g-tube

[Guest guest]

Liz,

My son Max is 16. He had a g-tube for many years - since infancy.

We pulled it several years ago, maybe at age 14 or so????, but he

had one put in again last summer when he had the Nissen and

pyloraplasty. We pulled it again in December because he was eating

well and not using the tube at all, but Max got really sick again in

March/April and we had to have it put in again.

I believe that the waiting period for taking one out is not using it

for 18 months to 2 years. We had definitely done that waiting

before pulling it the first time. No one had told us that we had

to wait that long - it just happened. But we were so anxious to get

rid of the newer one that after Max had not used it since September,

we thought we would be doing a good thing by pulling it. His self-

esteem was at stake and we just thought that was the most important

part. I guess we were wrong. When Max got sick, it was another 12

days in the hospital because we had to first decide to put one in,

then prep him for it and then help him recover and get used to the

pump feedings again. Now we promised to keep it in for the 2 years

and hopefully we will not need it this winter. Each time he gets

sick and has to use it, it starts the clock all over again.

Jodi Z.

[Guest guest]

Liz,

Another thing....Are you correct in saying that your 9 year old is

36 pounds???? If so, that is very, very small for an RSS child at

that age. What is his height? Is he on ght? I have to admit that

I am alarmed by his size.

Jodi Z.

[Guest guest]

Hi Liz -

I have a nine yr old girl with g-tube - this must be the summer for

questioning g-tubes - tte has not used her g-tube this summer - not sure

about the weight = we go to the endo in 2weeks = Removing the g-tube has become

and issue - she is embarrased by it now - I think that if we can keep up a

weight gain then hopefully we can take the tube out - I think we really have 2

big issues here - 1- they need this for weight - but 2) now we have to start to

deal with all the social issues that come with regular - preteens never mind all

her other issues....................always something.

- mom to tte 9yrs g-tube - gh

-------------- Original message --------------

We have a nine year old son with RSS. He still has his g-tube in,

but has been eating well. He has gained 3 pounds this summer, and we

have not used the tube at all. He weighs 36 pounds. Does anyone else

have an older child with a g-tube? How did you decide when he/she

was old enough and eating enough to take it out? Any input would

help. Thank you.

Liz

[Guest guest]

Liz,

I have a 10 year old with a g-tube, and he is nowhere near ready for it to come

out. That's

great that your son is doing well with eating and gaining weight. My 10 year

old is 48 lbs.

at 50.5 " and I think he is small for a RSS child who has been on GH for 3 years.

How tall is

your son? His weight concerns me, especially when you are considering getting

rid of his

g-tube.

Kim C.

> We have a nine year old son with RSS. He still has his g-tube in,

> but has been eating well. He has gained 3 pounds this summer, and we

> have not used the tube at all. He weighs 36 pounds. Does anyone else

> have an older child with a g-tube? How did you decide when he/she

> was old enough and eating enough to take it out? Any input would

> help. Thank you.

>

> Liz

[Guest guest]

Hi my name is and my daughter mia is 2 and may have mito

we have been thru so many test no dx yet sept 15th she goes for her

muscle bx.She cannot sit,walk,talk,crawl,eat, she only really rolls

around her legs are strong though,she has generilized hypotonia in

her trunk.The doctors just started her on the q-10 emzyme i

basically had to invent something to get it thru her g-tube it's

kind of a pain.Does anyone have any suggestions on this,I could

really use any responses with anything about my daughter as far as

any other test i could do.I'm desperate.

[Guest guest]

Hi ,

I wish I had answers for you regarding the test results - hopefully, the biopsy

will tell you what you need to know. In terms of the COQ-10 - do you get the

liquid form? My son gets the liquid form (you can order it from EPIC4HEALTH.COM)

and it goes fairly easily through the g-tube. If it gets slow or seems thick - I

just soak the bottle in warm water before I put it in the syringe for his g-tube

and it seems to go through much easier. Have they thought about prescribing

Carnitor? It is the prescription form of L-carnitine (use the prescription form,

not the over the counter!). It is possible that it will help with her muscle

strength and tone - it's a common element of the mito " cocktail " .

Anne R

[Guest guest]

,

Until you can get the Tishcon brand I would recommend piercing a CoQ 10 capsule and placing it in a small amount of baby applesauce, dilute it with water and it goes down a tube very easily. We did that for quite a while until the LiQ10 syrup became available. HTH, Loriann- mom to 3 boys- & 12 yrs old and Lucas 8 years old with suspected mitochondrial encephalomyopathy, hypothyroidism secondary to pituitary malfunction, cortical visual impairment, abnormally slow EEG, ataxic, global developmental delay, impaired motility, GERD, J-tube fed since 4 years of age but has the sunniest disposition

[Guest guest]

Thanks sooo much for the info.Good luck with your son.My daughter has no dx yet but will soon hopefully.Thanks again, stephanie

-- Re: g-tube

,

Until you can get the Tishcon brand I would recommend piercing a CoQ 10 capsule and placing it in a small amount of baby applesauce, dilute it with water and it goes down a tube very easily. We did that for quite a while until the LiQ10 syrup became available. HTH, Loriann- mom to 3 boys- & 12 yrs old and Lucas 8 years old with suspected mitochondrial encephalomyopathy, hypothyroidism secondary to pituitary malfunction, cortical visual impairment, abnormally slow EEG, ataxic, global developmental delay, impaired motility, GERD, J-tube fed since 4 years of age but has the sunniest dispositionPlease contact mito-owner with any problems or questions.

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