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09-11-2017, 08:03 AM   #1
Try4Resilience
 
Join Date: Sep 2017
Location: CONCORD, Massachusetts
Will my son grow?

Hello
New to the forum. This past May 2017 my son (14 yo) was diagnosed with Crohn's but it took all summer to get him on the right meds (started with 6MP and PEN but due to a violent allergic reaction to 6MP after 30 days fought with insurance company to get on Humira). He lost 30 lbs a couple of years ago and hadn't gained any back, also fell from 75% to 35% percentile on height. He started high school and keeps complaining how the other kids are all way taller than he is. Symptom-free for the moment and finally started gaining weight after starting Humira (has been on it for 6 weeks). I've read some things that say kids will catch up on lost growth, others that he will start growing again but not gain back the lost years of growth. Any of your stories would be so helpful.
Also, as related to the threads on people worried about cancer from Humira, I'm worried about that also....but my first husband (son's biological father) died of small bowel cancer from undiagnosed and untreated Crohn's!
Thank you to all.
09-11-2017, 08:12 AM   #2
my little penguin
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Has he tried een ( exclusive enteral nutrition) formula only ?
Some use it to introduce remission
Others use it help introduce weight gain and growth
Ds uses 50/50
50% food 50% neocate jr
He was dx at 7 and will be 14
This allowed him to catch up on weight and growth quickly
He was humira for over 5 years before it stopped working
He just started Stelara and waiting for that to work


Some use kids boost or pediasure
Others need broken down formula like peptamen jr (semi elemental)

Good luck
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DS - -Crohn's -Stelara
09-11-2017, 08:19 AM   #4
Tesscorm
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Hi and welcome to the forum.

Glad that humira is working and your son is now symptom free!

As far as weight gain/growth, has your son's doctor discussed Enteral Nutrition (EN) with you. Many of the kids here use supplemental EN, which are nutritional formulas, to help with weight gain and growth.

My son was 16 when he was diagnosed and lost 25 lbs, going from 145lbs to 120 lbs, before finally being diagnosed. His initial treatment was exclusive EN (diet was formula only, no food) for six weeks and then supplemental EN for another two years (with a regular diet added back). Over those two years, he not only regained the lost weight but went to 175 lbs (healthy weight, ie developmental, muscular, etc. type weight).

Even though he eventually started remicade, he has since continued drinking 1-2 Boost shakes each day. It helps add to daily calories and nutrition. As he is away at school, the shakes have also become an easy and convenient breakfast and sometimes replaces an otherwise unhealthy fastfood meal.

Most of the kids here are on some level of supplemental EN. There are various types (ie some are more easily absorbed if absorption is a problem) and brands of shakes (ie flavours, tolerance, etc.).

If you do a search for Enteral Nutrition or EN, you should find lots of threads discussing this.

We all worry about the side effects of the meds but we're all also much aware of the side effects of untreated crohns. While I will always hate that my son is on these meds and always hope to hear of a safer treatment, in reality, the risk with the meds is quite low. A close friend's brother just recently died of bowel cancer - he did not have crohns nor was he on any meds. It was scary to hear as it brought my fears to the forefront but I also consider that my son is monitored much more closely than the average person and any test indication would be investigated so much sooner than for the average person.

__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
09-11-2017, 08:55 AM   #5
Try4Resilience
 
Join Date: Sep 2017
Location: CONCORD, Massachusetts
Yes he tried EEN and PEN. Ensure worked so well (we gave it to him to boost growth before we knew it was Crohn's) that we lost three months for the diagnosis as it halted symptoms. He tried EEN and it failed. We did PEN 50/50 this summer and it took away symptoms but highly elevated inflamation markers mean it didn't fully work. That's why we went on Humira. FYI for others, most 14 year old boys diagnosed at 14 fail on EEN and PEN, according to several Crohn's specialists I have talked to all around the country. He won't drink Ensure or any related anymore! I hope that he can stay on Humira till he is an adult and then he will do 50/50.


Has he tried een ( exclusive enteral nutrition) formula only ?
Some use it to introduce remission
Others use it help introduce weight gain and growth
Ds uses 50/50
50% food 50% neocate jr
He was dx at 7 and will be 14
This allowed him to catch up on weight and growth quickly
He was humira for over 5 years before it stopped working
He just started Stelara and waiting for that to work


Some use kids boost or pediasure
Others need broken down formula like peptamen jr (semi elemental)

Good luck
09-11-2017, 09:30 AM   #6
pdx
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Glad to hear that your son is gaining weight lately--that's a good sign that his intestines are healing.

My daughter was 97th percentile for height until she was 7 years old. From 7 to 12, she steadily dropped down to 50th percentile. She was diagnosed at 12, at a height of 5'1" and weight of 70 pounds. Three years later with her Crohn's well-controlled, she's 5'7" and 125 pounds, and her height is back to 90th percentile.

So she's almost completely caught up in height. Your son is a little older than she was at diagnosis, but since boys typically hit puberty later, I think he has a good chance to catch up with his growth.

I can understand why your son would be sick of nutrition shakes by now, but I would keep working on trying to get him to drink a couple a day--I think it would help with his growth. My daughter did EEN for a couple of months after diagnosis (in addition to treatment with Remicade and methotrexate), and then did supplementary EN for several more months, and she gained about 25 pounds during that time.

Kids typically gain weight before height, so let your son know that anything he can do to help increase his weight will help him get taller in the end.

Hope Humira continues to work well for your son!
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
09-11-2017, 09:37 AM   #7
my little penguin
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Not een as a solo therapy -
But as an adjunct to humira
Ds used pen with humira for years
The extra calories don't control the inflammation for ds
But they do allow him to grow and gain appropriately when combined with
Humira and methotrexate for ds at least
09-11-2017, 09:57 AM   #8
Try4Resilience
 
Join Date: Sep 2017
Location: CONCORD, Massachusetts
There is a whole ton of research showing that EEN/PEN resets the gut biome and can send people of all ages into remission. In some cases it actually does control inflamation. The researchers are not certain..they don't really know what is going on. I have read tons of papers and talked to the researchers.


Not een as a solo therapy -
But as an adjunct to humira
Ds used pen with humira for years
The extra calories don't control the inflammation for ds
But they do allow him to grow and gain appropriately when combined with
Humira and methotrexate for ds at least
09-11-2017, 09:59 AM   #9
Try4Resilience
 
Join Date: Sep 2017
Location: CONCORD, Massachusetts
Thanks I will try to encourage him to drink them. He says it makes him gag, literally. But growing might motivate him. His voice hasn't dropped yet and no adam's apple so I have hope he isn't too far along into puberty.

Glad to hear that your son is gaining weight lately--that's a good sign that his intestines are healing.

My daughter was 97th percentile for height until she was 7 years old. From 7 to 12, she steadily dropped down to 50th percentile. She was diagnosed at 12, at a height of 5'1" and weight of 70 pounds. Three years later with her Crohn's well-controlled, she's 5'7" and 125 pounds, and her height is back to 90th percentile.

So she's almost completely caught up in height. Your son is a little older than she was at diagnosis, but since boys typically hit puberty later, I think he has a good chance to catch up with his growth.

I can understand why your son would be sick of nutrition shakes by now, but I would keep working on trying to get him to drink a couple a day--I think it would help with his growth. My daughter did EEN for a couple of months after diagnosis (in addition to treatment with Remicade and methotrexate), and then did supplementary EN for several more months, and she gained about 25 pounds during that time.

Kids typically gain weight before height, so let your son know that anything he can do to help increase his weight will help him get taller in the end.

Hope Humira continues to work well for your son!
09-11-2017, 10:05 AM   #10
Maya142
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I would do supplemental EN in addition to Humira and his other meds. That's what we did. My daughter was VERY underweight. She tried to drink Peptamen Jr and though she got used to the taste, she was unable to drink enough to maintain her weight, much less gain. She was very against an NG tube but her GI eventually insisted since she was so malnourished.

It was actually not bad at all! The first night was tough, but after that she found it quite easy. She inserted the tube every night before bed, we did the feed while she was sleeping, and pulled it out before school. No one at school had to know! She was VERY nervous about learning to insert it, but she got good at it very quickly and now says that having a tube is WAY better than drinking the shakes.

She now has a more permanent tube that was surgically placed in her belly, but generally you start out with an NG tube.

There are other shakes he can try if he won't drink Ensure - Boost is one, Orgain is another. Then there are semi-elemental - more broken down shakes. Those are easier to absorb. Our GI uses them with IBD kids - Pediasure Peptide or Peptamen Jr. They do taste worse than Boost or Ensure.

Generally, I have heard parents say that kids gain weight first and then grow. So it's a good sign that he's gaining weight. But I'd try to get him to drink a couple shakes a day or use a tube to make sure he is getting enough calories and good nutrition his body can absorb.

My daughter went from being severely underweight (hospitalized many times for her weight, developed an arrhythmia) to gained 30 lbs or so with a feeding tube. She went from being exhausted and stuck in bed all day to feeling much closer to normal. It was really miraculous for us.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-11-2017, 10:20 AM   #11
Try4Resilience
 
Join Date: Sep 2017
Location: CONCORD, Massachusetts
Thank you. He has tried all of the brands and flavors we could get our hands on. We will encourage him to start drinking some again.
09-11-2017, 11:32 AM   #12
Maya142
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It really helped that our GI insisted - she explained how important nutrition was for weight gain (and growth in your son's case - my daughter was 16, so mostly done growing) and even for brain development. It sometimes helps them to hear it from someone other than mom!
09-11-2017, 01:20 PM   #13
Tesscorm
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My son also used an NG tube throughout, both during EEN and PEN durations. He also learned to insert and would do so each evening and remove in the morning. He learned quite quickly and, within a week, it was literally taking seconds to insert the tube. (Removing in the morning even easier.) At one point, months in, I did ask him if he'd prefer to try to drink some of the shakes and he said 'no'. He said it was easy to do while sleeping and he didn't have to worry about trying to get shakes in during the day.

He also used the NG tube for one or two MREs rather than drinking the necessary liquids (contrast).

He stopped the overnight feeds only when he went to university (he didn't want to take the pump, etc. and explain to roommates). By that point, he was on remicade and firmly in remission. But, he was agreeable to drinking one or two Boost shakes per day. And, truly, at this point (4 years now at school), the shakes are now his regular breakfast (even when he's at home) and he considers them a convenience. I think he even has his roommates drinking them regularly! When they've slept over here, seems they all grab one for breakfast! (Gotta wonder how much more this is costing me while he's away at school! )

However, while he was using the NG tube, he did not use Boost. At that time, he was using an elemental formula (Tolerex) which is more easily absorbed. Whether true or not, he firmly believed the nutrition he absorbed from the formula helped him 'bulk' up much quicker than his friends when they'd work out at the gym. I don't know if it's true but may be a selling point for your son.

Also, what helped keep my son on track was the schedule our GI gave for PEN. During the PEN period (2 years), 7 days/nights per week was never suggested. Their suggestion was 1500 cal/night, 5 nights per week. It was usually Friday/Saturday when we skipped the formula. This allowed him flexibility to sleep at a friend's place or when having friends over.
09-11-2017, 01:58 PM   #14
xmdmom
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Weight gain will precede catch up statural growth.
Catch up growth does happen when the inflammation is controlled and the BMI is no longer low. The improved nutritional state has a good chance of stimulating or accelerating puberty.

That he has a normal height percentile (even though it fell) is good news. A later than normal puberty could also cause the fall in percentiles and Crohn's can delay puberty.
09-11-2017, 02:27 PM   #15
Try4Resilience
 
Join Date: Sep 2017
Location: CONCORD, Massachusetts
Thank you so much. I'm looking for anyone's personal stories for catch up. The so-called expert researchers are on the fence as to whether kids will *catch up* on lost growth, or just start growing again.
09-11-2017, 02:31 PM   #16
xmdmom
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I piped in because I am a retired pediatric endocrinologist. When a person is in puberty or close to puberty, they may not catch up completely because the time for growth is limited.

It is clear that kids catch-up when they have a chronic illness that is then well controlled. They may not catch up completely. And when there is not catch up growth, it suggests that the chronic illness is not completely controlled.
09-11-2017, 02:36 PM   #17
Try4Resilience
 
Join Date: Sep 2017
Location: CONCORD, Massachusetts
Do you know anything about growth hormone? I heard that they don't like mixing growth hormone with auto-immune disorders. It takes 4+ months to get an appointment with the pediatric endocrinologist here in Boston. Some researchers (this is Boston Children's Hospital/Harvard who run studies for IBD) think that some kids who have started puberty will still catch up. But I can't find any hard evidence or source for the info.
09-11-2017, 03:33 PM   #18
xmdmom
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If he were my child, and he had a normal height prediction, I would not consider GH. Hopefully his height growth will pick up very soon. Making sure his nutrition is good and that there is no inflammation is important.

I am not up to date on the latest studies. When I retired, doctors would not consider treating someone on the 35% with a normal bone age unless the child had proven GH deficiency and abnormally slow growth.

This states that "a boy of 14 with a bone age of 14 has completed 92% of his growth." By my calculations: If he is exactly 14 at the 35%, he is currently about 63.4 inches according to http://reference.medscape.com/calcul...ercentile-boys. That would predict a final height of 68.9' = 5' 9 if he has normal growth from now on. Obviously, this is not exact and listen to your doctor not me...disclaimer...

5'10 is the 50% for adult men in the U.S.
09-11-2017, 04:19 PM   #19
DustyKat
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Hi Try4Resilience and welcome.

By the sounds of it your son's Crohn's had been present for quite some time prior to diagnosis, this is not unusual as the disease can be quite insidious.

Due to nature of IBD, chronic inflammation, it is one of the hallmarks of the disease for many children that are diagnosed at your son's age that puberty is delayed. Rather than the body expending its energy on growth it is all redirected in trying to heal the bowel. Once a diagnosis is made, treatment commenced, and healing commences it will take some time for the body to refocus itself and get back to normal activities.

My son was diagnosed at 17 so not the best comparison to your son. My daughter however was diagnosed at 14. She went undiagnosed for about 2 years and only received her diagnosis during emergency surgery. The resection that occurred during that surgery put her straight into remission. At the time my daughter did not even look like puberty was anywhere on the horizon. She was in very poor condition pre op and it took her quite some time post op to pick up. It took her 6 months after the surgery to reach a full 100% and then another 3 months after that for puberty to start but once it did she did about 3 years growing in one. The change was staggering.

As hard as it is to wait and watch give it some time, easier said than done I know! He has had inflammation for quite some time, healing has only just commenced, and it will take time for his body to refocus its energies. It is a positive sign that he gaining weight I would give it at least 6 months and then re-evaluate.

I'm so sorry to hear about your first husband, what a difficult and heartbreaking time it must have been for you all.
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Mum of 2 kids with Crohn's.
09-11-2017, 08:56 PM   #20
Jenn
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Check in with an endocrinologist, even with the wait. We monitor my son once/year. It took awhile on Humira to reach remission, weight gain, and then finally height. He was 2 years' delayed and is catching up some now, but is still well shorter than his peers and shorter than his older brother was at the same age. It's hard! His first endocrinologist said he'd keep growing when others stop (delayed growth) though his current one says it's possible it's skipped, we won't know til it's all done, frustrating. We've tested his hormone levels and he's near enough normal to not add growth hormone, also since he is on the curve again. Hope Humira works well for your son too!

ps. my son had no appetite and couldn't stomach drinking shakes. He only gained weight once the medication worked
__________________
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
09-13-2017, 07:07 AM   #21
sabrina123
 
Join Date: Aug 2016
My one child is having trouble eating. Our IBD team has a nutritionist that we work with who has her increase the nutritious high fat food she tolerates and likes, increasing that in her diet where ever possible - as much as possible - so for example adding avocados, nut butters. Including also adding calories to smoothies - if that works.. We may still go EEN route - but they are doing some tests for full diagnosis, so this is a bridge. (She can't tolerate Boost/Ensure). Your IBD team may have teen friendly ideas for a temporary bridge. I'm not implying it has anywhere near the effectiveness of EEN, etc - but any small bit maybe helpful and working with an IBD trained professional seems a reasonable place for help.

Btw - My other daughter started growing within 3 months of being basically symptom free and perfect labs and did have a big jump in growth the first few months. We were fortunate that diet and Pentasa worked for her - at least for the time being (we will switch her to biologics if/when needed at first sign from lab/scope). She gained a lot of weight - though was never "underweight" to begin with even though looking back symptoms for 4+ years . She did slow growth and than stop growth for 18 months, but then quickly gained height when symptom free.

At the recommendation of our GI doctor, we still met with an endocrinologist in case growth hormone is needed as there are endocrine issues in the family. Our GI also wanted the endocrinologist to read the bone age and review growth hormone levels and other endo tests.

Good luck!
09-14-2017, 09:54 AM   #22
Jmrogers4
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Thank you so much. I'm looking for anyone's personal stories for catch up. The so-called expert researchers are on the fence as to whether kids will *catch up* on lost growth, or just start growing again.
My son was diagnosed at 10 but had very little growth from 10-14 a couple of inches at most. At 14 1/2 we visited with endocrinologist and tested for growth hormone, had a bone age scan done (he was about 2 years behind) and was at the very early stages of puberty (his 12 year old brother was far ahead of him in that regard and had passed him in height as well). He started remicade at roughly the same time which finally brought about true remission for him.

He gained weight at first went from 89 pounds to about 107 in the first 6 months and grew 2" then things really started to move. His growth velocity was off the chart. A year after starting remicade he had grown 5 inches. He started off at 5'1" (pre-crohn's had been in 85% for height) at the start of remicade he was in the 10%. He is 18 now and off for freshman year at college at his GI check up before leaving in August he officially measured at 6'1.2" and he is still growing. Puberty hit hard and fast and I think he went through about 3 years of puberty in 1.
Good luck with Humira
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
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