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My 13 yo has had CD for 1 y (maybe 2 y if I think hard about his appetite and look at old photos).  He's doing well since moving to remicade a few months ago. 

He is short (5') and skinny (barely 80 pounds), and this is WITH gaining weight and muscle mass back since starting remicade.  He is barely up to the shoulders of the rest of the kids on his 13-14 yo Little League team.  Our GI says we'll need to get his body mass index up before we will see catch-up growth in height. Goal is 2700 kcal/day. Working on that, hope to meet with dietician soon but haven't yet.

Is anyone else dealing with growth issues in Crohn's, or have any tips about nutrition?  Getting that many calories in is tough; even though it seems like he eats all the time I think we are still falling short.  I know about nighttime NG feeds but hope we can avoid that since he feels great and wants to eat.

 Reply posted for sandpiper.

thank you for writing, i am glad your daughter is doing so well.  it sounds like you have been a great advocate for her.

i would love to know more about the growth hormone study your daughter was in...do you recall if there was a certain percentile of height that qualified her?  what else can you tell me about it?  i have wondered if i should look into gh...we have time because my son's bone age is only 11 (he's 13 and a half) but i wonder if, as you said, we are putting too much faith in the "now he's in remission so he'll grow..."  (although he sure is gaining weight and muscle on remicade, at least).  did you start with your gi?  an endocrinologist?

with regard to the social piece, my son loves sports, and he doesn't have the power of kids who are now suddenly inches taller and 50 pounds heavier.  (he plays mostly baseball, and size isn't quite as important, but this year it is starting to matter).  he's a good sport about it, but it is an issue--and of course i do worry about his adult height.  at least his bone age is delayed (which might be crohn's but my healthy niece also has this issue--maybe heredity) so he has time to grow.

thanks in advance for your advice.

 Reply posted for sandpiper.

My daughter, now 10, was diagnosed with Crohn's disease when she was 7.  She is the smallest child in the entire 4th grade (4'1", around 55 lbs), and right now she is hating it.  She has been off of all medications since last November, and while she is doing great, physically, she hates it that she is so short.  She has continued to eat what she wants, and backs off if she reacts adversely to any particular food item.  While we try to schedule 3 main meals a day, we encourage her to eat whenever she feels like it.  I believe that her small size is a combination of heredity and Crohn's.  Her biggest issue is fitting in and feeling "normal".

While I have always encouraged her to get involved in any activity that she's interested in, I admit that I'm glad that, until now, she's not been interested in sports.  This summer, however, she wants to go to basketball camps and play on the school team next year.  I am so afraid that because of her size she will get hurt.  However, there is no way that I am going to discourage her from becoming involved in a team sport.  She's always stayed away because of her size, but now she's convinced that her size will be her her best asset.....even though she hates it.  

 Reply posted for sandpiper.

It's interesting to see that most of you  who are discussing growth issues have sons.  I have a daughter and she has been through a number of growth and maturity issues that I want to share with you so that she may help others.

She is now 18 and people used to mistake her for 9 when she was actually 13 and then 13 when she was actually 16 or 17. Growth and maturity issues have been more difficult to deal with than the actual pain of the disease.  She was diagnosed about 10 years ago.

She has done and taken just about every known medicine (steroids,.., Remicade, and now Humira).  She also had over two feet of her colon removed. In addition, she was part of an experimental study for nearly 3 years looking at the use of growth hormone and Crohn's.  We are happy to report that she is now a petite 5 feet (110 pounds) young adult who people are no longer "surprised" when she tells that she is 18. She started her period 2 months shy of her 18th birthday which we worked on for several years with the use of hormone patches.

What I would like to say is continue pushing for ways to improve your child's growth.  Doctors will continue to tell you that the "disease must be in remission" but keep asking and pushing for answers and solutions.  Doctors will also tell you that your child will "catch-up," but this is not always true, especially if their bone age scans reveals that growth is nearly complete.

Help your child by encouraging them to get involved in sports and activities that do not depend on height.  My daughter became a cheerleader.  Also, be careful in how you question their "dating life."  They are often uncomfortable with this because of their size and lack of maturity.

Most importantly, make sure that your child keeps up his/her self-esteem and sense of humor.  Whenever people questioned my daughter's age, I encouraged her to say, "Yes, I know I'm lucky, I look great for my age!"

 Reply posted for ljuan731.

Scandishake is made by Axcam Pharma:

 Reply posted for aloinca.

Can you tell me more about Scandia shakes?  where do you get them?

 Reply posted for sandpiper.

This is my first time posting, though I have been a faithful reader of CCFA for a long time.

My 13 yr old son has had Crohn's for 5 years now. We are still waiting hopefully for that remission.  He has been on azathioprine and Remicade from the beginning.The remicade has worked somewhat for him.

He is also small, not even 5 ft yet and still under 60 pounds, we are now discussing tube feedings  in near future ,we are giving Remicade or Humira another try.  He seems to stricture after the last 3 remicade treatments and has to have rectal dilitations. He just had second colonoscopy and his crohns is located mostly in rectal area.

My heart goes out to all Moms and caregivers. It is not easy to deal with watching your child be sick .  Stay strong!!!

 Reply posted for sandpiper.

We jump started my sons growth with high calorie, nutrient dense shakes, like Scandia Shakes, and Optimental formula.  He is now age 20, 61" and 170 lbs.  (Still very skinny, but heavy bones, I guess!) At age 13, he was 5" and 85 lbs.

 Reply posted for sandpiper.

My son will be 18 years old next month and is only 5'1 and 89 lbs.  He was put in the hospital Sept. of 2007 when we found out that it was Crohn's.  He is on Asacol, 6MP, and Prednazone.  The dr. just uped the 6MP last month and this past week he started sleeping through the night.  First time in years.  He misses alot of school and my husband gets mad about that.  But the school has a special form that protects my son with his illness.  The dr. is wanting to start humira soon.

 Reply posted for fushiastarz.

Our boys are exactly the same size :)

I too was surprised to learn how big an issue growth delay is, especially for boys.  I saw something saying that while girls can be sicker/more symptomatic, boys have more growth issues.  I think they often lose an inch or more off their projected adult height (but at least it sounds like you are starting with 6'1"!)  I guess we are lucky that our son is feeling so well/not having symptoms really and that growth is our biggest problem, I would rather this than having him feel sick like he did before he was diagnosed.

I saw on this website that there are now studies of giving kids like ours growth hormone...too new to help us right now though I think...

I'll post something after I meet with the nutritionist (we are going next Monday) and let me know if you get any helpful advice.  good luck!

 Reply posted for sandpiper.

WOW I have learned a lot reading this thread.  I have a son 14 (15 next mo), 82 lbs 5'2".   He was dx'ed in late Aug '08 with Crohn's. 

I did not realize how important it is to gain weight in order to grow.  Our local GI said he should eat anything to add weight.  I see from this thread, I need to get with a nutritionist.  Time is flying by and his opportunity to reach 6'1" like his brothers is evaporating.

Thanks for the ideas.  I hope he can tolerate the shakes.  An NG tube sounds dramatic.

 Reply posted for mlclarke.

6-MP does work well for some kids.  I think once your son gets off steroids, you will see whether he has breakthrough symptoms (ask your doc what to watch for), and how his growth and weight are.  That will tell you whether he is in remission or not.  Some kids dont tolerate 6-MP (side effects, or if his blood tests are off), docs watch for that.

My son felt OK on 6-MP, and his blood tests were fine, but was slowly losing weight on it, and after about 6 months we had to change therapy.  I didnt realize until we moved to remicade how poor his appetite had been, or that he really was having low-grade symptoms on 6-MP (stomachaches, rectal pain), but just dealing with them.

I know CHOP.  I wouldnt hesitate to get a second opinion there if you have any doubts.

 Reply posted for sandpiper.

We have already started a growth chart for my son  Noah.  A brief history of his diagnoses is he was misdiagnosed and treated incorrectly by the first dr. we saw.  Since we live in a small community I was limited (only 1) dr. in our area.  I went to his ped. dr. and told him I no longer wanted to go to him and he referred me to another dr. about an hour away.  This dr. did some more testing that should have been done first.  We just found out last week it was Crohn's.  Currently he in taking 1500 mil Pentasa, 15 mil predizone (down from 40) and has been taking since Jan., 75 mil 6-MP and vit. D.  His last blood work showed he was low in vit. D, low in 6-MP and high on his liver count.  We just did more blood work Monday and haven't heard the results yet.  How did you know that 6-MP didn't work for your son?  And is this common?  And if it does work, will my son have to be on it forever?  I would love to get him off so many pills.  I do make him drink Ensure for the nutrients (which he hates).  The Crohn's is only internal (small and large) although he was complaining of his joints hurting the other day!  In completing the new tests, my son chickenpox vaccination didn't work and now he is unable to get this vaccination.  Have you heard of CHOP hospital?  I'm thinking about taking Noah there?  Thanks once again for all you help.  I always go to the dr. w/tons of questions but always think of more!

 Reply posted for mlclarke.

Hi,

Here are some things I would ask:

what symptoms does your doctor want you to track so he/she can judge how your son is doing?

where is your son's Crohn's (what part of his intestine), and is anything going on outside of the intestines? (some people have skin or joint problems, for example)

how's his nutritional status, vitamin D, iron levels? and how's his growth curve?

how long is he going to be on steroids?  after steroids what will your doctor use to keep the disease under control?  Some kids get imuran or 6-MP.  But your son shouldn't be on steroids long-term.

FYI remicade is a antibody against a chemical that stimulates the immune system.  It's an infusion every 8 weeks or so.  Usually not first line, my son was on 6-MP first but it didn't work that well for him.

Hope this gets you started.

 Reply posted for sandpiper.

Thank you so much for your helpful response.  I have to say I'm not sure of much of what you did say however!  I've read several times about "remicade".  What is this? Also, what are the  night feedings?  Do you know of any specific questions that I should be asking his dr?  My son is only 11 and we both are trying to learn about this disease.  I still feel as if I'm completely in the dark.  I've just purchased several books to try to read and understand better.  Right now I'm just trying to make him as comfortable as possible.  To add to everything else he had to get glasses this week.  Poor guy.  I don't ask my self, "what next" because there seems to always be something.  Thank  you again for your quick response.  It's really nice to talk to someone that can understand what I'm going through.

 Reply posted for mlclarke.

Hi,

I remember the first few months, they were horrible and scary.  It gets better.  At least the fear of the unknown does, and you realize your son (and you) can live with this.  Hang in there. 

Our GI said at our last visit that the three things for growth were 1) get in remission 2) get off steroids and 3) aggressive nutrition, hopefully oral, if that doesn't work via nighttime NG feeds.  (We couldn't accomplish 2) without 1), that's why Matt is on remicade).  So I'm thinking we will give oral a try for six months or so...We feel like we can give it a little time because Matt's bone age is quite delayed, so he's still got a few years in front of him to achieve some height.  I know that there are trials of growth hormone therapy in kids with Crohn's as well, although I imagine you'd have to be in a study to get it.

Hope this helps and good luck.

 Reply posted for clapperapril.

Hi,

Thanks for the tips--we are doing Carnation instant breakfasts, but he will love hearing that he has to have Cheetos!

How is your daughter doing?

 Reply posted for sandpiper.

We just found out this month that my son has Crohn's.  It has been the worst few months for me as a mother.  My question to you parents is:  is there anything I can do for my son, to be proactive, to avoid growth issues?  My husband and I are short people as it is and he was never going to be a "tall" man so I am more concerned about it now with the disease causing problems.  He has mentioned it several times to me about being short and his brother has just passed him up.  He is not under weight at the time but is on a lot of steriods right now that he's gaining a lot of weight.  This has been all so overwhelming to me as a mom and I have so many questions.  I live in a small community with no support group so I'm grateful for any help I can get.  Thank you in advance!

 Reply posted for sandpiper.

Hi Sandpiper.. were dealing with the same issue.. my daughter was diagnosed with Crohn's disease 2 years ago.. They have told us simple things like Carnation Instant Breakfast (Choc -more calories) in the powder and whole milk.. will give you about 280 calories in one drink.. also any shakes or Cheetos.. 360 calories in about 2 ounces... The nutritionist can help you work out a plan that works for your child.. They had given us hand outs... because we too were trying to avoid the NG feeding at night...

I hope this helps...

 Reply posted for sandpiper.

Hi, I'm pretty new to this website, my son is now 16, diagnosed two yrs. ago with uc which has now changed to chron's (because he showed symptoms of both at the beggining). he was on a stage 2 ibd diet for about 8 months and very gradually advanced to stage 4 and because of the steroids HE ATE A LOT .he has taken too many different meds but nothing helped with his weight at about 87 lbs. he is 5'1 and weighs 107 lbs. now but  my 12 yr. old son is just as tall as him and maybe weighs a little more. because my son doesn't have much time left for growth like any "normal" kid, his gi doctor suggested an NG tube, which he has had for two months, don't know how much longer but we've had good results so far. he's actually gained the target weight of 10 lbs. I cannot stand to see him with the tube, but I know it's for his own good, he has been hospitalized three different times since his diagnosis and has suffered so much, but I admire him because I wouldn't have endured half the things he has, he's quite the little brave man. I can't tell you what to do but I understand you. talk to your son and explain what the bennefits of having an NG TUBE are on the long run. in my son's case eventhough he was eating, taking prenatal, folic acid, iron, calcium and vitamin d plus scandi shakes which have like 600 calories per can his body was just not absorbing the nutrients.
I hope this helps you in some way.
Carola

 Reply posted for mysonsmom.

thanks to both of you for writing--I will check out the GNC shakes--fortunately Matt likes everything and does fine with dairy so they  might help.

 Reply posted for sandpiper.

Hello, I just read your post and My son is 25, diagnosed with UC 3 years ago..He has been on Remicade for about 1 year . When He left the hospital after a 3 week stay last year he had lost about 40 lbs. My healthy son is a bodybuilder /personal trainer and told Bob to try making high calorie milkshakes using "Weight Gainer" from the Vitamin Shop or GNC, and adding icecream, banana, pnutbutter etc. It comes in many flavors. Bob took his advice and added a shake to his diet, everynight before bed time and he gained weight back wonderfully. Of course, we ran it all by his doctor first, and the Dairy did not bother him at all so all of that would have to be considered as far as your sons tolerances go..but if those things agree with him then I bet it will help him too.

Good luck to you and your son.

 Reply posted for sandpiper.

Hi,

My son was diagnosed with Crohn's at age 11.  He had growth failure as well, he had the average height and weight of an 8 or 9 year old.  Besides steriods and Pentasa the doctors prescribed NG tube feedings.  I was taught the NG tube procedures and my son tube fed overnight while he was sleeping.  He didn't like the idea of the "nose hose", but many bribes later this nightly routine became habit.  So in addition to the calories he ate during the day, he had an additional 1200 vitamin rich calories throughout the night. 

All supplies and the formula were delivered right to my house by a home health care company.

My son is now 14 and has had a rough 2 years.  He now weighs 170 and is over 5'2".  His doctor also said, he must put on the weight before he begins to grow.

Karen