Re: nervous abt unaffected sibling - cylic nausea?

[Guest guest]

I would let your son have Gatorade but not

other items with sugar and caffeine – but, as always when in doubt,

contact your physician.

Sue Ann

nervous abt

" unaffected " sibling - cylic nausea?

Hi all,

I'm writing b/c I'm worried about my

oldest son, Sam, 8 yrs. old. My almost four year old son, Asher, has mito,

Complex III defect and possible/partial complex I defect (detected through

fresh muscle biopsy).

Sam has had normal development all

his life and is quite advanced intellectually (more than me, that's for sure!).

He does have a primary immune deficiency that was diagnosed at age 3 following

chronic sinus infections - he was tested b/c we already knew that I have a

primary immune deficiency for which I'm treated with gammaglobulin. Anyhow, Sam

has an IgA def and an IgG subclass deficiency, but, regardless, he's been

pretty healthy (does not get gammaglobulin at this point) for the past 2 years.

The docs have felt his body was compensating. No drs have suggested his primary

immune deficiency as being mito related - not even the mito experts - even when

I ask.

Anyhow, this just hit me tonight.

For the past 6 out of 7 nights, Sam has become incredibly nauseous at about

7:00 at night coupled with extreme fatigue. At first I thought and still think

that, maybe, he was dehydrated. We are on vacation in Colorado so I assumed it

was the altitude, dehydration, and that he was not resting that much. He's

absolutely fine and normal during the day. Not sick at all. Today, we made

sure he drank A LOT and so did he. He did not exert himself physically. In

addition, we've not been in the mountains, so, altho the altitude is quite a

bit higher than Florida, it's not the typical high altitudes that would

produce altitude sickness that keeps occurring all week.

I'm just sharing this b/c I'm

worried and need to write about it. I've been partly able to cope with the mito

disease in my younger son by believing that my older son is " fine " .

It scares me that Sam is having this trouble.

Also, do I remember correctly that

drinks with caffeine and sugar are helpful at these times?

Thanks for reading,

Anne R

Please

contact mito-owner with any problems or questions.

[Guest guest]

hello

i am so sorry that you feel so scared and i know how it is . i had a daughter who died of mito this spring. now i have only one child who is now almost 10 . she is perfectly healthy and intellegnet as you said about sam. but she has a few headaches and sometimes is lethargic without any reason. i have the same fears as you have said.

i would suggest what i do (well it works for me ), i have started to enjoy every second and have actually , i mean literally everything to my GOD . nothing can change out fate but him. so y worry. if kids are sick get them treated and be happy that you have kids even if they have high chances of a disorder. by best friend is childless and i know what a pain she carries in her heart, just to get pregannt and feel it is something not to mention how your child looks like.

i wish i can do something

ayeshaAReckling@... wrote:

Hi all,

I'm writing b/c I'm worried about my oldest son, Sam, 8 yrs. old. My almost four year old son, Asher, has mito, Complex III defect and possible/partial complex I defect (detected through fresh muscle biopsy).

Sam has had normal development all his life and is quite advanced intellectually (more than me, that's for sure!). He does have a primary immune deficiency that was diagnosed at age 3 following chronic sinus infections - he was tested b/c we already knew that I have a primary immune deficiency for which I'm treated with gammaglobulin. Anyhow, Sam has an IgA def and an IgG subclass deficiency, but, regardless, he's been pretty healthy (does not get gammaglobulin at this point) for the past 2 years. The docs have felt his body was compensating. No drs have suggested his primary immune deficiency as being mito related - not even the mito experts - even when I ask.

Anyhow, this just hit me tonight. For the past 6 out of 7 nights, Sam has become incredibly nauseous at about 7:00 at night coupled with extreme fatigue. At first I thought and still think that, maybe, he was dehydrated. We are on vacation in Colorado so I assumed it was the altitude, dehydration, and that he was not resting that much. He's absolutely fine and normal during the day. Not sick at all. Today, we made sure he drank A LOT and so did he. He did not exert himself physically. In addition, we've not been in the mountains, so, altho the altitude is quite a bit higher than Florida, it's not the typical high altitudes that would produce altitude sickness that keeps occurring all week.

I'm just sharing this b/c I'm worried and need to write about it. I've been partly able to cope with the mito disease in my younger son by believing that my older son is "fine". It scares me that Sam is having this trouble.

Also, do I remember correctly that drinks with caffeine and sugar are helpful at these times?

Thanks for reading,

Anne R

Please contact mito-owner with any problems or questions.

takecare,love.................... ayesha__________________________________________________

[Guest guest]

hello

i am so sorry that you feel so scared and i know how it is . i had a daughter who died of mito this spring. now i have only one child who is now almost 10 . she is perfectly healthy and intellegnet as you said about sam. but she has a few headaches and sometimes is lethargic without any reason. i have the same fears as you have said.

i would suggest what i do (well it works for me ), i have started to enjoy every second and have actually , i mean literally everything to my GOD . nothing can change out fate but him. so y worry. if kids are sick get them treated and be happy that you have kids even if they have high chances of a disorder. by best friend is childless and i know what a pain she carries in her heart, just to get pregannt and feel it is something not to mention how your child looks like.

i wish i can do something

ayeshaAReckling@... wrote:

Hi all,

I'm writing b/c I'm worried about my oldest son, Sam, 8 yrs. old. My almost four year old son, Asher, has mito, Complex III defect and possible/partial complex I defect (detected through fresh muscle biopsy).

Sam has had normal development all his life and is quite advanced intellectually (more than me, that's for sure!). He does have a primary immune deficiency that was diagnosed at age 3 following chronic sinus infections - he was tested b/c we already knew that I have a primary immune deficiency for which I'm treated with gammaglobulin. Anyhow, Sam has an IgA def and an IgG subclass deficiency, but, regardless, he's been pretty healthy (does not get gammaglobulin at this point) for the past 2 years. The docs have felt his body was compensating. No drs have suggested his primary immune deficiency as being mito related - not even the mito experts - even when I ask.

Anyhow, this just hit me tonight. For the past 6 out of 7 nights, Sam has become incredibly nauseous at about 7:00 at night coupled with extreme fatigue. At first I thought and still think that, maybe, he was dehydrated. We are on vacation in Colorado so I assumed it was the altitude, dehydration, and that he was not resting that much. He's absolutely fine and normal during the day. Not sick at all. Today, we made sure he drank A LOT and so did he. He did not exert himself physically. In addition, we've not been in the mountains, so, altho the altitude is quite a bit higher than Florida, it's not the typical high altitudes that would produce altitude sickness that keeps occurring all week.

I'm just sharing this b/c I'm worried and need to write about it. I've been partly able to cope with the mito disease in my younger son by believing that my older son is "fine". It scares me that Sam is having this trouble.

Also, do I remember correctly that drinks with caffeine and sugar are helpful at these times?

Thanks for reading,

Anne R

Please contact mito-owner with any problems or questions.

takecare,love.................... ayesha__________________________________________________