Re: Anne R.

[Guest guest]

I am sorry your son has been causing you concern. Isn't that like our

kids?? I have several kids with minor Mito symptoms that fatigue easily as

well. It can be unsettling to wonder what lies ahead for them and you find

yourself constantly second guessing whether you have tried hard enough to

seek medical care for them as they seem so much less affected than the

sibling with major Mito symptoms. In our case, we have taken three of our

other kids (excluding Asenath and Zipporrah) to see the geneticist and even

though the labs have been fine, I KNOW they still have issues and it

frustrates me to know they have issues and are not being treated for them.

Luke will actually be starting some of the cocktail soon as he has so many

issues, even though his labs look good.

You are definitely not alone in this area. Keep your chin up. If his

fatigue continues, especially in the late afternoon and evenings, it could

be muscle fatigue issues and is often typical of myself and my kids. As the

day goes on, I get weaker and more exhausted. When in a crises, I may be

able to get around early in the day, but later on am stuck on the couch.

Hope he doesn't continue to have problems in this area.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

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

>