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aspen07

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Mother-in-law just diagnosed, would love some help on a few ? Diagnosed 3 months ago, however symptoms were not pinpointed for nearly a year. 3 weeks ago, got feeding tube and its not going so well.. Gets the jitters after being fed via the tube with the jevity formula given to us.. We are doing all the feedings at home and was so excited to train her to do it independantly however, this has been hampered with the jitters shortly after eatiing. My gut is she is allergic or not a candidate for that particular formula, because when i made homemade soup, she reacted much better. We have a new formula coming by today, ? Have any of you experienced the Jitters after eating ? is this a formual issue, or new feeding tube issue, or part of ALS.. Would love some input, also, cramps in the middle of night - increasing. She is taking in Tonic Water plus a Quinine pill, any hints on real life homopathic treatment for the Cramps.. out there for us to look at.. Again, I am reaching out, because i am finding Docs, dont have all the answers , we need real people living with this to help.. SHe is not one to join a group but loves the idea of getting information from me.. so thanks so much.. she is 75 yrs old. no other issues but the Als ..
 

brooksea

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aspen,

Sorry no one has responded yet, I'm sure someone with experience will answer your question.

My husband isn't that far along with swallowing difficulties yet for PEG, but I also would be interested in reading responses to this question.

It is great that you are trying to research info for you MIL. wish you luck!
 

Rhonda

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Gatorade helps with cramps. I try to drink some everyday.

Rhonda
 

aspen07

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New leaf with tons of ?.

Thanks Rhonda and Jimercat, will try the gatorade. Got the new formula yesterday, less jitters than original but still has jitters. Did some soup, no jitters, but is very very hesitant to try food. I think the idea of venturing is too overwhelming. Trying not to push, but she wants to stick with formula. again , If anyone has some ideas on this would love to hear. thanks again, also does anyone have suggestions to help with suction. She is gagging so quickly in the last 2 weeks. Needs to suction more and more often. Does this increase or stay stable and are there tricks to not getting so choked up .. i find if she does much talking it starts.. is it the buildup of saliva.
Thanks
Aspen07
 

CindyM

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Hi aspen. Welcome to the forum. I hope your MIL's tube concerns will be solved shortly. On the chocking thing, someone may have to call the ALS clinic on her behalf. They have machines that help with coughing and suctioning. Good luck andlet us know how it goes. Cindy
 

cheryilyn

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I have had to make several formula changes due to various problems. what they finally decided was the 1.5 formulas were too rich for me so i am on nutren 1.0 now and doing much better. I also seen where someone else was using the 1.5 and only taking 1/2 can at a time dilulted with water. i think it just takes some experimenting to find what works for each person. good luck
 

Shasta

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HI Aspen...Please look in the Support Directory on the main page here for the state you're in. Call them up. Get to know the people in your area that will help out. Should be a couple places that can help. Keep up the good work.

God Bless
Doug
 

aspen07

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thanks for all the suggestions

thanks for all the info for my MIL, i hope it will help to just experiement with the formulas. She seems to want to try to change things, i was concerned she was getting too depressed to try to feed herself. She is currently being fed via the tube from family and now seems interested to try to do it herself. So, thanks for all the support on the gatorade and the formula trials, until one fits.. thanks so much
aspen
 

Lillie

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Hi Aspen,

My husband also has a feeding tube. I personally hate the "formulas" - from what I understand, one of the biggest ingredients is sugar, which made my husband feel jittery too. The only forumla he can tolerate is "glucerna", so we keep some of that on hand to use in a pinch. But we've come to learn that "real food" is so much better for him than any formula. Just about any type of table food can be pureed in a blender and then poured down his feeding tube - just like you would pour down the formula. We give him lots of lean chicken, beef, pork, potatoes, rice, vegetables, canned soups, healthy choice frozen meals, well cooked beans, soft fruits, milkshakes - all of these can be blended/pureed in a regular household blender and mixed with enough liquid to go easily down a tube. There's only a few things that don't blend well - overly greasy foods, fish, undercooked beans, corn. He's kept up his weight for well over two years with no problem using "real" food. And he feels more like a part of the family at mealtimes, since he's usually able to have the same things we eat. You just have to experiment getting the right consistency - it's not rocket science though :)

Good luck.
 

Al

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Thanks Lillie. Good advice from someone that's doing it.
AL.
 

trying to stay positive

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Hi Aspen,
The newspaper in my city has a daily column written by Dr. Gott. He has had tons of testimonies from readers who swear by this crazy cure for nightime leg cramps. Put a bar of soap (you can leave it wrapped) under the bottom sheet in the area of the legs that are cramping. Its cheap & easy with no side effects and lots of people claim it helps. I hope it helps your MIL. Blessings to you and your family.
Linda
 

CindyM

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Well, since it is cheap and easy and my cramps ar ramping up I will give it a try. I can't imagine how or why it works but then again I can't figure out how or why my own home remedy works. I wrap my legs in elastic bandages, the kind you buy at the first aid section in the drug store. It must be a placebo effect but who cares if it lets me get to sleep? :) Cindy
 

aspen07

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Messages
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07/2007
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colorado
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denver
THank you Thank all of you, the food versus formula, the Change of formula idea and of course the soap. She just swithed formulas and its somewhat working, i have suggested doing real food, and she is very apprehensive to try it, old school of thought.. mouth is for food, dont want to lodge something in the tube, but i always suggest it, almost daily, how about a smoothie? fruit and yogurt or some veggies and chicken... i have tried to give her the respect she has to be given to take charge of her own health choices, but i keep a pluggin,,, i will try the soap deal though... She seems to be progressing so rapidly.. she has resigned her self to sleeping on a lazy boy , that way she sleeps upright and doesnt choke at night.. she is suctioning quite a bit.. she takes a pill to lower her saliva production.. stairs are now becoming quite quite a deal.. the decision to move her to a nursing home is approaching.. I thught retrofitting her home and having homehealth come in would be grand, but she has hated the nurses who come in to feed her when family cannot.. she finds it evasive to have strangers in..she seems so disinterested to feed herself most often than not.. its hard for family to know what to really do.. she seems to want to control her own choices but doesnt make choices that show us that she has it going on enough to make choices for her own well being.. Prayer is sustaining all of us ...we love her so, and understand that this disease is breaking her down in body, mind and soul... She seems to be giving up more often than not... We are trying to give her support, ideas, new methods, support system of health care and it is met with resistance.. So, we will keep plugging, but its tough.. we love her and for that in itself we will press forward...Thanks again for all your ideas..
 
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