Update on Luke (Aseanth/Zipporrah's brother)

[Guest guest]

We had to take Luke to the doc's for a sinus infection today and talked to her about all of his symptoms. After discussing everything with her she examined him and agreed that he seems to have had a stroke episode. She can see his mouth pulling to the left. We have been noticing that he only uses the right side of his mouth to talk for the past month or so. We have been putting the pieces together and this is the picture: He started to go downhill about two years ago when we put him in a private school for the first time. He needed to get up early for the first time ever (We home-schooled before this.) and he started having problems with hypoglycemia, loss of feeling temperatures (except on his spine), lack of pain in the extremities, numbness and tingling in his left side, bouts of weakness and collapsing legs, etc. Then last winter Luke lost lots of sleep due to needing to get up even earlier to go to driver's ed classes. He proceeded to get pertussis (whooping cough) in January and then he started having bad migraines and vision problems. At the same time he was sleeping constantly. He would come home and sleep for hours. One time he came home and sleep from early evening until the next day at 4 PM without waking. Imagine his shock when he woke up! He also fell down the stairs after his legs collapsed and he thought he just must have been tired. We were concerned but after noticing the inability to talk with the left side of his mouth, we were awakened to the absolute reality that he had definitely had a stroke episode. Hy hubby and I are still trying to grasp the meaning of this and trying to help Luke to see the importance of taking it easy and to rest when he needs to and yet not terrify him in the process. I think he is dealing with it ok, but know he is worried as well. The labs Dr. Whiteman did looked good (he wasn't ill though!) and he was so happy. Now, he knows differently and faces more testing. We will see the neurologist in June or July and probably do brain scans and nerve testing. I want to talk to Dr. Whiteman about starting him on some vitamins, COQ10, and Carnitine as well. I know from experience that if he doesn't take care of himself, he will get sick again. Thanks for letting me ramble guys. Too much going on lately. Just a note, Asenath's asthma/wheezing, coughing issues caused another small stroke episode hitting her legs last night. She is very ataxic and wobbly. She always gets hit when her oxygen is lower than 96% it seems. Thank the Lord it was a small one again rather than a large one! Thank you everyone for your prayers. Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... Zipporrah (7 mon.) Mito, SLE's, sensory issues, G-tube, asthma, mild tracheomalacia, tracheal ring, oxygen use, disautonomia issues... Luke (16 next Thursday) all the above plus more Leah (13) (soft signs), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & Marquis (2)Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla-I can't imagine what you must be feeling now. Your are in my prayers.

Blessings,

[Guest guest]

Darla,

I am sooo sorry that Luke has been so affected too. How scary it

must be for him. I know my oldest (Drew, 13) has to be scared after

watching what his sister and I have gone through. He has shown some

hypoglycemia, dysautonomia and exhaustion. It scares me so I know it

must scare him.

My prayers are with you and your whole family to find the answers

to this mess. Why haven't the docs put all of your kids on the mito

meds? I would think since they are mostly supplements and your

family history that they would rather be pro-active. Just wandering.

I know we are seeing Dr. Natowicz (Cohen's partner ) in September

for my other two and I am demanding treatment. Won't he be happy?

How are you feeling? You must be so tired and frightened. You

probably don't even have time to be afraid, huh? Try to take your

own advice and take it easy at least as much as you can!

Dawn