Re:Dawn (yours and my son)

December 8, 2004

Darla,

I'll have to pay attention to Josh when he talks, I guess I never thought to watch him that close. One reason is because Josh "talks with his eyes" meaning every word he says he ephasizes with his eyes and I'm always drawn to that. We hava a wonderful neurologist right now, only problem is that when we go see her I forget the questions I have between appt. Right now it seems about every 6 months we have a visit. Have a great dat!

DawnDarla Klein wrote:

It's a mothers job to worry, you know. Even when there are healthy children in the home, moms worry about them. In our situation, we see everything and sometimes we see things that are not to be worried about and other times we see things that should be taken note of and discussed with the docs, even if they don't feel it's important. With Luke, I spoke to Dr. Whiteman, had him seen by him, did the labs, etc. and Dr. Whiteman wasn't really worried, but then with everything that keeps happening, he is now. With your son, when he slurs, do you also notice any tilting or pulling of his mouth to one side or the other? One day I was looking at him speaking and it hit me how he only spoke out of the right side of his mouth! The left just droops and doesn't move much still to

this day. I don't know how I missed it for so long, but then we look at Asenath's toddler pictures and see it now too. Hindsight... Don't ever feel bad for talking to the docs about your concerns. Don't let them make you think you are overreacting. We are dealing with hereditary issues that can be mild to severe and anywhere in between. And just because our kids may have Mito, it doesn't HAVE to get bad. There are many variations and often (not always) the older a person shows Mito, the better.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.orgDarla: mommy toAsenath (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.> >> >> > Please contact mito-owner with any problems or > > questions.> >> >> >

December 8, 2004

Darla,

I'll have to pay attention to Josh when he talks, I guess I never thought to watch him that close. One reason is because Josh "talks with his eyes" meaning every word he says he ephasizes with his eyes and I'm always drawn to that. We hava a wonderful neurologist right now, only problem is that when we go see her I forget the questions I have between appt. Right now it seems about every 6 months we have a visit. Have a great dat!

DawnDarla Klein wrote:

It's a mothers job to worry, you know. Even when there are healthy children in the home, moms worry about them. In our situation, we see everything and sometimes we see things that are not to be worried about and other times we see things that should be taken note of and discussed with the docs, even if they don't feel it's important. With Luke, I spoke to Dr. Whiteman, had him seen by him, did the labs, etc. and Dr. Whiteman wasn't really worried, but then with everything that keeps happening, he is now. With your son, when he slurs, do you also notice any tilting or pulling of his mouth to one side or the other? One day I was looking at him speaking and it hit me how he only spoke out of the right side of his mouth! The left just droops and doesn't move much still to

this day. I don't know how I missed it for so long, but then we look at Asenath's toddler pictures and see it now too. Hindsight... Don't ever feel bad for talking to the docs about your concerns. Don't let them make you think you are overreacting. We are dealing with hereditary issues that can be mild to severe and anywhere in between. And just because our kids may have Mito, it doesn't HAVE to get bad. There are many variations and often (not always) the older a person shows Mito, the better.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.orgDarla: mommy toAsenath (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.> >> >> > Please contact mito-owner with any problems or > > questions.> >> >> >

December 8, 2004

I have learned to keep a note pad by my desk in my bedroom that I jot notes

on when something I need to ask pops up in my head and then a couple days

before I go to see the docs I type the questions and updates on the girls'

issues so I have it in front of my eyes when I speak to them. I also make a

copy for the individual doctor(s) so they can read through it and then we

don't miss anything important. Dr. Whiteman especially likes this as it

helps to save time and makes sure I and he are aware of all issues. I

usually have separate sheets for both girls to make sure I don't mix them up

in my mind as well, since doc appointments can really cause some " puzzling "

moments where I get brain fog and can't seem to remember anything without

those papers! LOL

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.

> > >

> > > Please contact mito-owner with any problems or

> > > questions.

> > >

December 8, 2004