please help/Question RE:leg pain

[Guest guest]

Both my daughters with suspected mito have periods of sore legs before they experience an episode of cyclic vomiting. They would also feel better after a sleep but remain fatigued for several days.

Have you tried giving a high energy drink when this happens. One that contains high amounts of caffeine. For example 'Mountain Dew" or 'Ikon" or 'Red Bull" works really well with my daughter. In fact after drinking part of a can of 'Red Bull' my 10 year old "-Kay" can walk to the toilet by herself, before the drink she needs help to walk even help to hold her head up to vomit.

The high energy drink containing caffeine was a recommendation from Dr Boles.

-Kay also takes vitamins and minerals daily prescribed for her by a naturopath which I believe is the equivalent to the "mito cocktail" that you take in America.

We live in New-Zealand and mito disorders are something so new here that the Doctor's don't even try to understand let alone treat them. As for the 'mito cocktail'. No one has even heard of it here, but I do believe that it has made a difference with my daughter.

.

please help/Question RE:leg pain

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

Please contact mito-owner with any problems or questions.

[Guest guest]

Both my daughters with suspected mito have periods of sore legs before they experience an episode of cyclic vomiting. They would also feel better after a sleep but remain fatigued for several days.

Have you tried giving a high energy drink when this happens. One that contains high amounts of caffeine. For example 'Mountain Dew" or 'Ikon" or 'Red Bull" works really well with my daughter. In fact after drinking part of a can of 'Red Bull' my 10 year old "-Kay" can walk to the toilet by herself, before the drink she needs help to walk even help to hold her head up to vomit.

The high energy drink containing caffeine was a recommendation from Dr Boles.

-Kay also takes vitamins and minerals daily prescribed for her by a naturopath which I believe is the equivalent to the "mito cocktail" that you take in America.

We live in New-Zealand and mito disorders are something so new here that the Doctor's don't even try to understand let alone treat them. As for the 'mito cocktail'. No one has even heard of it here, but I do believe that it has made a difference with my daughter.

.

please help/Question RE:leg pain

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

Please contact mito-owner with any problems or questions.

[Guest guest]

Both my daughters with suspected mito have periods of sore legs before they experience an episode of cyclic vomiting. They would also feel better after a sleep but remain fatigued for several days.

Have you tried giving a high energy drink when this happens. One that contains high amounts of caffeine. For example 'Mountain Dew" or 'Ikon" or 'Red Bull" works really well with my daughter. In fact after drinking part of a can of 'Red Bull' my 10 year old "-Kay" can walk to the toilet by herself, before the drink she needs help to walk even help to hold her head up to vomit.

The high energy drink containing caffeine was a recommendation from Dr Boles.

-Kay also takes vitamins and minerals daily prescribed for her by a naturopath which I believe is the equivalent to the "mito cocktail" that you take in America.

We live in New-Zealand and mito disorders are something so new here that the Doctor's don't even try to understand let alone treat them. As for the 'mito cocktail'. No one has even heard of it here, but I do believe that it has made a difference with my daughter.

.

please help/Question RE:leg pain

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

Please contact mito-owner with any problems or questions.

[Guest guest]

I really have no advice, sorry. I am just writing to let you know I will keep her in my prayers. Best wishes for your family.

[Guest guest]

I really have no advice, sorry. I am just writing to let you know I will keep her in my prayers. Best wishes for your family.

[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

[Guest guest]

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.

Suhad, I see this a lot with Chelsea. She is very prone to lethargy and has limited energy anyway, but sometimes she will go in streaks where she will have more energy than her usual, she will hardly nap, wake up on her own, and be very vocal. Then she will have days in a row where she sleeps more than usual, is hard to wake up, and barely makes any noise. I am not sure what changes from one day to the next.

As for the leg pain, I am sure you will get many great responses. I am not sure, but 2 possiblities could be neuropathy or lactic acidosis. Neuropathy will cause a burning/tingling pain like when circulation is cut off. Lactic acidosis will probably be more of an achy/flulike pain. If the leg pain is happening with exercise or exertion, lactic acid may be the issue, which is a natural byproduct of muscle exertion.

Don't beat yourself up about not believing Samya. You took her to the dr when she complained and was told it was nothing, what else were you supoosed to believe? We all have "what if's" here, but in the end, there is nothing to do but learn and move on. You are a great source of strength, and your love for your daughters is very obvious. You did everything you were supposed to do and more! You are a great mom, Leanna and Samya couln't have asked for better! I sure hope Leanna feels better soon!

e, Chelsea's mom(nonspecific mito)