Too late for a PEG?

[Laurencarroll]

Hi there. My mom is currently in the later stages of her battle with limb onset ALS and she is currently losing her voice and secretions and phlegm are becoming an issue for her. She is currently on a puréed diet but we think she might have aspirated a bit of her breakfast this morning so we are likely going to need a feeding tube pretty soon. All in, we are about fours years into her progression with last November being the point where we really saw her start to significantly decline and up until this point she had moderate use of her hands.

I am wondering if we are too late in starting the discussion about the PEG? At what stage do PALS usually get theirs? I’m paralyzed with fear that we will do something that ends up causing her more harm than good.

My parents are finally being transparent with me and including me in doctor and clinic visits so after four years, I will finally be meeting with her team tomorrow via Zoom. My brain is all scattered right now so I apologize if this comes across as choppy and incoherent.

 

[Nikki J]

How is her breathing? the 2 issues that can be a problem with timing of the tube are breathing and extreme malnutrition.

the breathing can be an issue if it is really compromised but the RIG procedure ( radiology) which is usually recommended and using bipap during the procedure if needed have allowed people with pretty awful numbers to come through it well.

if someone has been very malnourished for a while there can be problems tolerating refeeding

my sister had both issues and came through her RiG and with patience and expert guidance she tolerated the tube feedings and regained some weight so she was no longer skeletal.

does your mother want a tube?

 

[Laurencarroll]

Yes. She wants the tube and wants to fight this disease for as long as she can with exception to not wanting invasive ventilation.

She is on BiPap basically 24/7 with exceptions to food and water but she can only tolerate the mask off for 2-3 minutes at a time on a “good day”.

I am pretty confident that she is malnourished but we are not combatting her being underweight on account on what my dad chose to feed her up until she was no longer able to eat solids. Plus no one in my family is on the slim side so going into this she was overweight.

I am definitely doing a bit of catch up with my mom given that I found out that my parents were trying to protect me by not telling me everything that has been going. Painful to find out, but I know their intentions have come from a good place. As much as you try to prepare for how painful this all is, you can never really be prepared how how horrific this disease really is.

Thank you Nikki.

 

[lgelb]

You will need to find an interventional radiologist who is comfortable with doing the procedure while keeping her on BiPAP. That may or may not be the same hospital where her clinic is.

I would not be comfortable keeping her underweight or malnourished as ALS takes more energy for less effort than for people who don't have ALS. So she needs more calories for activity than most people, not less.

Research also suggests that being mildly overweight may help slow progression, and that being underweight and/or malnourished are risk factors for faster progression and worse function. I am not sure why it matters that she can't eat solids since she will have a feeding tube. That is typically what happens in this disease.

If she doesn't have enough energy, her breathing and other important functions are at greater risk. Please reconsider this, and discuss with a dietician or neurologist.

Best,
Laurie

 

[affected]

sorry I wrote a long post but found it was a bit redundant.
thank you for stepping up to help your mum

 

[KimT]

It will be easier to administer meds and keep her hydrated with a feeding tube. These are two factors that are important in keeping the PALS comfortable.

 

[vltsra]

Lauren, my PALS just underwent the RIG procedure at the end of July. He is also on Bipap 24/7. He did just fine. He is still mostly eating by mouth, but we do keep him hydrated and give him some supplements through the tube. We are going to start putting his daily meds through the tube as well.

If your mom wants the tube I say go for it. It is distressing to me when my PALS chokes on liquids. I'm glad that we went through the procedure.

My PALS is going on 5 years in at this point. He started to decline more quickly in March 2019, is now wheelchair dependent and has all but lost the use of his hands. Yes it's painful watching someone you love with ALS. We all understand here.

V

 

[Dee Dee 0617]

hi Lauren, I just got my feeding tube placed this past July. I was diagnosed November 7,2016. I am paralyzed from the shoulders down, and am completely reliant on my bipap. I opted to have the procedure done using local anesthesia only. It really was 15 minutes. I kept my nasal pillows in no problem. The anesthesiologist moved the right pillow to insert the air tube down your throat via your nasal passage. They squirt a numbing solution and the hose itself is not thicker than fishing line. The surgeon and I talked he let me watch on the screen, guns n roses were on the piped in music. I was able to skip recovery and I went straight to my room. Uneventful.

 

[Laurencarroll]

This calms my nerves. My mom is having hers inserted this Thursday. Thank you.