Re: I think my daughter has a mito disorder

February 1, 2000

,

It isn't weird at all that you think everything is fine while you are

doing things that you know are not normal . After all they are your

normal everyday things and will continue to be as long as you do them.

I was in the same boat when Corbin was a baby. I already had 2 children

and have 9 bothers and sisters with 25 children all together. So,

I had been around alot of kids in my life time and I knew for sure that

a baby crying constantly and acting like he didn't know how to eat was

NOT normal. We went to the doctor some times 3 to 5

days a week and I had postpartum depression. I don't know who wouldn't.

I had a 4 yr old that had been traumatized when her baby brother stopped

breathing. She found him and for some reason thought it was her fault.

She was also going to speech therapy 1 day a week and preschool 2 days

a week. <SIGH> I also had an 18mth old baby boy who seemed

to get pneumonia every time he got a little cold. On top of that

anytime I left my home I had to get all of them out the door, plus the

apnea monitor (that for some reason always went off at the worst times!)

The monitor was like a fourth child. A very loud and annoying 4th

child. On top of that I had to remember his medication. You see I

looked at the medication as a life or death situation. I guess it

was. They told me the reflux caused him to stop breathing. I felt

if I forgot to give it to him he would die! So I can

relate to what you have gone through, although I don't have to deal with

the drip feeds.

Don't feel bad about blurting that all out. I think when we share

the intimate details of our lives it brings us all closer together.

It's liberating also to just let it all out. And look I just sort

of did the same thing.

Hang in there. When is 's b-day? It must be close

to Corbin's.

Barbara

mom to 5, Max almost 3, relfux and Corbin 17mths, possible

mito, reflux, asthma, oral motor and motor planning dyspraxia and now with

mucopolysaccharides in his urine?

March 3, 2000

I hope you find the list helpful! It sounds like you need to get a new

doctor The fact is that MOST mitochondrial disorders are not maternally

inherited but rather sporadic or autosomal recessive - in which case there

would be little or no family history. Additionally, elevated lactic acid is

most definitely not always present. My son didn't have elevated lactic acid

levels until recently and he is now 7 years old - so thankfully his docs

didn't wait until the lactic acid levels were elevated!

Terri

>From: bunnyr@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: I think my daughter has a mito disorder

>Date: Fri, 03 Mar 2000 20:07:00 -0000

>

>My daughter, elizabeth is 16 months old. She has low muscle tone, is

>currently on an NG tube because for some unknown reason she will not

>take anything orally. her lactate levels were only slightly elevated

>and she is having siezures. She stares off a lot of times during the

>day. She can not walk yet. She has little braces on her feet to help

>with the muscle tone thing. She is scheduled to have an MRI done. The

>only thing that worries me is that the neurologist says that he only

>wants to do a muscle biopsy if the lactate levels are elevated and he

>says that since there is no history of anything on my side of the

>family he doesn't think it is a real possiblity. I think I may push

>for a biopsy anyway. also has significant developemental

>delays. she can not talk and she doesn't understand language although

>she can hear. she doesn't even know her name.

>What's worse is I am dealing with a nutritionist who seems to think

>that once gets hungry enough she will all of a sudden start

>eating. Even though she was starving herslef before shich is why she

>had to be put on the NG tube in the first place.

>also, for some reason was vomiting several times a day for

>no reason with 160cc bolus feedings on the tube. the only thing that

>has stopped her from doing it is that we put her on a continuous

>drip. Also she has seizures through out the day and little jerks and

> " shivers. " Her first EEG was normal and then her second one was just

>done yesterday. If the shivers and jerks are not seizures I don't

>know what they are. Except that they are with the staring off. There

>is a lot going on with this little girl and would be more than happy

>to talk to anyone going through the same thing.

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

March 3, 2000

,

Yes, he was diagnosed by muscle biopsy. At the time none of his lab tests

were coming back abnormal and all of his MRIs had been normal. We used to

say he was the most normal abnormal kid around! When he had the biopsy

he was 5.5 years old and it showed that he had complex I and IV

deficiencies. His muscle pathology was also very abnormal. If you'd like

to read more about him I have a website at http://www.flash.net/~tmason

which documents a lot of stuff - including medical records and the

evaluation from when he had the biopsy done by Dr. Shoffner. When we did

see Shoffner he also did another MRI which was no longer normal and showed

that he had Leigh's (a specific type of mito disorder) - which I guess is

also unusual in that the MRI usually shows Leigh's when they become

symptomatic. It just goes to show you that there are no absolutes when it

comes to mito disorders.

Terri

>

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: I think my daughter has a mito disorder

>Date: Fri, 03 Mar 2000 12:37:31 -0800

>

>So how was your son diagnosed? By a muscle biopsy? I can't tell you how

>thrilled I am that you wrote me.

>This has been very difficult for me. Everything about screams

>Mito! If it is not we need to rule

>it out with a biopsy.

>Thank you so much for your reply

>

>Terri Mason wrote:

>

> >

> > I hope you find the list helpful! It sounds like you need to get a new

> > doctor The fact is that MOST mitochondrial disorders are not

>maternally

> > inherited but rather sporadic or autosomal recessive - in which case

>there

> > would be little or no family history. Additionally, elevated lactic

>acid is

> > most definitely not always present. My son didn't have elevated lactic

>acid

> > levels until recently and he is now 7 years old - so thankfully his docs

> > didn't wait until the lactic acid levels were elevated!

> >

> > Terri

> >

> > >From: bunnyr@...

> > >Reply-To: Mitoonelist

> > >To: Mitoonelist

> > >Subject: I think my daughter has a mito disorder

> > >Date: Fri, 03 Mar 2000 20:07:00 -0000

> > >

> > >My daughter, elizabeth is 16 months old. She has low muscle tone, is

> > >currently on an NG tube because for some unknown reason she will not

> > >take anything orally. her lactate levels were only slightly elevated

> > >and she is having siezures. She stares off a lot of times during the

> > >day. She can not walk yet. She has little braces on her feet to help

> > >with the muscle tone thing. She is scheduled to have an MRI done. The

> > >only thing that worries me is that the neurologist says that he only

> > >wants to do a muscle biopsy if the lactate levels are elevated and he

> > >says that since there is no history of anything on my side of the

> > >family he doesn't think it is a real possiblity. I think I may push

> > >for a biopsy anyway. also has significant developemental

> > >delays. she can not talk and she doesn't understand language although

> > >she can hear. she doesn't even know her name.

> > >What's worse is I am dealing with a nutritionist who seems to think

> > >that once gets hungry enough she will all of a sudden start

> > >eating. Even though she was starving herslef before shich is why she

> > >had to be put on the NG tube in the first place.

> > >also, for some reason was vomiting several times a day for

> > >no reason with 160cc bolus feedings on the tube. the only thing that

> > >has stopped her from doing it is that we put her on a continuous

> > >drip. Also she has seizures through out the day and little jerks and

> > > " shivers. " Her first EEG was normal and then her second one was just

> > >done yesterday. If the shivers and jerks are not seizures I don't

> > >know what they are. Except that they are with the staring off. There

> > >is a lot going on with this little girl and would be more than happy

> > >to talk to anyone going through the same thing.

> > >

> >

> > ______________________________________________________

> > Get Your Private, Free Email at http://www.hotmail.com

> >

> > ------------------------------------------------------------------------

> > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> > http://click./1/936/1/_/368657/_/952115543/

> > ------------------------------------------------------------------------

> >

> > Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

March 3, 2000

In a message dated 03/03/2000 12:34:28 PM Pacific Standard Time,

bunnyr@... writes:

> My daughter, elizabeth is 16 months old. She has low muscle tone, is

> currently on an NG tube because for some unknown reason she will not

> take anything orally. her lactate levels were only slightly elevated

> and she is having siezures. She stares off a lot of times during the

> day. She can not walk yet. She has little braces on her feet to help

> with the muscle tone thing. She is scheduled to have an MRI done. The

> only thing that worries me is that the neurologist says that he only

> wants to do a muscle biopsy if the lactate levels are elevated and he

> says that since there is no history of anything on my side of the

> family he doesn't think it is a real possiblity. I think I may push

> for a biopsy anyway. also has significant developemental

> delays. she can not talk and she doesn't understand language although

> she can hear. she doesn't even know her name.

> What's worse is I am dealing with a nutritionist who seems to think

> that once gets hungry enough she will all of a sudden start

> eating. Even though she was starving herslef before shich is why she

> had to be put on the NG tube in the first place.

> also, for some reason was vomiting several times a day for

> no reason with 160cc bolus feedings on the tube. the only thing that

> has stopped her from doing it is that we put her on a continuous

> drip. Also she has seizures through out the day and little jerks and

> " shivers. " Her first EEG was normal and then her second one was just

> done yesterday. If the shivers and jerks are not seizures I don't

> know what they are. Except that they are with the staring off. There

> is a lot going on with this little girl and would be more than happy

> to talk to anyone going through the same thing.

>

Hi -

I think that you are experiencing a pretty common scenario . . . about a year

and a half agot we faced some of the same things you are facing now.

First--children with mito will not ALWAYS have elevated lactic acid. My son

has a confirmed mitochondrial disorder. We actually have never had a time

when his lactic acid was measured that it came back elevated. We suspect

that it was probably elevated once when his electrolytes were off balance and

his CO2 was low. But during the period of time that we were searching for a

diagnosis I was told repeatedly that he could not have mito because his

lactic acid was not elevated (nor were there any other abnormalities in the

numerous metabolic screenings that were conducted).

was failure to thrive, and would have starved himself to death if we had

just let him eat at his own discretion. He just never got hungry. Even as a

newborn, he would sleep through the night without waking up hungry. He does

not have any structural problems, his swallow studies have been normal. He

did have reflux, but even if he hadn't, I don't think he would eat normally.

He just doesn't.

If your child has mito, the " let them go without food, and when they get

hungry enough, they will eat " strategy is really quite dangerous for her.

Patients with mito do not do well if they fast for long periods of time. In

fact, that is what triggers seizures for --long periods of fasting,

usually accompanied by illness. His body has trouble producing enough energy

for normal, day-to-day life. When you add the stress of an illness, and then

do not provide enough fuel, he suffers quickly!

Here are some information links that may help you:

<A HREF= " http://biochemgen.ucsd.edu/mmdc/ep-toc.htm " >Physician's Guide to

Mito</A>

<A HREF= " http://www.mdausa.org/publications/Quest/q64mito.html " >MDA / Quest

6-4 / Mitochondrial Myopathy -- An Energy Crisis in the Cells</A>

<A HREF= " http://www.umdf.org/Index.htm#NoFramesNavigation " >The United

Mitochondrial Disease Foundation</A>

<A HREF= " http://www.imdn.org/ " >International Mitochondrial Disease Network</A

>

The first on the list will take some time to download, but I highly recommend

it. I took copies to our doctors . . . it is what finally convinced our

pediatrician to refer for testing.

Good luck and feel free to ask more questions!!!

Kathy C.

mom to and (mitochondrial encephalomyopathy, complex I and III

defects)

March 3, 2000

Bunny, have you seen a GI doc for the reflux? It sounds like she definitely

has some issues that they could help you with. It may be a physical thing

causing the reflux. and have you seen a geneticist regarding your daughter's

delays, etc... I would also recommend seeing a developmental pediatrician.

I haven't seen one myself yet but plan on it when and if I am aproved for the

deeming waiver. I have spoken with a couple of moms who saw a dev ped and

they were the first docs to diagnose their child. hope this helps. best

of luck to you.

cathy

March 3, 2000

So how was your son diagnosed? By a muscle biopsy? I can't tell you how

thrilled I am that you wrote me.

This has been very difficult for me. Everything about screams Mito! If

it is not we need to rule

it out with a biopsy.

Thank you so much for your reply

Terri Mason wrote:

>

> I hope you find the list helpful! It sounds like you need to get a new

> doctor The fact is that MOST mitochondrial disorders are not maternally

> inherited but rather sporadic or autosomal recessive - in which case there

> would be little or no family history. Additionally, elevated lactic acid is

> most definitely not always present. My son didn't have elevated lactic acid

> levels until recently and he is now 7 years old - so thankfully his docs

> didn't wait until the lactic acid levels were elevated!

>

> Terri

>

> >From: bunnyr@...

> >Reply-To: Mitoonelist

> >To: Mitoonelist

> >Subject: I think my daughter has a mito disorder

> >Date: Fri, 03 Mar 2000 20:07:00 -0000

> >

> >My daughter, elizabeth is 16 months old. She has low muscle tone, is

> >currently on an NG tube because for some unknown reason she will not

> >take anything orally. her lactate levels were only slightly elevated

> >and she is having siezures. She stares off a lot of times during the

> >day. She can not walk yet. She has little braces on her feet to help

> >with the muscle tone thing. She is scheduled to have an MRI done. The

> >only thing that worries me is that the neurologist says that he only

> >wants to do a muscle biopsy if the lactate levels are elevated and he

> >says that since there is no history of anything on my side of the

> >family he doesn't think it is a real possiblity. I think I may push

> >for a biopsy anyway. also has significant developemental

> >delays. she can not talk and she doesn't understand language although

> >she can hear. she doesn't even know her name.

> >What's worse is I am dealing with a nutritionist who seems to think

> >that once gets hungry enough she will all of a sudden start

> >eating. Even though she was starving herslef before shich is why she

> >had to be put on the NG tube in the first place.

> >also, for some reason was vomiting several times a day for

> >no reason with 160cc bolus feedings on the tube. the only thing that

> >has stopped her from doing it is that we put her on a continuous

> >drip. Also she has seizures through out the day and little jerks and

> > " shivers. " Her first EEG was normal and then her second one was just

> >done yesterday. If the shivers and jerks are not seizures I don't

> >know what they are. Except that they are with the staring off. There

> >is a lot going on with this little girl and would be more than happy

> >to talk to anyone going through the same thing.

> >

>

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

> ------------------------------------------------------------------------

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> http://click./1/936/1/_/368657/_/952115543/

> ------------------------------------------------------------------------

>

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

March 3, 2000

WOW Kathy,

I can not thank you enough. I'm going to take these to the neurologist. Thank

you so much.

I have been just about gone nuts with these doctors. Especially the nutritionist

with her feeding

strategies.

elizabeth also has a nail that is yellowing all the way to the base. I don't

know if it will eventually

fall off or what. I showed it to the doctor and he didn't seem concerned. Anyone

else with this problem.

Also is the vomitting normal for mito?

KCorley309@... wrote:

> From: KCorley309@...

>

> In a message dated 03/03/2000 12:34:28 PM Pacific Standard Time,

> bunnyr@... writes:

>

> > My daughter, elizabeth is 16 months old. She has low muscle tone, is

> > currently on an NG tube because for some unknown reason she will not

> > take anything orally. her lactate levels were only slightly elevated

> > and she is having siezures. She stares off a lot of times during the

> > day. She can not walk yet. She has little braces on her feet to help

> > with the muscle tone thing. She is scheduled to have an MRI done. The

> > only thing that worries me is that the neurologist says that he only

> > wants to do a muscle biopsy if the lactate levels are elevated and he

> > says that since there is no history of anything on my side of the

> > family he doesn't think it is a real possiblity. I think I may push

> > for a biopsy anyway. also has significant developemental

> > delays. she can not talk and she doesn't understand language although

> > she can hear. she doesn't even know her name.

> > What's worse is I am dealing with a nutritionist who seems to think

> > that once gets hungry enough she will all of a sudden start

> > eating. Even though she was starving herslef before shich is why she

> > had to be put on the NG tube in the first place.

> > also, for some reason was vomiting several times a day for

> > no reason with 160cc bolus feedings on the tube. the only thing that

> > has stopped her from doing it is that we put her on a continuous

> > drip. Also she has seizures through out the day and little jerks and

> > " shivers. " Her first EEG was normal and then her second one was just

> > done yesterday. If the shivers and jerks are not seizures I don't

> > know what they are. Except that they are with the staring off. There

> > is a lot going on with this little girl and would be more than happy

> > to talk to anyone going through the same thing.

> >

>

> Hi -

>

> I think that you are experiencing a pretty common scenario . . . about a year

> and a half agot we faced some of the same things you are facing now.

>

> First--children with mito will not ALWAYS have elevated lactic acid. My son

> has a confirmed mitochondrial disorder. We actually have never had a time

> when his lactic acid was measured that it came back elevated. We suspect

> that it was probably elevated once when his electrolytes were off balance and

> his CO2 was low. But during the period of time that we were searching for a

> diagnosis I was told repeatedly that he could not have mito because his

> lactic acid was not elevated (nor were there any other abnormalities in the

> numerous metabolic screenings that were conducted).

>

> was failure to thrive, and would have starved himself to death if we had

> just let him eat at his own discretion. He just never got hungry. Even as a

> newborn, he would sleep through the night without waking up hungry. He does

> not have any structural problems, his swallow studies have been normal. He

> did have reflux, but even if he hadn't, I don't think he would eat normally.

> He just doesn't.

>

> If your child has mito, the " let them go without food, and when they get

> hungry enough, they will eat " strategy is really quite dangerous for her.

> Patients with mito do not do well if they fast for long periods of time. In

> fact, that is what triggers seizures for --long periods of fasting,

> usually accompanied by illness. His body has trouble producing enough energy

> for normal, day-to-day life. When you add the stress of an illness, and then

> do not provide enough fuel, he suffers quickly!

>

> Here are some information links that may help you:

>

> <A HREF= " http://biochemgen.ucsd.edu/mmdc/ep-toc.htm " >Physician's Guide to

> Mito</A>

> <A HREF= " http://www.mdausa.org/publications/Quest/q64mito.html " >MDA / Quest

> 6-4 / Mitochondrial Myopathy -- An Energy Crisis in the Cells</A>

> <A HREF= " http://www.umdf.org/Index.htm#NoFramesNavigation " >The United

> Mitochondrial Disease Foundation</A>

> <A HREF= " http://www.imdn.org/ " >International Mitochondrial Disease Network</A

> >

>

> The first on the list will take some time to download, but I highly recommend

> it. I took copies to our doctors . . . it is what finally convinced our

> pediatrician to refer for testing.

>

> Good luck and feel free to ask more questions!!!

>

> Kathy C.

> mom to and (mitochondrial encephalomyopathy, complex I and III

> defects)

>

> ------------------------------------------------------------------------

> GET A NEXTCARD VISA, in 30 seconds! Get rates

> as low as 0.0% Intro APR and no hidden fees.

> Apply NOW!

> http://click./1/975/1/_/368657/_/952118120/

> ------------------------------------------------------------------------

>

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

March 3, 2000

First and foremost: WELCOME! you are in the right place for sympathetic

ears and understanding hearts...also we seem to have a durn good collective

brain among all of us It sounds like your doctor is probably on to

something, with the elevated lactate levels. Surprisingly enough, even if

just one part of the energy metabolism cycle is off, it can certainly be

enough to cause the types of delays you are describing with your sweet

. A couple of other thoughts:

Cyclical vomiting is a very common symptom of mitochondrial issues (and by

cyclical i mean she will vomit repeatedly with no other symtpoms of being ill

for several days/weeks and then suddenly be fine for while....comes and

goes). I know there are lots of parents on this list whose kids go through

that. My daughter has cyclical constipation (same idea, other end of the

bowel).

Does your nutritionist know much about metabolic disorders? Because the

BIGGGGGGGGGG factor with most (probably close to ALL) of our kids is a very

decreased sensation of hunger. Many kids don't eat much at all, (lots use

g-tube, nj tube, or other means to supplement oral intake) and rarely

experience or even recognize the feeling of being hungry. So i guess my

point here is that IF does indeed have mito issues , then most

likely (not a doctor here, just offering my experience) she will not just

start to eat when she gets hungry enough. (anyone else feel free to chime in

here, and share differing experiences.....)

Anyway, i'm glad you posted and hope you will let us know how the biopsy

/additional bloodwork come out. You are in good company...believe me, we

understand!

ruth

mom to Mitch (almost 5) and Lexi (almost 2, suspected mitochondrial disorder,

complex II and III)

March 3, 2000

Thanks Terri. I've read a lot about Leigh's disease and I think that is probably

what Elixabeth has.

Luckily she has an MRI scheduled for Wednesday. Maybe that will show something..

Thank you so much for your support.

Terri Mason wrote:

>

> ,

>

> Yes, he was diagnosed by muscle biopsy. At the time none of his lab tests

> were coming back abnormal and all of his MRIs had been normal. We used to

> say he was the most normal abnormal kid around! When he had the biopsy

> he was 5.5 years old and it showed that he had complex I and IV

> deficiencies. His muscle pathology was also very abnormal. If you'd like

> to read more about him I have a website at http://www.flash.net/~tmason

> which documents a lot of stuff - including medical records and the

> evaluation from when he had the biopsy done by Dr. Shoffner. When we did

> see Shoffner he also did another MRI which was no longer normal and showed

> that he had Leigh's (a specific type of mito disorder) - which I guess is

> also unusual in that the MRI usually shows Leigh's when they become

> symptomatic. It just goes to show you that there are no absolutes when it

> comes to mito disorders.

>

> Terri

>

> >

> >Reply-To: Mitoonelist

> >To: Mitoonelist

> >Subject: Re: I think my daughter has a mito disorder

> >Date: Fri, 03 Mar 2000 12:37:31 -0800

> >

> >So how was your son diagnosed? By a muscle biopsy? I can't tell you how

> >thrilled I am that you wrote me.

> >This has been very difficult for me. Everything about screams

> >Mito! If it is not we need to rule

> >it out with a biopsy.

> >Thank you so much for your reply

> >

> >Terri Mason wrote:

> >

> > >

> > > I hope you find the list helpful! It sounds like you need to get a new

> > > doctor The fact is that MOST mitochondrial disorders are not

> >maternally

> > > inherited but rather sporadic or autosomal recessive - in which case

> >there

> > > would be little or no family history. Additionally, elevated lactic

> >acid is

> > > most definitely not always present. My son didn't have elevated lactic

> >acid

> > > levels until recently and he is now 7 years old - so thankfully his docs

> > > didn't wait until the lactic acid levels were elevated!

> > >

> > > Terri

> > >

> > > >From: bunnyr@...

> > > >Reply-To: Mitoonelist

> > > >To: Mitoonelist

> > > >Subject: I think my daughter has a mito disorder

> > > >Date: Fri, 03 Mar 2000 20:07:00 -0000

> > > >

> > > >My daughter, elizabeth is 16 months old. She has low muscle tone, is

> > > >currently on an NG tube because for some unknown reason she will not

> > > >take anything orally. her lactate levels were only slightly elevated

> > > >and she is having siezures. She stares off a lot of times during the

> > > >day. She can not walk yet. She has little braces on her feet to help

> > > >with the muscle tone thing. She is scheduled to have an MRI done. The

> > > >only thing that worries me is that the neurologist says that he only

> > > >wants to do a muscle biopsy if the lactate levels are elevated and he

> > > >says that since there is no history of anything on my side of the

> > > >family he doesn't think it is a real possiblity. I think I may push

> > > >for a biopsy anyway. also has significant developemental

> > > >delays. she can not talk and she doesn't understand language although

> > > >she can hear. she doesn't even know her name.

> > > >What's worse is I am dealing with a nutritionist who seems to think

> > > >that once gets hungry enough she will all of a sudden start

> > > >eating. Even though she was starving herslef before shich is why she

> > > >had to be put on the NG tube in the first place.

> > > >also, for some reason was vomiting several times a day for

> > > >no reason with 160cc bolus feedings on the tube. the only thing that

> > > >has stopped her from doing it is that we put her on a continuous

> > > >drip. Also she has seizures through out the day and little jerks and

> > > > " shivers. " Her first EEG was normal and then her second one was just

> > > >done yesterday. If the shivers and jerks are not seizures I don't

> > > >know what they are. Except that they are with the staring off. There

> > > >is a lot going on with this little girl and would be more than happy

> > > >to talk to anyone going through the same thing.

> > > >

> > >

> > > ______________________________________________________

> > > Get Your Private, Free Email at http://www.hotmail.com

> > >

> > > ------------------------------------------------------------------------

> > > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> > > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> > > http://click./1/936/1/_/368657/_/952115543/

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> > >

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by mitochondrial disease.

March 3, 2000

In a message dated 03/03/2000 1:44:40 PM Pacific Standard Time,

bunnyr@... writes:

> Also is the vomitting normal for mito?

Absolutely! My son vomitted until he got his fundo. He had horrible formula

intolerance. He even had trouble with elemental formulas. I pressed for

neocate at one point, but I was told he didn't need to move beyond Alimentum

.. . . Neocate was for babies with metabolic disorders. Well, lo and behold,

my son DOES have a metabolic disorder. We just didn't have a diagnosis until

he was nearly three!

I don't know about the yellow nail . . . sounds like a fungal infection or

something maybe. I do know that 's hair and nails are not as healthy as

I would like . . . I believe due to the nutritional deficits.

I saw your questions for Terri . . . was also diagnosed by muscle biopsy

(fresh!) by the same doctor as Terri's son. Shoffner in Atlanta at ish

Rite, now Children's Healthcare of Atlanta. I think their web site is

www.choa.com (maybe .org). You can search the site for Molecular Genetics

or for Shoffner's name and you will find contact information on how to set up

a visit . . . .

Keep asking questions!

Kathy C.

mom to and

March 4, 2000