Oral Baclofen for four year old

angelblr2004

My daughter who is 4,1/2 years old is taking liofen(also know as baclofen, 5mg) twice a day for the last 2 years. alongwith this we have given her twice botox coupled with PT she has shown tremendous improvement ( CP diplegia). after all the hue and cry for last couple years, we she smile in all our family members face she is 95 percent all right, on the path to perfection. regarding side effects of baclofen, we do not see any visible side effects. Please go ahead confidently with baclofen with your docs monitoring every 3 months.

open_the_door

My son will be 4 years old soon. He is a twin, and he has pretty much what your son has, spastic diplegia. He gets botox every 3 months. He has never been in casts. We do alot of stretching, so he has great range. He wears knee immobilizers at night, so that prevents him from sleeping in the fetal position(all curled up). He gets baclofen once a day, 10 MG at night. I used to give it to him 2 times a day, 20 MG, and it made him very loopy, sleepy, and spacey. He is back to 10 MG a day, at night, and it seems to be alot better. My son doesn't go much on his toes. Make sure that your son wears his AFO's. That prevents him from doing this. Do alot of stretching with him. Ask his therapists about stretches. If you have any questions about those, let me know. It has helped my son tremendously. He will not go to sleep at night unless I do his stretches. IT is part of our routine, and it is the best thing you can do for your child.

I hope my 2 cents have helped you.....

batty

Hi there - I have had recent comments from 2 physios who are up with the play that are now saying current data shows passive stretching is not as good as active stretching. I was like you openthedoor, doing stretches and it became part of our routine before bed etc etc, but now I concentrate on putting my son in a standing frame for half an hour each afternoon while watching tv - this long, active stretch where he is doing it himself is supposedly meant to be much better for him than the short stretches that we do on our children - would be interested to hear if anyone else has heard similar. The standing frame long stretch definately gets my sons heels to the floor after about 5 minutes in there..

goulais

To everyone:
My son is 4 1/4 years old and I am VERY frustrated and hopeless. He has spastic diplegia and still can't walk. I am ready to start BACLOFEN and I am really scared. Can anyone tell me if any of their children have had seizures from taking baclofen? I am very very scared of that happening. Hope to hear from anyone soon.
Goulais

annie777

My son has had no problems with the baclofen - in fact it doesn't make him drowsy and that is a very common side effect. I don't think my doctor even mentioned seizures. The baclofen has made a difference - my son can move his legs much faster so we have a sort of a run now - and he has noticed it - when he runs now he says," Get ready for super speed!" It also has seemed to help with tantrums that could have come from tired legs and aches.

goulais

Thanks for the reply:
I sure appreciate the reply. If anyone else has given their young child baclofen, I sure would appreciate hearing about your experience. I am just SO nervous and scared that something will happen to him. How did you cope with the drowsiness. Does it eventually go away or is drowsiness always a part of baclofen. I am mostly terrified of seizures. Anyway, hope to hear some information from everyone soon and again thanks for your reply???
Goulais

open_the_door

My son was on Bacolfen for a short time. He was getting such a low dose, I think 10 MG a day. He was very drowsy, and he wouldn't pee as much. I couldn't potty train him to go pee in the toilet. I took him off the baclofen, and his peeing improved, he wasn't as drowsy, and he didn't (never has had) seizers. He was 3 years and 8 months old when he was on it. He is now 4 years and 3 months old. He was on the medicine for maybe 3-4 months. It was something new to try, but he really didn't benefit from it. When you administer baclofen as oral, it doesn't really target a specific area on the body. The baclofen pump does because the medicine goes into the spine which helps the legs or wherever it is directed too. He will never be a candidate for the pump because he has diplegia, and there are too many risks with the pump that I'm not willing to try to help my son.

LandonsMommy05

Landon was on Baclofen..for about a year. At first, we were fine, he didn't show side effects and it really loosened him up, his PT was pleased and so were we. But, as the months went on, he began to get loopy and just all together cranky. I talked it over with his PT, said that I wasn't happy about him being loopy and cranky all the time. She agreed that it wasn't doing everything that she wanted it to. So we tried him without it for a week and met again. We were all pleased with the way things had happened that week, he was just as loose and wasn't cranky or loopy at all. Since then, Landon has been off of it. Keep in mind, Landon's case is a bit different, and he cannot walk yet without the aide of a walker, AFOs and a SWASH brace.

jackshomes

They are looking at trying my 4 1/2 yr old daughter on oral baclofen. We have a similar experience to you with botox lasting only about 6-8 weeks. She has great range but very high tone and spasticity. She also has trunk weakness and arm weakness, She cannot walk independantly with a walking frame but can cruise short distances holding on to a rail or parallel bars type set up. She wears her AFOs all the time and also does wear wraps and does stretches etc. The botox and casting helps. I am a little worried by what I have heard about baclofen too so the replys to your post are helping me too. I have a meeting with her team tomorrow where I will be putting forward my concerns of increased weakness in weak areas and the seizure and loopy thing people have mentioned.

rauljoni

I am a 40 year old that has used baclofen. Being tired is the way it will be. This is the only side effect I ever had.

shaggy106

my 11 year old daughter had the baclofen pump implanted about a year and a half ago and we can see a bigger difference than the oral med. she was on. the oral made her tired and cranky. the pump injects the med directly into her spine with little to no side effects!!!

open_the_door

How old is your son, if I may ask?

rauljoni

I am also 40 years old. I have the baclofen pump and it has changed my life. I am not as tired anymore. I am able to take care of my children and funtion. Please, lets keep in touch. It is so hard to find someone my age and with the same issues. Can I have your address? Joni