Re: Hydration issue (What do YOU do?)

December 15, 2004

Well since I have no good experience I probally cannot help you too much. I do have to say thank you though. We had been considering starting night feeds on Grace for hypoglycemia issues. We have not started them, though, because we were warned of the possibility that she would stop eating during the day, therefore becoming dependent on the tube feeds. I had not heard of this ever happening before so I did not know how concerned I should be. Now I do know this can happen. Since there are other ways of controlling the low b/s (though not as well) and knowing this really does happen I don't think I want to even consider this. Grace is not underweight and does have a good appetite during the day (thanks to Periactin) so I don't think this should be an option for us anymore. Thank you again for adding your reasoning, as it has really helped us in our decision. I do hope Asenath can get more regulated again. It must be so hard for you having two kids on feeding pumps. I don't know how you do it sometimes. You must be a super strong woman.

Oh yeah, in a pinch I have used Gatoraid in her G tube to help with hydration. Sure it is not the best option, but a much cheeper one. We cannot get insurance to pay for it, because it is not considered medically necessary for Grace on a full time basis. I would bet they could prove Asenath's need though. Maybe Dr. Whiteman can write a script with an explanation.

Best wishes.

carrie Monitor your Hotmail inbox from MSN Messenger while chatting with friends – see how!

December 15, 2004

Well since I have no good experience I probally cannot help you too much. I do have to say thank you though. We had been considering starting night feeds on Grace for hypoglycemia issues. We have not started them, though, because we were warned of the possibility that she would stop eating during the day, therefore becoming dependent on the tube feeds. I had not heard of this ever happening before so I did not know how concerned I should be. Now I do know this can happen. Since there are other ways of controlling the low b/s (though not as well) and knowing this really does happen I don't think I want to even consider this. Grace is not underweight and does have a good appetite during the day (thanks to Periactin) so I don't think this should be an option for us anymore. Thank you again for adding your reasoning, as it has really helped us in our decision. I do hope Asenath can get more regulated again. It must be so hard for you having two kids on feeding pumps. I don't know how you do it sometimes. You must be a super strong woman.

Oh yeah, in a pinch I have used Gatoraid in her G tube to help with hydration. Sure it is not the best option, but a much cheeper one. We cannot get insurance to pay for it, because it is not considered medically necessary for Grace on a full time basis. I would bet they could prove Asenath's need though. Maybe Dr. Whiteman can write a script with an explanation.

Best wishes.

carrie Monitor your Hotmail inbox from MSN Messenger while chatting with friends – see how!

December 15, 2004

My son doesn't drink but as long as he is not vomiting or with diarrhea we

just use distilled water, and actually the Doctors said we could use regular

tap water. We have had success with this. With each can of formula we add

at least 50 cc's of water and then at night time we run just water. We

found running just water he felt better when he woke up. I guess the

formula is too heavy. He requires about 1700 cc's of water and sometimes

its tough getting that in and formula as well but you know your kid and can

figure out what is more important at the time, formula or water. when

figuring out the water you take into account water content in formula and if

you flush the g-tube that counts too.

>

>Reply-To: Mito

>To: " List Mito " <Mito >

>Subject: Hydration issue (What do YOU do?)

>Date: Wed, 15 Dec 2004 15:29:52 -0600

>

> We have been trying to regulate Asenath's feedings using the G-tube

>throughout the day and night now rather than just doing tube feedings at

>night time and trying desperately to get her to eat " something " during the

>day only to see her basically starve all day. Since her last

>hospitalization we have been noticing a tendancy for her to run low blood

>pressures and other symptoms indicating dehydration. We have noticed

>Pedialite added to her tube feedings help as well as pushing liquids during

>the day BUT when I lower or stop the Pedialite, she gets more dehydrated

>again. WHAT DO YOU GUYS REGULARLY ADD TO THE TUBE FEEDINGS TO KEEP YOUR

>CHILD HYDRATED AND HOW MUCH? I like adding Pedialite, but it is so

>expensive. Do any of you get it covered by insurance or medicaid???

>

>See www.caringbridge.org/ia/mitomomof9 and this link to see a real look

>into

>Mito using a photo collage of my girls at www.heartbeatsformito.org

>Darla: mommy to

>Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

>hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting,

>preseverating tendancies...

>Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

>GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

>disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

>syndrome, iron deficiency...

>Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

>Marquis (2) (some with Mito symptoms)

December 15, 2004

Check with your pharmacist...there might be a generic form of

pedialyte covered by medicaid. There is here in Ohio. is

55lbs and 4 1/2 yrs old and she recieves approx. 45-50 fl oz per day

by mouth or by tube. What she doesn't drink we make sure she gets by

tube no matter what. Those are our goals every day.If not she

dehydrates. water, pedialyte, gatorade, milk, it shouldn't matter if

she is eating. If she is not eating then she will need more

substance and you may want to talk to the doc about a formula.

Dawn

December 16, 2004

Darla,

I give Chelsea lots of extra fluid, it seems to do her a lot of good. She gets 4 120cal feedings, which is about 5 to 6 oz of food (I blend her food and it has water in it), plus enough water to make a 9 oz bolus. In between meals, she gets 4 to 5 oz veggie juice (that I also make) plus water to make a 9 oz bolus, 3x's/day. She gets a 60 cal snack before bed and at midnite or so, which is 3 oz of food, plus 6 of water. I also have to heed the call of nature in the wee hrs of the am, so I added an 8 oz bolus of water with a tsp of lemon juice (the lemon helps remove toxins from the blood stream). So, she gets about 40+ oz of water on top of her food and juice. Needless to say. leaks are a daily occurance, but she does seem to "run" a lot better with all the extra water. I also did work her up to this amount and use how many wet diapers she has as a gage to whether she needs more or not. This time of year, I don't worry too much, unless she is ill. When it is hot and humid, I will also try to sneak in an extra 4 to 6 oz of water. I use plain tap water, as pedialyte is quite expensive. If you are concerned about nutrition/electrolytes, V8 juice might be a good choice for her and is relatively inexpensive compared to Pedialyte. I would avoid fruit juice with her BS issues.

HTH, let me know if you have any ?'s=)

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

December 16, 2004

Darla,

I give Chelsea lots of extra fluid, it seems to do her a lot of good. She gets 4 120cal feedings, which is about 5 to 6 oz of food (I blend her food and it has water in it), plus enough water to make a 9 oz bolus. In between meals, she gets 4 to 5 oz veggie juice (that I also make) plus water to make a 9 oz bolus, 3x's/day. She gets a 60 cal snack before bed and at midnite or so, which is 3 oz of food, plus 6 of water. I also have to heed the call of nature in the wee hrs of the am, so I added an 8 oz bolus of water with a tsp of lemon juice (the lemon helps remove toxins from the blood stream). So, she gets about 40+ oz of water on top of her food and juice. Needless to say. leaks are a daily occurance, but she does seem to "run" a lot better with all the extra water. I also did work her up to this amount and use how many wet diapers she has as a gage to whether she needs more or not. This time of year, I don't worry too much, unless she is ill. When it is hot and humid, I will also try to sneak in an extra 4 to 6 oz of water. I use plain tap water, as pedialyte is quite expensive. If you are concerned about nutrition/electrolytes, V8 juice might be a good choice for her and is relatively inexpensive compared to Pedialyte. I would avoid fruit juice with her BS issues.

HTH, let me know if you have any ?'s=)

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

December 16, 2004

Darla:

Do you get the name brand or the generic form? I know you can get the

generic brand a lot cheaper. Plus there is a recipe on line for making

your own type of Gaterade such. It has the salt content and all that is

in the stuff that you buy at the store. Our summer doctor told me about

it and to use it on Leah if she ever starts to seem like she needs

hydrating. Is it just pedilyte or can you give her all sorts of

liquids? Broths, lemonade, even just plain water. You might want to

talk to a dietician and see what sort of liquids need to be given. I

know even with Leah they said if I can push a syringe of liquid in to

her mouth I can't remember how often, but at least to get some thing in

her. Good luck.

Nerenhausen

mom to Leah

Darla Klein wrote: