Discussions that mention prevacid

Cerebral Palsy board


Hi,

My name is Carmen, and I am 35 with spastic athetoid quadriplegia CP. My husband (Chris :wave: ) is helping me with this post because he can explain it better. My “flavor” of CP consists of general muscle tone (tightness), spasms when I try to move, and involuntary spasms/movements (athetosis). As a result, I cannot walk and must use a wheelchair. I have the CP startle reflex, as well.

I had been taking 20 mg of oral Baclofen 4 times/day for years. It never helped that much. By the way, one thing you should know about Baclofen is that if you stop it suddenly and/or forget to take it, it will cause rebound spasticity (spasms worse than you started with) that can take several days to settle back down.

Anyway, several years ago, one of my doctors suggested trying a medicine called Dantrium (generic is Dantrolene). The Dantrium helped way more than the Baclofen ever did. Then about 3 1/2 years ago, I decided to get a trial for Intrathecal Baclofen Therapy. This involved a spinal procedure where they use a needle (like an epidural) to put a small amount of Baclofen into your spinal fluid. In the spine, Baclofen works way better. For comparison, the trial dosage for this is 20 micrograms of Baclofen. (That’s micrograms, i.e. 1/1000th of a mg.)

The combination of the trial dosage, my oral Baclofen, and the dosage of Dantrium I was on at the time left me almost totally spasm free (including the startle reflex) for about 2 days. Someone cut us off on the highway on the way home, and I didn’t even budge when my husband had to hit the brakes! A few weeks later, I went ahead and got a Baclofen pump. This device is about the size of a hockey puck. Through a simple surgical procedure, they put it under the skin of your belly. It kinda sticks out, but if you wear loose clothing it doesn’t show at all. The pump has a tube that goes around to your back and into your spinal cavity. The pump automatically dispenses the Baclofen into your spinal fluid. They refill the pump with an injection. For me, I have to go in once a month for refills, but that depends on your dosage.

Since then, I have gotten pregnant and had a baby. During the pregnancy, I didn’t take any medicines except for pain medicine and the Baclofen pump. My spasticity was surprisingly manageable, but the startle reflex was back to full strength. After having the baby, I started taking the Dantrium again, and the startle reflex has been reduced again. I’m still working with my doctors to find the ideal balance between the pump and the Dantrium.

A few notes about side effects...

For me, certain drugs like cold medicines and acid reducers (like prevacid), make my spasticity worse. So if you are trying different medications, keep in mind that other medications might be affecting your spasticity.

It takes some time to get the Baclofen pump dosage adjusted properly for any given individual. So be patient. Also, for me, I started having acid reflux when my dosage was too high, and they had to turn it down.

As for the Dantrium, there are risks related to liver function. If you decide to try Dantrium, you will have to get your liver function tested periodically, and you shouldn’t drink any alcohol.

Lastly, I would like to tell you that I volunteer at a school for kids with disabilities, and my husband works there. Many of the students have CP, and pretty much all of the ones with CP have the startle reflex. Also, the majority of them take Baclofen, and it doesn’t seem to do much for the startle reflex for them either. Some of them have Baclofen pumps, and that does seem to help somewhat with the startle reflex. Part of it seems to depend how bad their spasticity and muscle tone was to start with.

I hope this information is helpful.

Carmen :angel: (and Chris :wave: )