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Jan 31, 2018 · Need Awareness/ Prevention/ Research on Superior Mesenteric Artery Syndrome (SMAS) in Digestive Health

Here is the link. A lot better than me trying to explain it. She is hooked up 14 hours a day. We’re just lucky that her employer allows her to work from a home office. Any more questions feel free to ask. I will respond as best I can.

https://en.m.wikipedia.org/wiki/Parenteral_nutrition

Thank you,

Greg

Jan 30, 2018 · Need Awareness/ Prevention/ Research on Superior Mesenteric Artery Syndrome (SMAS) in Digestive Health

Just wanted to give a quick update on my daughter Shelby. We still haven’t gotten in at Mayo. However she had her TPN pick line put in about three weeks ago. And while it’s early in the process, Shelby has put on about 6 pounds. Doesn’t sound like much to most folks, but to the people on this board they know how important it could be. We had a Sunday family dinner about two weeks ago……….it was the first time in I don’t know how long that I watched her clean her plate. Fried chicken, mash potatoes, biscuits and gravy. Her spirits have been better too.

Like I said, it’s early, I know that. But I’m looking for good anywhere I can find it. We have an appointment with her Gastro on Friday. So maybe there will be more to share.

Thank you so much for thinking about my Princess.

Greg

Dec 6, 2017 · Need Awareness/ Prevention/ Research on Superior Mesenteric Artery Syndrome (SMAS) in Digestive Health

Just a quick update…..had our appointment with the doctor yesterday. She is down a couple more pounds and they are scheduling her to get a TPN. Her doctor got all the information I had about the referral and said he was going to get his assistant on it immediately. So we will wait to see what happens. Thank you for the info…..I will update as we get new info. Maybe it will help someone else…..

Dec 2, 2017 · Need Awareness/ Prevention/ Research on Superior Mesenteric Artery Syndrome (SMAS) in Digestive Health

As an update, it was the Gastroenterology Department that she spoke with that couldn’t/wouldn’t help her. That is one of the reasons this has been so disheartening. I guess we all thought that when they told her to call for an appointment we were on our way to getting healthy. It got her hopes up, only to have them completely destroyed. And this isn’t the first time. She was in the hospital for three weeks last year. That was when we finally got a diagnosis and then she got her feeding tube. Unfortunately, the tube doesn’t seem to be the answer for her. The next procedure is the TPN I guess. Now, I know I’m not the sharpest knife in the drawer, but I would think that a diagnosed case of one of, if not the rarest gastro diseases around would be of interest to someone. At any rate, the appointment with her doctor here is this coming Tuesday. My wife and I both are going with her.

Fingers crossed……….

Dec 2, 2017 · Need Awareness/ Prevention/ Research on Superior Mesenteric Artery Syndrome (SMAS) in Digestive Health

That is the plan right now. We have already identified all the info that the clinic will want from him to refer her. I know he will do whatever it takes or just about whatever we ask him to do. He is a wonderful doctor. The only doctor that believed her and didn’t give up on her. Ever. I will definitely advise you of the outcome.

Dec 2, 2017 · Need Awareness/ Prevention/ Research on Superior Mesenteric Artery Syndrome (SMAS) in Digestive Health

I’m not sure what her official status is. She was told a few months ago that they wouldn’t see her till she had been off pain meds for 30 days. When she was able to do that, she called back and they said ok, call the end of November for appointments in Feb. she called the end of November for her appt in February and was told February was full. Ok, she asked when can I call for March. The less than helpful person on the other end said she didn’t know and couldn’t help her. So she doesn’t have any appointments to manage. I can’t find any hardline numbers to call for assistance. Just the appointment number. And we already know that’s useless. I guess I was expecting a little more from the Mayo Clinic. Won’t let that happen again.

Have an appointment with the wonderful doctor who believed her and stuck by her till we got a diagnosis in Atlanta next week. Maybe he knows what to do….

Frustration continues to build…..

Dec 1, 2017 · Need Awareness/ Prevention/ Research on Superior Mesenteric Artery Syndrome (SMAS) in Digestive Health

Thank you for the quick response. She hasn’t tried the other locations yet. We were hoping for the Florida location because we found a doctor there that has done some work with SMAS patients. And I guess after this long journey to this point, we wanted someone with experience.

Dec 1, 2017 · Need Awareness/ Prevention/ Research on Superior Mesenteric Artery Syndrome (SMAS) in Digestive Health

Good Afternoon Everybody,

My name is Greg and my daughter was diagnosed with SMAS after about a 9 year journey. She was blown off by doctor after doctor till we found a good Gastro here in the Atlanta area. She was told,during the 9 years everything from get counseling for an eating disorder to well little girls can be emotional. I often wondered how some of them made it through to be a doctor. She has a feeding tube in right now, but isn’t tolerating it as well as we had hoped. A British film company did a short documentary on her for YouTube. If anyone is interested you can search Barcroft TV on YouTube and scroll till you see the one about feeding tube. Anyway, to my question. She was accepted as a patient to the Jacksonville Mayo and told to call the last part of November. When she called they said everything was booked though March. They also said they didn’t know when they would open up April or May appointmentsa d they pretty much blow her off. Customer service was, let’s say, less than helpful.

Sooooo…….how do you get through to anyone? You can’t find any direct dial numbers except to make an appointment. So now what? It is so frustrating. She is married and 24 now and still no end in sight. She wants to finish college and have a family. But can’t do it. Can anyone tell me how to get an appointment. There has got to be a way to get through to someone.

Thank you in advance for any help you can give.