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

[Guest guest]

What's the deal with cmv my daughter Mia had a test and they said she had cmv but most likely i didn't give it to her that she got it from daycare.Is it bad?

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

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

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hi Everyone,I'm trying to find out more info on cmv what exactly is it?Also has anyone heard of fragile-x syndrome it has alot of symptoms of mito i think?www.fraxa.org

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

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

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

,

CMV is a very common virus. About 50% of the population - higher than that

in urban areas - have antibodies to it. It causes mono-like symptoms in

some; others get it without even knowing they have it. However, it is an

opportunistic virus, in that it can cause more severe problems in the

immunocompromised and in the developing fetus, if the mother catches it

while pregnant.

For example, CMV is the leading cause of blindness in people with AIDS. It

also can affect the organs of the developing fetus, including the brain. Some

fetus's don't have any reaction to it; while others go deaf, blind and/or end up

with mental retardation. Daphne tested positive for CMV at ten weeks old,

and they can't find any evidence that she caught it while a fetus (no

calcifications in her brain, no liver disfunction, no CMV genomes in her spinal

fluid) -- but it would explain a lot of her problems (then again, so would a

mito

disorder).

Unless Mia has a compromised immune system, she should be able to

overcome the CMV without a problem (I am assuming she is not a newborn or

very young infant). If her immune system is weak, though, you may want to

schedule an appointment with an opthamologist to have her checked for any

retinitis, and also maybe with someone in infectious disease to see if they

want to do any testing or give her an antiviral to help her fight it.

> What's the deal with cmv my daughter Mia had a test and they said she had

> cmv but most likely i didn't give it to her that she got it from daycare.Is

> it bad?

>

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

anyone

> IGA deficient?

>

> 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)

>

>

>

> Please contact mito-owner with any problems or

questions.

>

>

>