Success with Intrathecal Baclofen

[lawiz98]

I'm the parent of a 24 yo daughter w/spastic quad cp. Intrathecal Balcofen is the only medication and delivery system that has offered my daughter any relief from the constant hypertonia, and dystonia. She wouldn't have any quality of life today if not for ITB therapy . She had her first pump implant at age 12.

[jcrogan]

Hi, my son, Nate (9), is having his third baclofen pump placed right now. About 2 years ago we had his first one placed and after two years of increasing the dosage with no results they determined that the catheter was broken. He had another placed about 5 months ago and he ended up with a staff infection so it was removed (Nate has had over 60 surgeries for his shunt and has serious infection issues). Nate has severe spastic quadreplegia and is in a wheelchair, nonverbal, g-tube, cortical vision impairment, head deviation to the right. He is very dependent and he would like to gain some independence. Just wondering if you had any of the same challenges and how long it was after the pump was placed that you saw improvements and what they were. Also how long it took to get to your daughters baseline after the pump was placed. We are very excited about this because we did see some significant initial improvements immediately following both surgeries so we know that the pump will help.

Thanks,
Jackie

[lawiz98]

Hi Jackie, wow, our kids have much in common.. My daughter is 25 yo and is also severe spastic quad cp, cortically blind, severe mr, non-verbal, severe scoliosis, GERD and cns dysfunction.
Danielle was one of the first pediatric patients in the country to receive the pump after FDA's approval for it's use with CP back in 1996.. The first pump lasted nearly 6 years until 2002 before we had to change it due to "low battery" The current pump is her third and was placed in Sep of 2006 and thankfully we haven't had any problems at all with it or any or the previous pumps. We only went to ths 3rd pump prematurely because the existing was the smaller pump and we were doing refills approx every 8 weeks. We saw success w/the initial trial at 10mcg and they started with 7mcg per hr w/the 1st pump and over the first year we bumped her up to 11 then 13 mcg and realized incredible success.. Before the pump she screamed in pain every waking moment with dystonic posturing, hypertonia and muscle spasms, and suffered with severe contractures, and we could hardly dress or diaper her for the severe level of her spasticity. She's now at 673ucg per day so approx 28ucg per hour and we're thankfully still realizing success in controlling her spasticity, and dystonia at this dose. I'm sorry to hear ya'll have had such an ordeal with the pump. I'm sure when they finally "get it right" your son will realize a significantly improved quality of life as a result.. Please keep me posted and best of luck!
Lee
Mom to Danielle

[wilsonjohn]

Very good news.

[Daniel453]

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[BeatriceSabo]

Can you say more about this? I also have a 12-year-old son, and I want to learn about it. My child loves playing games. Her favorite game to play is 1v1.lol unblocked. This is a healthy shooting game, so I let my children play freely. But I don't know if it has any effect.