G-tube... anyone have this problem with healing? and anyone IGA deficient?

[Guest guest]

Last week, my daughter went into her hospital for a routine G-tube switch from

a Peg-tube, which was placed in June, to a Mickey tube (mickey button would

have been scheduled in two weeks). The GI nurse performed the procedure

using a video x-ray to make sure the new tube went into the stomach.

However, the new tube wasn't going into the stomach, and this was

determined to be because the stomach had not healed, and had fallen away

from the abdominal wall, back into it's natural position. In fact, we later

discovered her stomach had not formed any scar tissue. (her skin on the

outside, incidentally, looked perfect)

So, she had to have emergency surgery, and needed to be opened up

through the outside of the stomach to find the original " track " and replace the

tube. We have always mentioned to Daphne's doctors that blood tests have

shown that she is IGA deficient (less than 1 IGA) and immunosuppressed (her

t-cell and b-cell counts are also mildly low), and afterwards even the GI doctor

on-call wondered if the deficiency caused her lack of scar tissue.

She will be in the hospital until Monday (tonight, my husband has given me

respite and is staying with her).

I know a lot of you have kids who are on g-tubes, and was wondering if any of

you have experienced any problems like this. Also, we are not sure if

Daphne's problems are from a mitochondrial disorder (so far, no cause for her

seizures and other health problems has been discovered), so we are

wondering what type of immune labs your kids have (so we can compare to

see if they are similar.) And, perhaps, most importantly, we are wondering if

this would influence her ability to heal from her muscle biopsy.

The biopsy is actually only two weeks away. I am now very nervous about her

going under anesthesia again so soon, and even more nervous about her

ability to heal from this. Recently, she has had her seizures controlled by a

new med (vigabatrin), and has gained so much strength and sociability. I

worried about her overcoming this surgery, and she is already bouncing back,

but what about the next one? Will she be able to bounce back from another,

soon to come, surgery?

I am so frustrated because we've done a lot of things, trying to help her, that

have actually harmed her (i.e. she has infantile spasms, and, the first course

of treatment in the U.S. -- ACTH -- caused her to have blood pressures from

180/120-190/130, gall stones, kidney stones, severe muscle weakness and

osteoporosis, and - secondarily - allergic gastritis and even rhotavirus --

actually, it's the reason that we beleive she needed tube feeding in the first

place, since she ate by mouth until she started vomitting from all the ill

effects

of this medicine, and had to take 14 additional meds to control her blood

pressure, hypertension and electrolyte imbalance as a result of ACTH.) I am

so worried that, in trying to find the cause of her seizures, we will again do

more harm than good, that I feel like crying. I don't want to hurt her

anymore... I just want to love her as naturally as I did before she started

having neurological problems. I don't want to hold her down while someone

gives her an IV or draws blood, or - worse - give her shots, myself.

She makes so much progress whenever she " catches a break " in terms of her

health. Everytime we go into the hospital, there is another setback.

I am so sorry for writing/complaining so much. I know that everyone here has

gone through so much, many have gone through more than I can even

imagine. I just want my baby to grow into a happy, healthy human. I don't

care if she is retarded... I am just so scared that she will die, or have a life

of

misery.

(mom to Daphne 11 months old -- dx with Infantile Spasms at 3 months

old. Also has coarctation of the aorta, immature myelin, optic atrophy,

positive

CMV urine culture at 10 weeks, and chorioretinal scars in her right eye

consistant with CMV)