Friedreich's Ataxia

[americanTrain]

Does anyone else have a pt with Friedreich's Ataxia? This is fairly new to me in hospice,

and I'm dealing with possible issues pain. It's very hard to read this one as pt is nonverbal

even though I use Painad scale. At different times of the day, crying becomes intense and

incoordination of movements seem to get worse. This seems to be mostly toward the evenings

and into the early morning hours. I'ts hard to tell if this is Sundowning or increasing pain.

Does anyone know if pain with these pts can increase at night? Pt has had 2-3 breakthrough doses

of Roxanol in last couple of days along with sched. hydrocodone doses Q 8hrs.

[leslie :-D]

dang, i hope he's getting a heck of a lot more than what you posted.

what is being prescribed for tremors and spasms???

leslie

[americanTrain]

The exagerated movements are part of the disease process, and pt takes lorazepam, buspar, and other

meds, none for cardiac, so far this has not progressed into heart failure. It's still a fairly new diagnosis.

The movements are always there, but not always quite so exagerated as it seems to be around sun down.

What Im trying to find out is, is there a correlation between sundowners and increased pain. The recent

psych eval showed that it is possible that pain will intensify at this particular time. I dont know, because

Iam not an expert in the psych area. This is a very difficult case to manage and Iam very frustrated.

I appreciate any suggestions.

[leslie :-D]

any form of agitation will exacerbate pain.

so yes, if he's sundowning, extra ativan and pain meds should be helpful.

leslie

[AlexandraP]

Hello. I'm a nursing student and I had a patient last week at clinical with Friedreich's Ataxia. My patient told me that her legs get horrible cramps at NIGHT and the pain is unbearable. They only give her Tylenol for it and she said it doesn't help.

I noticed that your post is from 2009 and was curious if you found anything out about this disorder since then?

Also, I asked my instructor if we could "adopt" this patient for the semester so she gets some extra attention from people (she's very depressed). Could you recommend any special nursing interventions that might help a patient with these specific conditions? I'd like to help her.

Thanks in advance!

[cayenne06, MSN, CNM]

No advice, but my daughter has ataxia telangiectasia which has many similarities with Freidrich's although it is much rarer and has a whole bunch of other comorbidities that totally suck. How old is your patient?