Re: New to the group and the diagnosis

[Guest guest]

hi and welcome to the group.

dr. bruce cohen is at the cleveland clinic (ohio) and is one of the

most well known Mito specialists.

we live in maryland and see him once a year... a 4 1/2 drive each

way, but worth it. i know it would be much longer for you....so

hopefully someone who lives closer to you might be able to make

another recommendation.

bethany

mom to brennan 7, palmer & anna grace (leighs) 4

> Hello, I have been reading everything that has been posted but

have

> yet to post. I have two sons that have been diagnosised with

> probable Mito by muscle byopsy but don't have a specific type. We

> have been through four years of heck, but it sounds like everyone

> goes through this. We live in the Kansas City area and have only

one

> doctor who really gives us any info about the Mito and really it

is

> all overwhelming to us. I have so many questions I don't even

know

> where to start to I will introduce my sons.

>

> Gavin age four- Mito, PDD, Asthma, history of epilepsy which

started

> at 4 months and ended about 8 months ago and is nolonger on meds,

> dosn't sweat, low tone, temerature intolerance, small head(can't

> remember the long term) that is getting worse, developmental

delays,

> processing and motorplanning problems, and he has weird fatigue

and

> overall weakness with illness, weather changes, allergies, normal

> play, and emotional stress. Gavin looks pretty normal and seems

like

> a healthy kid so we gat a lot of questions about his need for a

> wheelchair or why we put limitations on his playtime. He does

seem

> to be responding a little to CoQ10.

>

> Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic

> gastroenteritis) EE&EC, Lung disease with episodes of oxygen

hunger,

> was a floppy baby(didn't hold his head up till he was 5 months

old,

> Autism (doing great with speech but still has big isusses with

> behaviors and social), Swallowing problems, Excessive sweating,

> temperture intolerances, slightly abnormal ERG, abnormal EEG, 2

> seizures, abnormal immune system(still going through testing),

slight

> kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring-

corn-

> and who knows allergies. Gage has had over 26 hospital stays for

> feeding intolerance, asthma, common viruses or infection, FTT, and

> reasons that never got figured out, he also seems just fine to

most

> he walks, talks, runs, but gets very sick and takes months to get

> over th common cold. Taking COQ10 and not seeing any results, but

he

> has been sick for 3 months straight.

>

> So I guess I am looking for a good Mito doctor who can lead us in

the

> right direction, answer questions, and not make me feel insane.

We

> are tired of doctors and hospitals even after we got the diagnosis

> doctors still don't believe that is the answer they feel the kids

are

> doing too well and that they would not make any improvements and

that

> we would more then likely have seen regression. We are just so

> tired!! Thank you for taking the time to read this it sounds like

> everyone has their hands full! Crystal mommy to Gavin and Gage.

[Guest guest]

hi and welcome to the group.

dr. bruce cohen is at the cleveland clinic (ohio) and is one of the

most well known Mito specialists.

we live in maryland and see him once a year... a 4 1/2 drive each

way, but worth it. i know it would be much longer for you....so

hopefully someone who lives closer to you might be able to make

another recommendation.

bethany

mom to brennan 7, palmer & anna grace (leighs) 4

> Hello, I have been reading everything that has been posted but

have

> yet to post. I have two sons that have been diagnosised with

> probable Mito by muscle byopsy but don't have a specific type. We

> have been through four years of heck, but it sounds like everyone

> goes through this. We live in the Kansas City area and have only

one

> doctor who really gives us any info about the Mito and really it

is

> all overwhelming to us. I have so many questions I don't even

know

> where to start to I will introduce my sons.

>

> Gavin age four- Mito, PDD, Asthma, history of epilepsy which

started

> at 4 months and ended about 8 months ago and is nolonger on meds,

> dosn't sweat, low tone, temerature intolerance, small head(can't

> remember the long term) that is getting worse, developmental

delays,

> processing and motorplanning problems, and he has weird fatigue

and

> overall weakness with illness, weather changes, allergies, normal

> play, and emotional stress. Gavin looks pretty normal and seems

like

> a healthy kid so we gat a lot of questions about his need for a

> wheelchair or why we put limitations on his playtime. He does

seem

> to be responding a little to CoQ10.

>

> Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic

> gastroenteritis) EE&EC, Lung disease with episodes of oxygen

hunger,

> was a floppy baby(didn't hold his head up till he was 5 months

old,

> Autism (doing great with speech but still has big isusses with

> behaviors and social), Swallowing problems, Excessive sweating,

> temperture intolerances, slightly abnormal ERG, abnormal EEG, 2

> seizures, abnormal immune system(still going through testing),

slight

> kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring-

corn-

> and who knows allergies. Gage has had over 26 hospital stays for

> feeding intolerance, asthma, common viruses or infection, FTT, and

> reasons that never got figured out, he also seems just fine to

most

> he walks, talks, runs, but gets very sick and takes months to get

> over th common cold. Taking COQ10 and not seeing any results, but

he

> has been sick for 3 months straight.

>

> So I guess I am looking for a good Mito doctor who can lead us in

the

> right direction, answer questions, and not make me feel insane.

We

> are tired of doctors and hospitals even after we got the diagnosis

> doctors still don't believe that is the answer they feel the kids

are

> doing too well and that they would not make any improvements and

that

> we would more then likely have seen regression. We are just so

> tired!! Thank you for taking the time to read this it sounds like

> everyone has their hands full! Crystal mommy to Gavin and Gage.

[Guest guest]

hi and welcome to the group.

dr. bruce cohen is at the cleveland clinic (ohio) and is one of the

most well known Mito specialists.

we live in maryland and see him once a year... a 4 1/2 drive each

way, but worth it. i know it would be much longer for you....so

hopefully someone who lives closer to you might be able to make

another recommendation.

bethany

mom to brennan 7, palmer & anna grace (leighs) 4

> Hello, I have been reading everything that has been posted but

have

> yet to post. I have two sons that have been diagnosised with

> probable Mito by muscle byopsy but don't have a specific type. We

> have been through four years of heck, but it sounds like everyone

> goes through this. We live in the Kansas City area and have only

one

> doctor who really gives us any info about the Mito and really it

is

> all overwhelming to us. I have so many questions I don't even

know

> where to start to I will introduce my sons.

>

> Gavin age four- Mito, PDD, Asthma, history of epilepsy which

started

> at 4 months and ended about 8 months ago and is nolonger on meds,

> dosn't sweat, low tone, temerature intolerance, small head(can't

> remember the long term) that is getting worse, developmental

delays,

> processing and motorplanning problems, and he has weird fatigue

and

> overall weakness with illness, weather changes, allergies, normal

> play, and emotional stress. Gavin looks pretty normal and seems

like

> a healthy kid so we gat a lot of questions about his need for a

> wheelchair or why we put limitations on his playtime. He does

seem

> to be responding a little to CoQ10.

>

> Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic

> gastroenteritis) EE&EC, Lung disease with episodes of oxygen

hunger,

> was a floppy baby(didn't hold his head up till he was 5 months

old,

> Autism (doing great with speech but still has big isusses with

> behaviors and social), Swallowing problems, Excessive sweating,

> temperture intolerances, slightly abnormal ERG, abnormal EEG, 2

> seizures, abnormal immune system(still going through testing),

slight

> kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring-

corn-

> and who knows allergies. Gage has had over 26 hospital stays for

> feeding intolerance, asthma, common viruses or infection, FTT, and

> reasons that never got figured out, he also seems just fine to

most

> he walks, talks, runs, but gets very sick and takes months to get

> over th common cold. Taking COQ10 and not seeing any results, but

he

> has been sick for 3 months straight.

>

> So I guess I am looking for a good Mito doctor who can lead us in

the

> right direction, answer questions, and not make me feel insane.

We

> are tired of doctors and hospitals even after we got the diagnosis

> doctors still don't believe that is the answer they feel the kids

are

> doing too well and that they would not make any improvements and

that

> we would more then likely have seen regression. We are just so

> tired!! Thank you for taking the time to read this it sounds like

> everyone has their hands full! Crystal mommy to Gavin and Gage.

[Guest guest]

Crystal,

Welcome to the group! Sounds like you have had a rough four years. As far as a mito doc, we see Dr. Whiteman at Mayo Clinic in Rochester, Minnesota. We were very impressed with his knowledge of mito and how he took the time to explain everything to us. He is also very thorough and looks at every aspect possible.

Another doc a lot of people see on this list is Dr. Bruce Cohen in Cleveland, Ohio. The talk on the list is it takes quite a while to get in to see him but, he is one of the best.

Those are the two big specialists in the midwest. I wish you luck on your journey and if we can help you with anything else, please ask away.

Kim - Mom to and Lindsey (2) Partial Complex I

New to the group and the diagnosis

Hello, I have been reading everything that has been posted but have yet to post. I have two sons that have been diagnosised with probable Mito by muscle byopsy but don't have a specific type. We have been through four years of heck, but it sounds like everyone goes through this. We live in the Kansas City area and have only one doctor who really gives us any info about the Mito and really it is all overwhelming to us. I have so many questions I don't even know where to start to I will introduce my sons.Gavin age four- Mito, PDD, Asthma, history of epilepsy which started at 4 months and ended about 8 months ago and is nolonger on meds, dosn't sweat, low tone, temerature intolerance, small head(can't remember the long term) that is getting worse, developmental delays, processing and motorplanning problems, and he has weird fatigue and overall weakness with illness, weather changes, allergies, normal play, and emotional stress. Gavin looks pretty normal and seems like a healthy kid so we gat a lot of questions about his need for a wheelchair or why we put limitations on his playtime. He does seem to be responding a little to CoQ10.Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic gastroenteritis) EE & EC, Lung disease with episodes of oxygen hunger, was a floppy baby(didn't hold his head up till he was 5 months old, Autism (doing great with speech but still has big isusses with behaviors and social), Swallowing problems, Excessive sweating, temperture intolerances, slightly abnormal ERG, abnormal EEG, 2 seizures, abnormal immune system(still going through testing), slight kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring-corn-and who knows allergies. Gage has had over 26 hospital stays for feeding intolerance, asthma, common viruses or infection, FTT, and reasons that never got figured out, he also seems just fine to most he walks, talks, runs, but gets very sick and takes months to get over th common cold. Taking COQ10 and not seeing any results, but he has been sick for 3 months straight.So I guess I am looking for a good Mito doctor who can lead us in the right direction, answer questions, and not make me feel insane. We are tired of doctors and hospitals even after we got the diagnosis doctors still don't believe that is the answer they feel the kids are doing too well and that they would not make any improvements and that we would more then likely have seen regression. We are just so tired!! Thank you for taking the time to read this it sounds like everyone has their hands full! Crystal mommy to Gavin and Gage.Please contact mito-owner with any problems or questions.

[Guest guest]

even after we got the diagnosis doctors still don't believe that is the answer they feel the kids are doing too well and that they would not make any improvements and that we would more then likely have seen regression.

Hi Crystal, Welcome to the group! Hope you are settling in=) Sorry for the late response, but I am quite behind on my mail. I just wanted to comment that even though my daughters labs at 7 mos indicated a mitochondrial issue, her neuro ruled it out because she was doing 'too well'. She presented with very low tone, but was showing signs of making progress. It wasn't until she passed 2 and had not met any milestones, that her neuro revisited the mito dx and continued further testing. I only recently found out about those early labs, he had always told us they were "essentially normal".

Chelsea just turned 7 yesterday! She is severely neurologically affected by mito and still functions physically at the 3 to 6 month range. She appears much smarter though!

e, Chelsea's mom (nonspecific mito)