Superior Mesenteric Artery Syndrome, and falling apart.

Aw I am so sorry. I am 15 and just got diagnosed in early November 2013. The doctors thought I was anorexic and bulimic, and for the longest time they didn't know what was wrong with me. I had a feeding tube in for two months, and now since I have it out, I've only gained three pounds. I am 4'9 and I don't even weigh 80 pounds. I have to drink two ensures everyday just for weight gain. It's difficult at times. I just hope that mine is as easy to overcome as my doctors said. Your story is exactly the same as mine. They said if I threw up 2 more times, I would've died instantly. They sent me to a hospital near my area where they drained my stomach. Then they sent me to the Children's Hospital about 2 hours later. I had a NJ tube in me the next morning. 7 days later I went home and felt depressed and drained. It was the hardest thing in the world to go to the store and even the mall and have people look and talk about me.. It was hard but I pushed through it. I hope your doing good with your SMAS. I'm pushing through mine greatly. I wish the best for you. <3

My daughter Alex was diagnose d with SMAS this last Nov 1213. We live in Fl. The Drs f2f not know how to handle this syndrome. We are in great need to find a Dr that can help her!

Im in great need of help for my daughter Alex who is suffering ft on SMA syndrome. Please contact me. 

 ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

Keep the faith and listen to your body. The strongest advocate you have is you. I am helping my mother 84 deal with SMA. Same issues with diet , pain, etc. I cant imagine your struggles at 18. Do you have luck with a certain diet plan? P.K.

Tasha,
My son is going through the same thing. He was diagnosed 4 year ago at 17 with SMA syndrome. He's given up hope. I need someone to talk to about it. Do you have any advice for me. He refused to seek any medical help. He's 6 ft and down to 103 lbs.
Diana

My son has been diagnosed too. I need to talk to someone too. 

***this post is edited by moderator *** *** private phone numbers not allowed*** Please read our Terms of Use

Hi, I have recently been diagnosed with sma syndrome after suffering the symptoms for over4 years. Ihave lost 18% of my body weight in the past couple of years, I have been prescribed strong anti sickness tablets ans supplement drinks to try and increase my weight as my consultand thinks will help my symptoms. so farits not really working. I am interestedin hearing your experience of sma and also the medication that worked for you,

I had the bypass operation done in 2013 in Brisbane Australia, it has helped but unfortunately I suffered trama to the abdomen 2 weeks after the operation causing the bypass to rupture, to this day I still have flear up's at times but have found they can be stress related (best treatment I have found is a really nice hot bath slows your heart rate and relaxs your muscles)
I experience a lot of lower abdo pain from scar tissue created after the bypass ruptured this is more difficult pain to manage as the bowls are catching each other and not smooth as they should be.