Re: New Here...Lots of Questions

[Guest guest]

Welcome to the group! A great place to start for answers to your questions would be the United Mitochondrial Disease Foundation website. www.umdf.org This site offers a great deal of info regarding this disease. I can answer only a couple of your questions but, am sure others can answer more. Again, welcome.

Do you see endocrinologists or geneticists for mito?

We see a geneticist. There are a handful around the country. If you let us know where you live, we could let you know who is the closest. We see Dr. Whiteman at Mayo Clinic in Rochester, MN.

Did your diagnosis start with testing of amino acids and urine organicacids? We are wondering how signifigance of these.

Yes, those tests are important. As well as lactate levels can be a major factor. There is a list of tests on the UMDF website that you may find helpful.What are the different Complexs? Are they levels of severity ordifferent types?

Again, check out the www.umdf.org website. It explains each complex in detail.

Does treatment help in any case? One doctor told me yes others havesaid no?

As you have probably heard, there is no cure for Mitochondrial Disorders (yet!). The main treatment is vitamins and co-factors. Treatment does help in some cases and other cases it does not.

Good luck on your search for finding a diagnosis. I'm glad you have found this group.

Kim - Mom to and Lindsey (2) Partial Complex I - seizures, myoclonus, hypotonia

Mason (4) Healthy

Delaney (6) Healthy

Please contact mito-owner with any problems or questions.

[Guest guest]

Just wanted to say welcome to the group. Kim gave you a lot of good

advice. I know the first couple of times I went to the UMDF website

I was overwhelmed and felt like I was unable to find the answers to

my questions. However it did give me a good starting point. I also

read a lot of the old posts. It gave me a chance to " meet " some of

the people in the group and to learn about some of their children's

symptoms. We also see Dr. Whiteman at Mayo and he told us when

dealing with Mito you need to always deal with the problem at hand.

So if your child has a virus take care of the virus, if your child

has an eye infection, treat the eye infection,etc. He stated to us

that with mito it is like being a diabetic or anyone with a chronic

condition. You can have many problems but as long as you treat them

and have long spells between illnesses you have a better chance of

controling the mito then the mito controling you. Not an exact

quote but that was the essence of it.

If the UMDF site does not answer your questions, or if you have

more, which I'm sure you will, we all do, just keep posting.

Geri-Anne and Wyatt, Complex I

> Hi!

>

> We have not received a diagnosis yet but are waiting for an

> appointment with the genetics department. When my son was born he

had

> a cleft palate, vomitted alot and had weird reactions to food. By

5

> months he started having seizures. We were told he probably had

> epilepsy but it wasn't related to anything else.

>

> Now, at 13 months he has been having seizures again and we found

that

> his pyruvate and valine were elevated.

>

> So, we have lots of questions and are trying to get a better

> understanding of these disorders.

>

> Do you see endocrinologists or geneticists for mito?

>

> Did your diagnosis start with testing of amino acids and urine

organic

> acids? We are wondering how signifigance of these.

>

> What are the different Complexs? Are they levels of severity or

> different types?

>

> Does treatment help in any case? One doctor told me yes others

have

> said no?

>

> Thanks! Any suggested reading would be appreciated as well.

[Guest guest]

Just wanted to say welcome to the group. Kim gave you a lot of good

advice. I know the first couple of times I went to the UMDF website

I was overwhelmed and felt like I was unable to find the answers to

my questions. However it did give me a good starting point. I also

read a lot of the old posts. It gave me a chance to " meet " some of

the people in the group and to learn about some of their children's

symptoms. We also see Dr. Whiteman at Mayo and he told us when

dealing with Mito you need to always deal with the problem at hand.

So if your child has a virus take care of the virus, if your child

has an eye infection, treat the eye infection,etc. He stated to us

that with mito it is like being a diabetic or anyone with a chronic

condition. You can have many problems but as long as you treat them

and have long spells between illnesses you have a better chance of

controling the mito then the mito controling you. Not an exact

quote but that was the essence of it.

If the UMDF site does not answer your questions, or if you have

more, which I'm sure you will, we all do, just keep posting.

Geri-Anne and Wyatt, Complex I

> Hi!

>

> We have not received a diagnosis yet but are waiting for an

> appointment with the genetics department. When my son was born he

had

> a cleft palate, vomitted alot and had weird reactions to food. By

5

> months he started having seizures. We were told he probably had

> epilepsy but it wasn't related to anything else.

>

> Now, at 13 months he has been having seizures again and we found

that

> his pyruvate and valine were elevated.

>

> So, we have lots of questions and are trying to get a better

> understanding of these disorders.

>

> Do you see endocrinologists or geneticists for mito?

>

> Did your diagnosis start with testing of amino acids and urine

organic

> acids? We are wondering how signifigance of these.

>

> What are the different Complexs? Are they levels of severity or

> different types?

>

> Does treatment help in any case? One doctor told me yes others

have

> said no?

>

> Thanks! Any suggested reading would be appreciated as well.