Short Gut Syndrome Parents' Support Group
Join us on facebook

Next Support Group Meeting

February 27, 2010
10:30 a.m.

Taylorsville Library
4870 S. 2700 W.
Salt Lake City, UT
map it

Growth and development

Back to Categories

Add a new comment

By: Renee          (2:18 PM 11/29/2009)
Nutrition and weight gain to a short gut kid is like trying to climb a greased pole! Sorry for the sarcasm but some days you just feel like it doesn't matter what you do, it just isn't good enough! Do you ever feel like that? For months we have been told to push the enteral feeds, push the oral feeds, especially milk, etc., etc, etc. Then, we end up most of the summer in the PICU because of several big GI bleeds. They tell us not to push the feeds so much. All goes well for a couple of weeks. Then we develop a GI bug on top of the short bowell stuff we normally deal with and we are told to stop the enteral feeds, stop pushing oral feeds, and then people wonder why your child hasn't gained any weight? I'm just venting here but sometimes everyone contradicts themselves and it's the parents who are left to figure out how to make everything work. Sometimes this makes me so crazy. Then our very good doctor called us from his home on the Thanksgiving holiday to check up on how we were doing, you can hear his own children playing in the background (do you know of any other doctor who calls you from his home on a holiday to find out how you're doing?). He reminded me that it's OK to let the TPN take care of his nutritional needs for a while and that eventually our son will get traction on that greasy pole once again. Sometimes I forget. Sometimes it's good to have a reminder.
Re: Nutrition and weight gain
By: Emily H          (4:32 PM 12/04/2009)
While Patrick is completely TPN dependent, I can relate with what you said about how sometimes it feels like it doesn't matter what you do, it's just not good enough. It can be so hard to see a child who you put so much work and so much love into helping seemingly standing still, or sometimes even moving backwards. Especially when it comes to growth and development, in a kid with short gut, so much is out of our hands! I loved what your doctor told you. Whether it's a series of infections, or delayed growth, sometimes you've just got to be patient and wait for them to get traction again. Doesn't make it any less frustrating, though. Just think, though, where your son would be if you WEREN'T there helping to hold him up when things get slippery
Re: Re: Nutrition and weight gain
By: Emily H          (11:04 AM 01/16/2010)
I've been wondering about you Renee.. How is the climb up the slippery pole going?
Re:
By: Tifernenny          (2:44 PM 05/16/2010)
I can completly relate to your problem. Valentino was taken off TPN but they wouldn't take out the line and they would up his enteral feeds and oral but he would then get a line infection and we were back at square one it was a never ending cycle. Now that they have taken out the line I have him eating table food. They had him on 70cc continuous feed 10hr a night and four 6oz bottles plus the table food. He kept having blow outs every morning and would lose weight because they would replace stool every 12hrs which would cause him to stool out more and lose more weight. I had to fight along with the nurses to have them take him off the stool replacement. Long story short it is a vicious cycle that I thought we were out of until his last appt. when they told me that if I couldn't get him to gain more weight then he is gaining then we will have to put him back on TPN and all I kept thinking is here we go again. My question is how much weight do they want a child to gain in 3 weeks? He gained 1/2lb. My other children don't even eat or drink as much as he has to. I talked the Dr. into going down on the night feeds to 50cc/hr and we have taken care of the blow outs (most days). But what is a parent suposed to do when it seems like nothing you do is good enough?
Re: Is what we're doing good enough?
By: Emily H          (3:16 PM 05/16/2010)
The best survival tool I've developed is to try not comparing my son's progress to anyone else. Every child with short gut is different. You can learn from others, but really it's all a matter of learning what your child can do.. pushing them as far as is possible.. and then trusting that you're doing the best you can and that's going to have to be good enough.

Of course, sometimes with doctors' goals as a constant reminder, that can be discouraging. But it sounds to me like you're doing an incredible job.
slippery pole update
By: Renee          (10:38 AM 01/19/2010)
We are still trying to climb that greased pole. We just got over another bout with c-diff and finally took him off the antibiotic for that, now we are struggling with excessive gas and lots of bacterial overgrowth that so far no medication is really taking care of. Doctors are worried that Aaron is so distended that his blood flow becomes restricted. This is the same pattern we have been copying all summer just before we get those terrible GI bleeds. So far we haven't seen any bloody stools and labs seem to be fine but Aaron is very uncomfortable especially if someone even touches his G-tube. The problem is the gas problem is in the intestine and venting the G-tube doesn't relieve anything. We are now trying Refaximine to see if that will help with the bacterial overgrowth as it seems to be the only thing that helps with his c-diff. We've had to slow down G-tube feeds to nothing for several days because he just can't handle the pressure. You know those G-tubes, some people think they are so great, I'm not so sure. It has been such a slow process for us. We get a little ahead and move the amount up per hour just a little, then he gets sick and they tell us not to push it so we slow back down. I sometimes wonder if it does any good at all. I guess the key is to just keep trying.
developmental delays
By: Renee          (10:14 PM 01/31/2010)
I was just wondering how many of you with slightly older short gut children have seen dramatic developmental delays. Our son AAron just turned three. He has such a problem with communication that sometimes I wonder if he will ever catch up. We know his biological parents abused drugs and alcohol and perhaps that is the reason for his extreme delays. He knows and says less than 10 words and many of them are difficult to understand, yet his receptive language is very good. He can understand 3-step commands and does follow directions quite well. Because he is now too old for early intervention, we are just beginning the adventure of looking to the school district to help us further his age appropriate education and development. So far I have not been very impressed with the formal instruction we are recieving. I realize that because of his compromised immune system, I may have to educate him at home. Does anyone have any good ideas or resources for me? We figure Aaron is developemntally about 18 months of age, that's half his life, but then he has been inpatient for half his life too. Can anyone help or give me any encouragement with a good success story?
Neocate Formula
By: PeterA          (10:50 AM 03/09/2010)
I wanted to let everyone know about a new formula we have been using that has worked wonders for our son. It is called Neocate and the proteins are broken down to ensure maximum absorption. Our son has been on the formula for under two weeks and gained 11 ounces during that time. Check out their website www.neocate.com. It is a bit expensive ($39.75/can - each can makes 85mL), but most insurance plans cover it. Even out of pocket, it is well worth it.
Re: Neocate Formula
By: Emily H          (7:34 PM 03/25/2010)
Your son's amazing progress over the past several months is definitely a testament to the fact that this formula is working. Thanks for sharing!
Re: Re: Neocate Formula
By: jessica o          (9:28 PM 09/20/2011)
my daughter was on neocate for a long time an would projectile vomit 10+ times a day they swithced her to elecare which is exactly the same but a little thicker and is doing alot better. the vomiting has gone completely.
Extreme Temper tantrums
By: Renee          (9:41 AM 04/12/2010)
My 3-year old son Aaron has had occassional sever temper tantrums. These are not your ordinary tantrums, He can carry on for two to two and a half hours or more at a time. He bangs his head hard on any surface whether it be the floor, wall, bed,-anything. Last night her was so angry he absolultely did not want to be hooked up to his TPN and even angrily tried pulling out his Broviac. I am an experienced parent, I have 4 other children, one with Autism, one with severe ADHD and a seizure disorder, and 2 healthy children. Behavior modifaction techniques do not seem to work but the thing that is so scarry, is that I have never seen so much anger from a 3 year old. One of my children had frequent tantrums but we'd just put her in her bad, close the door and she'd carry on for a half hour or so and then she'd go to sleep. Two hours plus of screaming and carrying on is a little more than I think is normal. Does anyone have any issues of this sort. My question is, could it be hormone levels that are not balanced, or is he just fed up with everything,Or is he experienceing pain that he can't describe? Nothing seems to appease him when he gets like this. He doesn't know what he wants. We've tried the normal things but they don't seem to work. We are getting 2-3 tantrums a week of this magnitude. If anyone has any ideas please let us know.
Re: Extreme Temper tantrums
By: Emily H          (6:55 PM 04/12/2010)
You are definitely an experienced parent. Which tells me that your gut may be right on this one. You suspect that there might be some discomfort or frustration that he's unable to express. I haven't heard of this as a side effect of SBS, but that doesn't mean it isn't related.

Another thought I had - I know that my cousins with fetal alcohol syndrome often had extreme temper tantrums. Could this be a related to some of those earlier problems Aaron had?

I'll run this past some of the other support groups I'm involved in and see if they have any thoughts. It might be worth asking Palliative Care or someone else at Primary whether or not a referral to social work or behavioral medicine or psychology might be helpful, too.
Re: Re: Extreme Temper tantrums
By: Emily H          (7:10 PM 04/12/2010)
When was the last time he had labwork done? Any indication there that something's wrong? Blood sugar, anemia, dehydration, electrolyte imbalances can all cause irritability.
Anemia & Development Delays
By: Meg          (4:14 PM 05/15/2010)
(I'll get to the reply to development delays a little later in this message)
My son Joshua is now 7 years old. He has surpassed all Dr's expectations for him, no delays, No TPN, No Feeding Tube. In fact a few months ago his GI dr told us he no longer has to been seen unless a problem shows up. And now a problem has shown up. Thursday at school during a concert practice he passed out and 911 was called. The EMT's released him to my care and I imediately took him to see his primary. Blood work was done, and hes shown to be anemic again. The problem is that his anemia only tends to show up after an illness (which due to low amune system he's always getting sick) but lately hes done very well, and hasn't been sick. In fact he HAS been on an iron supplement. So his GI doc asked me to bring him in on Manday for stool test and blood work. Hes worried about a bleed somewhere in his intestine. He doesn't think its a major one as theres no obvious sign of bloody stools. But has anyone here had a child with a bleed. I'm not quite sure just how serious treatment is.
Renee: As for development delays, do you have any Waldorf schools in your area or perhaps one whos partnered with them. They do some wonderful things. While my son is in public school (hes actually in an advanced 1-2nd grade class so theres hope) but I have 2 nephews who are in a Waldorf school. The school is great its more based on creative learning and play which may gear more towards your son, instead of traditional markers of education.

Re: Anemia & Development Delays
By: Emily H          (3:05 PM 05/16/2010)
Wow! Sounds like quite a scare when everything seemed to be going well. Please keep us posted! We'll keep you in our prayers.
Re: Re: Anemia & Development Delays
By: Meg          (5:50 PM 03/13/2011)
Hi Its been so long since I did this post. Shortly after I found this site I lost the link and could never seem to find it again in searches. =) We have answers now, we did test after test after test until his GI doc said that a colonoscopy and endoscopy needed to be done, it couldn't be put off. It was discovered he had ulcers all through the ileum and rectum. Along with much much inflamation. In his esophagus he has alergica esophagitis, inflmation. We've been treating it, the A.E. is under control. However the ulcers haven't gotten better as was shown in his 2nd colo & 3rd endo that was performed March 3rd. We'll be switching meds from Pentasa to something else, along with adding prednisone for his inflamation (something his GI doc wished to avoid). His GI doc thinks he is in the beginning stages of Crohns disease, which was most likely triggered by his SBS.
Now that I've found this site again I'll try to stay up to date. =)
GI Bleeds and Developmental update for Meg
By: Renee          (9:35 PM 05/16/2010)
Our son Aaron is just over 3 years old. Last summer he had four different severe GI bleeds and was putting out 750 ml of blood in a matter 6-8 hours. We were terrified. After having more blood transfusions than I can count, we have learned a thing or two about those bleeds, at least as far as they concern Aaron. We have tried many things but the one thing that seems to work for us is that everyone always tells us is to push the feeds. Push the feeds through the G-tube, push oral feeds, etc. The GI doctors now feel that this was the cause of the GI bleeds. His gas would build up and he became so bloated thus causing the intestine to contract. (Even though we have never been successful with putting more than 25 ml per hour through the G-tube and We only do it during the nighttime hours, plus we use a Farrell Valve that helps the gas issue immensley.) Not knowing how to stop the bleeds posed another problem, A scope revealed that Aaron had several ulcers all over his intestine but the stomach and esophagus looked very healthy and pink, so they could not coterize anything. We finally have learned to slow feeds down according to how bloated he gets and have gotten pretty good at judging when to slow other feeds as well. After spending the summer in the intensive care unit for 3 1/2 weeks for each bleed, we have even gotten pretty good at learning when he is starting to bleed. We did this by asking the staff for a simple test to determine if any blood was in the stool as soon as we noticed any change in the color of his stool during diaper changes, the GI doctors were very willing to write this on his orders. Now I know that at least for Aaron, when his stools turn the slightest bit orange, not the usual yellow color, that he is beginning a bleed and therefore I tone down the feeds. He absolutely hates being hooked up to the G-tube feeds. I often have to put those on after he goes to sleep but lately it even wakes him up for me to insert the button and turn it. It has got to be uncomfortable for him or I know he wouldn't wake up. If he protests a lot I don't bother hooking them at all, and sometimes his weight gain is not as good as they would like but at least the bleeds are manageable and he is not hospitalized, which sets us back in more ways than someone with no short gut kid could never imagine. It has almost been a year since he has had to be hospitalized for a GI bleed. People now cannot believe how great he looks. When people say that your child looks great, take that as a personal compliment as I for one can testify that it is because of a lot of hard work on your part has made it so.

As for the Waldorf school, I have never heard of it. My son with Autism went to Carman B Pingree school for Autism and they worked alot on Behavioral management. These tactics do not seem to work for Aaron. He has been severely sick most of his life, and when he is sick, he is catered to, so it is hard for him to learn that he can't have everything his way. We are working on the tantrums. A sticker for doing lots of positive things is as far as we have gotten to date, we will soon begin to use less stickers though and try to go for a day without tantrums. For the most part he is a very agreeable child but those tantrums, especially when they involve the medical technologies that keep him alive are really hard. Thank you for your insight. Would love to hear more about the Waldorf school! I hope the info about the bleeds helps. Please let me know.
Anemia - GI Bleeds
By: Renee          (8:20 AM 05/17/2010)
It was eventually discovered that Aaron's Ulcers in his intestine were at each place that they did the cuts for the two STEP procedures he had done, one immediately after he was born and another one about 18 months of age. I asked the doctors what would cause the ulcers to form over a year after the last STEP procedure and they do not know. They had never seen these ulcers before but could tell from the pictures they took that there was a legion right at each scar from his STEP procedure. Not enough research has been done about this, infact I have heard my doctor telling interns and residents working with him at various times about Aaron's situation suggesting this would be an excellent topic to study further. Of course, when it comes to kids with extreme short gut, there is so much the doctors don't know and it's up to us parents and caregivers to use trial and error to figure a lot of things out about the management of each individual problem. Just press on and be of good courage! People who don't have to deal with things like this on a regular basis have no clue of the difficult challenges we face, but there is support out there for others like us who are tyring to figure these things out! Keep up the good work!
Soy Formula
By: heatons2          (10:34 AM 09/08/2010)
My daughter recently just had the step procedure done. She came home eating predgestimal(however you spell it) and about two days after coming home she began throwing up every time we fed her and had horrible diarhea almost 8 times a day. So my wife and I tryed Soy Formula and it was like magic she began eating more and hasnt thrown up one single time in 1 wk of beeing on the Soy Formula. And her poops have became alot more solid and are down to about 2 or 3 a day. Today i told her doctor that we put her on Soy Formula and she basically called me an idiot and yelled at me. She told my that babies with Short Gut cant digest Soy, which i have researched and it is supposed to be easier to digest. So she told me to try a different brand of milk based formuaula. So today I went to the store and bought Simliac Alimentum. We fed her it about 10:30 and come 11 she was projectile vomitting once again and now has diarhea, bringing us right back to square one. So Please tell me if i am in the wrong to tell the doctor that she is just gonna have to suck it up and trust me that she might be allergic to lactose products. Because it was like she was a complete new baby once put on Soy Formula. Has anybody else tryed Soy Formula?
Re: Soy Formula
By: Emily H          (12:29 PM 09/08/2010)
Hoping I can shed some light on why your doctor threw such a fit about leaving pregestimil. There are certain amino acid based formulas that allow for maximum absorption and nutrition for patients. The basic structure of these formulas is different, simpler, and as a result is easier to absorb. Pregestimil is one. Elecare and Neocate are others. They're the kind of go-to formulas for patients with Short Gut because they're proven to be able to be absorbed when the gut can't absorb anything else.

The intestine is actually made up of different segments, each designated to absorb different types of nutrients. When parts are missing and you're trying to adapt, you may need a special formula that's more basic and easier to digest.

Soy isn't amino acid based, it's not one of these simple formulas... which is probably why your doctor freaked out. That said, if your child is allergic to lactose, you're may have to explore non-lactose options because you're obviously not going to get anywhere if the body rejects the formula outright and it never makes it into the system.

If your doctor is pushing for you to try different lactose-based formulas, you probably need to go simpler, not more complex. Pregestimil is the only short-gut friendly formula I know of that you can get in stores. So if that's not working, you might see if you can get samples of Elecare or Neocate. (I know my hospital's dietician always has samples or sample request cards on hand for these products.) But I wouldn't go to another off-the-shelf brand.

You may need to involve an allergist and/or dietician in this case because you're dealing with something much more complex than your average parents of an otherwise healthy child discovering a lactose allergy. Your child has different nutritional needs and it may be that you need to experiment with different brand or concentrations of formula to find something your daughter can both tolerate AND absorb. And the solution may not be something you'll find on your own in the grocery store.

Hope this helps.
Re: Re: Soy Formula
By: Emily H          (9:22 PM 09/17/2010)
A follow-up on this answer. I've recently done some research about formulas. Both Elecare and Neocate are specifically designed for use in cases of food allergy and short bowel syndrome. The proteins in these formulas are simplified, making them easier to digest and absorb - and hypoallergenic.

For more, see:
http://www.neocate.com/aaa_neocate/433-neocate-and-atopic-diseases.html
http://elecare.com/when-elecare-can-help-feeding-issues
Re: Soy Formula
By: Kapi's Mom          (3:51 PM 09/23/2010)
I agree with Emily, when my daughter was in the hospital, they also pushed for Pregestimil, and neocate, and none agreed with her. So during her 10 weeks hospital stay after her surgery, she was on TPN, and I was giving her breast milk. The doctors were pushing for her to have at least 24 calories of formula. She tolorated the Neocate,to a point. She still had frequent diarreha, and some vomiting, but when I brought her home, I started to do research and compare all the formulas out there. I decided just like you to try a different formula. I didn't try a soy formula, I tried Nutramigen, and just like you she had less poop diapers,no vomiting, less gas, and fussiness. I continued to give it to her till her next doctor appointment. He was shocked that she was tolerating it, but her doctor had no problem with it. Every baby is different, and its a trial period. Within the GI medical group my daughter goes to, they have 4 doctors, and I went through all of them until I found the one that I felt met my daughter needs... EVERY doctor is different and has their 'Method', but with my experience I am my only daughters advocate, and believe me, I'm glad everyday that I didn't just accept things.... She is 14 months now, and hasn't been on TPN since Jan 2010. She eats alot of different foods, all organic homemade baby foods, because I found that even though the baby food was organic, she couldn't tolerate it. If I made her applesauce from organic apples, she had no problem. So again it's that trial and error.... I wish you the best of luck. and YOU did nothing wrong as a parent! I have a shutterfly website that I am working on, but you are welcome to look at it, and see our family. Its KAPIOLANI.SHUTTERFLY.COM
Re: Re: Soy Formula
By: becky          (3:57 PM 10/29/2010)
I would love to have a chat with you. I'm really struggling to find foods my son can tolerate and we're at a critical point with him just of TPN with no central access. He continues to vomit and unfortunately a change of formula milk will not be considered by his Dr or Dietician. Any ammunition to support a change would at least give me back some control over my Josephs progress.
Re: Re: Re: Soy Formula
By: Emily H          (4:00 PM 10/29/2010)
What formula is Joseph on now?
Re: Re: Re: Re: Soy Formula
By: becky          (4:01 AM 10/30/2010)
He's on pepti junior. At a time when modular feeding was feasible the dietician refused and I remain convinced that although it is hypo allergenic it doesn't agree with him as well as it could. He was breastfed for 4 months but this was sham feeding so difficult to judge whether he would have tolerated it better at this point.
Re: Soy Formula
By: Emily H          (10:32 AM 10/30/2010)
There are two other widely used formulas for short bowel syndrome. One is Neocate. The other is Elecare. Patrick does best on 15 cal/oz elecare, the standard for his transplant hospital. Here are a couple of articles you coudl maybe use to support your argument for trying something different.

http://elecare.com/short-bowel-syndrome-treatment-symptoms

http://www.neocate.com/aaa_neocate/433-neocate-and-atopic-diseases.html

Both are amino acid based and entirely hypoallergenic. Elecare is, for some children with severe allergies, the only food they can tolerate. Patrick's allergic to milk and milk proteins (hives with even the smallest contact).. but does great with Elecare.

Elecare comes in a nasty flavored plain (Patrick's preference) and vanilla (which is tolerable even for me, so long as it's chilled.) Neocate also has chocolate and fruit flavors.
Re: Re: Soy Formula
By: becky          (3:46 PM 10/30/2010)
Thanks. I'll do my homework ready for my next appointment and see what they say!

Re: Soy Formula
By: becky          (3:54 PM 10/29/2010)
All credit to you for standing your ground. I have nothing but respect for all healthcare professionals but sometimes a mother's gut instinct has to over ride all pre conceived ideas even if they are based in research. Every child is different and I also find it very frustrating that information and knowledge my Dr and dietician has gleaned from another child with similar problems is presumed to be best for my son!
Re: Re: Soy Formula
By: charlyn          (12:50 PM 02/02/2011)
I agree with Becky! When my son was still in the hospital they kept pushing him to take Pregestimil. He had more frequent stools and he vomited more. The nurses noticed it too and I confronted the doctors about it. They said that was the better choice (vs. Elecare) and didn't change it. Well, less than a week later he had water-loss stools and we had to start from square one.

I am very thankful of how well they have taken care of my son, but they should have listened and opened their eyes and seen what was happening. Carsen is on continuous Elecare and he's doing great!
Soy formula alternative
By: Bree          (3:32 AM 12/05/2010)
Hi my daughter is 11mnths old with short gut and we found the pre-digested formulas such as noecate incresed her bowel motions. I am in Australia so not sure if karricare formulas are available there but it is the de-lact formula we use. This is recommended at one of the major hospitals here and we have found it better than any of the other formulas. As always every child is different but if you want an alternative to soy this is great.

milk is a problem
By: jessica o          (9:41 PM 09/20/2011)
my daughter is 2 years old and has sbs. she has been on neocate whiched caused her to vomit alot more than anyone should ever have to. they switched her to elecare and it has been wonderful. she wouldnt eat or drink by mouth until she was 14 mths old. now she eats and drinks EVERYTHING but things with sugar. they have her on a high fat diet with lots of grease, butter, and oil. they are trying to put her on pedi peptide since elecare is an infant formula. they hope that with all the different flavors she will drink it by mouth so they can get her off the g-tube. for some reason she will not drink anything milk based or even resembles milk in any way. no one seems to know why. does anyone else have this problem?

also, my daughter was 3 moths premature. her corrected age is 21 mths an her weight is at the 10%. she is so thin an very petite. it scares me. she eats alot by mouth along with her g-tube feeding of 48 oz a day. no matter what we do she hasnt gotten over 22 lbs in weight and this worries me. does anyone have advice on what i can maybe try?
Re: milk is a problem
By:           (4:31 PM 01/20/2014)
My grandson does not eat, he is losing muscle and strenght, and is the same thing nobody knows why, he does not like different foods
apple peel syndrome
By: karenw          (10:47 AM 05/24/2013)
Just to let you all know I was once a very very poorly girl. Was born with apple peel syndrome and even after surgery to remove a majority of my bowel in 1978 I was given a max of 2 years. I had every complication that came with short bowel syndrome. I didn't grow the same as other kids and was doubly incontinent as well as the pain until I was in my teens. I even remember the first time I tried running at 7. I fell over and broke my leg because of weak bones due to rickets. And after surgery at 7 while in a plaster cast to remove a blockage in my bowel I never gave up hope that one day I would be more like every other kid . It took until I was 18 and after surgery to correct curvature of the spine that things calmed down and although I live with tummy problems from diarrhea to impacting of the bowel I work and almost manage to live a life like everyone else. Your children will get there never give up hope of that. Karenkilmurray@gmail.com
apple peel syndrome
By: karenw          (5:20 PM 05/24/2013)
I am 5ft 1 and 8 stone so I did catch up to be a healthy height and weight just took me longer. To look at me unless you looked under my top and saw my scars you would never think I have been through what I have. The scoliosis I would guess is connected to the malobsotion of nutrican to my bones but I was a sloucher and prone to this without knowing so it could be something to be aware of but not overly concerned
not gaining weight
By: Neshme          (7:24 PM 01/19/2014)
Hi, my name is Neshme and my grandson has half of his small intstine, he is 5 years old but little by little he is been losing weight, he is a very picking eater and he does not have any muscle, I am desperate, we live in South Texas and there is only one gastroenterologist, which is not help. Please help me
Re: not gaining weight
By: iluvmylil1s          (8:24 AM 01/26/2014)
Hi, my daughter is almost 8. She had 30% of her small and 50% of her large after surgery the day of her birth. She grew until the tpn was taken away in which case she quit growing. From ages 3-6 (2009-2012)she weighed 30-33 lbs. In the past years, (2012-present) I started an all organic diet and she is now 47lbs! Most of the growth was seen this past year when I became aggressive with the organic diet. She is a great eater tho. What types of foods does your grandson like? I am very strict with my children on what they eat, I won't give into empty calories often. Lol. I hope this helps and I hope to hear more from you :)

Add a New Comment

You must be logged in to post.
Click here to login.