Newly diagnosed father—what questions to ask

[June99]

Hello everyone,
Thank you for this helpful forum! My father was recently diagnosed with bulbar palsy, and I have some questions about our first steps in this process. Thanks for any advice!

First, we are seeing a GI doctor for a feeding tube consultation. From reading posts on the forum, I get the sense that BP patients need specific kinds of feeding tubes and may need to work with a Dr who has experience with ALS. What questions should we ask during the consultation to make sure we are getting the right Dr and the right feeding tube and care?

Second, we are seeing a second-opinion ALS specialist. What questions should we be asking at this point in time? I’m not sure where to start. Also, how would you assess whether this is the right team for us to work with or whether we should be working with a larger ALS center in a further away city that would be a much harder trip for my father and my mother (his primary caregiver)?

Thank you!

 

[Nikki J]

Welcome. I am sorry about your dad

The feeding tube issue is the way it is placed. The procedure the GI would do is a PEG. It is generally considered better for most people with ALS to have a RIG done by an interventional radiologist because it is considered safer if breathing is compromised. Was your dad’s breathing tested and how was it?

If you go to the general discussion forum and look in resources you will find a topic on preparing for second opinions.

The issue of where to get care can be hard to decide. If you have a knowledgeable closer option that understands bulbar palsy and ALS and can get you support and equipment great. Some people manage quite well if they have local doctors who are willing to work with you. Others need stronger support and direction. You might find out if the further clinic does televisits. These are becoming more common and perhaps could be used in between site visits

 

[lgelb]

Hi, June, sorry to hear about your dad. If you told us where the closest clinic is and where he is getting the 2nd opinion, we could be more helpful on the question of future care. Generally, I think most of us would agree with using the clinic that is most accessible as the default unless/until they don't seem on point, and then the choice becomes another clinic or finding the best local people that are not part of an ALS clinic.

An obvious exception would be if there is a clinical trial of interest that another clinic has access to, that the close one isn't in.

Not every interventional radiology department is up on RIGs, especially in neuromuscular disease, so some people have the RIG done somewhere different from the facility where they receive other MND care. You will want to meet the actual radiologist who will do the procedure and check credentials, just as you would for any intervention, and make sure s/he has any information about any past issues with GI conditions, clotting, slow wound healing, any other medical conditions, and any history of smoking, but it's a procedure that usually goes well in the right hands.

Best,
Laurie

 

[June99]

Thank you so much! This is incredibly helpful. Dad’s lung test results have been FVC a little under 50% one time and a little over another. I didn’t know about the televisits option. And thank you both for all the ideas about other options for finding the right people to work with. I really appreciate it.

 

[lgelb]

At that FVC, he should be on BiPAP, preferably instituted before the feeding tube procedure.

 

[June99]

Thank you so much! I will definitely follow up on that. Thanks for all your help!