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Steve100

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CALS
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My Mother went to see a gastroenterologist a few months ago and he said that as she was eating a little, then she could put off having the PEG.

The neuro came to see us a few weeks ago and when we made enquiries, he said he wouldn't recommend it as she may not make it through. According to him, he wouldn't have recommended it even last October, but he may have been covering the gastro's arse. As it happens, I don't think she would have gone for one anyway, so it didn't make a huge difference.

Its getting to the point now where she can't take in liquids easily, and so we're looking at a drip (I.V). The nurse said these are mainly for meds but can be used for hydration.

Has anyone had experience of this?

Thanks

Steve
 

olly

Extremely helpful member
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hi steve

i am so sorry to hear your mums not doing too well, i was thinking about you the other day that i have not heard you for a while.
i dont know anything about peg or iv tubes so i cant help, but i do know that a lot of people thicken there drinks to make it easier to swallow. shatzie knows alot about this and has tried various things, if she sees this post she may be able to help.
i hope you find a solution, if shes still eating that is good.
give my love to your mum.
take care.
caroline
 

Steve100

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Hi Caroline :)

I don't really get to spend as much time on this site as I used to (I used to read every post), things being as they are, but I do try to check in to keep up to date.

We have thickener, but Mam is having trouble with getting the liquids through the straw. Its a catch 22 I think.

We're having the Doctor come over today. If theres no luck there maybe we'll bring the palliative care back into it.

Hope you're doing as well as you can.

Keep in touch.

Steve
 

Shatzie

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OK
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Drinking thickened liquids through a straw is almost impossible. If they can't be sipped from the edge of the cup, look for a travel cup with a straw. I bought a tumbler at Target (I know you are in the UK, so I don't know about stores there) for $10 US that has a screw-on lid and a large heavyweight straw that can be washed and reused. I looked on Amazon.com and found it "Aero Water Tumbler" by miGo. I have three and that is what I drink my thickened liquids in, I take one to work with me every day.
 

Steve100

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Hi Shatzie

Thanks for the info. I think sometimes that its just that she can't 'pull' liquids up in general, thickened or not. Thankfully, most times she can. I'll definitely try to get one of those cups though.

Hope you're doing well.

Thanks :)

Steve
 

janetti

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03/2007
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MA
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Hamilton
Try milking a straw

My sister has had a PEG for nutrition and meds for 8 months and can take very little by mouth. But by "milking a straw," we can continue to give her small amounts of liquids (a bit of coffee in the morning and a bit of wine at night, with water in between). We use a straw cut in half, put finger over top of straw and dip into liquid, then drop it in the side of her mouth. About 50% of it stays in her mouth and the rest goes down her chin. But she still savors each sip!
 

Steve100

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Hi Janetti

Thats a terrific idea :)

The nurses gave us some syringes (big ones for food) for use for the time being, so we'll see how that works. I didn't realise they were coming when I posted this thread.

Thanks for the info, though, its much appreciated and may well be helpful if the syringes aren't suitable.

Steve
 

TBear

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... If you can convince her, the PEG will help keep her basic nutrition in hand. It doesn't mean that she will no longer be able to take anything by mouth any more. I think that I still have "nosey" wine glasses around here that were used frequently... lets say nightly! It allowed me to give her her nightly ration and keep her chin down to prevent choking.

Good luck!
 

Steve100

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Messages
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Hi T Bear

Thanks for the reply.

Unfortunately the PEG is not really an option as she's not considered well enough to have a general anaesthetic and she's too claustrophobic and uncomfortable for a local.

She's still eating bits and pieces at the moment, fortunately.

Best wishes, and thanks for posting :)

Steve
 

Icanmanz

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PALS
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Tomball
Hi Steve! So nice to hear from you, but am soooo sorry to hear your sweet mom is having difficulties with her swallowing. This is one of the sad and horrific parts about Als. I believe I remember reading some of your past posts, God, our forum is growing so, and the good thing about it is that our members are so caring. They look out after each other. We have a good bunch, and the best of moderators, they are so professional with words and mannerism. They know how to handle the ones that cause problems, and than God we don't have many of those. It is kinda sad when you run into those. You're alright, steve! LOL!
Let's get back to your mom, I gotta shake this babbling mood! God bless her. I understand she does not have a peg, and at such stage I only pray to God you will get ideas from some of these members, because I do not recall reading about a Pals without a peg. When my son got his peg Dr. Appel told him about the problems he would face later on if he didn't get one. So he went in and got one, bless his heart. He was so young, and such a looker, with a nice build. He enjoyed going shirtless in the summer, and it was torturing his mind for a while. I felt so bad for him. He kept telling me, "Mom, how am I going to be going to the swimming pool now, with this?" Steve, all I can say is God bless these courageous people. The changes and great pain that they face is beyond me and the entire world. It tears us inside out, just think what it does to them, bless them all, living and departed. Steve, I will keep you and your sweet mom in my prayers, and hope you find a solution. Again, God bles!

Irma
 

MtPockets

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Joined
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For those who have had a PEG tube, Is there much pain associated with it after being installed? Such as when transferring to wheelchair on a lift, etc.?
I B SCARED OF PAIN. :-D:-D:-D:-D
 

Icanmanz

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Hi Al, Iremember my son complained a little right after insertion. I believe the reason was because of the fresh wound. I do remember him telling me that his insides could tell he had a foreign object inserted inside of him. Isn't that something? After that, he never complained. He worked, he picked up stuff, even though I raised heck about him doing that. I was like a Mother Hen. Now he is watching over me!
 

CindyM

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Captain- don't over analyze the procedure. Anyone who loves life as much as you would appreciate the way the extra nutrition makes you feel, the extra time you will have on your hands that would have been spent trying to chew a meal, and so on. Think of the benefits, my friend, not the temporary discomfort! :-D
 

pat-in-fl

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Joined
Apr 27, 2008
Messages
15
Reason
CALS
Country
US
State
FL
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Gainesville
Hey Steve

My mom is 85 yr old with bulbar ALS and she just got a G/J tube put in about 2-3 months ago. We were first sent to a general surgery MD who recommended because of her age, etc. that it would be less invasive if she had it put in by Interventional Radiology under IV sedation. She did really well afterwards considering all. Yes it apparently is very "sore" for at least the first couple days to week. All she took was some tylenol or ibuprofen for the discomfort. Now that it is 3 months out, she really does not complain about it unless it gets tugged for some reason. We bought an Ostomy support band that is soft and breathable to keep the tube and dressing in place. It works really well.

Maybe they can get your mom hydrated well with the IV fluids to the point she could maybe get the tube in.

Be very careful using the 60 ml syringes to give fluids. Must put in the fluids very, very slowly so that she can swallow them slowly and not aspirate them in to the lungs. Keep chin tucked to chest after putting fluids in mouth. Did she have a swallow study done? My mom hasn't been able to use a straw for a long time now because of the weakened tongue, lip, cheeks, mouth muscles. Her speech therapist said she could only have pre-thickened liquids using a very small spoon. But since now receiving the tube feedings and H20 thru the tube she is not really thirsty at all and rarely wants anything by mouth (although she is still able to handle pureed or very very soft foods).

Pat
 

Steve100

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Joined
Oct 5, 2007
Messages
164
Reason
CALS
Diagnosis
10/2007
Country
UK
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Wales
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Hi Irma

Yep, I've been around for a few months:). It is such a cruel disease, and seems to hit the best of us. Sorry to hear about your son's difficulties and thank you for your prayers, its much appreciated :)

Best Wishes

Steve
 
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