Old 11-13-2015, 09:40 PM #1 (permalink)
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Default Tommy feeling sick

Tommy has been throwing up for a few days now, not sleeping and eating very little. Not sure if it is his als meds thst are causing this. He is depressed and says he does not think he can contiue if he feels like this. Could there be something else going on besides als? He is losing weight and crying that this is alljust too hard. What can i do?
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Old 11-13-2015, 09:50 PM #2 (permalink)
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Default Re: Tommy feeling sick

A little more info, please? What meds is he on? Is it hard for him to eat, normally? Does he throw up randomly or after eating or some other time of day/night?

If he is on riluzole and does not seem to have anything else going on, since it can cause nausea, I would stop it. Was he depressed before these issues or is he depressed because he doesn't feel well?

If you can't keep him hydrated, he's not talking himself into giving up, and/or stopping riluzole doesn't help, I would certainly get a nurse practitioner out (most communities have some that do house calls) to assess him, or do a telemed visit to have him assessed for gastoenteritis (or see someone in person -- but you kind of made it sound like you guys are hunkering down).

I would certainly shop creatively (on line, of course) and see what he might like -- changing the temp + consistency of food, using a straw, oyster fork, smaller spoon, lots of things could help. Some PALS do better on sodas, some less; smoothies, soups, chicken fingers, tater tots...don't know what stage he's in, YMMV.

All you can do is make a move to break the cycle. It all becomes self-fulfilling and he deserves a chance to make calmer decisions with you.

Best,
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Old 11-13-2015, 09:52 PM #3 (permalink)
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Default Re: Tommy feeling sick

Can you give us a little more info on Tommy? When was he diagnosed, how long has he been symptomatic, what are his limitations, what medications is he taking, etc. If you can give us a little more detail, we may be able to offer some help.

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Old 11-14-2015, 05:04 PM #4 (permalink)
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Default Re: Tommy feeling sick

Hi. Tommy was diagnosed 2 months ago. He is on riluzone and buspirone. I Took him to his reg dr today. Gave him a nasial spray to help with the secrestions running down the back of his throat. That is why he is throwing up. To get rid of it. He went to a psychitrist for his depression. Hope he will be able to come to terms with als and what lies ahead of him. He seems better. Today. Thank you
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Old 11-15-2015, 05:49 AM #5 (permalink)
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Default Re: Tommy feeling sick

Michael, Most pALS and cALS suffer with anxiety and/or depression. Many take meds because the other ways to relieve it aren't available....like exercise. That part is not odd. A lot of pALS also think about suicide in the first few months after diagnosis. This too is not uncommon. Seeing a professional is the best thing you could have done for Tommy!

Any new med needs to be watched very carefully. If symptoms occur, always let the doctor know.

Post nasal drip/mucus is a nasty part of the disease for pALS. Nasal sprays really help and aren't systemic so Tommy will be able to cough out mucus and not have it dry up everywhere.

It is so important to maintain his weight and hydration. Becoming dehydrated can lead to headaches,cramping, pain, unsteadiness etc. Depending on his tolerance, I would try a smoothie with some honey,greek yogurt,ice cream, fruit. Or you could get a good soup and blenderize it so it is easier to eat.
The name of the game here is to keep calorie rich foods going in and staying in, fluids of some sort, and prevent falls.
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Old 11-15-2015, 09:11 AM #6 (permalink)
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Default Re: Tommy feeling sick

Quote:
Originally Posted by gooseberry View Post
The name of the game here is to keep calorie rich foods going in and staying in, fluids of some sort, and prevent falls.
Nice summing up for the entire journey.

Michael, emotionally, these first few months after diagnosis are some of the most challenging. You sound like you're doing the right things, though.
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Old 11-15-2015, 08:32 PM #7 (permalink)
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Default Re: Tommy feeling sick

thank you
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Old 11-16-2015, 03:41 PM #8 (permalink)
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Default Re: Tommy feeling sick

Houton ALS medical team advised my wife, diagnosed 6/1/11:
1. ALS patients who maintain or gain weight live longer and healthier than patients who do not - hence calorie rich foods.
2. Take in a lot of protein. 75 grams per day. We've rarely hit this but emphasize proteins.
3. Get flu and pneumonia shots immediately and boosters when needed. They gave Sharon hers immediately when they learned wshe did not have them.
4. Avoid family friends, anyody with a colds or flu. Amazingly neither of us have had one since her diagnosis.
5. Exercise and stay active, but do not exercise or do any activity that results in sore muscles. Their researchinidncates this tears down muscles and cause the nerves to die even faster.
6. Be ready to change routine as the disease progresses. My perspective is not that hit a new stage or step change in the disease but rather the disease slowly progresses to what we were doing is no longer appropiateo effective. Example, Sharon has been taking meds with apple sauce. This was effective until a few mnths aog. So I stated putting her vitamins in her smoothie and limited meds to apple sauce. This weekend we statred crushing meds and putting it in pudding.
7. They have all their patients take:
Vitamin C: 1000 mgs - 2x per day
Vitamin E: 1000 IU 2x per day [drop if start taking blood thinner such as Xeralto]
Beta Carotine: 25,000 IU 1x per day
Melatonin: 3 mg 20 mino before bed time [we take 5 mg]
Folic acid: 800 mcg 2x per day.
8. As already staed avoid falls. Beside the risk of immediate injury [one ALS patient fell and hit her head and died from blood clot in the brain], falls also traumatize the muscles which can accelerate the disease. One ALS patient with no leg problems fell of a short stool. He couldn't walk 2 months later.
9. All surgeries are lcoal anethesia unless life or death - no general A's. General A's cause depressed lung function which is chemical induced trauma.

That is enough or perhaps too much for now.
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Old 11-18-2015, 11:40 AM #9 (permalink)
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Default Re: Tommy feeling sick

thanks for all the info
it is very helpful.
will touch base again soon
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Old 11-23-2015, 08:33 AM #10 (permalink)
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Default Re: Tommy feeling sick

One more item. They recommended cholesterol between 200 and 230. Apparently the higher fat levels protect the nerves. Anyway, we adjusted Sharon's lipitor dosage and raised it from 160 to 220. Above 230 increases coronary risks too much.
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