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Hi everyone--

My 13 yo has been on remicade since Christmas.  He felt good and started gaining weight back right away, but we are only now seeing a change in his height (almost an inch in the last month).  Our GI and NP said this was typical for kids with Crohns-related growth delay--that they have to be in remission for several months, and put on weight, before you see linear growth. 

Just wondering if any of you have had a similar experience?  Id be interested to hear from any parents of kids who have (or havent) hit their growth spurt.  Thanks...

 Reply posted for sandpiper.

Son has severe ulcerative colitis,De wants to start him on Remicade,what's everyone's thoughts

 Reply posted for taysmom.

Thank u for openly sharing...,we r just beginning our journey and it is so nice to hear so many success stories...our son is 14, 4'11" and on!y 71 lbs... We are seeing specialists now to determine what  treatment plan to begin...

 Reply posted for sandpiper.

My son was not diagnosed until he was well past his growth spurt, at age 25. He is 6'6" and lost 40 pounds very rapidly. It was very scary for me as a mom. At his last appointment, he has regained the 40 pounds. He has been on Remicade for nearly a year now, after a week's stay in the hospital last year. Hope this helps.

 Reply posted for MudCrazyJan.

I was reading your post and you might ask your doc if it's worth checking if your son is done growing?  They can tell whether bone growth is complete or not by checking a bone age (it's an x-ray), but I don't know how useful at 18.  You know kids with Crohn's often lose at least an inch of their projected adult height...

 Reply posted for sandpiper.

I am so excited for Matt and how well he is responding to remicade. We are hoping for the same results. Is there anyway Matt or you could e-mail Marty our home e-mail harrissix@comcast.net to lessen his apprehensive with starting Remicade on Wednesday? Thanks for sharing your encouraging results with Remicade.

Jane

 Reply posted for 22.

Hi,

I know it will help Marty.

Matt just had his checkup/sports physical with his general pediatrician.  He has grown 2 inches since the mid-May.  Remicade, and we think remission, since January.  Wish you the same.

 Reply posted for sandpiper.

Marty had his GI apptmt today and we are going for his first remicade treatment on Wednesday, Aug. 5. The doctor based his decision on no growth or weight change in the past 15 months at Marty's age of 14. We are praying and hoping this helps him.

Chron kids are sure fighters and tough..

Jane

 Reply posted for sandpiper.

My 18 y.o. son was diagnosed in Jan. 2009 with Crohn's after having symptoms for about 5 months.  He has had 5 Remicade infusions, the last 3 being "double" doses.  He went into remission in early February '09 and only stayed that way for four months.  He has been having a flare since this past May.  He had a double Remicade two days after the flare started and is now taking prednisone, flagyl (not sure why on this one), asecort (sp), calcium/vit. D and Rowasa enemas.  He is due another Remicade this coming Friday. We have our fingers crossed that this dose will put him back in remission.  He just turned 18 this past June.  He has not grown in over a year and at his worse this past winter had lost 20 pounds.  He managed to gain 10 back during his 4 month remission.  Anybody have any thoughts whether he might grow if we can get him into a longer remission?  He's only 5'9", doctors always told us he would be at least 6'.  I would appreciate any comments.  Thank you.

 Reply posted for sandpiper.

My daughter was diagnosed with UC when she was 11 and she is now 13. She was always very small for her age and was always the littlest in her class. She dropped to 46lbs. when her disease was at its worst. She has now been on Remicade for a little over a year and she is finally the same size as her friends that are her age. Her doctor told us that as soon as we got the disease under control she would grow to the size she would have been had she never been sick and she was right. She is now 5'3" tall and weighs 96 lbs. Looking at her today you would never know she has the disease. I can't say enough about Remicade and how it has helped her be a typical happy teenager. I hope your son has the same luck with it!

 Reply posted for 22.

Yes, when you go make sure that Marty is really in remission...that might be part of your answer.  I read that girls with active Crohn's can be more symptomatic and feel sicker, while in boys active disease can have fewer symptoms but more growth problems.

I thought of one other thing--our RD said Cheetos are one of the most calorie-packed foods you can eat...(so we moms must stay away from them ourselves!)

We went for remicade #5 last week and the growth spurt I thought I was starting to see is official--Matt grew almost an inch since his last IV 9 weeks ago.  That's just when they predicted he would start, 6 months into remicade.  So glad.

Good luck and let us know how you do with your August appointment :)

 Reply posted for sandpiper.

Thanks again for your response. Marty has an appointment in August and asking if his meds are adequate is a great question.

Yes, thank goodness, Marty does like peanut butter, but unfortunately wouldnt think of eating legumes or tofu, so our dietitian appointment will be interesting. His appetite has also increased, so Im trying to fill him up with calories of what he can tolerate.

Great news about Matt growing!!

 Reply posted for 22.

Hi,

We're lucky that Matt likes dairy, he does a lot of whole milk and cheese.  Loves steak too.  I know our dietician told us peanut butter, does your son like that?  We try to push the protein foods at each meal--like last night told him to eat more grilled chicken and less potato.  He is not as fond of legumes and tofu but that might be a good source too...

Not to push meds, but think about remission = growth and whether your son's therapy is adequate.  Matt felt well on 6-MP--good symptom control--but his appetite shot up just days after remicade, and now 6 months into treatment we are finally seeing some growth in height, just like his doc/NP predicted...

 Reply posted for sandpiper.

Thank you for the information. It is nice that we can relate to one another. Unfortunately this disease is so individualized and complicated. The instant Carnation is a great idea and I have encouraged my son to drink it, but unfortunately he doesn't tolerate milk or ice cream even though his test results show he isn't lactose intolerant. What are some food items on your son's high protein diet? We have a RD appointment in August, so I'm hoping to get more ideas.

God Bless!

 Reply posted for 22.

I am glad to hear there are other boys same age, same issues.

Our GI says in order to grow 1) get in complete remission, which for us took remicade, not just the (reasonably good) symptom control he had on 6-MP 2) avoid steroids and 3) relentless nutrition.  We use a high-protein diet and lots of instant breakfasts and shakes.  I do make my son eat or have a shake even if he isn't super-hungry, he is good about that.

There are trials of growth hormone, but from what I could tell they were enrolling kids < 10th percentile, which my son doesn't fit (he's more like 25th).  Don't think it is used as standard therapy yet (meaning if nothing else that it would not be covered by insurance, and it's more expensive even than the biologics).

 Reply posted for sandpiper.

My son was diagnosed with chrons disease in April of 2008 as he was turning 13. He is barely 5 feet and weighs 91 lbs. He has been at this weight and height for over a year. He is currently on 6MP, Pentasa, Entocort and Vitamin D. His symptoms are mainly stomachaches throughout the day, with occasional diarrhea. His St. Paul, MN, GI doctor told us in January that if he doesn't grow by August we would address that issue then, which we will have to. What are some treatments that anyone has had success with that has increased their child's appetite so they eat more and begin to grow?

God Bless anyone with this disease and their caregivers. Keep praying for a cure!

 Reply posted for sandpiper.

Hi. My 13 year old is doing about the same, he's been out of his flare for almost a year and he's only grown about an inch as well. He's put on 30lbs in the year and is very anxious to start growing heighth wise. His GI and RD told us the same thing. He's starting 8th grade and is only 57 inches, we're really hoping he hits a growth spurt this summer!