Possible Crohns

[kasia79]

Hello,

Thank you for adding me to this forum. I have a 14.7 year old son that has delayed growth and puberty. He's currently 5'0 feet and weigths 87 lbs. Was evaluated by endocrinologist and has low Growth hormone. He started on growth hormone injections. During his blood work his ESR was very elevated. He was tested for Celiac which came back negative. We went to see gastro 3 months later and he ordered more tests...his Creactive protein was 39!!! his hemoglobin was low of 11 and other anemic markers were low, in addition to low albumin and calcium... dr. then ordered fecal test and that just came back as 3900!!!!! My son has no GI issues other than occasional constipation.. Now, gasto is thinking IBD and wants to do endoscopy and colonoscopy... I'm glad we are moving in that direction, but I'm just so mad because when I mentioned this to pediatricin one year ago, he said he's just a late bloomer and will grow when he gets to HS and/or college!!!!! My gut feeling was telling me something wasn't right especially since his younger sister who's 11 is about 2 inches taller than him.....
So the question is.... is there a chance that he will catch up in height and puberty? I understand that prednisone stunts growth which I don't want to try with that... What is the treatment options? can i start with biologic? THank you all and I"m so glad for this forum... I haven't been able to sleep in days, I'm so worried!!!

 

[my little penguin]

Glad your son may be dx finally .
Things to be aware
Inflammation stunts growth or delays it
A wrist /hand xray can tell bone age
Endocrine can tell you what that is
Most crohns kids are behind by up to 2 years
Which means two extra years of growth
Een (exclusive enteral nutrition) is formula only
No solid food just formula
Peptamen jr
Boost
Ensure etc…
This is done for 6-9 weeks to induced remission while waiting for meds to work
Some use steriods
Biologics work but take time and need steriods or een to reduce inflammation
Once inflammation is down then they maintain this
Growth can happen after inflammation is down
Especially if bone age is younger
My kiddo was dx at age 7
Now 19
Was on biolgics from age 8 till now
Steriods abd een multiple times
He is almost 6 ft abd has a year or more of growth due to delayed growth
About 160 lbs And gaining
So yes growth is possible
And healing and a normal life
He drinks supplemental shakes (peptamen jr when he was younger and carnation instant breakfast now ) to increase calories abd growth plus food
Good luck on the scopes
It will be ok

 

[Pangolin]

Wow that definitely all sounds like Crohn's. It's interesting to see how it can happen without very obvious symptoms. There is a chance that with the growth hormone and hopefully getting the Crohn's under control right away, he can catch up on growth and puberty. My son is currently catching up at age 16, and he's also on growth hormone injections. Unfortunately your son is getting started on treatment at an older age, but he still may mostly catch up.

Treatments:

EEN is great for bringing down inflammation fast

Biologics can really help. If you can get Skyrizi, that's probably your best bet. If not, then Stelara is your next best bet. Unfortunately, you may be required to start with Humira or Remicade. I'm not a fan of them, but they help some people.

Surgery can really help if there's a specific problem area

 

[kasia79]

Thank you all for your replies.. I really appreciate it. All day I've been sitting in front of the computer researching and crying. There is just so much information and different scenarios of treatments helping and not helping... My son LOVES food.. I started incorporating boost/ensure at least twice a day since that's all he wants... Have noticed lately that his appetite has decreased.. I researched EEN and discussed NG tube with him and he said NO WAY!! Maybe he'll listen to the doctor.. we'll have to wait and see after colonoscopy. Have any of you heard of fecal calprotectin that high?

 

[my little penguin]

You don’t need an ng tube for een
My kiddo never used an ng tube
He would not agree to it abd Gi said as long as he drinks it no big deal

You can use polymeric formulas
Boost and ensure are just fine
Try not to add boost or ensure now
You need scopes to get a proper dx
You need to understand if he has crohns or something else
Formula heals a lot of things
Supplemental formula can help but only after scopes
Flaring fecal caloprotectin can be in the thousands
Fecal cal can be also increased from infection
Does he take nsaids ?
steriods for 4-5 weeks are really not that bad
It’s only bad when you use them over and over and over or many many months at a time

 

[kasia79]

Thank you so much...I started the shakes because of his anemia and wanting more nutrients in him. Maybe i need to look into other options...So short term prednisone decreases inflammation should be ok?. My son does not take any NSAIDs...an infection crossed my mind but he would be more symptomatic I think. Has anyone given your child ginseng and/or gingko biloba for inflammation? I read couple studies that it helped with inflammation but I know some herbal supplement may interfere with treatments, but haven't gotten that far...
Do your kids have to follow specific diet once treatment started?

 

[my little penguin]

Wait till scopes are done and biopsies and imaging completed before you start anything
Supplemental stuff needs to be cleared by your Gi
Our experience with herbs that were supposed to help according to papers made things worse for my kiddo
Only thing my kiddo avoided was nuts and popcorn
Theses can get stuck in ulcers
Otherwise everyone
And I mean everyone has an opinion
On what diet should heal /cure or fix crohns
Other than een
That’s it
Everyone is individual on what does and doesn’t bother them
And what bothers them when inflammation is present is not the same as when your in remission
So it varies

get scopes
MRE
Pill cam
Get a diagnosis

Then start meds /shakes
Then if that doesn’t work look at alternative with gi permission

just because it looks like crohns on paper
Doesn’t mean scopes will show crohns

my child looked like eosinophilic disease (Egid as such as EoE , ege etc..) on paper
Multiple specialists plus parent forums said so….
Scopes were looking good
Biopsies and imaging proved crohns which I and the docs were shocked by

 

[kasia79]

Again. Can't thank you enough for your advice..I was so lost this morning but now I feel like I have a plan and will take it day by day..I appreciate you and this forum...thank you all and hoping for the best

 

[Jo-mom]

Just to ease your mind a bit - my son was also 5 ft tall and 85 lbs when he was 14 and we didn't know he probably had crohn's. He just had a check up and same story - late bloomer. He was diagnosed at age 19 with Crohn's and is now 5'8" and 150 lbs. He is 25 now and doing well. I sometimes wonder if he would have grown a little more - but his dad is 5'9" and his granddads were 5'7" and 5'8" so we won't really know, but he is a normal height and weight as an adult. So your son will grow. He's still young and you are on top of it. I wish I knew when my son was 14 but he had no obvious symptoms. It'll all work out.

 

[kasia79]

Thank you for that
I'm ready to tackle whatever diagnosis he'll get..just hope he'll be ok. He was googling crohns last night and all I think he got sad..it just breaks my heart. I just hope for normal lifestyle for him..he's already been through a lot since birth...he was born with micropthalmia and has no vision in left eye...went to so many docs when he was young, then growth hormone treatments and now this...i think he's a little scared

 

[my little penguin]

Let him know it will not define him
He can be normal and have crohns
My child (adult now )
Has crohns juvenile arthritis plus sweets syndrome
He is in college going to classes and hanging out
You would not know he had anything if you looked at him
Some friends know
And some don’t
It’s all good
So with the right meds life goes on
Pete has crohns is a good comic book for teens

https://www.crohnscolitisfoundation.../assets/pdfs/pete-learns-all-about-crohns.pdf

 

[kasia79]

UPDATE: My son had endoscopy/colonoscopy with biopsies and this was the results:
DIAGNOSIS: A) Small intestine, duodenum and bulb, endoscopic biopsy: - Active duodenitis.
B) Stomach, endoscopic biopsy: - Chronic active gastritis. See Comment.
C) Esophagus, distal, endoscopic biopsy: - Findings suggestive of reflux. See Comment.
D) Esophagus, mid, endoscopic biopsy: - Findings suggestive of reflux. See Comment.
E) Small intestine, terminal ileum, endoscopic biopsy: - Mildly-active chronic ileitis with non-necrotizing granulomatous inflammation. See Comment. F) Large intestine, cecum and ascending colon, endoscopic biopsies: - Mildly-active colitis with non-necrotizing granulomatous inflammation. See Comment.
G) Large intestine, trans verse colon and ascending colon, endoscopic biopsies: - Mildly active colitis with non-necrotizing granulomatous inflammation. See Comment.
H) Large intestine, rectosigmoid colon, endoscopic biopsy: - Minimally-active colitis with non-necrotizing granulomatous inflammation. See Comment.

under comments it said suggestive of Crohn's disease..
He was prescribed prednisone 40mg/day.... have a virtual with doctor and then a follow up in 2 weeks

Will he even be a candidate for biologic? Anyone else with "mild" crohn's? what was your treatment plan? He's main issue is delayed height and puberty. I read that pentasa works great for stomach and intestines but its for UC . I'm trying to be proactive but the more I research, more confused i get

 

[my little penguin]

My child was dx with “mild “ crohns at 7
By age 8 he was on remicade
Pentasa is stated by most Gi about as effective as giving aspirin for a brain tumor not going to hurt but not going to help much either.
Pentasa only treat the top layer of the intestine which is good for UC since that affects only the top layer .
Crohns goes deep through all the layers

immunosuppressants are one step up from 5-Asa (such as Pentasa )
Theses are 6-mp /imuran or methotrexate
Most pediatric Gi don’t use 6-mp/imuran anymore since it cause increase lymphoma risk .
Methotrexate (mtx) works for some
But can cause nausea.

een (formula only ) can be used to help with growth /remission -but so can steriods
Your child will stay on steriods while the maintence med takes effect
This can be 6 weeks to 3 months depending on the drug used

my child spent a year miserable while we worked through all the drugs till he got to remicade and then suddenly he was great
So don’t let “mild” stop you from biologics

he currently takes two biologics and mtx
One biologic Stelara plus mtx is used to treat his crohns and juvenile arthritis

good luck

 

[Maya142]

My daughter's Crohn's was considered mild when she was diagnosed. She had ulcers at the end of her colon and inflammation throughout her colon and her terminal ileum was red and visibly inflamed and bled when biopsies. Every single biopsy taken showed inflammation and she had granulomas in her terminal ileum. Later her GI called it "mild to moderate" because she lost a lot of weight and became extremely malnourished and developed osteopenia, and required a feeding tube to gain weight. She was hospitalized several times because of how underweight she was and how it was affecting her electrolytes.

Anyway, at diagnosis, she was already on a biologic for her Juvenile Idiopathic Arthritis, but not one that treated Crohn's. We wanted to treat her Crohn's aggressively because we hadn't done that with her juvenile arthritis - it just didn't seem bad enough for biologics, so we tried "weaker" meds and diets and supplements for over a year. All of that failed and her arthritis actually became quite severe and it spread to more joints and caused permanent joint damage. We did not want to make the same mistake with her Crohn's, so her GI and rheumatologist talked and decided to put her on Remicade (and she was already on MTX). That took several infusions to kick in, but within 8 months her scopes improved dramatically - there was absolutely no inflammation in her colon and very, very mild inflammation in TI (only seen on biopsy).

Your son has a growth delay and puberty delay - typically kids with those issues are put on biologics. I would push for that honestly. Now Imuran is not really used for kids (especially for teenage boys because of the cancer risk), so your other choice would be MTX, which can work but is simply not as effective as biologics.

 

[kasia79]

My daughter's Crohn's was considered mild when she was diagnosed. She had ulcers at the end of her colon and inflammation throughout her colon and her terminal ileum was red and visibly inflamed and bled when biopsies. Every single biopsy taken showed inflammation and she had granulomas in her terminal ileum. Later her GI called it "mild to moderate" because she lost a lot of weight and became extremely malnourished and developed osteopenia, and required a feeding tube to gain weight. She was hospitalized several times because of how underweight she was and how it was affecting her electrolytes.

Anyway, at diagnosis, she was already on a biologic for her Juvenile Idiopathic Arthritis, but not one that treated Crohn's. We wanted to treat her Crohn's aggressively because we hadn't done that with her juvenile arthritis - it just didn't seem bad enough for biologics, so we tried "weaker" meds and diets and supplements for over a year. All of that failed and her arthritis actually became quite severe and it spread to more joints and caused permanent joint damage. We did not want to make the same mistake with her Crohn's, so her GI and rheumatologist talked and decided to put her on Remicade (and she was already on MTX). That took several infusions to kick in, but within 8 months her scopes improved dramatically - there was absolutely no inflammation in her colon and very, very mild inflammation in TI (only seen on biopsy).

Your son has a growth delay and puberty delay - typically kids with those issues are put on biologics. I would push for that honestly. Now Imuran is not really used for kids (especially for teenage boys because of the cancer risk), so your other choice would be MTX, which can work but is simply not as effective as biologics.

 

[kasia79]

Hi Maya.. Thank you for your reply . How old is your daughter? I had a virtual with the doctor on thursday and because my son stopped growing, he's considering him moderate-severe case even though biopsy stated mild. To get the best result and catch up on growth, he recommends remicade. We are starting the authorization process, but insurance wants biosimilar which he said its fine.. The problem is now that my son is not hep B or MMR immune..so he had to get vaccinated yesterday for MMR, hep B and flu and has to wait 28 days before he starts his infusion.. He was taken off prednisone since he has no GI symptoms which he's thankful for because he was getiing up 4 times a night to go to the bathroom.. I'm starting to find comfort that we finially know what's causing his delayed growth and puberty. Endocrinologist still wants him on growth hormone since he was deficient in that but the more I read, its seems its secondary to Crohn's .. will revisit that in 5 months... Hope your daughter is doing much better... My issue now is food/dietary restrictions.. He's a teen and of course he likes his junk food and take out food, especially Canes.. the doc said he doesn't have to follow specific diet but be conscious of fried food and raw veggies,.. is your daugher on remicade or biosimilar? any side effects after infusions?

 

[Maya142]

My daughter is now in her mid-20s. She was diagnosed over 10 years ago.

Based on what I've heard in the 10 years of being on this forum, severe weight loss or lack of growth automatically makes the disease at least moderate. There have been a lot of kids who have done really well with Remicade, in terms of delayed puberty and delayed growth. Supplemental EN may also help with weight gain and growth and correcting malnutrition. That's different from EEN - with supplemental EN, the kiddo eats but also drinks a certain number of shakes a day (or can use an NG tube for overnight feeds as my daughter did). With EEN, it will help with weight gain and growth too, but will also induce remission. Supplemental EN can be done for as long as is needed and EEN is typically done for 6-8 weeks to induce remission while the maintenance med kicks in.

Since your son is being taken off Prednisone, it's very possible his diarrhea will come back. EEN would help prevent that, but your son would have to be 100% on board because otherwise it's too easy for teens to cheat and eat at school or when out with friends.

I also want to add that while an NG tube sounds very intimidating, it really isn't. The first few days were tough for my daughter, as she got used to it. She complained her nose was sore and her throat was sore. But it's an infant sized tube (they usually used size 6Fr - if not, ask for that) and like a strand of spaghetti. She got used to it in less than a week and was able to insert in 10 seconds or so after about a week! Once she got used to the tube, she declared she was NEVER drinking formula again because this was so much easier.

In terms of biosimilars, they are supposed to work as well as the original drug. My daughter is on Remicade though, she's never been on Inflectra which is the biosimilar, but I can think of two other kids who have switched from Remicade to Inflectra without issues.

In terms of the infusions, the actual infusion takes roughly two hours, but the whole process takes at least 3 for us (usually they will weigh the kiddo and record height, then they'll put in an IV and you have to wait for the med to come up from pharmacy and at the end they'll do a saline flush to make sure they get all the medication out of the bag and tubing, which takes 15-20 minutes). My daughter has not had side effects except being tired the day after the infusion. When she was in high school, she tried to schedule the infusion on a Friday so that she could rest the next day.

To help with putting an IV in, make sure he is really well-hydrated. If you do your infusions at a children's hospital, typically they're great at putting in IVs and the nurses really spoil the kids - they provide snacks, warm blankets and pillows, heating pads if your child has belly pain and there are toys and games for younger kids, and at our children's hospital, each little room had a small TV and a small bed for kids to lie on (or there are recliners, depending on the hospital).

 

[Maya142]

The problem is now that my son is not hep B or MMR immune..so he had to get vaccinated yesterday for MMR, hep B and flu and has to wait 28 days before he starts his infusion

So for live vaccines, you do have to wait to start biologics. My daughter required a chicken pox booster, so we had to wait to start biologics too. In our case, I think it was 2 months. The flu vaccine (the injection - make sure you don't get the nasal spray) and Hep B are not live vaccines, but MMR definitely is, so that's likely why he has to wait.

He's a teen and of course he likes his junk food and take out food, especially Canes.. the doc said he doesn't have to follow specific diet but be conscious of fried food and raw veggies

In terms of his diet, I would definitely follow the doctor's orders. When my daughter was diagnosed and flaring, she could not tolerate fried food - it caused abdominal pain. Same with raw veggies. She followed a pretty bland diet until Remicade kicked in - low fat and low fiber. She could eat well-cooked veggies or soups. We were also told to avoid nuts, seeds and popcorn because they can cause an obstruction (whole nuts - not something like peanut butter or almond butter or nutella).

Our GI has always said to avoid processed food as much as possible and we do try to follow that. So for example, instead of buying bread at a grocery store, we'd buy bread from a bakery, since grocery store breads have lots of preservatives. We try to get fresh pasta too or make it at home. That said, my daughter does occasionally have junk food (and definitely had it more often when she was in college) - for example, while we do bake french fries at home, but sometimes she wants the real thing .

My daughter saw an improvement after 2 infusions of Remicade but it took 4 infusions and a dose increase before she really felt significantly better on Remicade. Some kids respond much faster, in days, and others take months, like my daughter.

Has your son had an MRE? Typically GIs will do an MRE or pillcam to look at the small bowel, since scopes can't reach the majority of the small bowel.

 

[kasia79]

Yes, he's scheduled for MRE in early December. He just had his MMR, flu vaccine and Hep B yesterday. Peds said to check hep b titers in 1-2 months to see before having another vaccine. So now we are waiting to see what insurance will cover, Remicade or biosimilar.. I just wished we figured this out earlier. His chronological age is 14.7 yo but bone age is 12.9yo so doc thinks he can catch up on growth..fingers crossed!!!

 

[Maya142]

We had a success story on here quite a while ago that reminds me of your son. A child diagnosed when he was 10 or so, with a family history of IBD (his dad had it, I think). His IBD appeared to be mild, but he just stopped growing and gaining weight, despite doing EEN more than once and I think also supplemental EN and even an appetite stimulant. He tried all the weaker, older first-line meds like Imuran and Methotrexate, as well as diets. He didn't have a lot of symptoms, just no appetite and growth failure - I think he was 15 or 16 and like 5'1 and had completely fallen off growth charts. His GI and endocrinologist started saying things like "maybe he's just going to be a small kid" even though his younger brother was growing normally and was much taller than him. Finally he flared - not a lot of symptoms, but an MRE show significant inflammation in his small bowel, and I think his GI finally agreed he should be on Remicade.

I remember that it was like night and day. Over several years, he shot up and gained weight and symptoms he didn't even realize he had (such as fatigue), because he was so used to being sick, disappeared. I think he grew over 10 inches!! He stayed lean, but so was his brother. He grew after his peers stopped growing, I believe, because his bone age was delayed too.

His pediatric GI started calling him a "poster child" for Remicade because he did so incredibly well on it!

We all wish we had caught our children's Crohn's earlier. It's a sneaky disease and hard to diagnose. Try not to beat yourself up.

 

[kasia79]

It does sound a lot like my son...thank you for your kind words I'm praying for quick remission and quick growth