We met with Dr. Maller today, Hannah’s new local neurologist. She was very attentive to hearing Hannah’s long story, and she seemed to pay attention to all the little things along the way, which I appreciated. We talked about the oversedation, her Gaucher’s, and most of all the chorea movements and possible seizure disorder.
She modified our current plan of action, and it all makes perfect sense to me, especially after she educated me more on the Klonopin that Hannah has been using to control her movement disorder. Apparently, Klonopin is another benzo drug, just like the ones we had been trying to wean her from! Not only that, but Klonopin also increases secretions — not something that makes a lot of sense to give for a newly trached baby!
So she started Hannah on haloperidol this evening – 0.125 mL at night for 3 nights and then twice a day. This is exactly the same drug that my uncle, who is a pharmacologist, suggested that the docs at Texas Children’s Hospital try to control her movement disorder. After researching it online, there is a lot of resources that mention it is used specifically as a treatment for chorea. We have to keep a close eye on her (not that we aren’t already doing so) to look out for side effects.
But the “hope” is that this drug may knock out her movement disorder once we find the right dosage. If it does help, then we will start to wean down the Klonopin as soon as we are done weaning down the chloral hydrate (which should be in about 10 days).
Our long-term hope is that once all those meds are out of her system then her chorea movements will subside on its own and we can wean her from all medications.
I am to call Dr. Maller in a week to give her an update, and we are to see her again in 2 weeks for a follow up.
Keeping my fingers crossed….
Hi
I am so sorry to hear about Hannahs recent problems, She sounds so like my youngest son. He too had a really bad movement disorder off the back of another medication. he ended up in ITU sedated for 6 weeks, with the hospital trialing different meds every few days lifting his sedation if he was still wiggling around back off to sleep he went. In the end it was a mixture od Haloperidal and Aceta zolamide that worked for Stu. The 2 are not ever meant to go together but it worked. Stu could no longer have any Benzos as they def made things worse. Hope things start to pick up soon x
Karen
It does sound like everything may finally be falling into place and thats a blessing.
I am sorry but I have been following you for sometime now. Did you ever think that the initial pneumonia was from a nosocomial bacter she contracted from her previous surgery?