please help/Question RE:leg pain

[Guest guest]

I have an issue that I need help with. Samya, who went

undiagnosed with mito

for 8 years always had something unusual happen. Today, Leanna experienced it

for the first time. I remember, it happened for the first time in kindergarten

with Samya. I got a call from her school that she could not walk because her

legs hurt and the P. E. teacher carried her. I, of course, not having a clue ,

took her to her pediatrition. She could not find anything wrong with her, and

Samya was fine after a couple of hours. This was the beginning of many episodes

similar in her life. We would be somewhere, ansd out of the blue she would

claim that he rlegs hurt, felt “numb” and like jello. She could not

walk. WE started to think it was for attention or pure laziness to get out of

things she did not like. Sometimes, she would be back to normal in les than 10

minutes, sometimes more. Now that I know she had such a complicated disease, I

know for a fact that she never lied, and my heart aches over not believing her.

Does anyone have a clue what this is, why it happens and what to do when it

does happen? In case it helps, my girls have the T8993C mutation with a 90%

mutation/ Leigh’s.

I was just thinking a few days ago that Leanna has

never had this happen to her, At least not yet. Well, lucky me, it happenend

today. I got a call from the school telling me that she kept falling and could

not walk. Leanna told them she was dizzy. I went to pick her up, and she

brought back bad memories of Samya’s episodes by the way she was walking.

I do not think she really understand the difference between dizziness and

inability to stand from leg pain. She said the pain was under her knees. I took

her home and gave her a nap. She did not fight the nap, which for Leanna is

unusual. She does not like to nap, and only does so when very sick. She slept

for about 2 hrs and woke up feeling better. She is walking better now. The only

unusual thing I thought of was that this morning I had to wake her up at 7 a.m.

for school. For her, that is unusual. She is usually up before 6 a.m. even with

lots of energy. Maybe her body is struggling some days more than others and her

not wanting to wake up shows it. Maybe, next time I should let her wake up on

her own, and who cares if she is late to school. It was weird for me because

she has not been sick and has had lots of unusual energy lately, almost too

much. I wonder if it just catches up to them suddenly.

Any advice, experience , and input is greatly

appreciated. Whils she was napping , I started having severe anxiety and

thinking all the horrible thoughts like “is this the beginning of the end”

etc, and was so relieved when she walked out of bed herself. When I brought her

home from school, she could not take a step on her own,

Thanks a lot everyone,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970