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@kanaazpereira

Hello @sawatzky,Welcome!

I'm sorry about your son's diagnosis; it is so hard to see your children battle something like this, but we're glad to have you here on Connect. As you will see, we have many members who have discussed SMAS, and will hopefully be able to give you some answers.

@hamiltl80, @sbraudrick13, @candymarie72, @jobones94, @smfjf101, @malaki, @annewhit, @katiesmom, @danamarie18, and @manzfield, do you have any recommendations for @sawatzky?

I'd also like to tag @ch246cf10, @wandering, @texas7777, @patinhou, @bburleson1, @blindeyepug, @liliane, @audrapopp, @chrisl, @wilkins905 who have different conditions, but either live in Texas or have been treated there. I sincerely hope someone here has knowledge of a specialist in Houston.

@sawatzky, could you tell us a bit more about your son's symptoms, and what led to this diagnosis?

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Replies to "Hello @sawatzky,Welcome! I'm sorry about your son's diagnosis; it is so hard to see your children..."

Sorry for the delayed response...My 17 year old son was diagnosed with SMA about two months ago. During that time he has had no weight gain. He is eating well and bowels are good, but still at a loss on what to do. Really of thinking of scheduling appt at Mayo in Minnesota. We have a gastro doc we are seeing now. He has run tests and cannot determine why no weight gain....We see him again in two weeks...I am scared my son is going to die.

Hi. I have SMAs and I live in Houston, Texas. I was diagnosed about a year ago--so many hospital Drs went back and forth through Ct scans etc. it was a nightmare. I also have crohns have have had chronic cdiff. My GI confirmed my diagnosis once and for all by presenting my case at a radiology conference. We are currently seeking out surgeons, whom he suggests and has spoken with about my case, to do surgery. I'm meeting with one on march 15. Background--I don't have a large intestine anymore...my GI wanted me to have SMAs surgery during 2nd colon surgery, which was done in October 2015 by an excellent surgeon--but surgeon did not want to do the surgery then because he was afraid of risks etc. please respond to me here or I'm not sure how else you can contact me--I just created this user name to contact you. I know this is very scAry and not having answers or people who know what's going on is even more terrifying.

I am 28 years old and my dr is at memorial hermann in the medical center. His name is Andrew DuPont and he's an amazing dr on all levels. Intelligent, kind, incredibly compassionate, and up to date with the latest treatments for GI issues. He even conducts research with the UT physicians network and has many "fellows" residents who are completing their GI speciality, who work below him--learn fr him and I think this gives him a unique perspective because he's always up to date on the newest treatments etc and you have more eyes looking at your case. I urge you to make an appointment with him. Do you live in the Houston area? Sometimes appointments have to be scheduled far out--if you experience that problem, contact his nurse and leave a message explaining the severity of your sons condition etc to get bumped up.

I have had crohns since I was 11---been in and out of hospitals and through Drs etc. I feel this gives me pretty high standards when it comes to doctors and I fully trust Dr. DuPont more than I have ever trusted anyone else. I would recommended him to everyone. He's amazing and he will never dismiss pain and symptoms etc. he looks to find answers and solutions. Please contact him!! Xx

Welcome to Connect, @amyk811,

Thank you for sharing your history; I'm sure that @sawatzky, and other Connect members on this discussion, will appreciate all the information. We are so glad to know that you've found a physician you are comfortable with, and can trust; that in itself is a big step towards feeling better, isn't it?

I'm sorry to learn about the Crohn's disease diagnosis, and I would sincerely encourage you to take a look at Mayo Clinic's IBD blog on Crohn's Disease and Ulcerative Colitis: http://ibdblog.mayoclinic.org

Let us know if you have any questions, @amyk811, and keep us updated about your appointment too.