new member -- my son and milroy's disease

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new member -- my son and milroy's disease

Postby maryceady » Fri Jun 09, 2006 4:49 pm

hi all -- i'm so glad to know this site is here. my name is mary and my 12-week-old son, eamonn, was just diagnosed with milroy's disease this past tuesday. he has had pitting edema in his feet since birth.

my husband and i are a bit thrown with all of this as we know nothing at all about lymphedema and, as new parents, everything seems like a big deal and very scary.

i look forward to learning with all of you about this type of disorder and getting to know all of you.
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Joined: Fri Jun 09, 2006 4:37 pm
Location: Carlsbad, CA

Postby silkie » Fri Jun 09, 2006 5:25 pm

Hello Mary .Big welcome to our family

There is much information on Milroys and Pat himself has Milroys
i think you might like to visit our childrens group. there is a lot you can do
for your son

Lots of parents who can talk to each other exchange experiences
they are a brilliant support to each other and a tremendous help
this is the link click twice on it it will take you to the grp ... ymphedema/

Pat established our Childrens group for parents to get together having someone that knows how you feel and the problems you have is
one of the greatest helps



Pat is always around childrens and here so you have many questions no doubt have a read of the information on both sites
Please let us know how we can help or if there is anything you dont understand or need to ask about

xx Silksxxxxx

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Location: England

Postby maryceady » Fri Jun 09, 2006 6:20 pm

thank you SO much for letting me know about the children's group! i didn't know there was anything at all like that available. i will take a look around immediately.

right now there is so much i need to know i don't even know where to start. i think the biggest issue is trying to find practitioners who specialize in both pediatrics AND lymphedema and as of yet i'm having no luck.

are there treatment centers for this?

we are operating within Kaiser as our healthcare and insurance system and that is a little hard because it's hard to get referred outside of their network. however both of eamonn's doctors have assured us that they will make sure Kaiser pays for whatever he needs to be healthy.
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Joined: Fri Jun 09, 2006 4:37 pm
Location: Carlsbad, CA

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