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

January 7, 2005

Welcome, Crystal! So sorry to hear about Mackenzie's lupus.

Elaine, you are thinking of and . I haven't heard from

in a looooooong time.

Here are some links to info on pediatric lupus support groups:

http://www.icq.com/groups/group_details.php?gid=1511311

http://www.nemours.org/internet?url=no/news/releases/2002/020409_lupus_support.h\

tml

Here are some links to info on pediatric lupus:

http://www.goldscout.com/

http://www.goldscout.com/page2.html

http://www.lupuscanada.org/en/archive/pediatric_lupus.html

There is information on pediatric lupus and support here:

http://www.kidlupus.org/HTML/links.html

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

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

patients

>

> 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