Re: Weakness after illness

[Guest guest]

Dear Kim,

You said has NARP and she is 10. Can you tell me what mutation she

has and what% mutation she has. The reason I am interested in knowing is

that my 2 girls have NARP with 90%mtation at T8993C. My older one died at

age 8 and a half (Samya) and Leanna is now 7 with the same. My daughter went

undiagnosed until her death and the doctors could never explain why she was

misdiagnosed except to say that she looked " too well " for them to ever

consider mito at all but when she got sick, she went fast. She looked very

good and functioned well. If you go on her website , you can see how well

in my story. Once we found out how serious her disease was, we still do not

know why Leanna is also doing so well. But do not be fooled, in December she

had a crisis where she quickly lost her skills and gave us a reality check.

I am so curious as to how many children that have the mutation as serious as

my girls do as well. I honestly have not found so far any child that is as

well as they were for so long. This is a blessing and yet very scary for me.

As for your initial question ( I am sorry for side tracking), the same

exact scenario has happened with both my girls with NARP and I have no idea

why. Samya had only one crisis (looking back we can call it that) when she

was 4 where she was very sick with a high fever for a week. Sure enough, as

she recovered fully from it, we thought all was well and then she got weaker

and weaker, developed ataxia and lost a lot of skills. It took her a long

time and therapy to recover and yet some skills she never gained back. The

second crisis happened when she was 8 and a half and that was the one that

took her life. She had a mild fever , recovered fully and 2 days later

developed ataxia. From then all it all went down hill and less than 2 months

later she was dead. Only the second crisis in her life and she died. The

weird thing to me is why severe stomach flu's and other worse illnesses

before did not cause this and yet a small one did. There never ever seemed

to be any rhyme or reason as to why one illness did not cause a crisis and

why one did. I can think of many previous illnesses in her life (AND she had

many) that logically should have killed her but did not like 7 days of

massive vomiting and diarrhea and she was fine.

The same for Leanna. She had her first crisis at age 4 after

mononucleosis. She recovered fully after about 4 weeks with mono and 5 days

later, could not walk. It took months of therapy for her to recover . Back

then they did not know she had mito and called it " encephalitis " because an

MRI showed inflammation in the basal ganglia. Now it makes perfect sense to

us. Her second crisis was this past December following a sinus infection and

she fully recovered only to slip downhill for weeks, unable to walk, hardly

talk or eat. She recovered and lost lots of skills. This disease is so EVIL.

I have no idea which sickness will cause a crisis and which crisis will

cause her death. All I know is that it will happen like it did with my

precious Samya. Nothing is more frustrating in the world for a parent than

to watch an innocent child lose their skills overnight after working so hard

their entire life to learn things. Please let me know how is doing

over all. Is she g-tubed, wheelchair bound etc or not. Good news for me only

gives some hope for Leanna's future. So far, all I get is bad news and I am

desperate to find a child that is doing well that is older than mine.

God bless,

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

Weakness after illness

Hi members,

I have a ten yr. old daughter, Nichole, who has NARP mito. I am

nursing her back to health after recently having a bacterial

infection in her respiatory tract.

I find that after I get her recovered from the illness, usually

by meds in a short amount of time, that she continues to get weaker

and weaker everyday physically.

After almost three days of being recovered from the illness I am

watching her steadily loose ground. Today she can barely walk with

assistance and she is also having a hard time keeping her eyes open.

I guess what I'm asking is, I don't understand why she continues

to loose ground everyday after being recovered from the illness.

Throughout her ten years this has been a steady pattern with her.

Have any of you experienced this with your children?

Thanks,

Kim

Please contact mito-owner with any problems or questions.

[Guest guest]

We get this alot with Grace. For her Dr. Cohen calls these episodes "brown outs". I have heard of them called many things, including "crashes" or "crisis". Basicly they happen because the body uses so much energy getting better, for a time afterwords the body is functioning on very little energy. (Much like an electrical brown out.) With Grace we have had these episodes last anywhere from a few days upwards to two months following an illness/ or major body stress. Dr. Cohen reccomended that we did a MRI following her first "big one", thankfully everything was fine. Best wishes.

[Guest guest]

Sheldon doesn't usually get that weak but he seems to lose skills

after an illness.

Hi members,

I have a ten yr. old daughter, Nichole, who

has NARP mito. I am

nursing her back to health after recently having a bacterial

infection in her respiatory tract.

I find that after I get her recovered from

the illness, usually

by meds in a short amount of time, that she continues to get

weaker

and weaker everyday physically.

After almost three days of being recovered

from the illness I am

watching her steadily loose ground. Today she can barely walk

with

assistance and she is also having a hard time keeping her eyes

open.

I guess what I'm asking is, I don't

understand why she continues

to loose ground everyday after being recovered from the

illness.

Throughout her ten years this has been a steady pattern with

her.

Have any of you experienced this with your children?

Thanks,

Kim

Please contact mito-owner with any problems or

questions.

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[Guest guest]

this was our first hint of trouble with brandon... in January, he

got a viral infection that lasted 3 days. he recovered, however

afterwards he slowly lost his strength, until 2 weeks later he

actually got admitted to hospital... within 3 days of his hospital

stay he could barely lift his head anymore, much less walk. it was

so scary, but afterwards he bounced back relatively well...

It took them 6 months to start considering mito, but at the time

they told me it was 'post infectious cerebellitis' (basically the

cerebellum gets irritated) which was really scary but ultimately

harmless... in that everyone almost always recovers from it.

I dont know if this is still what they believe happened to him, as

there are other findings on his MRI which indicate basal ganglia

involvement (i dont know what any of this means btw), but i do know

that it was a very similar situation to what you describe in your

daughter... and very frightning!

how long does it generally take your daughter to recover?

> Hi members,

> I have a ten yr. old daughter, Nichole, who has NARP mito. I

am

> nursing her back to health after recently having a bacterial

> infection in her respiatory tract.

> I find that after I get her recovered from the illness,

usually

> by meds in a short amount of time, that she continues to get

weaker

> and weaker everyday physically.

> After almost three days of being recovered from the illness I

am

> watching her steadily loose ground. Today she can barely walk

with

> assistance and she is also having a hard time keeping her eyes

open.

> I guess what I'm asking is, I don't understand why she

continues

> to loose ground everyday after being recovered from the illness.

> Throughout her ten years this has been a steady pattern with her.

> Have any of you experienced this with your children?

> Thanks,

> Kim