Good (?? at least not "worse") news, then-- I'm glad.   

im exhausted and going on very little sleep so please  excuse if i make no sense

Hopkins visit was productive.  Dr. Dietz (as in Loeys-Dietz) is fantastic. 
Genetic tests came back and ruled out Marfan, LDS, EDS...however they want to test further.  Dr. Dietz feels he has a connective tissue disorder , and possibly one that hasn't even been discovered yet.
Testing his father and I as well, want to see if the one gene that came back questionable in my son is something that either of us also have. 

His aorta is not large enough to need surgery.  (THank GOD) we will manage with medication, and keeping BP low.   No competitive or contact sports.  No weight lifting, no straining.   
Dr. D did put my mind at ease, saying my son isn't "fragile".   Our goal is just to watch and make sure his aorta doesn't continue to grow. 

He did say  that its very likely his food allergies are somehow related to the gene that is causing the artery to enlarge.   We just don't know which gene that is right now.   and we may never.
Genetic testing is very complex, expensive, and takes time.   I am trying to read and learn but its really over my head.

More testing in 6 months, so for now we just continue to adjust to new normal.  I am so proud of my son.  who is handling this like a champ.  For a kid who's sports has been his life since age 5, he has shown me a level of resilience and determination I never knew he had.   He's focusing on grades and golf, and he seems very happy.   So for that  I am grateful.  Just want my boy to live a happy life and I could care less what sports he plays!!! 

Thanks for listening and reading this ramble. 

ALL the best to you this week, MamaZu.   

   MamaZu . . . hoping you post back with good news   

This week is crawling.
We are finally heading to JHU Friday to see Dr. Dietz. He's the cardiologist who discovered Loeys-Dietz Syndrome.
Still don't have the results of the genetic testing but this is week 5 of our "4-6 week" wait and Im praying we'll have some news by the appointment.
My anxiety is brewing, I want answers.

Please send prayers....
I'll post with news once we have some.

MamaZ

Jmarc i sent you another message.  i hope you got it!

Thanks Jmar for popping in - nice to "see" you!   

MamaZu, please keep us posted. 

Quote from: Jmarc on August 29, 2015, 03:07:31 PM
hi goingnuts!!!! i didnt recieve the message can you send it again? your not alone..<3

i just realized i sent it as an email, to the email address that pops up when i hit the little envelope under your name.  hmm...sorry!
i will try sending again. 

As far as I know we have no connective tissue disorders, but there aren't any relatives to ask anymore...my sister is my oldest living blood relative.  Nothing seems out of the ordinary on DH's side.

MamaZu

hi goingnuts!!!! i didnt recieve the message can you send it again? your not alone..<3

jmarc i sent you a message.   i really appreciate you sharing. 
unlike food allergies this is something that nobody has ever heard of, and i have never felt so alone in dealing with something   

I have absolutely nothing to contribute here, but wanted to  hello to Jmarc!  It's good to see you. 

i hear ya it can be pretty over whelming and very hard to absorb all at once   we had a scare earlier this year...we have a counter that everyone props themselves up on in the kitchen to sit and chat...although ot part of the counter that is never used,,we all hop up there,,,(i prefer the chairs to sit in but i digress) my dtr puts her hands behind her and hoisted herself up ...after a while of chit chatting...she hops down and goes to the couch... starts complaining of chest pain....we wait a few thinking maybe gas...give some motrin( im thinking asprin would be better in the even of...but no asprin in the house)..and see if it goes away...well nope we rush to the er... get in the triage part and my dtr blurts out i have chest pain and as soon as the nurse is about to say have a seat she said i have marfans...next thing i know shes on a gurney hooked up to every ekg, untrasound machine and the like....wisked off to cat scan... cardiology and poof back in a room... determimed her aorta was fine..because of the connective tissue disorder along with the marfans apparently you can over stretch your already super fexibale muscles and tissues... what she did when she hopped up was pulled her chest muscle..all was well and we were home for rest and motrin for pain relief.....so yes it can be over whelming. and scares like that are few and far between thank god....i now am on anxiety meds and she is also..

Thank you so much.  I'm on my iPad which is abt to run out of charge but I will come back tomorrow after a good night sleep. 
Back to school week, 504, normally exhausting, but all of this new health stuff and I am wiped completely out...