Re: Cindy (yours and my son)

December 5, 2004

Our boys sound a lot alike! Luke deals with many of the same things as

your son deal with, but we haven't been able to get any abnormal lab results

" that mean anything anyway. "

I noticed you mentioning the tremor and that stood out to me because

both Asenath and Luke have the same thing. The docs have said it seems to

be totally neurological in Asenath and it seems to be the same for Luke.

Luke deals with hypoglycemia symptoms although I haven't caught any

true low numbers. He gets very shaky, overheated, faint, nauseous, etc. I

haven't tried to get a norm from him as he doesn't really want to and I

haven't pushed it " just yet. "

Luke doesn't eat dairy much either as he either doesn't like it or it

gives him a stomach ache. He eats very similar to your son with lots of

meat, vegetable, not as much fruit or nuts though. He tries to eat pretty

healthy and isn't one to snack on junk food. He is really into keeping fit

as he is a dancer and head dance teacher at a local studio. He lifts 20 lb.

weights, does tons of push ups and sit ups and constantly dances and keeps

active. The only thing with that is, like your son, he wears down much

quicker than he used to and after going all out (which he almost always

tries to do), he crashes. He has needed increased amounts of sleep and will

sleep into the afternoon sometimes when he doesn't have to go to work. He

is home-schooling this year as the past two years really wore him down going

to a private school. When he does go all out, he gets so exhausted and worn

down that he will shake terribly, be wobbly and ill, his eye close to almost

squints, he gets terrible asthma, and it leads to migraines and stroke

activity at times. We have also noticed that even mild depression often

leads to his migraines and strokes. I am not sure it the depression comes

first or if he is so worn down that it makes him have the

exhausted/depressed side effects. Thankfully, over all he is very cheerful

and doesn't battle depression that we have to worry about. I think when he

is so worn down it just gets to him because he doesn't want Mito to rule his

life like he sees it doing to his sisters. He wants to fight it.

The thing that really bothers me is how several people have approached

me this week about how ill he looks lately. He has dark circles under his

eyes, is VERY pale, has lost about 20 lbs. in the last 6 months, and is much

more fatigued. Dr. Whiteman is concerned and is thinking about putting him

on the cocktail to see if it helps and I plan to request it this week. The

stroke activity has affected mostly sensory issues, but is also affecting

speech, and his hands and eyes at times. I keep praying he won't get any

worse.

I am glad your son is able to pace himself and keep doing his favorite

activities. Luke keeps doing his too, but it is getting harder it seems.

Thank you for writing back.

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)

Re: My mito kid goes to the ROTC Ball!

I was wondering if you could share more about your son's symptoms

since

he " looks " great and it appears he must be doing well in some areas to be

able to excel in his platoon. My son Luke, also 16, excels in different

areas and yet has really been struggling in other areas. I would love to

hear more about him to see how much in common they are.

December 5, 2004