new to group

[Guest guest]

Hi and welcome to our group. Before I address the RSS issue, please

know how much your efforts and courage in Iraq are appreciated

here. There is no way for me to know how difficult it truly is, but

from what I have learned and read about, you are all heroes in my

book.

That being said, can you tell me more about your daughter with RSS?

What characteristics does she have? Does she have health-related

issues, too? Have you checked out the Magic Foundation website at

www.magicfoundation.org? That is singly the best resource that I

know of. Then again, you have all of us now and we will help you as

best we can.

I know it is hard enough to be stationed overseas, let alone have a

daughter with special needs, and not be able to take care of things

as you would like. Perhaps if you could fill me/us in, then we can

help you understand RSS a bit better and help you over some of the

humps. I will tell you, too, that there are several families on

this listserve who have twins and only one has RSS. I don't know

what it means, but sometimes just knowing that can help you feel a

bit more comfortable.

By the way, I am the mom of two teens - my 15 year old son Maxwell

has RSS. He is a bit more complicated that most of the kids on this

site, but he has led the way for so many. Currently he is back in

the local school district after being in a school for kids with

learning difficulties - paid for at our own expense. He is quite

happy in 9th grade and in the high school. His peers seem to like

him or else they just don't talk to him. At least he is not picked

on. Most of the girls think he is " so cute. " It's funny because

Max could not care less.

I look forward to hearing from you. My private email address is

magicrss @hotmail.com. (Leave out the space.) You may contact me

privately at any time, too.

Jodi Z.

One of at least 4 Jodi's in this group

[Guest guest]

Thanks for the Welcome! My husband will be posting as well as myself

as often as we can. He is in Iraq and everyone's prayers and support

is appreciated. We are a member of the Magic Foundation. We have

found out from In-ja that (RSS) is 20lbs now and is

32lbs. She could not remember the name of the Foundation but we found

it easily online. She did also let us know about groups we can get

involved in but The Yahoo Groups we found out about by reading the

newsletter. Alot of the information I will be looking up for him

because his time online as well as calling home depends on his

mission there. Because of the time difference his days are our

nights. So I get alot of late night phone calls which I don't mind at

all!!!! Weekends is the only time he gets to call the twins...and

even that is limited with restrictions as it seems! We have three

other children together. A 7 yr old boy, a 5 yr old boy, and our new

addition, a 9 month girl. Our concern was having another child with

RSS, and having seizures. Glad to say that she is perfectly fine!!!

GOD BLESS!

I for one, worry about the twins just because spending so much

time with them and caring for them you can't help but love them. We

are a family! We just want In-ja to see that we are really just

trying to stay active in our daughters life and that we have alot of

love to give them. We miss them and want the BEST for them. They will

always have her as their mother and my husband as their father and as

long as we are married which will be forever.....me, as their step

mom..... We are committed to each other and to our family.

What can I do but stand by my husband and be there for him during

this time? He misses his daughters so much! I miss them as well!

> Hi and welcome to our group. Before I address the RSS issue,

please

> know how much your efforts and courage in Iraq are appreciated

> here. There is no way for me to know how difficult it truly is,

but

> from what I have learned and read about, you are all heroes in my

> book.

>

> That being said, can you tell me more about your daughter with

RSS?

> What characteristics does she have? Does she have health-related

> issues, too? Have you checked out the Magic Foundation website at

> www.magicfoundation.org? That is singly the best resource that I

> know of. Then again, you have all of us now and we will help you

as

> best we can.

>

> I know it is hard enough to be stationed overseas, let alone have a

> daughter with special needs, and not be able to take care of things

> as you would like. Perhaps if you could fill me/us in, then we can

> help you understand RSS a bit better and help you over some of the

> humps. I will tell you, too, that there are several families on

> this listserve who have twins and only one has RSS. I don't know

> what it means, but sometimes just knowing that can help you feel a

> bit more comfortable.

>

> By the way, I am the mom of two teens - my 15 year old son Maxwell

> has RSS. He is a bit more complicated that most of the kids on

this

> site, but he has led the way for so many. Currently he is back in

> the local school district after being in a school for kids with

> learning difficulties - paid for at our own expense. He is quite

> happy in 9th grade and in the high school. His peers seem to like

> him or else they just don't talk to him. At least he is not

picked

> on. Most of the girls think he is " so cute. " It's funny because

> Max could not care less.

>

> I look forward to hearing from you. My private email address is

> magicrss @hotmail.com. (Leave out the space.) You may contact me

> privately at any time, too.

>

> Jodi Z.

> One of at least 4 Jodi's in this group

[Guest guest]

Hi my name is Lori. I'm new to this group. I have three children. Two

daughters ages 5,and 8yrs. My son is 16yrs old, he has complex one

deficiency, and below the 5% in comlex 2,3,and 4. We live in Boston,

but was diagnosed by a muscle biopsy in Atlanta, Georgia at the

age of two. My question is has anyone heard of I.V gammaglobulin

being used as a treatment for mito patients? My son was on I.V. gamma

for 15yrs for a immune deficiency,he has not been on it for the last

year because his immune levels were close to normal. A friend of mine

said she heard they are using gamma for a mito treatment. We don't

have an appt. with our mito Dr. until Sept. so I figured I'd throw

this question out to see if anyone has heard of this.

Any info would be greatly appreciated,

Lori

[Guest guest]

Lori, We just were at Mayo seeing Dr. Whiteman and he had mentioned

that some kids do become stronger with IVIG therapy and it is

something the mito docs are starting to look into. Our son Wyatt's,

age 5, immune system is weaking and when I mentioned I wasn't

convinced on doing IVIG yet he mentioned the strength connection

with mito. Maybe they will start seriously looking into the

benefits of IVIG and mito some day. I know quite a few people on

the board whose children do IVIG so maybe they can be of more help.

Geri-Anne and Wyatt, Complex I-

-- In Mito , " loribradlee "

wrote:

> Hi my name is Lori. I'm new to this group. I have three children.

Two

> daughters ages 5,and 8yrs. My son is 16yrs old, he has complex one

> deficiency, and below the 5% in comlex 2,3,and 4. We live in

Boston,

> but was diagnosed by a muscle biopsy in Atlanta, Georgia at

the

> age of two. My question is has anyone heard of I.V gammaglobulin

> being used as a treatment for mito patients? My son was on I.V.

gamma

> for 15yrs for a immune deficiency,he has not been on it for the

last

> year because his immune levels were close to normal. A friend of

mine

> said she heard they are using gamma for a mito treatment. We don't

> have an appt. with our mito Dr. until Sept. so I figured I'd throw

> this question out to see if anyone has heard of this.

>

> Any info would be greatly appreciated,

>

> Lori