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We fit here!

Posted: August 18th 2008

tracey

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We've been on the diagnostic train for almost 5 years now.  Mito was first mentioned by an ER doc when my guy was only 9 months old.  It was poopoo'd by his other docs because he wasn't "sick enough" to have mito.   He's just turned 6 years old and we're now finally closer to a dx.

I can't wait to talk to other parents who are travelling this road with us.

Tracey

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~Tracey~ 

Hi Tracey, My son's

Submitted by dianelanglamort... on Mon, 08/25/2008 - 1:13pm.

Hi Tracey, My son's genetic specialist also brought up mito problems, and poo poo'ed for the same reason, not sick enough to be mito, that was 18 months ago. We just did a muscle biopsy, just 4 weeks ago, and we are waiting for the results. We have already done blood tests, EMG/ncs tests, and cardiology all are good. I am also in the mito yahoo group, and I am glad this forum is here! Diane

Hi Diane! We haven't done

Submitted by tracey on Mon, 08/25/2008 - 9:05pm.

Hi Diane! We haven't done the muscle bx yet~ we did do skin in July. It's just a very frustrating path to follow!
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~Tracey~ 

Tina_EvesMum's picture

Who is the key Medic in this

Submitted by Tina_EvesMum on Tue, 08/26/2008 - 6:36pm.

Who is the key Medic in this search for answers? We were originally under an ENT specialsist as Eve presented with severe breathing issues! Her tonsils and adenoids came out and that improved the breathing, but the MRI has thrown up this Mito Issue! We are now reffered to a Neurologist...being followed by ENT and have just had an Ophtalmology appointment...I just dont know who to hope wil be able to guide us through the search for answers...and answers to what questions...how do you know what to ask? Hugs
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Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy.

I do not know what the future holds but I am glad I know who holds the future!

MotherWhimsey's picture

we have two docs that are in

Submitted by MotherWhimsey on Tue, 08/26/2008 - 7:36pm.

we have two docs that are in charge of the whole Mito thing. One is a neurometabolic neurologist and the other is a neuromuscular neurologist. But they don't mess around much with other people's specialties. So if we've got a heart issue/question, he'll just tell us to ask cardio. same with any other question that falls under a different specialty. Even though Linden's breathing issues are brain related, pulmonology is still in charge of those.
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Courey mom to Aniyah, 4.5 and Linden, 20 mos. Linden has Mito complex III deficiency with slight deficiencies in complexes I and II. He is o2 and tube dependant.

www.lindenberriesandrosebuds.blogspot.com

Anthonys mom's picture

We came upon a Neurologist

Submitted by Anthonys mom on Fri, 09/05/2008 - 11:12pm.

We came upon a Neurologist that lead us in the right direction. For the months our pediatrician told us nothing was wrong. Even thought he couldn't even hold his head up, not was not gaining weight like he should have been and ending up in the ER because he stopped breathing. Now, we mostly see a Metabolic Doctor who moniters him for the Mito and other specialist for specific problems(developmental, gasto.)There are GREAT doctors in Atlanta and Cleveland who are more that willing to help. All you need is a doctor in your area who is willing to work with them.

I really do feel for you

Submitted by khawlah on Wed, 02/11/2009 - 9:04pm.

I really do feel for you having been at this for 5 years. My son had a muscle biopsy and it was very abnormal. The docs sent us to see the Drs. @ Columbia to look into the exact gene defeat. We just got back from that meeting and they told me my son looks way to good to have any mito disorder! They felt the muscle biopsy might have been mishandled. They will redo the biopsy and do some other tests at the same time so I guess I will go back to waiting! Just when I thought at least that part was over! That being said i have only been at this about a year-5 years seems unbearable. I sincerely hope things will move ahead for you soon.