Re: -sodium depletion issue

[Guest guest]

Hi, I have a little girl who regressed from being totally breastfed to

100% G-tube fed due to stroke activity. I am encouraged to try to nurse her

some so she will keep interest in oral feeding for future possibilities, but

she doesn't get very much due to lack of coordination of the suck, swallow,

breathe pattern. I don't have any suggestions about the sodium depletion as

we haven't had any experience with it, but I did want to let you know there

are definitely those of us who have had kids lose abilities in the feeding

department. My daughter does however deal with gastric dumping syndrome and

low iron levels from malabsorption. I am unsure what her sodium levels look

like but haven't been told they are low so assume they must be ok?... I was

warned to be careful about how much phlegm loss or siphoning was done from

her burp tube though so as not to deplete her sodium/electrolyte levels.

How does your daughter do with the bottle? Does she seem to be

struggling with that too or is all ok with it? My daughter has absolutely

no idea how to suck on a bottle or pacifier. We have tried since she was

about 4 months old but her tongue won't cup and therefore she cannot latch

onto the bottle. When we did feed her orally she also had tons of problems

with pneumonia, excessive phlegm, tons of gagging and coughing, drops in her

pulse-ox, sleep apnea, and reflux/dry heaves. It has been much better since

she got the G-tube. Most of her issues have gotten so much better.

Let me know if I can help you further. Hope this was of some benefit

or interest.

Darla: mommy to

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

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

Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, 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)

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

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[Guest guest]

Hi ,

I realise this is probably different than your son, jsut based on

the age difference (im 22) but i have had sodium issues for almost 2

years now, and have dealt with the side effects of it (which for me

have been severe).

Has had his cortisol levels tested yet? If he hasnt I

strongly suggest you ask them to do a cortisol test, as well as an

ACTH stimulation test (and they should probably test his urine for

sodium, as it may be a matter of the kidneys excreting too much...

this is my problem)... this will measure how well his adrenal glands

are functioning. Cortisol is a hormone that the adrenal glands

create, and one of its functions is to 'hold onto' sodium. For me,

my cortisol levels and ACTH stimulation test (this involves them

drawing blood, then injecting a hormone that will stimulate the

adrenals, then they draw blood again, to see how well the glands

react to the hormone... it will tell you if their doing what their

supposed to). were totally normal, however the sodium levels in my

urine were high... in the end they never figured out what was

causing it all, but treat me as though my adrenals do not work (even

though all the tests say they do). I take a medication called

florinef, which is essentially 'artificial cortisol' in that it

helps my body hold onto sodium, because for some reason it wont do

it by itself.

When im not on meds, my blood pressure is about 60/40 (normal is

120/70... 60/40 in a healthy person would be considered a big

emergency), and my heart rate is about 160... (normal is 70ish). so

it is a big problem for me...

They may have already tested his cortisol and all that... but if

they havent i would really push it, as undiagnosed adrenal problems

can become an emergency if they arent treated....

I hope you get some answers soon!

Keely (mom to , 22 months, possible mito)