Re: - Hydration issue (What do YOU do?)

December 15, 2004

I totally understand your hesitation about tube feedings during the

night. When we started giving her tube feeding in the spring of 2003, she

was so malnourished and would not eat anything, so we did whatever helped

her gain weight and become healthier. Then after a while we began wondering

if the night feedings were hindering her day feeds but after trial and error

we found that no matter how little we gave her at night, she STILL wouldn't

eat during the day. We know stroke activity is the cause for her feeding

issues. She has had many times where she has been affected in her mouth and

we wonder about the appetitive center in her brain also. She was chewing

gum today and constantly gagging on it and having to take it out as to not

vomit. The lack of coordination in her mouth is part of her problem, her

tummy issues and nausea is another part. She says it makes her hurt to eat

and it makes her throw up so she is also afraid to eat. Sad really. I wish

she could eat orally, but am so glad there is such a thing as G-tubes! It

isn't easy having two that have to drag their backpacks around now, but the

older kids are so helpful, thankfully. Zipporrah can't wear hers yet as it

is too heavy still and Asenath hates to wear hers as is fatigues her too.

It is the funniest thing to see Kezia (10 months younger than Asenath)

carrying it around for Asenath. She is such a help to Asenath and enjoys

doing it. Makes her feel like a big girl. It has been a big change going

from only night feeds to day and night feeds with Asenath. We always hoped

she would start eating more sometime, but the opposite has happened because

of the continued stroke activity. I will say she is definitely doing better

on day & night feeds compared to the night feeds with daytime oral feeding

pushes. She just won't eat! Anyway, I hope Grace is able to handle the

hypoglycemia issues without the night feeds, but if not, it really isn't too

bad to do night feeds. Maybe just little bits throughout the night rather

than larger amounts would help her, yet not hurt her hunger. ?

Thanks for writing.

RE: Hydration issue (What do YOU do?)

> 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

>

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December 16, 2004

We do give Asenath many varieties of liquids and that really isn't my

question, but rather how much you guys put through the g-tubes (or orally)

per day to keep them hydrated. It just seems Asenath needs much more lately

than she used to, so I wanted to know an average amount suggested to give

her. The reason I have been using the Pedialite through the g-tube is

because that is what the docs recommended and I figured it must be the best

for rehydrating since they wanted us to use it. I have used lots of other

types as well, as K. also gave me some good ideas of substitutes

for Pedialite that would do the same thing. I will check out some other

recipes as well online. Thank you.

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...

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)

Re: Hydration issue (What do YOU do?)

>

> 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:

>

> > 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)

> >

> >Please contact mito-owner with any problems or questions.

> >

December 16, 2004