Stay Up to Date! Like us on Facebook  and Twitter  for the latest news and announcements    


In April (when it was around 70 degrees) I kept track of how much water it took to make me feel hydrated in a day and it was about 100 ounces. Just a few days ago (when it was 70 degrees) I did the same test. Only this time it took 200 ounces of water. My mito doctor said he thinks there is something wrong with my ability to absorb water (what a shocker). Even using electrolytes doesn't seem to help much. He said the next time I am completely unable to move I should go to the hospital and get IV fluids with a saline bolus. I figure there are probably some people on this forum who have had IV fluids! Do they just replace drinking? Or is it easier for the body to absorb fluids via IV? Does anyone get IV fluids in a non-emergency setting? What I don't get is that compared to most people with mito I am able to digest food fairly well. It seems like digesting food would be harder than absorbing water!  

dancer21's picture



Might sound like a strange question (but nothing is ever normal with mito)do you use a lot of salt. my cardiologist of all people said to salt everything because the salt iill help absorb and keep the fluids that you are able to drink. I had 3 central lines for hydration . for me they were awesome they helped with all of symptoms. i did it everynight. i did still drink normally but the iv fluids were the extra boost i needed.
Anthonys mom's picture

Anthonys mom


Hey, Anthony drinks atleast 100oz of liquid a day and he is only two. If he drinks any less per day we are usually in the ER for IV Fluids. All the regulars know him there. He ends up there almost every other month. Since we have gotten his feeding tube placed it is easier to help him control.Although lately even his feeds thru the tube are getting harder to get into him.Sometimes he is to tired to drink and other times he can drink 4 glasses at a time. I do know the IV helps him soooo much. But even with that sometimes we end up staying for a couple days to help him bounce back. Does anyone get continous drip of fluids. I think it would help him so much with everything. By the way love your posts. It seems like you guys have so much in common with my little man! He really helps me to have you guys here!
khawlah's picture



I have not had to go the IV route(yet). My 2 year old has a g tube and pedilyte in the g tube makes for a very happy boy! My son does digest food well also. He has issues when he is having a 'down' time but overall he digests well. My son's doctor explained to me that in people with issues of energy metabolism the kidneys do not reabsorb the water into the body well and therefore often urinate too much (my son!!) the electrolytes help the absorption process. Since using pedilyte for my son his urination has decreased somewhat so I think that is very true in his case.My son gets pedilyte in his tube during the night and during the day and when this is done he does drink much less orally. If his tube hydration is down at all he gets very thirsty. I think lots of people use central lines and IVs for hydration b/c it is so much less demanding on the body because it does not have to go through the digestive system. I think I have rambled and not really answered anything for you except to say that many people here have loads of problems with hydration and finding the right method for you can really change your daily life--it does for us. If IV work maybe you could do a regular schedule. My aunt is a cancer patient and she goes to her doc's office once or twice a week sometimes for hydration into her central line--it just changes her life when she does this proactivly. All the gatorade in the world does not seem to match it.
beck7422's picture



I have had problems staying hydrated. Lemonaid once per day is usually enough to fix this problem. My body doesn't tolerate salt well (the next day with all my muscles screaming in pain), but occassionally I need it if I have been sweating too much. Then I have a soup with a little bit of salt in it. I do drink a lot of water 60 oz minimum, but usually well over 100 oz per day.
cellolover's picture



Why does lemonaid help more than water?
Tina_EvesMum's picture



You May actually find that Coca cola (the real thing) Is even better than lemonade, it actually has a really good concentration of the essential minerals etc. Flat Coke is ideal for anyone recovering from an episode of Diareoah and Vomiting. The reason it is better than water is because it is nearer the rehydration fluid in its trace elements salt and sugar. Hugs
smileyface's picture



Do you have dysautonomia? People with dysautonomia lose water like crazy...that some of them are even tested for diabetes insipidus (not the high sugar one). I drink 100-200 ounces a day. Some of the sports drinks aren't very high in salt, so be careful and read the labels...I have a list of all the sports drink and their nutrition facts if you want. Also, there are medications/supplements for helping to retain water (florinef, licorice root, and DDAVP). Although they might have yucky side effects especially if you're sensitive to meds. I've tried IV fluids and medications and really none of it helped that much...I just stick with pedialyte. I did notice that with the IV fluids that if they jack up the salt content a bit and give me a D5 bolus instead of a saline one that helps with retaining some.

beck7422's picture



I don't know why Lemonaid helps me feel less dehydrated. Since being on the Levocarnitine I have had fewer instances of dehydration. Before the Levocarnitine (started in February), I was dehydrated almost every day. I can't have any of the Energy drinks due to my food allergies. The only IV I tolerate is Lactated Ringers. I have a food allergy to Corn, so that removes several IVs as an option. I react badly to a Saline IVs. I do find that I need one caffeinated beverage per day. I currently prefer Pepsi One. Without it, I fall asleep easily usually embarrassingly. Example: Falling asleep while talking with someone.
oriablue's picture



I can relate to these issues, particularly with yours, beck7422. As I have severe Gastroparesis/am cachexic, I am on TPN clear bags (my cholesterol is 339 and rising rapidly/LDL 233 and rising rapidly), and FIVE Liters of Lactated Ringer's via Portacath, 5X a week. If I DON'T use the Ringer's or the TPN, I go immediately into hyperchloremic metabolic acidosis, along with sudden drops in glucose (the last time I had a "flare," I was drinking water that day, and my glucose dropped to 45, but I did not know it until 6 hours later, when I was nearly comatose. I find that the only drinks that do not dehydrate me are either diet coke/diet mt. dew/ or these Polar Sparkling Ice drinks (which I am mostly using now). If asked to fast or use just water, I could drink gallons and my mouth would stick closed, I would be that dry.

People keep saying that I'm causing my problems by not drinking water, but the only way my labs will stay reasonably stable is if I do the 5 Lactated Ringer's bags (the regular saline totally dehydrates me as well- I can feel it sapping all my resources away). I also cannot drink any goopy sugary drinks or regular soda (it makes me throw up- allergy to corn syrups etc.) I can eat solid foods with a little sugar, but only after a lot of protein to keep the glucose up.

I have found that increasing the LR and having it by Port (or IV) has helped with movement of bowels somewhat, but it takes a few days to kick in when de-accessed for two days. I'm just trying to save my colon, and want to still eat as long as I can.

The Diet Coke also helps move the bowels (sometimes). I, too, have low Carnitine.

Thanks for this forum- I always thought I was nuts for thinking that water was dehydrating me, but it's really true. If I had an endless spigot of water in paradise, I'd die of dehydration.

Pretty darn weird- anyone else allergic to Vitamin D?