Re:- Hydration issue & question

[Guest guest]

My response to the GI would be, what about hydration during crisis's or

viral attacks, what about using it for meds rather than having the

difficulty of giving them orally? I wouldn't be too quick to get rid of a

g-tube. If you need it for a time period, there could be another time

period ahead where it is needed again. It sounds like she needs it just for

added liquids anyway.

Dry skin? Have you tried lotions? What color skin does she have? I

have two children that are African American from adoption and we deal with

dry skin issues quite a bit. We use special lotions that really help, but

can cause breaking out in others due to the oil base in them. If the

dryness is from the dry air and the season then lotions are the best cure

along with humidifiers in the home, but if it is hydration issues (like

Asenath-she gets dry skin when dehydrated), then more liquids through the

g-tube is definitely recommended.

My biggest question was how much liquids to people use through their

g-tubes separate from the formula. I got some great ideas from this group.

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 & question

>

>

> Darla,

>

> I would just use water. There is no reason that just plain tap water

> would be

> worse than an electrolyte solution. If the kids were drinking, that's what

> they

> would have most of the time.

>

> OK, we just went to the GI. Our will be 7 in March. She weighs 44

> pounds. She has bounced between 40 and 45 pounds for a year. The GI

> wants to think about getting rid of the g-tube. If we push her, she eats

> adequately by mouth. But we often have to feed her from the spoon. If left

> to

> her own devicies, she drinks about 16 oz of water a day. She also takes

> lasix.

> I am really concerned about her hydration. I do think that her body is

> fairly

> used to this amount of hydration--but she has really dry skin. Any ideas?

>

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

>