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Hi, just wondering if anyone has had or has SMA syndrome. My daughter has just been diagnosed with this after being sick for the past three years. Does anyone have any information on this?

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My 8 year old son was just diagnosed with sma and we are awaiting treatment plans. He has been sick for about 3 years too! He has serve abdominal pain after eating food, with vomiting approx 2 to 3 times a month.
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Hi. My 14 year old daughter was just diagnosed with SMA last week after going for a barium swallow test. My daughter is very athletic from being a competitive dancer and is a healthy weight. Ive been reading a lot about SMA but im not getting all the answers im looking for. I would love to hear from people with the same issue.
My biggest questions are:
Has anyone else been told that the doctor does not want to have to do surgery and instead modified their diet instead?
Did anyone else get diagnosed with Cyclic vomiting syndrome just before the SMA diagnosis?

I would love to hear your story

Tracy
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Hi, I'm sorry to hear about your daughter.

I am 26 y.o. and have been going through this for about 6 years.... I have gone to many Doctors (in the U.S. and in Brazil), and they all don't believe in what I say. I leave the Dr.'s office feeling worse than when I walked in.
My father is a Neurosurgeon in Brazil, and for that reason I can say I've been to the "class A" doctors trying to figure out what I have.
But one Doctor in Brazil, who did a CT of my stomach found that i had SMA. Well, I came back to the U.S. (where I live, with my husband), and brought with me all of my test results. And guess what? They didn't believe my CT results! They didn't believe the pictures they saw! It was really, really frustrating to me.

My husband and I have been looking for a Doctor to treat me, but no one seems to believe in SMA because it is such a rare syndrome.

So I don't know what to do...

Does anyone know a doctor who can take a look at my CT and tell me what step should I follow? If so, please, please, let me know.

My email address is _[removed]_

Thank you very much, and hopefully we will all find a solution together - because we really need it!

Gabi.
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My 18 year old son has had severe stomach problems for years and finally became acute this last December. He was hospitalized for most of the last 4 months. We went to the local DRs and hospital and even a big university hospital. Everyone diagnoised SMA syndrome. They tried j-tube feedings. He still vomited.They tried nasogastric suction and TPN. After that to failed. He finaly had a Gastrojeunjostomy(gastric bypass)That helped with the vomiting but not with the severe pain and now he is vomiting again.The Drs are stumped and We are still trying to find answers. All the research we have done state that surgery helps 7 out of 10 but doesn't tell what happens to the other 3 cases.If anyone knows anywhere to look for more answers Please let us know. I dont want to scare anyone most of the time tube feedings will fix SMA, supposedly by what we have read and been told
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I am an 18 year old female and was just diagnosed with SMA syndrome last October of '08. I have had issues eating my entire life, but was only hospitalized last October.

Along with my SMA, I also had developed pancreatitis due to infection of waiting too long to see a doctor. I waited 3 days, (I thought I just had the flu), and I was constantly vomitting without being able to hold anything down.

I eventually went to the emergency room. They put a tube down me to suck everything out, and I filled up about 5 liters of gastric contents almost immediately. My stomach had distended to 5 thimes it's size, which is the most unimagineable pain. My blood sugar was over 400 due to the pancreatitis, which caused me to also be quite delerious.
I was hospitalized in two hospitals, (I was sent to Children's Primary in Salt Lake City since at the time I was 17 and they had specialists there.)
The gastrointestinal board of Salt Lake City and Ogden Regional diagnosed me with chronic and severe SMA syndrome, which coupled with the pancreatitis was even more rare. (Rare enough to where they had never heard of it.)

I had a PICC line inserted and was fed that way for a while, but eventually got back up to regular foods after a few weeks. They thought that the fat pad surrounding the superior mesenteric artery had deteriorated due to my low weight of 85 pounds. Which sounds like an extremely low number, but I am only 4"11 and am actually on the higher end of my BMI (body mass index) chart. (They accused me of being anorexic.)

I was again hospitalized this April of 09 for the same issue, only a week after having a test that said I was "getting better". I had gained weight as they asked, and I was now between 90 and 95 pounds, but yet I was once again hospitalized.

I had the same board of doctors confront me, and I had the same routine. PICC line, and then regular foods. It was deja vu, even though I had gained weight.

They determined that I have misproportioned arteries throughout my body, (some larger than should be and some much smaller). And they also decided that the chances are that I've never had the fat pad to begin with, which explains my picky-ness and vomitting after eating too much throughout my whole life.

I had just recently been telephoned by my primary doctor (whom I see once a month for follow ups) on Hill Air Force Base, who says that my SMAS is NOT fixable by surgery. He didn't exactly explain why, and says I may just "grow out of it".

How am I supposed to grow out of a problem I've had since birth?

They told me I am practically doomed to living the rest of my life in and out of the hospital, doomed to the same routine of constantly being sick, weak and tired, and eventualy not even being able to feed myself. (as it will get worse and worse over time.) They say that if I don't grow out of it, I'll be lucky to hit 40.

I don't believe them, and frankly I am quite angry with how this is being tossed aside. And I'm scared.

I don't see how surgery CAN'T help me.

If ANYONE has any advice, tips, or ways to get these lazy doctors to change their minds, please tell me.
I REFUSE to let this be my fate, of rotting away in some hospital bed somewhere and not chasing the many dreams I have running around in this young brain of mine.



Thank you so much.
And to all of those who have been diagnosed or have loved ones diagnosed, good luck.
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To the poster above - I can relate to everything you wrote. I'm nearly 5'5", and have had SMA Syndrome my whole life. As a result, the most I've ever weighed is in the mid-90s. Just months ago, I was barely above 70 lbs. Now that I've had surgery (open duodenojejunostomy), I've battled my way up to 85~87... though I still have not experienced a single pain-free day since.

Those doctors are completely incorrect when they say surgery cannot help you. There are more options now than ever. I had my open surgery just *months* before the London Health Sciences Center in Ontario, Canada came up with a robotic laparascopic alternative for SMA Syndrome that could have spared me much post-operative pain... and permanent nerve damage. But, it is not too late for you.


I am also the initial author (and image-provider) of the Wikipedia article on SMA Syndrome. In that article, I discuss all the surgical and non-surgical options now available for our condition.

I hope you find some helpful information and answers in my blog and Wikipedia entry. Perhaps they will provide you with arguments to present to your doctors regarding the affectivity of surgery... though, if I were you, I would find doctors that are worth my time. It is true that SMA Syndrome is so rare that many in the medical community do not acknowledge its existence. The Chief of the Gastroenterology Department at Georgetown University Hospital could hardly believe his eyes when he met me. A conference was called throughout the entire hospital to discuss my radiology.

But, trust me, there *are* doctors out there who will listen to you and give you the treatment you deserve.

Let me know if you have any other questions, and may God bless you.

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Hello everyone. I can feel the frustration you are all feeling. Its been a long 5 months dealing with this with my daughter. She is the 14 year old that was diagnosed back in January. I feel for all of you. Watching her go through this for months now has been so hard. She has many emergency room visits, medications perscribed and doctors opinions. She had a second barium swallow done and an ultrasound. It was conclusive that it was SMA. In the ultrasound they noticed her duodenum was not contracting anymore. Anyone else have this same issue with SMA? In the barium swallow they also noticed that laying on her side didn't help empty the duodenum either. They all found this quite puzzling.

With some convincing from her pediatrician and myself the surgeon has finally agreed to do the surgery for her. She has now gone from a healthy, happy outgoing 14 year old to a depressed, fearful, moody, weak 14 year old. She is still maintaining an ok weight. I think this is due to the fact that she is almost all muscle and its hard to lose muscle. She has almost no fat on her body. She loses and then gains it back weekly. She has missed about 40 days of school since January as she has been vomiting, nausous and in pain all of those days. She struggles daily dealing with her SMA. She goes in to have a laparascopic duodenojejunostomy June 29th. If all goes well she will only be hospitalized for 5 days.

For those of you that have been suffering with this since you were young...my heart goes out to all of you! Keep fighting to have someone listen. If you have to, travel outside of your country to have someone listen. I was lucky to have doctors on my side to help convince that something had to be done. They all agreed that this is what she had so there was no hesitation in diagnosing her. The surgeon doubts our decision to go ahead and operate cause she hasnt lost enough weight. This frustrates me to no end. Who would let thier child suffer like this daily when something can be done? Luckily she will do the surgery anyway. My daughter is looking forward to putting this all behind her soon.

I hope to report back to you all in a little while with good news and hope for you all!
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Hello everyone. I can feel the frustration you are all feeling. Its been a long 5 months dealing with this with my daughter. She is the 14 year old that was diagnosed back in January. I feel for all of you. Watching her go through this for months now has been so hard. She has many emergency room visits, medications perscribed and doctors opinions. She had a second barium swallow done and an ultrasound. It was conclusive that it was SMA. In the ultrasound they noticed her duodenum was not contracting anymore. Anyone else have this same issue with SMA? In the barium swallow they also noticed that laying on her side didn't help empty the duodenum either. They all found this quite puzzling.

With some convincing from her pediatrician and myself the surgeon has finally agreed to do the surgery for her. She has now gone from a healthy, happy outgoing 14 year old to a depressed, fearful, moody, weak 14 year old. She is still maintaining an ok weight. I think this is due to the fact that she is almost all muscle and its hard to lose muscle. She has almost no fat on her body. She loses and then gains it back weekly. She has missed about 40 days of school since January as she has been vomiting, nausous and in pain all of those days. She struggles daily dealing with her SMA. She goes in to have a laparascopic duodenojejunostomy June 29th. If all goes well she will only be hospitalized for 5 days.

For those of you that have been suffering with this since you were young...my heart goes out to all of you! Keep fighting to have someone listen. If you have to, travel outside of your country to have someone listen. I was lucky to have doctors on my side to help convince that something had to be done. They all agreed that this is what she had so there was no hesitation in diagnosing her. The surgeon doubts our decision to go ahead and operate cause she hasnt lost enough weight. This frustrates me to no end. Who would let thier child suffer like this daily when something can be done? Luckily she will do the surgery anyway. My daughter is looking forward to putting this all behind her soon.

I hope to report back to you all in a little while with good news and hope for you all!

Tracy
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Way to much to type but they did more blood work for Lot's of thing. I have to go get a MRCP test to look at pancreas and any other thing they might find. I go for the mrcp on October 13Th then go back to Dr on November 3 to see what they say and they might do a eus test too. I have had surgery fro sma syndrome but before my surgery will the SMA was there I went into the hospital at Johns Hopkins I had pancreatitis going on before my surgery at the time they let it heal then the surgeon did the SMA surgery after that I have had more uses so that way my gastro and another dr that works with him want's me to get a MRCP test to look at pancreas and any other thing they might find. When I come back to see them they might do a EUS test too. If any one needs more info about SMA SYNDROME go to fackbook here is the link ***edited by moderator*** web addresses not allowed
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hi iv been ill since i was 12yrs old n im now 19 ive been in n out of hospital all of that time ive had countless surgeries n even had eating disorders assessments alot until they decided actually finally face i didnt av an eating disorder but i still get nurses n docs n people who just judge me coz im only 6 and a half stone anyway i was diagnosed with sma syndrome, cronic reflux, esophagitus, i have low blood pressure n loads of other problems with emptying of my stomach n my heart i also have severe osteopirisis. Anyway even though ive been in serious states n etc etc etc its a long story that i decide 2 not talk about my illness n feelings as i just cant i cant talk about any of it, anyway i had a jejunostomy n i go on a drip feed especially to fit with my diet n to go through my jejunum but even though it hasnt worked entirely for me as i havent put on much weight n im still very ill someone else mayb able to take it and adjust it to there needs and it may work for them but it all depends whether you wana be on a drip feed nightly or daily watever but i didnt av a choice it was either this or die but even though ive still nearly died god knows how many times, it got me from 5stone to 6 and half atleast n other people it mat work better coz they can have lactose or dairy where as i cant. might be worth trying i dont know as my docs hardly even know what sma is.
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Hi, my daughter also has had 2 episodes of SMA sydrome. Currently getting the conservative approach which is the NJ tube passing through the blockage, with TPN and lipids to feed her fat pad. If this doesn't work we will be doing a laproscopic duodenojejunostomy. Have you seen mystery diagnosis on youtube regarding SMA. very interesting. Smantha Mina even has her own site regarding this. I hope this helps
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Hi, my daughter also has had 2 episodes of SMA sydrome. Currently getting the conservative approach which is the NJ tube passing through the blockage, with TPN and lipids to feed her fat pad. If this doesn't work we will be doing a laproscopic duodenojejunostomy. Have you seen mystery diagnosis on youtube regarding SMA. very interesting. Smantha Mina even has her own site regarding this. I hope this helps
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I'm so sorry that you have been going through a lot of pain.  I am currently with my daughter who has SMA and is in the hospital.  She had SMA when she was 14 and finally went to a hospital with results,(total of three hospitals) she was treated conservatively with a feeding tube, TPN and lipids w/ picc line and it worked. Now at 17 back in the hospital and considering a laproscopic duodenojejunostomy. I have heard that sometimes you have to go back with a scope to see if any of the previous surgeries done has adhesions that might interrupt the new passage.  Have they done a contrast dye with a CT?

 

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Hi, I have also been diagnosed with SMA Syndrome. I have been put on all full liquid diet and boost, carnation or ensure shakes to gain weight. If I cant gain weight and continue with the pain they will have to do surgery. Very sick and I hope this works . Good-Luck
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