[docsmomma]

I'm not even sure how to think, feel, anything.

We'll start with God must see some strength in me that I don't cause this is alot to take in.

First of all, my sister has Ehlers Danlos Syndrome (EDS) type 3 with crossover into types 1,2, and 4. Its rare, but genetic. And the genetic has been a thorn in my side for quite some time now.

While trying to understand her disease, and after being told by mom and sis that they thought David showed characteristics, I decided to look into it. It took about 15 minutes before I went, WOW... I see the concern now.

David is over 5 ft tall, at 9 yrs old, 85 lbs, extremely flexible, bruises easily and bruises take MONTHS to heal (he has a bruise from 2 MONTHS ago that is still visible). I honestly worry that people see his legs and think I am beating him because how easily and badly they sometimes bruise.

So today we went to the ped, and I simply said "So my sister has this rare thing called EDS and I guess David has some key characteristics of it. is it possible to get a referral for testing" Well Dr. R. knows about EDS, and immediately went through a workup on David, asking me some questions, looking at his height, etc... First he asked about Marfans, and checked David's armspan. It's not looking like Marfans. He continued to check and see if David had the flexibility, told me David's ears, height, flat feet, large feet, unusual flexibility, among other things pointed to a high likelyhood that he has EDS type 3. We now have a referral to genetics.

I am grateful hes knowledgable enough to say "This is serious, lets check it out." but I am wishing we weren't facing this "probably diagnosis" as Dr R has termed it.

We also discussed joey's disease and turns out Dr R knows about LCH. This doctor was really placed in the right place at the right time. Perfect for us, an answer to a prayer.

But honestly! 2 rare disease??? 2 different kids, both mine. Can I just say this is NOT fair???

At least we were able to find something to resolve another issue with David. David has an immature bladder and he's now starting on an anti-depressant (which might help him in that aspect) that also has been found to help mature the bladder and prevent night time accidents. We are all, as an entire house, exhausted from waking every 2 hours to take him to the bathroom.

Good news tho, Melanie checks out in all areas except vision, and we'll be facing that one soon.

[Countrymom4]

:hugs: is all I have :hugs:

[Mami]

I am sorry for all you are going through!

[mamma_anna]

You're right. It isn't fair.

and lots of prayers.

[2Corinthians10:4]

I thought I had already replied to this, oops. But I just wanted to let you know that I have been praying for you and your family. I pray for comfort, peace, wisdom, and for something good to come out of all of this pain.