Re: Need opionions, mito or not?

[Guest guest]

Amy, you are so right. We have no idea why God allows (or I should say

provides for us) many of the trials we go through. But somehow in the whole

scheme of things there ARE reasons and of course, if God is in control

(which I believe He is) then they are excellant ones. We on this earth are

so limited in our views and our understanding of eternal concepts. We know

so little about for instance the depth and breadth of time and space. So

don't despair. has locked in her little heart a message for others as

you have seen. S.

Re: Need opionions, mito or not?

>

>

>Everyone who responded to my post. I have received a lot of advice and

have

>enjoyed hearing other folks stories. To S. who wrote: " may

just

>surprise everyone! If she has held on thru all she has already survived

thru

>she has a very strong little spirit and it sounds like she intends to fight

>like hell. " Thanks for reminding me that. She is a fighter. Although I

>get anxious about the unknown future, it is comforting to know that we are

>not alone. I just have to share one more thing. Even though can't

>see or coo, has microcepaly, and is developmentally delayed (can't roll

over

>or sit up) everyday her little spirit touches someone's life. Like the

>disabled, elderly lady in the grocery store who volunteered to watch

>so I could retrieve the car from the paking lot in the pouring down rain,

(I

>could see her the whole time-through a large glass widow, she never left my

>sight). As I thanked her, I felt in my heart that the lady felt very

honored

>to be able to help someone that day, as she waited for her special transit

>bus. And I am always surprised that even though has so many

problems,

>other women look at her big round face, blue eyes and blond hair and tell

me

>they want to have a baby. " She is so cute, I want to have a baby... " (they

>don't even seem to feel threatened that something unexpected or bad could

>happen). The fact that is so beautiful and smiles always seems to

pull

>us through and move us forward. Thanks again, Amy

>

>

>

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

>

[Guest guest]

Amy, you are so right. We have no idea why God allows (or I should say

provides for us) many of the trials we go through. But somehow in the whole

scheme of things there ARE reasons and of course, if God is in control

(which I believe He is) then they are excellant ones. We on this earth are

so limited in our views and our understanding of eternal concepts. We know

so little about for instance the depth and breadth of time and space. So

don't despair. has locked in her little heart a message for others as

you have seen. S.

Re: Need opionions, mito or not?

>

>

>Everyone who responded to my post. I have received a lot of advice and

have

>enjoyed hearing other folks stories. To S. who wrote: " may

just

>surprise everyone! If she has held on thru all she has already survived

thru

>she has a very strong little spirit and it sounds like she intends to fight

>like hell. " Thanks for reminding me that. She is a fighter. Although I

>get anxious about the unknown future, it is comforting to know that we are

>not alone. I just have to share one more thing. Even though can't

>see or coo, has microcepaly, and is developmentally delayed (can't roll

over

>or sit up) everyday her little spirit touches someone's life. Like the

>disabled, elderly lady in the grocery store who volunteered to watch

>so I could retrieve the car from the paking lot in the pouring down rain,

(I

>could see her the whole time-through a large glass widow, she never left my

>sight). As I thanked her, I felt in my heart that the lady felt very

honored

>to be able to help someone that day, as she waited for her special transit

>bus. And I am always surprised that even though has so many

problems,

>other women look at her big round face, blue eyes and blond hair and tell

me

>they want to have a baby. " She is so cute, I want to have a baby... " (they

>don't even seem to feel threatened that something unexpected or bad could

>happen). The fact that is so beautiful and smiles always seems to

pull

>us through and move us forward. Thanks again, Amy

>

>

>

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

>

[Guest guest]

Amy-

I am a special education teacher. I had a 3 year old student last year with a

diagnosis of

encephlomalacia. He has a large head. He was beginning to say some words and was

walking. He is still

very delayed, but a happy little guy. He has trouble sleeping. I know this

doesn't sound exactly like

your daughter, but his mom has gone on to have a healthy normal second son.

Laurie

> In October of 1997, during my 7th month of pregnancy, I didn't feel my baby

> move. I never felt her move and I still have a hard time holding back the

> tears, when I hear expecting moms giggle and complain about the kicks and

> movements of their unborn babies. Anyway, a level II ultra-sound revealed

> low amniotic fluid and cystic legions in the baby's brain. I never drank,

> smoked or did drugs, and I took my vitamins. We were sent to a high risk

> pregnancy MD - he does more tests on my blood: antibodies for CMV,

> Toxoplasma and Parvovirus. He gets a sample of the baby's blood (it's

> called a PUBS - it is like an amnio - but they take baby's cord blood) and

> they test the chromosomes, the platelets, and white & red blood cells.

> Everything comes back normal. The baby's size, limbs, organs, etc. are all

> normal. So they send me for an MRI. The results of the MRI show that the

> baby had abnormal brain development: enlarged ventricles and the brain

> tissue was damaged: encephalomalacia.

[Guest guest]

Amy, my 3rd baby rarely moved in utero and I honestly thought she would be

born without limbs, I also was diabetic with her. I don't know what happened

at her birth but the nurse screamed and they hooked her up to all the

monitors and stuff and I didn't get her for 48 hrs. I was young and ignorant

and so was my husband so we didn't know how to deal with it all. They would

never tell us anything altho I think they overdosed me on the Demerol during

the last stage of labor and it got to her, but I know something was wrong

all along anyway because like I said she rarely moved inside.

She cried continually for 2 yrs until I had a nervous breakdown and was

hospitalized, no one else would watch her or help me and I had 2 older and

by then 1 younger child who all acted fairly normal. The Dr.s I drug her too

kept telling me she looks fine, would never test for anything altho they

thought no reflexes was indicative of some sort of neurological problem, and

finally started giving ME Valium!

She had all sorts of physical problems from vomiting to bowel disturbances,

headaches to speech degression, etc.

When she was 7 a chiropractor was the first decent help I got straightening

her neck out which he said had been out of alignment since birth. It helped

her tremendously.

She is now 26, married, has 2 children, still has numerous hormonal and

thinking, etc. problems but you wouldn't know all the problems if you

casually knew her.

I know it is amazing how people defy all the medical odds and progress in

ways the Dr.s would never have believed so hold on to all hope. may

just surprise everyone! If she has held on thru all she has already survived

thru she has a very strong little spirit and it sounds like she intends to

fight like hell. S.

Need opionions, mito or not?

>

>

>Hi, my name is Amy, not Superman. My husband is Superman! He an identical

>twin and as kids he dressed as Superman and his brother Batman. So that is

>why our e-mail account is set up as Krypton (Superman's home planet). My

>husband is a big fan and we tooled with the idea of naming our 15 mo.

>daughter Kal-el (Superman's Kryptonian name). Anyway,

>

>I am new to the group, I have traveled a long roller-costar journey (17

>months) and I am feeling scared because my first and only child is still

>undiagnosed. If anyone has the time to read my story and give me advice, I

>would greatly appreciated it. I can barely function, I am filled with so

>much fear that all my eggs have defective mDNA. (I have read the 3 part

>article from Exceptional Parent's Magazine).

>

>In October of 1997, during my 7th month of pregnancy, I didn't feel my baby

>move. I never felt her move and I still have a hard time holding back the

>tears, when I hear expecting moms giggle and complain about the kicks and

>movements of their unborn babies. Anyway, a level II ultra-sound revealed

>low amniotic fluid and cystic legions in the baby's brain. I never drank,

>smoked or did drugs, and I took my vitamins. We were sent to a high risk

>pregnancy MD - he does more tests on my blood: antibodies for CMV,

>Toxoplasma and Parvovirus. He gets a sample of the baby's blood (it's

>called a PUBS - it is like an amnio - but they take baby's cord blood) and

>they test the chromosomes, the platelets, and white & red blood cells.

>Everything comes back normal. The baby's size, limbs, organs, etc. are all

>normal. So they send me for an MRI. The results of the MRI show that the

>baby had abnormal brain development: enlarged ventricles and the brain

>tissue was damaged: encephalomalacia. They tell us the baby won't live.

>Since there was no surgery or anything that they could do to help her, they

>suggested we deliver at or local community hospital, so friends and family

>could support us. The genetic test confirms a female, so on advice we

bought

>a pink outfit to dress our dead or near dead baby in and film to take

>pictures of her. On Thanksgiving day, I get called to come to the

hospital,

>my blood pressure was too high, they want to induce me . So I lay around

>for hours watching the TV media coverage on the miracle septuplets, trying

>to pretend the ginger ale and jell-o is turkey and mashed potatoes, while

>they attempt to induce me. Finally, at 9:30 p.m., Black Friday (how

>appropriate) Rae was born PINK, breathing on her own and she had a

>good suck, her apgar was 9 & 9. Two days later, we went home expecting her

>to die. " babies without brains live 4-5 months " .

>Since then the following happened:

>Age: 2-4 months:

>2nd MRI: confirms the brain damage: enlarged lateral & 3rd ventricles and

>brain tissue damage: peri-ventricular bilateral cystic leukomalacia

>Hip dysplasia (7 mos of hell: she went from a harness to 3 body casts, to a

>brace..but it worked!)

>GI reflux and gastric delay in emptying the contents of her stomach, which

>causes her to gag and choke on refluxed mucus, we get an apnea monitor and

>start Propulsid & Zantac.

>Age: 7 months:

>Bi-lateral vesicoureteral reflux - grade II (reflux from bladder to kidney)

>Start low daily dose of Amoxicillian.

>develops sleep apnea (could be from GI reflux)

>CVI - Cortical Vision Impairment

>Age: 9 months

>See genetics: Is something wrong? She shows no signs of a " syndrome " , but

>because of her history the do some blood work.

>Age 10-15 months (present)

>Because Lactate/Pyruvate L & P levels are elevated & organic acids are

>abnormal we get sent to the metabolic department at Children's

>Hospital/Phila.

>Re-do L & P 3 times, still elevated.

>Re-did urine tests: normal (must have been the pre-digestive formula)

>PDH & Biotinidase: normal

>MRI & MRS: No abnormal levels of lactose in the brain and there appears to

>be no increased brain damage, they note the corpus callosum is dysgenic

>(which I believe means defective development)

>They did an skin biopsy and after four months of waiting and 1 month of my

>calling for results, they inform me the skin didn't grow - nice of them to

>call and let me know.

>Developmental MD says she is at the 2-5 month level

>EEG shows seizure activity start Tegretol

>Her head stops growing at 42 cm and is now microcephalic

>We are scheduled to have a skin and muscle biopsy in April. Does this

sound

>like a mito disorder to anyone? Has anyone else have experience with the

>metabolic MDs in Phila.? I know that Dr. G. Berry is on the UMDF but I

>don't know for certain if he has looked at 's case. I was so angry

>that the first skin bio didn't grow and they never called to let me know.

>Has any other moms had pregnancies where they didn't feel the baby move?

As

>bad as it seems I hope that her brain damage was casues by a viral

infection

>or some other trama that cause a lack of O2 to her growing little body...I

>am just really anxious. I want to try to have a second " healthy " baby, but

>I can't until I know for certain what the chances are and I'm begining to

>feel that they may never be able to tell me. Does this happen? If you made

>it this far in reading my frustrations, Thank you. Amy

>

>

>

>

>

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

>Come check out our brand new web site!

>http://www.onelist.com

>Onelist: Making the Internet intimate

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

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

affected by mitochondrial disease.

>

[Guest guest]

Hello Amy. My name is Connie and my 2.5 yr old son, , is highly

suspected of

having a mito disorder.

>Has anyone else have experience with the

>metabolic MDs in Phila.? I know that Dr. G. Berry is on the UMDF but I

>don't know for certain if he has looked at 's case. I was so angry

>that the first skin bio didn't grow and they never called to let me know.

I live just outside Phila and my son was first suspected of having a mito

disorder when he was 10 mos. He had preliminary urine and blood work which

was abnormal so we saw Dr. Paige Kaplan at CHOP in 11/97 when he was 15 mos.

Our experience with her was not good. She explained away his elevated

lactic acid due to the fact he was crying when the blood was drawn (what

child doesn't cry?). She repeated the blood and urine tests at CHOP and,

based on her physical evaluation, was sure he did not have a metabolic

disease. I had to leave about 4 messages and wait well over a week for her

to finally call back with the results of the latest lab work. She said the

urine organic acids had some abnormalities but this must be due to an

infection in his intestine (as it turns out there were many abnormalities

and they were extremely high). She again said he did not have a metabolic

problem. I was overjoyed. I had the 3 part series from Exceptional Parent

on mito disorders and was so relieved he didn't have it. was

diagnosed in March '98 with cerebral palsy which came as no surprise. I was

actually relieved he " only " had CP and not that terrible mito disease. At

least CP can't get any worse. The rest is a very long story but I'll try to

make it short - he became very ill and was hospitalized and we discovered

his liver problem. Back to metabolism at CHOP. Total, major runaround.

Dr. Kaplan was supposed to be organizing the next level of tests (liver and

muscle biopsies, brain MRI) but she completely dropped the ball. I left so

many messages and when she finally did call back she said she wanted to

consult with other docs and would call me the following week. When I hung

up the phone I looked at my husband and said " I'll bet you a million dollars

we don't hear from her next week, or the week after that " . I didn't hear

from her again until 2 months later. In the meantime our other docs got fed

up and forwarded 's lab results to Dr. Kelley at

Kennedy-Krieger in Baltimore. He took one look and said of course this

child has a mitochondrial disorder. Dr. Kelley has been our godsend. Our

experience with him has been the polar opposite of our experience with Dr.

Kaplan. He always calls back the day I leave a message. He's kind, caring,

never rushes us and incredibly knowledgeable. He also sees patients at the

Clinic for Special Children in Strasburg, PA - it's actually on an Amish

farm.

You mentioned Dr. Berry. We did meet him briefly and he seems like a very

nice man. I do wonder if our experience would have been different if we had

seen him instead of Dr. Kaplan.

>Has any other moms had pregnancies where they didn't feel the baby move?

Yes! rarely moved, especially during the last trimester. I had twice

weekly non stress tests and was always relieved, almost surprised, to hear

his heartbeat as I was always so worried by his lack of activity. You

mentioned you had high blood pressure. I had undiagnosed preeclampsia which

developed into HELLP syndrome. I've been told there is a connection between

preeclampsia and carrying kids with mito. Has anyone else experienced this?

If I can be of any help, please let me know. Please take care.

Connie

[Guest guest]

Connie, my daughter in law also had high blood pressure and one of my

daughters kept spiking up with their pregnancy's. My whole family is riddled

with suspected mito. We've had a lot of babies with the cords around their

necks and one that had a BM in utero and had to be taken C section for that

reason. Our babies have a hard time warming up after birth also.

Is gestational diabetes also common with mito I wonder?

Does anyone else have problems with spontaneous bruising or canker sores and

tongue ulcers?

Does anyone else do B12 shots? I don't have pernicious anemia but the B12

shots heal the spontaneous bruising, canker sores/tongue ulcers, clear my

mind, help with depression, & raise my energy level. S.

Re: Need opionions, mito or not?

>

>

>Hello Amy. My name is Connie and my 2.5 yr old son, , is highly

>suspected of

>having a mito disorder.

>

>>Has anyone else have experience with the

>>metabolic MDs in Phila.? I know that Dr. G. Berry is on the UMDF but I

>>don't know for certain if he has looked at 's case. I was so angry

>>that the first skin bio didn't grow and they never called to let me know.

>

>I live just outside Phila and my son was first suspected of having a mito

>disorder when he was 10 mos. He had preliminary urine and blood work which

>was abnormal so we saw Dr. Paige Kaplan at CHOP in 11/97 when he was 15

mos.

>Our experience with her was not good. She explained away his elevated

>lactic acid due to the fact he was crying when the blood was drawn (what

>child doesn't cry?). She repeated the blood and urine tests at CHOP and,

>based on her physical evaluation, was sure he did not have a metabolic

>disease. I had to leave about 4 messages and wait well over a week for her

>to finally call back with the results of the latest lab work. She said

the

>urine organic acids had some abnormalities but this must be due to an

>infection in his intestine (as it turns out there were many abnormalities

>and they were extremely high). She again said he did not have a metabolic

>problem. I was overjoyed. I had the 3 part series from Exceptional Parent

>on mito disorders and was so relieved he didn't have it. was

>diagnosed in March '98 with cerebral palsy which came as no surprise. I

was

>actually relieved he " only " had CP and not that terrible mito disease. At

>least CP can't get any worse. The rest is a very long story but I'll try

to

>make it short - he became very ill and was hospitalized and we discovered

>his liver problem. Back to metabolism at CHOP. Total, major runaround.

>Dr. Kaplan was supposed to be organizing the next level of tests (liver and

>muscle biopsies, brain MRI) but she completely dropped the ball. I left so

>many messages and when she finally did call back she said she wanted to

>consult with other docs and would call me the following week. When I hung

>up the phone I looked at my husband and said " I'll bet you a million

dollars

>we don't hear from her next week, or the week after that " . I didn't hear

>from her again until 2 months later. In the meantime our other docs got

fed

>up and forwarded 's lab results to Dr. Kelley at

>Kennedy-Krieger in Baltimore. He took one look and said of course this

>child has a mitochondrial disorder. Dr. Kelley has been our godsend. Our

>experience with him has been the polar opposite of our experience with Dr.

>Kaplan. He always calls back the day I leave a message. He's kind,

caring,

>never rushes us and incredibly knowledgeable. He also sees patients at the

>Clinic for Special Children in Strasburg, PA - it's actually on an Amish

>farm.

>

>You mentioned Dr. Berry. We did meet him briefly and he seems like a very

>nice man. I do wonder if our experience would have been different if we

had

>seen him instead of Dr. Kaplan.

>

>>Has any other moms had pregnancies where they didn't feel the baby move?

>

>

>Yes! rarely moved, especially during the last trimester. I had

twice

>weekly non stress tests and was always relieved, almost surprised, to hear

>his heartbeat as I was always so worried by his lack of activity. You

>mentioned you had high blood pressure. I had undiagnosed preeclampsia

which

>developed into HELLP syndrome. I've been told there is a connection

between

>preeclampsia and carrying kids with mito. Has anyone else experienced

this?

>

>

>If I can be of any help, please let me know. Please take care.

>

>Connie

>

>

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

>Start a new hobby. Meet a new friend.

>http://www.onelist.com

>Onelist: The leading provider of free email list services

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

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

affected by mitochondrial disease.

>

[Guest guest]

Connie, my daughter in law also had high blood pressure and one of my

daughters kept spiking up with their pregnancy's. My whole family is riddled

with suspected mito. We've had a lot of babies with the cords around their

necks and one that had a BM in utero and had to be taken C section for that

reason. Our babies have a hard time warming up after birth also.

Is gestational diabetes also common with mito I wonder?

Does anyone else have problems with spontaneous bruising or canker sores and

tongue ulcers?

Does anyone else do B12 shots? I don't have pernicious anemia but the B12

shots heal the spontaneous bruising, canker sores/tongue ulcers, clear my

mind, help with depression, & raise my energy level. S.

Re: Need opionions, mito or not?

>

>

>Hello Amy. My name is Connie and my 2.5 yr old son, , is highly

>suspected of

>having a mito disorder.

>

>>Has anyone else have experience with the

>>metabolic MDs in Phila.? I know that Dr. G. Berry is on the UMDF but I

>>don't know for certain if he has looked at 's case. I was so angry

>>that the first skin bio didn't grow and they never called to let me know.

>

>I live just outside Phila and my son was first suspected of having a mito

>disorder when he was 10 mos. He had preliminary urine and blood work which

>was abnormal so we saw Dr. Paige Kaplan at CHOP in 11/97 when he was 15

mos.

>Our experience with her was not good. She explained away his elevated

>lactic acid due to the fact he was crying when the blood was drawn (what

>child doesn't cry?). She repeated the blood and urine tests at CHOP and,

>based on her physical evaluation, was sure he did not have a metabolic

>disease. I had to leave about 4 messages and wait well over a week for her

>to finally call back with the results of the latest lab work. She said

the

>urine organic acids had some abnormalities but this must be due to an

>infection in his intestine (as it turns out there were many abnormalities

>and they were extremely high). She again said he did not have a metabolic

>problem. I was overjoyed. I had the 3 part series from Exceptional Parent

>on mito disorders and was so relieved he didn't have it. was

>diagnosed in March '98 with cerebral palsy which came as no surprise. I

was

>actually relieved he " only " had CP and not that terrible mito disease. At

>least CP can't get any worse. The rest is a very long story but I'll try

to

>make it short - he became very ill and was hospitalized and we discovered

>his liver problem. Back to metabolism at CHOP. Total, major runaround.

>Dr. Kaplan was supposed to be organizing the next level of tests (liver and

>muscle biopsies, brain MRI) but she completely dropped the ball. I left so

>many messages and when she finally did call back she said she wanted to

>consult with other docs and would call me the following week. When I hung

>up the phone I looked at my husband and said " I'll bet you a million

dollars

>we don't hear from her next week, or the week after that " . I didn't hear

>from her again until 2 months later. In the meantime our other docs got

fed

>up and forwarded 's lab results to Dr. Kelley at

>Kennedy-Krieger in Baltimore. He took one look and said of course this

>child has a mitochondrial disorder. Dr. Kelley has been our godsend. Our

>experience with him has been the polar opposite of our experience with Dr.

>Kaplan. He always calls back the day I leave a message. He's kind,

caring,

>never rushes us and incredibly knowledgeable. He also sees patients at the

>Clinic for Special Children in Strasburg, PA - it's actually on an Amish

>farm.

>

>You mentioned Dr. Berry. We did meet him briefly and he seems like a very

>nice man. I do wonder if our experience would have been different if we

had

>seen him instead of Dr. Kaplan.

>

>>Has any other moms had pregnancies where they didn't feel the baby move?

>

>

>Yes! rarely moved, especially during the last trimester. I had

twice

>weekly non stress tests and was always relieved, almost surprised, to hear

>his heartbeat as I was always so worried by his lack of activity. You

>mentioned you had high blood pressure. I had undiagnosed preeclampsia

which

>developed into HELLP syndrome. I've been told there is a connection

between

>preeclampsia and carrying kids with mito. Has anyone else experienced

this?

>

>

>If I can be of any help, please let me know. Please take care.

>

>Connie

>

>

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

>Start a new hobby. Meet a new friend.

>http://www.onelist.com

>Onelist: The leading provider of free email list services

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

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

affected by mitochondrial disease.

>

[Guest guest]

Dear Amy:

Thank you for shareing your oh-so-famillure story. My experence was different

but my levil of exasperation and helplessness and confusion are just as yours

are.

In my experence with mito-disease since 1991 I can tell you that some people

know more about their particular mito disease than others. If your child has

a more " popular " form of mito disease the docs *might* be able to tell you

cause or life expectancy etc., but I think it a more common scenareo that they

won't be able to give a defined diagnosis. Because there are so many

different mito-disorders, and disorders that disrupt mito-function but are of

neucler origine coupled with the fact that the mito-science is so new (since

the 1950's), since it affects such a small pocket of the population, it looks

like a while before they develope a method of diagnostics that are cost-

affective and produce the answers.

Organizations such as the EMDN (Europien Mitochondrial Disease Network) the

UMDF (United Mitochondrial Disease Foundation,) and JUMP (Juvinal Unknown

Mitochondrial Problems) just to name a few, work dillagently to raise monies

and bring all the most brilliant minds in medicine togeather to further

research, but an easy resolution, for some of us that is, looks to be a ways

off.

To have more children is a highly personal decision. We had one child after

our daughter was born with a metabolic disorder ( " suspected " mitochondrial

emcephalomyopathy). He is mildly affected. We then adopted two more children

(we wanted six children but stopped at 4 when Amy's disease became hard to

deal with and our two adopted Fetal Alcohal Syndrome children proved a much

larger challenge when complicated by the birth children's symptoms. Am I

sorry we had more? NO WAY! But not every one feels this way.

I hope this is helpful to you.

By the way, welcome to the MitoList.

Lynnie

Wife, Mother, Advocate

[Guest guest]

Dear Amy:

Thank you for shareing your oh-so-famillure story. My experence was different

but my levil of exasperation and helplessness and confusion are just as yours

are.

In my experence with mito-disease since 1991 I can tell you that some people

know more about their particular mito disease than others. If your child has

a more " popular " form of mito disease the docs *might* be able to tell you

cause or life expectancy etc., but I think it a more common scenareo that they

won't be able to give a defined diagnosis. Because there are so many

different mito-disorders, and disorders that disrupt mito-function but are of

neucler origine coupled with the fact that the mito-science is so new (since

the 1950's), since it affects such a small pocket of the population, it looks

like a while before they develope a method of diagnostics that are cost-

affective and produce the answers.

Organizations such as the EMDN (Europien Mitochondrial Disease Network) the

UMDF (United Mitochondrial Disease Foundation,) and JUMP (Juvinal Unknown

Mitochondrial Problems) just to name a few, work dillagently to raise monies

and bring all the most brilliant minds in medicine togeather to further

research, but an easy resolution, for some of us that is, looks to be a ways

off.

To have more children is a highly personal decision. We had one child after

our daughter was born with a metabolic disorder ( " suspected " mitochondrial

emcephalomyopathy). He is mildly affected. We then adopted two more children

(we wanted six children but stopped at 4 when Amy's disease became hard to

deal with and our two adopted Fetal Alcohal Syndrome children proved a much

larger challenge when complicated by the birth children's symptoms. Am I

sorry we had more? NO WAY! But not every one feels this way.

I hope this is helpful to you.

By the way, welcome to the MitoList.

Lynnie

Wife, Mother, Advocate

[Guest guest]

In a message dated 3/24/1999 2:46:03 PM Eastern Standard Time,

jlowney@... writes:

> Has any other moms had pregnancies where they didn't feel the baby move?

>

Almost -- my mother said I rarely moved, and never kicked. When my brother

came along, she was shocked...never knew babies could pack such punches.

the Elder (MTM* and OXPHOS)

*MTM - abbreviation for Myotubular (or Centronuclear) Myopathy -- and a lot

easier to type)

[Guest guest]

In a message dated 3/24/1999 2:46:03 PM Eastern Standard Time,

jlowney@... writes:

> Has any other moms had pregnancies where they didn't feel the baby move?

>

Almost -- my mother said I rarely moved, and never kicked. When my brother

came along, she was shocked...never knew babies could pack such punches.

the Elder (MTM* and OXPHOS)

*MTM - abbreviation for Myotubular (or Centronuclear) Myopathy -- and a lot

easier to type)

[Guest guest]

Connie, I too experienced problems with getting info back from Dr. Caplan

at CHOP. I live in burg and grew up near Cherry Hill/Camden in NJ.

My son is very close to 9 years old and is diagnosed with autism. Can't

get the insurances to appprove testing for mito disorder. But treating him

anyway. Really impressive results since Xmas. Anyway we went there the day

before Thanksgiving. I was told I was a great Mommy, but Bart did not have

a metabolic disorder. Lots of luck so on and so on. He had lactate acid

and organic acid levels checked at CHOP(because they only trust their on

lab to do the test, but could not fing me people to help hold him down for

the bloodwork)

OK, so I assumed that all was peachiy fine with the tests results, even

tho' I never got the promised phone call. Gosh, the next Sept I called an

ambulance and my developmental ped/geneticist said she was unwilling to

give up on this theory even if she had to send me back to CHOP. After all

they are the supposed experts in this state. She, I could not believe

never got the lab results from CHOP. Paige Caplen actually called

me( the secretary helped) and told me the other Dr. was respomsible

for telling me. WE losed over a year because we did not have those

results. Finally she said to look into mito disorder in her report. My

son's Doc was so mad at them!!!!As we all are at insurance too. I really

don't know where to go. Ken told me that ( I hope I remember this right)

that St. 's in the Northeast has specialist for mito. If Ken is

still out there maybe he can help refresh my memory. They just got bought

out by somebody. Kathy

----------

>

> To: Mitoonelist

> Subject: Re: Need opionions, mito or not?

> Date: Wednesday, March 24, 1999 2:42 PM

>

>

>

> Hello Amy. My name is Connie and my 2.5 yr old son, , is highly

> suspected of

> having a mito disorder.

>

> >Has anyone else have experience with the

> >metabolic MDs in Phila.? I know that Dr. G. Berry is on the UMDF but I

> >don't know for certain if he has looked at 's case. I was so angry

> >that the first skin bio didn't grow and they never called to let me

know.

>

> I live just outside Phila and my son was first suspected of having a mito

> disorder when he was 10 mos. He had preliminary urine and blood work

which

> was abnormal so we saw Dr. Paige Kaplan at CHOP in 11/97 when he was 15

mos.

> Our experience with her was not good. She explained away his elevated

> lactic acid due to the fact he was crying when the blood was drawn (what

> child doesn't cry?). She repeated the blood and urine tests at CHOP and,

> based on her physical evaluation, was sure he did not have a metabolic

> disease. I had to leave about 4 messages and wait well over a week for

her

> to finally call back with the results of the latest lab work. She said

the

> urine organic acids had some abnormalities but this must be due to an

> infection in his intestine (as it turns out there were many abnormalities

> and they were extremely high). She again said he did not have a

metabolic

> problem. I was overjoyed. I had the 3 part series from Exceptional

Parent

> on mito disorders and was so relieved he didn't have it. was

> diagnosed in March '98 with cerebral palsy which came as no surprise. I

was

> actually relieved he " only " had CP and not that terrible mito disease.

At

> least CP can't get any worse. The rest is a very long story but I'll try

to

> make it short - he became very ill and was hospitalized and we discovered

> his liver problem. Back to metabolism at CHOP. Total, major runaround.

> Dr. Kaplan was supposed to be organizing the next level of tests (liver

and

> muscle biopsies, brain MRI) but she completely dropped the ball. I left

so

> many messages and when she finally did call back she said she wanted to

> consult with other docs and would call me the following week. When I

hung

> up the phone I looked at my husband and said " I'll bet you a million

dollars

> we don't hear from her next week, or the week after that " . I didn't hear

> from her again until 2 months later. In the meantime our other docs got

fed

> up and forwarded 's lab results to Dr. Kelley at

> Kennedy-Krieger in Baltimore. He took one look and said of course this

> child has a mitochondrial disorder. Dr. Kelley has been our godsend.

Our

> experience with him has been the polar opposite of our experience with

Dr.

> Kaplan. He always calls back the day I leave a message. He's kind,

caring,

> never rushes us and incredibly knowledgeable. He also sees patients at

the

> Clinic for Special Children in Strasburg, PA - it's actually on an Amish

> farm.

>

> You mentioned Dr. Berry. We did meet him briefly and he seems like a

very

> nice man. I do wonder if our experience would have been different if we

had

> seen him instead of Dr. Kaplan.

>

> >Has any other moms had pregnancies where they didn't feel the baby move?

>

>

> Yes! rarely moved, especially during the last trimester. I had

twice

> weekly non stress tests and was always relieved, almost surprised, to

hear

> his heartbeat as I was always so worried by his lack of activity. You

> mentioned you had high blood pressure. I had undiagnosed preeclampsia

which

> developed into HELLP syndrome. I've been told there is a connection

between

> preeclampsia and carrying kids with mito. Has anyone else experienced

this?

>

>

> If I can be of any help, please let me know. Please take care.

>

> Connie

>

>

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

> Start a new hobby. Meet a new friend.

> http://www.onelist.com

> Onelist: The leading provider of free email list services

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

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

affected by mitochondrial disease.

[Guest guest]

Connie, I too experienced problems with getting info back from Dr. Caplan

at CHOP. I live in burg and grew up near Cherry Hill/Camden in NJ.

My son is very close to 9 years old and is diagnosed with autism. Can't

get the insurances to appprove testing for mito disorder. But treating him

anyway. Really impressive results since Xmas. Anyway we went there the day

before Thanksgiving. I was told I was a great Mommy, but Bart did not have

a metabolic disorder. Lots of luck so on and so on. He had lactate acid

and organic acid levels checked at CHOP(because they only trust their on

lab to do the test, but could not fing me people to help hold him down for

the bloodwork)

OK, so I assumed that all was peachiy fine with the tests results, even

tho' I never got the promised phone call. Gosh, the next Sept I called an

ambulance and my developmental ped/geneticist said she was unwilling to

give up on this theory even if she had to send me back to CHOP. After all

they are the supposed experts in this state. She, I could not believe

never got the lab results from CHOP. Paige Caplen actually called

me( the secretary helped) and told me the other Dr. was respomsible

for telling me. WE losed over a year because we did not have those

results. Finally she said to look into mito disorder in her report. My

son's Doc was so mad at them!!!!As we all are at insurance too. I really

don't know where to go. Ken told me that ( I hope I remember this right)

that St. 's in the Northeast has specialist for mito. If Ken is

still out there maybe he can help refresh my memory. They just got bought

out by somebody. Kathy

----------

>

> To: Mitoonelist

> Subject: Re: Need opionions, mito or not?

> Date: Wednesday, March 24, 1999 2:42 PM

>

>

>

> Hello Amy. My name is Connie and my 2.5 yr old son, , is highly

> suspected of

> having a mito disorder.

>

> >Has anyone else have experience with the

> >metabolic MDs in Phila.? I know that Dr. G. Berry is on the UMDF but I

> >don't know for certain if he has looked at 's case. I was so angry

> >that the first skin bio didn't grow and they never called to let me

know.

>

> I live just outside Phila and my son was first suspected of having a mito

> disorder when he was 10 mos. He had preliminary urine and blood work

which

> was abnormal so we saw Dr. Paige Kaplan at CHOP in 11/97 when he was 15

mos.

> Our experience with her was not good. She explained away his elevated

> lactic acid due to the fact he was crying when the blood was drawn (what

> child doesn't cry?). She repeated the blood and urine tests at CHOP and,

> based on her physical evaluation, was sure he did not have a metabolic

> disease. I had to leave about 4 messages and wait well over a week for

her

> to finally call back with the results of the latest lab work. She said

the

> urine organic acids had some abnormalities but this must be due to an

> infection in his intestine (as it turns out there were many abnormalities

> and they were extremely high). She again said he did not have a

metabolic

> problem. I was overjoyed. I had the 3 part series from Exceptional

Parent

> on mito disorders and was so relieved he didn't have it. was

> diagnosed in March '98 with cerebral palsy which came as no surprise. I

was

> actually relieved he " only " had CP and not that terrible mito disease.

At

> least CP can't get any worse. The rest is a very long story but I'll try

to

> make it short - he became very ill and was hospitalized and we discovered

> his liver problem. Back to metabolism at CHOP. Total, major runaround.

> Dr. Kaplan was supposed to be organizing the next level of tests (liver

and

> muscle biopsies, brain MRI) but she completely dropped the ball. I left

so

> many messages and when she finally did call back she said she wanted to

> consult with other docs and would call me the following week. When I

hung

> up the phone I looked at my husband and said " I'll bet you a million

dollars

> we don't hear from her next week, or the week after that " . I didn't hear

> from her again until 2 months later. In the meantime our other docs got

fed

> up and forwarded 's lab results to Dr. Kelley at

> Kennedy-Krieger in Baltimore. He took one look and said of course this

> child has a mitochondrial disorder. Dr. Kelley has been our godsend.

Our

> experience with him has been the polar opposite of our experience with

Dr.

> Kaplan. He always calls back the day I leave a message. He's kind,

caring,

> never rushes us and incredibly knowledgeable. He also sees patients at

the

> Clinic for Special Children in Strasburg, PA - it's actually on an Amish

> farm.

>

> You mentioned Dr. Berry. We did meet him briefly and he seems like a

very

> nice man. I do wonder if our experience would have been different if we

had

> seen him instead of Dr. Kaplan.

>

> >Has any other moms had pregnancies where they didn't feel the baby move?

>

>

> Yes! rarely moved, especially during the last trimester. I had

twice

> weekly non stress tests and was always relieved, almost surprised, to

hear

> his heartbeat as I was always so worried by his lack of activity. You

> mentioned you had high blood pressure. I had undiagnosed preeclampsia

which

> developed into HELLP syndrome. I've been told there is a connection

between

> preeclampsia and carrying kids with mito. Has anyone else experienced

this?

>

>

> If I can be of any help, please let me know. Please take care.

>

> Connie

>

>

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

> Start a new hobby. Meet a new friend.

> http://www.onelist.com

> Onelist: The leading provider of free email list services

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

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

affected by mitochondrial disease.

[Guest guest]

Everyone who responded to my post. I have received a lot of advice and have

enjoyed hearing other folks stories. To S. who wrote: " may just

surprise everyone! If she has held on thru all she has already survived thru

she has a very strong little spirit and it sounds like she intends to fight

like hell. " Thanks for reminding me that. She is a fighter. Although I

get anxious about the unknown future, it is comforting to know that we are

not alone. I just have to share one more thing. Even though can't

see or coo, has microcepaly, and is developmentally delayed (can't roll over

or sit up) everyday her little spirit touches someone's life. Like the

disabled, elderly lady in the grocery store who volunteered to watch

so I could retrieve the car from the paking lot in the pouring down rain, (I

could see her the whole time-through a large glass widow, she never left my

sight). As I thanked her, I felt in my heart that the lady felt very honored

to be able to help someone that day, as she waited for her special transit

bus. And I am always surprised that even though has so many problems,

other women look at her big round face, blue eyes and blond hair and tell me

they want to have a baby. " She is so cute, I want to have a baby... " (they

don't even seem to feel threatened that something unexpected or bad could

happen). The fact that is so beautiful and smiles always seems to pull

us through and move us forward. Thanks again, Amy

[Guest guest]

Everyone who responded to my post. I have received a lot of advice and have

enjoyed hearing other folks stories. To S. who wrote: " may just

surprise everyone! If she has held on thru all she has already survived thru

she has a very strong little spirit and it sounds like she intends to fight

like hell. " Thanks for reminding me that. She is a fighter. Although I

get anxious about the unknown future, it is comforting to know that we are

not alone. I just have to share one more thing. Even though can't

see or coo, has microcepaly, and is developmentally delayed (can't roll over

or sit up) everyday her little spirit touches someone's life. Like the

disabled, elderly lady in the grocery store who volunteered to watch

so I could retrieve the car from the paking lot in the pouring down rain, (I

could see her the whole time-through a large glass widow, she never left my

sight). As I thanked her, I felt in my heart that the lady felt very honored

to be able to help someone that day, as she waited for her special transit

bus. And I am always surprised that even though has so many problems,

other women look at her big round face, blue eyes and blond hair and tell me

they want to have a baby. " She is so cute, I want to have a baby... " (they

don't even seem to feel threatened that something unexpected or bad could

happen). The fact that is so beautiful and smiles always seems to pull

us through and move us forward. Thanks again, Amy

[Guest guest]

You know, I am new to this list and I can't believe all the similarities

we all have!All the stuff I believed was inconsequential from my docs

are very commonly occuring phenomena with our shared pregnancies and

experiences with our mito children.Has anyone else noticed this or am I

crazy?!!I to felt my son stop moving in Utero around the 5 month mark,

and from there went into prem. labour 3 times.I was put on a drug to

stop it and given shots of steroids to mature his lungs.I had to stop

the drug as my heart reacted badly and a week later at 32 weeks

gestation my son was born.How were your kids right after they were born?

>

>Reply-To: Mitoonelist

>To: <Mitoonelist>

>Subject: Re: Need opionions, mito or not?

>Date: Wed, 24 Mar 1999 14:42:58 -0500

>

>

>

>Hello Amy. My name is Connie and my 2.5 yr old son, , is highly

>suspected of

>having a mito disorder.

>

>>Has anyone else have experience with the

>>metabolic MDs in Phila.? I know that Dr. G. Berry is on the UMDF but

I

>>don't know for certain if he has looked at 's case. I was so

angry

>>that the first skin bio didn't grow and they never called to let me

know.

>

>I live just outside Phila and my son was first suspected of having a

mito

>disorder when he was 10 mos. He had preliminary urine and blood work

which

>was abnormal so we saw Dr. Paige Kaplan at CHOP in 11/97 when he was 15

mos.

>Our experience with her was not good. She explained away his elevated

>lactic acid due to the fact he was crying when the blood was drawn

(what

>child doesn't cry?). She repeated the blood and urine tests at CHOP

and,

>based on her physical evaluation, was sure he did not have a metabolic

>disease. I had to leave about 4 messages and wait well over a week for

her

>to finally call back with the results of the latest lab work. She

said the

>urine organic acids had some abnormalities but this must be due to an

>infection in his intestine (as it turns out there were many

abnormalities

>and they were extremely high). She again said he did not have a

metabolic

>problem. I was overjoyed. I had the 3 part series from Exceptional

Parent

>on mito disorders and was so relieved he didn't have it. was

>diagnosed in March '98 with cerebral palsy which came as no surprise.

I was

>actually relieved he " only " had CP and not that terrible mito disease.

At

>least CP can't get any worse. The rest is a very long story but I'll

try to

>make it short - he became very ill and was hospitalized and we

discovered

>his liver problem. Back to metabolism at CHOP. Total, major

runaround.

>Dr. Kaplan was supposed to be organizing the next level of tests (liver

and

>muscle biopsies, brain MRI) but she completely dropped the ball. I

left so

>many messages and when she finally did call back she said she wanted to

>consult with other docs and would call me the following week. When I

hung

>up the phone I looked at my husband and said " I'll bet you a million

dollars

>we don't hear from her next week, or the week after that " . I didn't

hear

>from her again until 2 months later. In the meantime our other docs

got fed

>up and forwarded 's lab results to Dr. Kelley at

>Kennedy-Krieger in Baltimore. He took one look and said of course this

>child has a mitochondrial disorder. Dr. Kelley has been our godsend.

Our

>experience with him has been the polar opposite of our experience with

Dr.

>Kaplan. He always calls back the day I leave a message. He's kind,

caring,

>never rushes us and incredibly knowledgeable. He also sees patients at

the

>Clinic for Special Children in Strasburg, PA - it's actually on an

Amish

>farm.

>

>You mentioned Dr. Berry. We did meet him briefly and he seems like a

very

>nice man. I do wonder if our experience would have been different if

we had

>seen him instead of Dr. Kaplan.

>

>>Has any other moms had pregnancies where they didn't feel the baby

move?

>

>

>Yes! rarely moved, especially during the last trimester. I had

twice

>weekly non stress tests and was always relieved, almost surprised, to

hear

>his heartbeat as I was always so worried by his lack of activity. You

>mentioned you had high blood pressure. I had undiagnosed preeclampsia

which

>developed into HELLP syndrome. I've been told there is a connection

between

>preeclampsia and carrying kids with mito. Has anyone else experienced

this?

>

>

>If I can be of any help, please let me know. Please take care.

>

>Connie

>

>

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

>Start a new hobby. Meet a new friend.

>http://www.onelist.com

>Onelist: The leading provider of free email list services

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

>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

[Guest guest]

I think those symptoms are not related to metabolics really, in

particular mitochondrial disorders.I also brought similar type stuff up

with my child's team and they told me how the respiratory chain and the

Kreb's cycle functions and I have studied all the info I could get my

hands on and I think they are right.What it sounds like to me is more an

immunity or nutritional problem.Maybe give some more info!!!

>

>Reply-To: Mitoonelist

>To: <Mitoonelist>

>Subject: Re: Need opionions, mito or not?

>Date: Thu, 25 Mar 1999 06:58:49 -0800

>

>

>

>Connie, my daughter in law also had high blood pressure and one of my

>daughters kept spiking up with their pregnancy's. My whole family is

riddled

>with suspected mito. We've had a lot of babies with the cords around

their

>necks and one that had a BM in utero and had to be taken C section for

that

>reason. Our babies have a hard time warming up after birth also.

>Is gestational diabetes also common with mito I wonder?

>Does anyone else have problems with spontaneous bruising or canker

sores and

>tongue ulcers?

>Does anyone else do B12 shots? I don't have pernicious anemia but the

B12

>shots heal the spontaneous bruising, canker sores/tongue ulcers, clear

my

>mind, help with depression, & raise my energy level. S.

>

> Re: Need opionions, mito or not?

>

>

>>

>>

>>Hello Amy. My name is Connie and my 2.5 yr old son, , is highly

>>suspected of

>>having a mito disorder.

>>

>>>Has anyone else have experience with the

>>>metabolic MDs in Phila.? I know that Dr. G. Berry is on the UMDF but

I

>>>don't know for certain if he has looked at 's case. I was so

angry

>>>that the first skin bio didn't grow and they never called to let me

know.

>>

>>I live just outside Phila and my son was first suspected of having a

mito

>>disorder when he was 10 mos. He had preliminary urine and blood work

which

>>was abnormal so we saw Dr. Paige Kaplan at CHOP in 11/97 when he was

15

>mos.

>>Our experience with her was not good. She explained away his elevated

>>lactic acid due to the fact he was crying when the blood was drawn

(what

>>child doesn't cry?). She repeated the blood and urine tests at CHOP

and,

>>based on her physical evaluation, was sure he did not have a metabolic

>>disease. I had to leave about 4 messages and wait well over a week

for her

>>to finally call back with the results of the latest lab work. She

said

>the

>>urine organic acids had some abnormalities but this must be due to an

>>infection in his intestine (as it turns out there were many

abnormalities

>>and they were extremely high). She again said he did not have a

metabolic

>>problem. I was overjoyed. I had the 3 part series from Exceptional

Parent

>>on mito disorders and was so relieved he didn't have it. was

>>diagnosed in March '98 with cerebral palsy which came as no surprise.

I

>was

>>actually relieved he " only " had CP and not that terrible mito disease.

At

>>least CP can't get any worse. The rest is a very long story but I'll

try

>to

>>make it short - he became very ill and was hospitalized and we

discovered

>>his liver problem. Back to metabolism at CHOP. Total, major

runaround.

>>Dr. Kaplan was supposed to be organizing the next level of tests

(liver and

>>muscle biopsies, brain MRI) but she completely dropped the ball. I

left so

>>many messages and when she finally did call back she said she wanted

to

>>consult with other docs and would call me the following week. When I

hung

>>up the phone I looked at my husband and said " I'll bet you a million

>dollars

>>we don't hear from her next week, or the week after that " . I didn't

hear

>>from her again until 2 months later. In the meantime our other docs

got

>fed

>>up and forwarded 's lab results to Dr. Kelley at

>>Kennedy-Krieger in Baltimore. He took one look and said of course

this

>>child has a mitochondrial disorder. Dr. Kelley has been our godsend.

Our

>>experience with him has been the polar opposite of our experience with

Dr.

>>Kaplan. He always calls back the day I leave a message. He's kind,

>caring,

>>never rushes us and incredibly knowledgeable. He also sees patients

at the

>>Clinic for Special Children in Strasburg, PA - it's actually on an

Amish

>>farm.

>>

>>You mentioned Dr. Berry. We did meet him briefly and he seems like a

very

>>nice man. I do wonder if our experience would have been different if

we

>had

>>seen him instead of Dr. Kaplan.

>>

>>>Has any other moms had pregnancies where they didn't feel the baby

move?

>>

>>

>>Yes! rarely moved, especially during the last trimester. I had

>twice

>>weekly non stress tests and was always relieved, almost surprised, to

hear

>>his heartbeat as I was always so worried by his lack of activity. You

>>mentioned you had high blood pressure. I had undiagnosed preeclampsia

>which

>>developed into HELLP syndrome. I've been told there is a connection

>between

>>preeclampsia and carrying kids with mito. Has anyone else experienced

>this?

>>

>>

>>If I can be of any help, please let me know. Please take care.

>>

>>Connie

>>

>>

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

>>Start a new hobby. Meet a new friend.

>>http://www.onelist.com

>>Onelist: The leading provider of free email list services

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

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

>affected by mitochondrial disease.

>>

>

>

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

>We have a new web site!

>http://www.onelist.com

>Onelist: The leading provider of free email community services

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

>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

[Guest guest]

ATTENTION! I wanted to make sure everyone knew about MUMS ( Mothers

United For Moral Support).It's an organization that unites moms

worldwide that are dealing with exceptional kids.There is a newsletter

where I have met other moms,a parent link according to your child's

disorder and a web site.The woman who runs it is really great.I don't

have the info on me now but you could find it in your search engines.

>From: GOLYNIE@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Need opionions, mito or not?

>Date: Thu, 25 Mar 1999 23:11:04 EST

>

>From: GOLYNIE@...

>

>Dear Amy:

>

>Thank you for shareing your oh-so-famillure story. My experence was

different

>but my levil of exasperation and helplessness and confusion are just as

yours

>are.

>

>In my experence with mito-disease since 1991 I can tell you that some

people

>know more about their particular mito disease than others. If your

child has

>a more " popular " form of mito disease the docs *might* be able to tell

you

>cause or life expectancy etc., but I think it a more common scenareo

that they

>won't be able to give a defined diagnosis. Because there are so many

>different mito-disorders, and disorders that disrupt mito-function but

are of

>neucler origine coupled with the fact that the mito-science is so new

(since

>the 1950's), since it affects such a small pocket of the population, it

looks

>like a while before they develope a method of diagnostics that are

cost-

>affective and produce the answers.

>

>Organizations such as the EMDN (Europien Mitochondrial Disease Network)

the

>UMDF (United Mitochondrial Disease Foundation,) and JUMP (Juvinal

Unknown

>Mitochondrial Problems) just to name a few, work dillagently to raise

monies

>and bring all the most brilliant minds in medicine togeather to further

>research, but an easy resolution, for some of us that is, looks to be a

ways

>off.

>

>To have more children is a highly personal decision. We had one child

after

>our daughter was born with a metabolic disorder ( " suspected "

mitochondrial

>emcephalomyopathy). He is mildly affected. We then adopted two more

children

>(we wanted six children but stopped at 4 when Amy's disease became hard

to

>deal with and our two adopted Fetal Alcohal Syndrome children proved a

much

>larger challenge when complicated by the birth children's symptoms. Am

I

>sorry we had more? NO WAY! But not every one feels this way.

>

>I hope this is helpful to you.

>By the way, welcome to the MitoList.

>

>Lynnie

>Wife, Mother, Advocate

>

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

>Ideas on how we can improve ONElist?

>http://www.onelist.com

>Check out the Suggestion Box feature on our new web site

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

>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

[Guest guest]

ATTENTION! I wanted to make sure everyone knew about MUMS ( Mothers

United For Moral Support).It's an organization that unites moms

worldwide that are dealing with exceptional kids.There is a newsletter

where I have met other moms,a parent link according to your child's

disorder and a web site.The woman who runs it is really great.I don't

have the info on me now but you could find it in your search engines.

>From: GOLYNIE@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Need opionions, mito or not?

>Date: Thu, 25 Mar 1999 23:11:04 EST

>

>From: GOLYNIE@...

>

>Dear Amy:

>

>Thank you for shareing your oh-so-famillure story. My experence was

different

>but my levil of exasperation and helplessness and confusion are just as

yours

>are.

>

>In my experence with mito-disease since 1991 I can tell you that some

people

>know more about their particular mito disease than others. If your

child has

>a more " popular " form of mito disease the docs *might* be able to tell

you

>cause or life expectancy etc., but I think it a more common scenareo

that they

>won't be able to give a defined diagnosis. Because there are so many

>different mito-disorders, and disorders that disrupt mito-function but

are of

>neucler origine coupled with the fact that the mito-science is so new

(since

>the 1950's), since it affects such a small pocket of the population, it

looks

>like a while before they develope a method of diagnostics that are

cost-

>affective and produce the answers.

>

>Organizations such as the EMDN (Europien Mitochondrial Disease Network)

the

>UMDF (United Mitochondrial Disease Foundation,) and JUMP (Juvinal

Unknown

>Mitochondrial Problems) just to name a few, work dillagently to raise

monies

>and bring all the most brilliant minds in medicine togeather to further

>research, but an easy resolution, for some of us that is, looks to be a

ways

>off.

>

>To have more children is a highly personal decision. We had one child

after

>our daughter was born with a metabolic disorder ( " suspected "

mitochondrial

>emcephalomyopathy). He is mildly affected. We then adopted two more

children

>(we wanted six children but stopped at 4 when Amy's disease became hard

to

>deal with and our two adopted Fetal Alcohal Syndrome children proved a

much

>larger challenge when complicated by the birth children's symptoms. Am

I

>sorry we had more? NO WAY! But not every one feels this way.

>

>I hope this is helpful to you.

>By the way, welcome to the MitoList.

>

>Lynnie

>Wife, Mother, Advocate

>

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

>Ideas on how we can improve ONElist?

>http://www.onelist.com

>Check out the Suggestion Box feature on our new web site

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

>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

[Guest guest]

I was touched by your story, especially because I live it too.My son is

more like a 6 month old than 20 months, he is immobile and nonverbal but

does this hinder his ability to be a loving, social being? Far from it!

He has amazed me and everyone who meets him.All the nurses and docs we

encounter fall in love with him.The nurses from my town come to the city

when he is in because they miss him!He has single-handedly brought

members of my family who had not talked to each other for years, back

together and reunited me with my mom, which I thought was a relationship

that could'nt be mended.He lights up a room when he smiles and has love

for everyone who even looks his way!He makes people feel good in a world

where there can be so much bad.One experience really hit me......we were

at our metabolic clinic appointment in the city and while we were

waiting in the play area a 15 yr old boy wheeled himself in.He was using

his feet and had his head down.He was a patient on the ward and had

obviously had extensive brain surgery.His scalp was all scars.There were

other parents and kids in the room and they all started acting wary.The

ones who knew him(he is a long time resident of this ward) were trying

to convince him to leave and return to his room.I was shocked!Anyway

Jonah is watching him and as soon as the boy makes eye contact with him

his face lit up smiling.The boy wheeled over and slurrily asked if he

could give Jonah a toy.I of course said yes and for the next 20 min they

interacted with one another.The boy told me he looks scary and kids are

afraid of him because of his scars.I said that Jonah didn't seem scared

and he looked so sad for a minute and then he hung his head.I was

starting to get a big lump in my throat when all of a sudden Jonah

reached up (this is rare) and placed both hands on this boys head and

began to rub one of the scars with his thumb.The boy looked up with a

smile of such joy and said you are right! He isn't scared!I swear I

barely kept the tears in!It may be a little wacky of me but it seemed

like Jonah understood on some level what this boy needed and gave it to

him.Despite his disabilities, Jonah connected withthis boy.Well, my

novel is over.......Thanks for listening.

>

>Reply-To: Mitoonelist

>To: <Mitoonelist>

>Subject: Re: Need opionions, mito or not?

>Date: Fri, 26 Mar 1999 01:11:11 -0500

>

>

>

>Everyone who responded to my post. I have received a lot of advice and

have

>enjoyed hearing other folks stories. To S. who wrote: " may

just

>surprise everyone! If she has held on thru all she has already survived

thru

>she has a very strong little spirit and it sounds like she intends to

fight

>like hell. " Thanks for reminding me that. She is a fighter. Although

I

>get anxious about the unknown future, it is comforting to know that we

are

>not alone. I just have to share one more thing. Even though

can't

>see or coo, has microcepaly, and is developmentally delayed (can't roll

over

>or sit up) everyday her little spirit touches someone's life. Like the

>disabled, elderly lady in the grocery store who volunteered to watch

>so I could retrieve the car from the paking lot in the pouring down

rain, (I

>could see her the whole time-through a large glass widow, she never

left my

>sight). As I thanked her, I felt in my heart that the lady felt very

honored

>to be able to help someone that day, as she waited for her special

transit

>bus. And I am always surprised that even though has so many

problems,

>other women look at her big round face, blue eyes and blond hair and

tell me

>they want to have a baby. " She is so cute, I want to have a baby... "

(they

>don't even seem to feel threatened that something unexpected or bad

could

>happen). The fact that is so beautiful and smiles always seems to

pull

>us through and move us forward. Thanks again, Amy

>

>

>

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

>

[Guest guest]

I was touched by your story, especially because I live it too.My son is

more like a 6 month old than 20 months, he is immobile and nonverbal but

does this hinder his ability to be a loving, social being? Far from it!

He has amazed me and everyone who meets him.All the nurses and docs we

encounter fall in love with him.The nurses from my town come to the city

when he is in because they miss him!He has single-handedly brought

members of my family who had not talked to each other for years, back

together and reunited me with my mom, which I thought was a relationship

that could'nt be mended.He lights up a room when he smiles and has love

for everyone who even looks his way!He makes people feel good in a world

where there can be so much bad.One experience really hit me......we were

at our metabolic clinic appointment in the city and while we were

waiting in the play area a 15 yr old boy wheeled himself in.He was using

his feet and had his head down.He was a patient on the ward and had

obviously had extensive brain surgery.His scalp was all scars.There were

other parents and kids in the room and they all started acting wary.The

ones who knew him(he is a long time resident of this ward) were trying

to convince him to leave and return to his room.I was shocked!Anyway

Jonah is watching him and as soon as the boy makes eye contact with him

his face lit up smiling.The boy wheeled over and slurrily asked if he

could give Jonah a toy.I of course said yes and for the next 20 min they

interacted with one another.The boy told me he looks scary and kids are

afraid of him because of his scars.I said that Jonah didn't seem scared

and he looked so sad for a minute and then he hung his head.I was

starting to get a big lump in my throat when all of a sudden Jonah

reached up (this is rare) and placed both hands on this boys head and

began to rub one of the scars with his thumb.The boy looked up with a

smile of such joy and said you are right! He isn't scared!I swear I

barely kept the tears in!It may be a little wacky of me but it seemed

like Jonah understood on some level what this boy needed and gave it to

him.Despite his disabilities, Jonah connected withthis boy.Well, my

novel is over.......Thanks for listening.

>

>Reply-To: Mitoonelist

>To: <Mitoonelist>

>Subject: Re: Need opionions, mito or not?

>Date: Fri, 26 Mar 1999 01:11:11 -0500

>

>

>

>Everyone who responded to my post. I have received a lot of advice and

have

>enjoyed hearing other folks stories. To S. who wrote: " may

just

>surprise everyone! If she has held on thru all she has already survived

thru

>she has a very strong little spirit and it sounds like she intends to

fight

>like hell. " Thanks for reminding me that. She is a fighter. Although

I

>get anxious about the unknown future, it is comforting to know that we

are

>not alone. I just have to share one more thing. Even though

can't

>see or coo, has microcepaly, and is developmentally delayed (can't roll

over

>or sit up) everyday her little spirit touches someone's life. Like the

>disabled, elderly lady in the grocery store who volunteered to watch

>so I could retrieve the car from the paking lot in the pouring down

rain, (I

>could see her the whole time-through a large glass widow, she never

left my

>sight). As I thanked her, I felt in my heart that the lady felt very

honored

>to be able to help someone that day, as she waited for her special

transit

>bus. And I am always surprised that even though has so many

problems,

>other women look at her big round face, blue eyes and blond hair and

tell me

>they want to have a baby. " She is so cute, I want to have a baby... "

(they

>don't even seem to feel threatened that something unexpected or bad

could

>happen). The fact that is so beautiful and smiles always seems to

pull

>us through and move us forward. Thanks again, Amy

>

>

>

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

>

[Guest guest]

I was touched by your story, especially because I live it too.My son is

more like a 6 month old than 20 months, he is immobile and nonverbal but

does this hinder his ability to be a loving, social being? Far from it!

He has amazed me and everyone who meets him.All the nurses and docs we

encounter fall in love with him.The nurses from my town come to the city

when he is in because they miss him!He has single-handedly brought

members of my family who had not talked to each other for years, back

together and reunited me with my mom, which I thought was a relationship

that could'nt be mended.He lights up a room when he smiles and has love

for everyone who even looks his way!He makes people feel good in a world

where there can be so much bad.One experience really hit me......we were

at our metabolic clinic appointment in the city and while we were

waiting in the play area a 15 yr old boy wheeled himself in.He was using

his feet and had his head down.He was a patient on the ward and had

obviously had extensive brain surgery.His scalp was all scars.There were

other parents and kids in the room and they all started acting wary.The

ones who knew him(he is a long time resident of this ward) were trying

to convince him to leave and return to his room.I was shocked!Anyway

Jonah is watching him and as soon as the boy makes eye contact with him

his face lit up smiling.The boy wheeled over and slurrily asked if he

could give Jonah a toy.I of course said yes and for the next 20 min they

interacted with one another.The boy told me he looks scary and kids are

afraid of him because of his scars.I said that Jonah didn't seem scared

and he looked so sad for a minute and then he hung his head.I was

starting to get a big lump in my throat when all of a sudden Jonah

reached up (this is rare) and placed both hands on this boys head and

began to rub one of the scars with his thumb.The boy looked up with a

smile of such joy and said you are right! He isn't scared!I swear I

barely kept the tears in!It may be a little wacky of me but it seemed

like Jonah understood on some level what this boy needed and gave it to

him.Despite his disabilities, Jonah connected withthis boy.Well, my

novel is over.......Thanks for listening.

>

>Reply-To: Mitoonelist

>To: <Mitoonelist>

>Subject: Re: Need opionions, mito or not?

>Date: Fri, 26 Mar 1999 01:11:11 -0500

>

>

>

>Everyone who responded to my post. I have received a lot of advice and

have

>enjoyed hearing other folks stories. To S. who wrote: " may

just

>surprise everyone! If she has held on thru all she has already survived

thru

>she has a very strong little spirit and it sounds like she intends to

fight

>like hell. " Thanks for reminding me that. She is a fighter. Although

I

>get anxious about the unknown future, it is comforting to know that we

are

>not alone. I just have to share one more thing. Even though

can't

>see or coo, has microcepaly, and is developmentally delayed (can't roll

over

>or sit up) everyday her little spirit touches someone's life. Like the

>disabled, elderly lady in the grocery store who volunteered to watch

>so I could retrieve the car from the paking lot in the pouring down

rain, (I

>could see her the whole time-through a large glass widow, she never

left my

>sight). As I thanked her, I felt in my heart that the lady felt very

honored

>to be able to help someone that day, as she waited for her special

transit

>bus. And I am always surprised that even though has so many

problems,

>other women look at her big round face, blue eyes and blond hair and

tell me

>they want to have a baby. " She is so cute, I want to have a baby... "

(they

>don't even seem to feel threatened that something unexpected or bad

could

>happen). The fact that is so beautiful and smiles always seems to

pull

>us through and move us forward. Thanks again, Amy

>

>

>

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

>

[Guest guest]

In a message dated 3/27/1999 7:19:57 AM Eastern Standard Time,

shelley_lev@... writes:

> How were your kids right after they were born?

>

My mother wrote in the baby book that there were no problems -- " except the

baby wil not move or eat " !

the Elder (MTM and OXPHOS)

[Guest guest]

In a message dated 3/27/1999 7:19:57 AM Eastern Standard Time,

shelley_lev@... writes:

> How were your kids right after they were born?

>

My mother wrote in the baby book that there were no problems -- " except the

baby wil not move or eat " !

the Elder (MTM and OXPHOS)

[Guest guest]

In a message dated 3/27/1999 7:19:57 AM Eastern Standard Time,

shelley_lev@... writes:

> How were your kids right after they were born?

>

My mother wrote in the baby book that there were no problems -- " except the

baby wil not move or eat " !

the Elder (MTM and OXPHOS)