never know how he is going to react, my heart is in my mouth half the time when they go to touch him!

Hi, Lou! Just to say I've read the brilliant explanation about ds2 you gave in the bar last night and I do understand a lot more now - I've heard about patterning (the Peto Institute?) and it all makes a lot more sense.

You explain things very well, and you do really know your kids couldn't have a better mum, don't you?

Am blushing now.

We do Bobath Therapy, another type , and it seems more suited to ds2. There are 3 types I have heard of, Peto, Bobath and Cheyne, all come from different theories, it just depends what the physio is trained in and what suits you best. Bobath tend to look at the problem and find a way of improving it constantly, incorporating physio into your lifestyle. Peto works on the principle that as long as you can do "it" (whatever it may be, walking, standing etc) then it doesn't matter how, or how well. Bobath try and get it as fluid as possible and keep trying to improve it. Cheyne works on the principle that if you get the trunk sorted, the rest will flow correctly from there.

Found your post now, Lou! (Must have had a brainstorm yesterday afternoon, have discovered several bits I missed! )

Was Peto the first to do it? Only I remember newspaper and TV features quite a few years ago (20? more?), and lots of British families desperately fundraising so they could take their children there, and stay with them while they learned how to do it, because there just wasn't anything for them here except wheelchairs basically. It's so good to know that there is an alternative!

Thanks Issymum. I will keep an eye out for it's development.

Jan, I'm not sure if Peto was first , but Bobath have been around a long time too. It may be that Peto was just the favoured way at the time. I feel Bobath is more suited for ds2, but that doesn't mean I think Peto is rubbish iyswim. There is so much for ds2 on offer now, it's a good time to have cp in a way. In fact we are running out of storage space for his equipment, so considering getting a grant to extend into our attic to free up a room especially for his physio and associated bits. There really is everything now, from adapted cutlery to walking frames. It's getting better all the time.

We've decided to try the Baclofen. I've spoken to his local paed, and she is leaving a script for me to collect on Tuesday when he goes to OPG, along with a hip x ray form. Hopefully it will work.

best of luck lou- hope thing start to get better for u both