Re: New here, looking for Mom's of pediatric Lupus patients

January 7, 2005

Crystal,

I can't think of any parents of young pediatric patients on this

list, but the owners (a and ) can better answer that. There

was a lady with an elementary age son that had RA quite bad. For the

life of me I can't remember her name and haven't seen her post in a

really long time. Again a and would know if she is still on

the list, a lurker or what. If she is on the list she might be a good

one to guide you to others who have young children with auto immune

diseases.

a and , please fill in the blanks for me. I hope you remember

who I'm talking about.

Crystal, good luck and best wishes in your search for other moms like

you. It is very painful to watch your child have an illness that

leaves you feeling hopeless and helpless. I hope Mackensie does well.

I love her name!

Elaine

>

> Hi, I'm Crystal and my daughter Mackenzie, age 4, was diagnosed

with

> Lupus this week. We have known for about a month that the blood

tests

> pointed to Lupus, but we just got the offical diagnosis this week.

I

> am trying to find some parents of pediatric lupus patients, but I'm

> not having much luck. I have been told by both her dotors that

Lupus

> is rare under the age of five, but do know that there are other

> parents out there in the same boat as us. I would really like

someone

> I can talk to , so we can learn more about this disease and what to

> expect. If anyone here has a small child with Lupus, I would love

to

> talk to you.Or if anyone knows of a group for children with Lupus,

I

> would really appreciate the help. Thanks in advance.

>

> Crystal and Mac

January 7, 2005