Update - crazy times

[Twosons]

I think we've finally reached the full diagnosis for Ev. Since I first visited here so much has been happening so very quickly. So much hospital time, nights or days at the ER, other issues being found...

He's been officially diagnosed with Ehlers-Danlos syndrome. After much testing we finally connected the dots. All his issues fall under the umbrella of EDS, including Crohn's.

We are awaiting one last answer that we should have next week. That is the type. We're told its "probable" Vascular EDS. I'm taking it minute by minute until next Thursday when we meet to get the results.

As for his Crohn's. Humira failed. He had a bad reaction and ended up at the hospital. We did a step down in treatment and prayed it would work. No such luck. He's been bleeding for a month now and we working on the next plan for that. Its trickier now.

I'll update once we get the results next week. Love, prayers and healthy wishes for all your beautiful children.

 

[Johnnysmom]

Prayers coming your way Twosons. I can't imagine how difficult this has all been for you and Ev. Praying that the next treatment path becomes clear and that it works for Ev.

Sounds like you have an amazing team trying to help you find your next steps.

((((Hugs))))

 

[my little penguin]

:hug::hug::hug::hug::hug::hug:

 

[Farmwife]

I'm so sorry to hear this.


So has he had the genetic testing done yet?
Does anyone else in your family have this?
Is he hypermobile?

:hug:

 

[Devynnsmom]

((((((hugs))) and prayers

 

[CarolinAlaska]

Sorry to hear your son has been suffering so. I'm glad you got some answers, but sorry that it is vascular EDS. That doesn't sound nice or easy to fix. I hope the doctors can find something to help him soon.

 

[upsetmom]

:ghug::ghug::ghug:...I'm so sorry to hear this.

 

[Tesscorm]

So sorry to hear that you have all been struggling so much. :ghug: Keeping you in my thoughts and prayers. :ghug: :ghug;

 

[DustyKat]

Thanks so much for the update Twosons. :ghug: It is good to hear that you finally have answers but I am so very sorry to hear that your lad has another illness to deal with, bless him :heart: and no doubt a difficult and heartbreaking time for you too.

Sending much love, luck and well wishes for the results next week and a plan for his Crohn's is soon found and successful! Good luck!

In my thoughts. :hug:
Dusty. xxx

 

[Ams-Qld]

Hey twosons, just wondering how Ev is doing? Thinking of you, prayers coming your way :hug:

 

[Twosons]

Thank you

I was wrong on full diagnosis. We are there now. It appears he has Chiari malformation as well. We've been in and out of the hospital the past 2 months. He's under treatment with a cardiologist and on heart medicine now as well. We found he has a hole in his heart, two leaking valves as well as tachycardia issues. Its been a rollercoaster (Ev's description) His Crohn's is flaring and he's been bleeding the past month.

Hugs and prayers to all our kids!

 

[DustyKat]

{HUGS} to you mum. :ghug:

Sending tons of luck and well wishes your way. :heart:

Dusty. xxx