New appt

[laurenac81]

It has been a while since I have posted here, but Janet had an appointment today and there have been some changes since the last appointment. Janet's food options are basically down to soup, jello, pudding, oatmeal, and cereal. She said she doesn't want a pureed diet. Those are the main changes that we have seen with her. She does seem depressed as she cries more often when she is upset about something.

She went to the doctor today and they are giving her a non-invasive breathing mask to use at night. The doctor said that they will put her on a ventilator when she feels like she feels she is struggling to breath or gasping for air. This is concerning to me.

He also said that treating her for depressing and crying is complex and the medication he would give her for it would not be worth it in the long run. Maybe I am wrong, but it seems like he isn't going to treat her depression at all, which seems odd. I'm not a doctor though...

He also said that perhaps by her next appointment she will need a feeding tube and Janet doesn't want one until she can't eat anymore. I am surprised that she hasn't lost much weight considering how little she does eat.

Overall, things haven't gone the way I thought they would during this appointment. I am interested in any feedback anyone may have.

 

[Katie C]

Why on earth won't he treat her depression? Is this doctor an ALS specialist? She should be receiving any treatment available that can make her life more comfortable! OK... our first neurologist was a jerk, and I found an ALS specialist to whom I complained so loudly that doc number one is no longer employed by that hospital. Our specialist was/is one of the kindest most compassionate physicians I have ever met. It really sounds like you need to seek out a new doctor who maybe knows what he's doing

In the meantime... Can you convince Janet to just try a little homecooking that's been pureed? I understand it sounds kind of nasty but Glen came to really enjoy his dinners.. I burned out 3 blenders until I got the Health Master but I found I could make just about anything palatable with the addition of gravy or cream or pasta sauce! Anything to bring a little enjoyment, right?

 

[lgelb]

The crying may be helped with Nuedexta, which will be available soon. It treats the emotional liability of ALS. I imagine some people here were in the trials.

But she may have depression as well, or instead. Some believe that everyone with ALS is eligible for antidepressants. If this doc is not interested in assessing/treating it, there are plenty that would be.

The decision to start Janet on a ventilator is hers alone, not the doctor's. Has she expressed her wishes? An advanced directive and perhaps a health care power of attorney would be good documents to complete at this time. State-specific forms are usually downloadable from the Net.

Did the doc explain that inserting the feeding tube, which is best done before severe respiratory compromise, doesn't mean using it? Janet can still eat what she wants (a lot of people come to enjoy blended home cooking, as Katie suggests) as long as she wants. But again, getting it inserted at all is her call.

None of these issues are neuro-specific, and it does not take an ALS clinic to deal with them. So you should feel free to seek out recommendations for a good pulmonologist, internist, etc. nearby. If you find a good doc in any specialty, s/he can often refer you to others. But if you fan out from your current doc, you may not like the results.

--Laurie

 

[laurenac81]

Katie- He is an ALS specialist, the only one in our area. John has to find her a PCP so maybe that is something he can talk to the PCP about. I will definately have John try to convince her to try a pureed diet and give him the tips you gave.

Laurie -I feel like I am in a tough spot here because the Nurse at the Specialists office cautioned us when getting information from the forum so John really doesn't want to hear the suggestions I have gotten from this site. I actually feel I have gotten more information from this site than from them, which is sad.

After everything I have read I was right to be concerned, but one of the reasons I have not been on this forum is because I told John I would no longer do the research and help because after everything I would tell him he would give me push back. Really not sure what to do at this point. I want to tell him about these concerns and other options, but I don't know how well they would be received. I feel like there isn't much I can do.

Thank you both so much for your help and suggestions.

 

[Katie C]

I understand your frustration but since you're not the caregiver, unfortunately all you can do is pass along the information and hope some of it sinks in. You're a good friend for hanging in there.