Just Diagnosed With Mito (Complex I & II Deficiency)

[Guest guest]

Hello, my name is Roseanna and our 7 month old son, Joey, was just

diagnosed with Mitochondrial Disease (Complex I & II Deficiency). My

husband and I are completely numb and still in shock from hearing

this. Our neurologist doesn't have alot of answers as to what lies

ahead for Joey. All we know is that he has hard to control seizures,

he cannot hold his head up or sit up and sleeps 18 hours out of the

day. We are waiting for an appointment to go see an specialist in

Atlanta. If anyone can shed some light as to what we might expect I

would be so grateful. Currently, Joey takes Phenobarbital,

Trileptal, Zonegran, Keppra, Zantac, B-6, Q-10, Biotin and

Carnitine. He is 19 pounds and is 28 " long. I have no idea what a

Complex deficiency is. If you can offer any advice, thank you.

Roseanna

[Guest guest]

Hello, my name is Roseanna and our 7 month old son, Joey, was just

diagnosed with Mitochondrial Disease (Complex I & II Deficiency). My

husband and I are completely numb and still in shock from hearing

this. Our neurologist doesn't have alot of answers as to what lies

ahead for Joey. All we know is that he has hard to control seizures,

he cannot hold his head up or sit up and sleeps 18 hours out of the

day. We are waiting for an appointment to go see an specialist in

Atlanta. If anyone can shed some light as to what we might expect I

would be so grateful. Currently, Joey takes Phenobarbital,

Trileptal, Zonegran, Keppra, Zantac, B-6, Q-10, Biotin and

Carnitine. He is 19 pounds and is 28 " long. I have no idea what a

Complex deficiency is. If you can offer any advice, thank you.

Roseanna

[Guest guest]

Roseanna,

Let me start by saying welcome, and also i'm sorry for the circumstances that brought you here. I know it's a life-altering event when you first hear about mito diseases and we all know first hand about that numbness and shock you are feeling right now. Have you found the UMDF website yet? It's great for helping to explain the differences between Complexes I-IV. United Mitochondrial Disease Foundation

Here's the link in case you've not found it. Also i would encourage you to get ahold of Exceptional Parent magazine. They put out a series of articles several years ago that really helped me understand what mito was all about. Gosh, it would be about 6 yrs old now, but i remember thinking that it really did make sense. Maybe check their archives for it??

Also, one of the first things you'll learn is that no two kids with mito will ever present exactly the same. It all depends on where the mitochondria in your body are affected and to what extent. Some kids never gain weight, some are quite normal and others considered heavy. Some kids have severe developmental delays, some are cognitively normal. So i guess the point here is that there is not real way of predicting exactly what the future holds for your son.

Do you have a really good neuro and/or mito specialist? If not, that is the VER"Y first thing i wold look for. You are now on a moving train headed for an unknown destination and you need a good conductor.

I'm sorry to cut this short but we have to go to Family Fun Night at my son's school. Hope this helps a little bit. Let us know how we can help you.

ruth

mom to Mitch (9 1/2) and Lexi (6 1/2) both mito affected and my treasures

[Guest guest]

Welcome to the group. I am sorry to hear of your son's diagnosis. I am

sure you must feel many emotions right now and feel somewhat lost. This

group is a wealth of information and can answer almost any question you

might have. If there is anything specific, please ask away. As others have

said, there are some great web sites that are available such as UMDF.org

that you can go to, along with many others. It also might help to read some

peoples' personal stories and often a link at the bottom of peoples'

messages will contain a link or two with places to go to read their stories

(like mine does). Again, welcome.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Just Diagnosed With Mito (Complex I & II Deficiency)

>

>

>

> Hello, my name is Roseanna and our 7 month old son, Joey, was just

> diagnosed with Mitochondrial Disease (Complex I & II Deficiency). My

> husband and I are completely numb and still in shock from hearing

> this. Our neurologist doesn't have alot of answers as to what lies

> ahead for Joey. All we know is that he has hard to control seizures,

> he cannot hold his head up or sit up and sleeps 18 hours out of the

> day. We are waiting for an appointment to go see an specialist in

> Atlanta. If anyone can shed some light as to what we might expect I

> would be so grateful. Currently, Joey takes Phenobarbital,

> Trileptal, Zonegran, Keppra, Zantac, B-6, Q-10, Biotin and

> Carnitine. He is 19 pounds and is 28 " long. I have no idea what a

> Complex deficiency is. If you can offer any advice, thank you.

>

> Roseanna

>

>

>

>

>

>

>

>

>

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

>

[Guest guest]

Welcome to the group. I am sorry to hear of your son's diagnosis. I am

sure you must feel many emotions right now and feel somewhat lost. This

group is a wealth of information and can answer almost any question you

might have. If there is anything specific, please ask away. As others have

said, there are some great web sites that are available such as UMDF.org

that you can go to, along with many others. It also might help to read some

peoples' personal stories and often a link at the bottom of peoples'

messages will contain a link or two with places to go to read their stories

(like mine does). Again, welcome.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Just Diagnosed With Mito (Complex I & II Deficiency)

>

>

>

> Hello, my name is Roseanna and our 7 month old son, Joey, was just

> diagnosed with Mitochondrial Disease (Complex I & II Deficiency). My

> husband and I are completely numb and still in shock from hearing

> this. Our neurologist doesn't have alot of answers as to what lies

> ahead for Joey. All we know is that he has hard to control seizures,

> he cannot hold his head up or sit up and sleeps 18 hours out of the

> day. We are waiting for an appointment to go see an specialist in

> Atlanta. If anyone can shed some light as to what we might expect I

> would be so grateful. Currently, Joey takes Phenobarbital,

> Trileptal, Zonegran, Keppra, Zantac, B-6, Q-10, Biotin and

> Carnitine. He is 19 pounds and is 28 " long. I have no idea what a

> Complex deficiency is. If you can offer any advice, thank you.

>

> Roseanna

>

>

>

>

>

>

>

>

>

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

>

[Guest guest]

Roseanna,

Sorry to hear about your little boy but I am glad you found this group. They are wonderful people and they will help you to get through. Know that we are hear for you at all times. We don't judge one another for decisions that are made regarding our Mito children as we all will make different choices concerning their care. Our common concern is our children and the hope that someday they will find a cure to this horrible Monster called Mito.

Hang on for the ride of your life. It will much like a roller coaster. Their will be times that you will be in the valley and smooth sailing and then you will start that uphill ride and not know what will be on the other side of the hill. But always remember, you are not on this ride alone.

We are there with you.

Kathy, grandma to Audrey, 3 yearsbambinojoey wrote:

Hello, my name is Roseanna and our 7 month old son, Joey, was just diagnosed with Mitochondrial Disease (Complex I & II Deficiency). My husband and I are completely numb and still in shock from hearing this. Our neurologist doesn't have alot of answers as to what lies ahead for Joey. All we know is that he has hard to control seizures, he cannot hold his head up or sit up and sleeps 18 hours out of the day. We are waiting for an appointment to go see an specialist in Atlanta. If anyone can shed some light as to what we might expect I would be so grateful. Currently, Joey takes Phenobarbital, Trileptal, Zonegran, Keppra, Zantac, B-6, Q-10, Biotin and Carnitine. He is 19 pounds and is 28" long. I have no idea what a Complex deficiency is. If you can offer any advice, thank

you.RoseannaPlease contact mito-owner with any problems or questions.

[Guest guest]

Roseanna,

Sorry to hear about your little boy but I am glad you found this group. They are wonderful people and they will help you to get through. Know that we are hear for you at all times. We don't judge one another for decisions that are made regarding our Mito children as we all will make different choices concerning their care. Our common concern is our children and the hope that someday they will find a cure to this horrible Monster called Mito.

Hang on for the ride of your life. It will much like a roller coaster. Their will be times that you will be in the valley and smooth sailing and then you will start that uphill ride and not know what will be on the other side of the hill. But always remember, you are not on this ride alone.

We are there with you.

Kathy, grandma to Audrey, 3 yearsbambinojoey wrote:

Hello, my name is Roseanna and our 7 month old son, Joey, was just diagnosed with Mitochondrial Disease (Complex I & II Deficiency). My husband and I are completely numb and still in shock from hearing this. Our neurologist doesn't have alot of answers as to what lies ahead for Joey. All we know is that he has hard to control seizures, he cannot hold his head up or sit up and sleeps 18 hours out of the day. We are waiting for an appointment to go see an specialist in Atlanta. If anyone can shed some light as to what we might expect I would be so grateful. Currently, Joey takes Phenobarbital, Trileptal, Zonegran, Keppra, Zantac, B-6, Q-10, Biotin and Carnitine. He is 19 pounds and is 28" long. I have no idea what a Complex deficiency is. If you can offer any advice, thank

you.RoseannaPlease contact mito-owner with any problems or questions.