complex 1

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Complex 1

Hello,

       My Son Anthony was diagnosed in April with complex 1 and a carnitine def. He is only 2 and was wondering if anyone would like to share there story with us. I know Mito ranges but, I have so many unanswered questions. Not knowing what the future holds and not knowing what I can do to help him is so fustrating. He has days that all he wants to do is lay down and watch tv or he just lays down and plays. It is so hard to know if he is just being lazy or if he really doesn't  have the energy. I also have a 8 month old girl and they couldn't be any different when it comes to their energy. He also has this thirst he is always thirsty. We have had some test done but all have come back negitive. When I restrict his water he is just more tired. Doctors have no answers. I would love to hear from someone on how it is affecting them or their Child.   

                                                                      Sarah ( Anthony's Mom)

MotherWhimsey's picture

MotherWhimsey

11/24/2008

My son has complex I, II, and III. His I and II are milder than the complex III, so I don't know what affects what in him. As for the water thing, he has to have at least 41-43 oz of fluids a day to be okay. His body goes bonkers if he gets less. I've heard quite a few mito moms saying their kids need a lot of hydration. So just keep giving him fluids when he wants them! I've always wondered why it can make such a big difference.

Anthonys mom's picture

Anthonys mom

11/24/2008

He is G-tube feed and can eat some foods very little when he does. He recieves 40 total oz. thru the g-tube and want to drink at least 80 extra oz. The doctors say he should be fine with a total of 40. We have resticted him to 55 oz a day and he is so constipated. But they say he should be fine. What is a mom suppose to do?
Tina_EvesMum's picture

Tina_EvesMum

12/07/2008

Goodness Eve struggles bog time with fluids...if we give her too much she hypersalivates and then drowns in her own secretions. She has a maximum of 700mls aday often only 500 life is a balancing act! hugs