Short Gut Syndrome Parents' Support Group
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Next Support Group Meeting

February 27, 2010
10:30 a.m.

Taylorsville Library
4870 S. 2700 W.
Salt Lake City, UT
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introductions
By: Nonna          (5:01 PM 05/01/2015)
Hi,
I'm so glad I found this support site. My grandson is 23 days old and has been in NICU since birth.
He was born with a jejunal atresia which was repaired the day after he was born. He is left now with Short Bowel Syndrome. He has a g-tube and a broviac line for TPN. My daughter and son-in-law are quite overwhelmed by this situation. I would like to learn as much as I can and be able to ask questions via this support group. I understand each child's condition is unique however, it is nice to be able to share information with other parents who have a child suffering from the same condition.
Introduction!
By: stefynie          (11:25 AM 05/06/2015)
Hi, my name is Stefynie. My son's name is Kameron and he is 5 1/2 years old. He is a twin and they were born at 28 weeks. Kameron developed NEC at 7 days old and ended up having a bowel resection. Most of his ileum was removed, along with his ileocecal valve. He wasn't able to leave the NICU until he was a little over 6 months old, broviac catheder and mick-key button intact. We have been through it all, the 4 a.m. rush to the ER because of a fever (that actually happened many times), turning around and going back to the hospital 2 days after discharge. He spent more time in the hospital his first 3 years of life than he did at home. I have never sought out a support group prior to this because I felt Kameron's horde of doctors were giving me all the information possible, that they were doing everything possible to help him thrive, and that we had a handle on his condition. NOW 5 1/2 years later, I'm not so sure about that. Upon his most recent hospital stay, Kameron had to receive blood transfusions due to anemia. During that stay, many many many issue were coming to light that I feel should have been addressed years ago, information from his doctors I have known since Kameron's birth was just then being shared with me. Things about his condition I didn't know about (yes after 5 years there are things I didn't know!) I realize that I could have done extensive research back then, but I was nave and completely trusted that his doctors would provide me with all the information necessary. That is what has brought me here, I need help and advice-pertaining to nutrition, medications, ect...I look forward to getting to know everyone, and it's a sense of relief to be able to take words of wisdom from parents who have been going through the same situation.
Re: Introduction!
By: Letitia          (9:50 PM 05/14/2015)
Hi stefynie. I understand what you're going through. I know all to well about NEC and SBS and everything that comes along with it. My son Logan is only 5 months we've been in the hospital since his birth. I quickly learned I can't solely listen to everything the doctors say. I've had to do my own research and of course daily observation of my son to let doctors know what may or may not work best for him. Some changes have been made but for the most part it's a struggle. I'm so tired of doctors thinking they know everything.
Re: Re: Introduction!
By: Cooper's Dad          (8:12 AM 05/27/2015)
Amen on the doctors and nurses not knowing everything! We deal with this on a daily basis. We are still in the hospital also, I really hope and pray we all get to go home soon!
Introduction
By: Letitia          (9:32 PM 05/14/2015)
Hello, my name is Letitia. My son's name is Logan. He was born 11/30/14 at 27 weeks. He developed NEC a week after birth and now has SBS. He has a broviac ( central line) and gtube. We are currently still in the NICU. I'm anxious to get home as it's been a long NICU stay. My son has been transferred to 3 different hospitals and as of now we are working on increasing his feeds again. He is currently on donor breastmilk and is tolerating it very well but he can't come home on donor breastmilk and I unfortuanately stopped lactating 3 months ago. He was on elecare at the previous hospital but he kept vomiting. I asked the doctors to switch his formula but they gave me a hard time with that. Instead he was put on reflux meds which helped but didn't elimnate the vomiting completely. I'm hoping there is another formula that he could tolerate because I'm really tired of going back and forth with these doctors. I'm happy to have found a support group and look forward to getting to know everyone. I understand every child is different but it's comforting to be able to talk with people who understand and are experiencing the same situation.
Re: Introduction
By: Chlo           (3:53 AM 05/26/2015)
Hello my name is Chlo. My daughter was born on July 2013 at 36 weeks, weighing 5 lbs 9oz. My daughter has been on Neocate since she was 2 months old. She had NEC and jejunal atresia since birth. She is left with 46cm of her small intestines. She has a gtube. She was on TPN til March 2014. She is on omeprazole for reflux, and she is taking iron everyday. She is on Flagyl every month for 7 days.She now stool once or twice a day. When she was younger her stool was really loose that it would leak and of course had more frequent stools.I used to double diaper her. I used to use Pampers brand but found Luvs to be better at handling leaks. She now looks like a normal 22 month old.
Introduction
By: Aubrey2          (3:28 PM 05/22/2015)
Hi, my name is Aubrey. I have twin boys (identical) that were born at 27 weeks. One of my twins has had a really hard time starting at birth. They were born on 11/7/14, weighing 2pds 8oz. Harry was born with an omphalocele (some of his intestines and appendix were in his ambilical cord.) He had surgery to repair that right away. Harry developed NEC twice and needed surgery with the second infection. He now has short bowel and has struggled gaining weight. He was in the NICU from 11/7/14 until 3/17/15 but has been back to the hospital a few different times. Recently, he has had blood in his stool and has quite a bit of mucus in it. The doctors have tried him on EleCare (vomited all the time), progestimal and now alimentum. He has been on alimentum for six days now and he seems to be going down hill again. He gained weight at first but is now popping so much. His ped surgeon did an upper and lower GI exam and he said everything looks good. His GI doctor put him on neomycin to help with any bacteria. The GI doctor thinks that Harry can't eat corn so alimentum should be best-the ready to eat only is corn free. Harry is about 6 1/2 months old and weighs 10pds 3oz. Not only is he popping a ton, he's so uncomfortable.harry has developed several hernias and just has one surgery for a groin hernia. He seems like he's constantly hungry because he just poops all the time. His stool is so liquid like that it leaks from his diapers. He hates being put down and especially laying down anymore. As parents, it breaks our hearts to see him suffer. I wish someone could help him!
Introduction
By: Cooper's Dad          (8:09 AM 05/27/2015)
Hi, my name is Andrew and my wife's name is Cassie. Our son Cooper was born 11/9/14 at 30 weeks one day because of reverse flow of blood thru the umbilical cord, he weighed 2lb 9oz. He got NEC at 3 weeks old and had about 80% of his bowel removed. He has 55cm of small bowel left and about 20cm of large bowel. He was reconnected 2/5/15 and we are still in the hospital 5/27/15 and counting..... He is up to 18mL/hr of elecare continuous feeds thru a kangaroo pump, 3 - 15mL bottle (bolus) feeds a day (that he usually doesn't drink), and 1 teaspoon of rice cereal 2 times a day. He is on TPN 18 hours a day. He gets around 480mL and is at 1.5% protein and 14-15% dextrose in his TPN. He is up to 12lb 6oz and is a super happy healthy looking baby. If you didn't see his tubes and cords you would never know anything was wrong with him. He smiles and hollers at all the nurses. He is rolling over and setting up straight in his bumbo chair. The doctors and nurses are amazed at how well he is doing, but are saying we will be here for at least another month and probably more. We are possibly looking at a STEP procedure in the future depending on how he does.
Intoduction...
By: Adela          (10:04 PM 06/11/2015)
Hello everyone, My name is Adela. I have a 14 year old daughter (Ariana) who now suffers from Short Gut Syndrome. I am very happy I stumbled upon this support group while searching for the pros and cons of using an Ethanol lock vs Heparin lock on my daughters Broviac. My daughter's story is very different from what I have read in the previous introductions. Up until March of 2014, Ariana was what you would consider a "normal" healthy teenager. She was a avid Softball and Soccer player who also enjoyed her weekly Karate classes. Being in Junior High, teens are faced with lots of pressure to "fit in". Ariana at 5'7 was weighing 168 lbs. In the beginning of March, she suddenly dropped 20lbs. Alarming as that was to us, we did not make a big deal to consult with her doctor because she was playing soccer and softball at the same time as well as changing her eating habits into a much healthier way of life. Mid March Ariana was experiencing nausea and not being able to keep her favorite food down. We would ask Ariana if she was being bullied into losing weight and causing herself to throw up. Ariana has always been an honest child and is not afraid to express herself, she immediately felt hurt because we would think of her harming herself. I knew what she was going through was not normal and I decided to take her to her doctor. The doctor said she had GERD and that she should take some medication to help with it. 5 days later it seemed she was not getting any better so my husband decided to take her to the ER. After waiting 6 hours in the ER, they finally came to evaluate her and noticed her BP was really high for her age. Even after re-taking it 4 times and seeing no change in the readings they decided to ignore it and stated that her BP was elevated because she had white coat syndrome.. Anyways, the ER physician said she suffered from gastritis and prescribed more meds and sent us on our way. On March 31, Ariana suffered from her 1st seizure and was transported to the ER via ambulance. There she suffered 4 more seizures and became unresponsive. They air transported us to Phoenix Children's Hospital where they diagnosed her with a form of vasculitis called Polyarteritis Nordosa. This type of vasculitis caused aneurysms to spasm in her abdomen and kidneys (causing high blood pressure not white coat syndrome) The vasculitis caused her stomach to distend which resulted in multiple bowel resections (90%). We ended staying in the hospital for about 6 1/2 months before we were able to go home. Ariana has a G-tube placed that is not used for feedings but for stomach secretion drainage only. She had her stomach sown shut at the duodenum so that any water she could intake would come out in the g-tube. Her TPN was for 20 hours and lipids 2x a week. Full liquid diet all the time is hard to adjust to after being able to eat anything you want a few months before. A few months ago we came to the University of Nebraska Medical Center for a possible Intestinal transplant evaluation. They informed her that she was not a candidate for transplant but she would benefit from intestinal rehabilitation to improve her way of life. Friday June 5th we returned to UNMC to have this procedure done by Dr. Mercer. Ariana now can eat some foods and does not need her g-tube open to drain 24/7 like before. We are down to 18 hours on TPN and the goal is to make it so she has TPN only at night time. We are hoping this will help her feel more normal and allow her to start high school this August with no need of TPN backpack during her school hours.
By: Renita Donnell          (10:55 AM 07/01/2015)
Good afternoon my name is Renita, it's a blessing to have seen so many testimonials about SBS, up until the age if 3yrs my son Ricardo was a healthy child it happened so suddenly I was putting him to bed one night and u noticed his tummy that was so blotted out of shape I knew something wasn't right so I rushed him to the ER right away, the doctors gave him a scan and saw that there was a severe amount of gas and feces' in his bowel's they gave me an adult size enema which just deflated him and an enormous amount of feces' was released. I felt so sad for my son, even though he was going on time it still wasn't enough for him. Over the next few weeks Ricardo was showing the same signs again and I took him the doctors again, long story short he had a biopsy that came back positive for Hirschsprung disease. Because of the backed up system in my country Ricardo was hospitalized several times but still no resolvable answer to his worsening conditions. In 2014 Ricardo almost died from a severely impacted colon had was given a colostomy, I can't tell how stressful all of this was considering me having to leave my job to stay home with Ricardo because he was tapering at the back, which cost major delays in his education. I brought Ricardo over to the united states in July 2014 and by then his colostomy was badly prolapsing. Ricardo underwent invasive surgery to correct his colostomy which also corrected his chronic severe abdominal distention, constipation and pain. Ricardo tested negative for Hirschsprung disease but still had the symptoms. Ricardo colostomy was taken down with creation of diversion with an ileostomy in October 2014, since the operation Ricardo suffers from on going diarrhea with lost a bacterial overgrowth that is secondary to his Short Bowel Syndrome. As a single parent only my Heavenly Father has kept me through all of this. Ricardo is now awaiting motility testing in Orlando at the end of this month, its only the beginning to what am told is going to be nor an easy road, but GOD!!!
Introduction
By: JoyceB          (5:35 PM 07/09/2015)
Hello, my name is Joyce and I am writing about my great granddaughter, Elena. She is in Children's Hospital again. Elena was born with an unattached colon.Long story about a hospital....they lifelined her via helicopter to Children's. She had surgery to fix it, plus an iliostomy. She had several surgeries....one each day for 4 days. She was put on TPN. After a month or so, she got to go home. She did pretty well for for 3 or so months and then really got sick and kept vomiting, etc. They admitted her again and found that she had scar tissue where they had operated on the small intestine. Her small intestine died from no blood supply. Surgery every day again, trying to salvage some of the small intestine. I believe she ended up with about 5 inches. We have been there with the runs to the ED...line infection...bacterial overgrowth, etc. She has a g-tube, but we are not using it...?? She has gained weight and will be two years old in August. Anyway, she keeps having to have blood transfusions. Her hgb was 5 today and her Ferritin was 3. They gave us iron to give through the g-tube site but it makes her deathly sick and she vomits froth looking vomitus. Does anyone else have this problem? She eats and drinks by mouth but not enough to sustain her. She loves boiled or baked chicken and french fries, etc. Of course she has the wonderful diarrhea!!!
Introduction
By: MayraH          (9:23 PM 07/19/2015)
Hi my name is Mayra hernandez I'm a mother of three boys I gave birth to two twin boys August 20,07 it was a blessing seeing them for the first time, but when they were born they had problems eating so the doctors decided to transfer them to UCI hospital and that's where they told us they needed a Malrotation of the intestines they thought that was going to help them eat but the unexpected happened the doctors told us that they were born with a large kidney large bladder and small intestine they were in the nicu for 2 moths after that they were able to put the broviac, gtube and they get cath every 3hrs I didn't bring them home right away they went to a home hospital and stayed there for four years now they live with big brother and mommy and daddy for 3yrs but we have both of them on the transplant list... I'm very happy I finally found a support group 😀
Introduction
By: MayraH          (9:26 PM 07/19/2015)
I forgot to say the diagnose for my twin boys is Megacystis-microcolon-intestinal hypoperistalsis syndrome and their names are Emiliano and Giovanni thank you
Introduction
By: Missy07          (6:36 PM 08/25/2015)
Hi,
My name is Melissa I have a 3yr old son with short gut syndrome. He has an ileostomy, NGT & port. My son was born full term with gastrochisis, clonic atresia and a few other things. We've come a long way as when he was born he coded 3min after being born. We spent the next year in the nicu, the first 3months he was on ECMO . He was reconnected 3x and it failed. He was on TPN for awhile then moved to elecare which he is currently on. We've been strictly on tube feeds and oral (not much at all) for 2yrs. He has an NGT but after months are arguing with GI doctor (while surgery and motility doctors agree GT) she finally agreed. We should be going in for a GT soon. Im hoping to find support since the GI doctor is pushing him to be on all oral feeds and trying to reconnect even though test haven't been positive ( for bowel control) .
Introduction
By: Debbie W          (10:01 AM 09/15/2015)
Hi I'm a Foster parent of a 4 month old little girl born with Intestinal Atresia and only 42 cm of bowel. After two surgeries she one has 77cm of bowel. She is on TPN and G-Tube feelings at 13 ml per hour at 18 calories per ounce. She was released from the hospital at 3 months of age. She has large Emesis almost every morning before she wakes up and large runny stools. She has sections of dilated bowel and we can hear and feel formula move from one section to another when we pick her up or move her around. From everything I have read this is pretty typical for Short Bowel Syndrome.

She also tends to sleep more than I would expect at this age and am wondering if this is normal as well?

I would appreciate any input on what we may expect as we care for this angel. We have cared for other medically fragile infants before but none with SBS. All information would be appreciated.

Thank you.
Re: Introduction
By: CathyElsw          (11:47 AM 10/03/2015)
Hi Debbie I am new to the group and am also a foster parent. I will be getting a newborn that is actually one month old today when he gets released from the hospital that has been diagnosed with SBS. So far all I know is he has had 7 surgeries and 7cm of his intestines cut out, they are going in next Friday to put the rest of his intestines back in and hopefully recovery will begin. I know you are asking for info but is there any info so far you can give me? I have never cared for a medically fragile child, I'm not stressed over it what I am stressed over is the waiver process! We have the babies two brothers and we plan on adopting all three of them but we were told by the agency we foster through that if the state deems him severely medical fragile they won't place him in our home! They will want him in a home with no kids even though we are wanting to adopt! And of course Dfacs hasn't taken custody yet and won't until he is about to be released from the hospital. So I am so stressed not knowing how severe his condition is! Any info would be great!! Thank You so much :) Cathy


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