Remcade/growth/gain

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Worried mama

Worried mama

Joined
Sep 16, 2014
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188
Well, my son has now been on remicade for just about 1 year! Every 5 weeks. He just about makes it, 2 days before he's due I see more BMs. Dr says to keep current schedule. Over the past year he has gained around 12 pounds. His BMI is now 18.3. However, he has not grown vertically at all. He's going to be 14 soon and is still just 55.5 inches. Very tiny.

All the Drs keep saying is to just wait....he's been to endo, they see no issues. WHEN WILL HE GROW ALREADY? Ugh, it kills me, every 5 weeks he stands unde that ruler and.......is the same 😓.

So, I've come to the experts.....tell me when he will grow. 😉
 
I feel the same way! My son has been in the same size clothes for 3 or 4 years now. He has only had 3 treatments. I can't tell you when he will grow. I don't have enough experience yet. My son is only 4'8 13 years old. Not 80 pounds yet. How long did it take for Remicade to work? I'm losing faith FAST! [emoji24]
 
How are his scopes? Has he had follow-up scopes? Perhaps he needs nutritional supplementation. That might help push him into a better remission and also help his growth.
 
It's hard to say because initially his only symptoms were lack of growth, he never really had the cramping you described in your other post. But I know you have to give it some time, if he's only had the loading doses, give it a bit more time. We tweaked a lot over the last year too, both dosing and time between infusions. And although he's steadily been gaining weight, about 1 pound every 5 weeks, still no taller. I'm getting impatient and discouraged.
 
CarolinAlaska said:
How are his scopes? Has he had follow-up scopes? Perhaps he needs nutritional supplementation. That might help push him into a better remission and also help his growth.
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He hasn't had scopes done since diagnosis, he drinks 2 boost + a day in addition to normal meals. It's hard to even get all that food into his body, I feel like I'm just stuffing him all the time. Perhaps we should ask about scopes again...
 
I feel your pain. I'm getting really discouraged! Bless you. I hope it gets better for you. I stay positive for my son on the outside but inside I wonder if things will ever get better.
 
Have they done a fecal calprotectin recently? Or Remicade levels? Just to make sure that the inflammation is under control and he is on the right dose of Remi.

Most parents here seem to say that kids gain weight before they grow. My daughter was already done growing when she started Remicade, so we don't have any experience with that.

Sending hugs!
 
kyoung02 said:
I feel your pain. I'm getting really discouraged! Bless you. I hope it gets better for you. I stay positive for my son on the outside but inside I wonder if things will ever get better.
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I know the feeling. Try to find a way to deal with the constant anxiety - counseling for yourself, or purposefully take breaks from it like not reading the forums and concentrating on other aspects of your life. Take it from me, it will pay a toll on your health and doesn't do your child any good either...
 
Bless you Maya I was going to suggest an fcp test.

It took O a year of Remicade before she started to grow. Her body needed to gain weight for the energy to grow.

She did much of her growing in the last year even and that was her 4th year on Remicade so go figure.
 
Maya142 said:
Have they done a fecal calprotectin recently? Or Remicade levels? Just to make sure that the inflammation is under control and he is on the right dose of Remi.

Most parents here seem to say that kids gain weight before they grow. My daughter was already done growing when she started Remicade, so we don't have any experience with that.

Sending hugs!
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They have not done the fc recently, I'll ask though. They have done levels testing and they do the blood work at each infusion....levels were good, blood work still seems to be kind of all over the place...but dr never seems to think we need a change in our plans, not yet anyway. He says that his weight gain is positive indicator that things are moving along in right direction.
 
I vote for scopes/MRE blood work was never a very good indicator for us. We always thought things were okay based on bloodwork but the lack of growth and puberty at 14 1/2 led to further testing (MRE) which showed inflammation in the small intestine. GI assumed there was small bowel involvement in the beginning but just went based on scopes and when scopes and bloodwork showed healthy tissue in large colon and dueodeum it was just assumed any inflammation that had been present in small intestine was also taken care of which was most likely not the case in hindsight as only symptom showing after initial diagnosis was the lack of growth/development for about 4 years.
For Jack Remicade has been the magic medicine and growth and development just took off it did take tweaking with the medicine he needed the higher end of dosage 10ml/kg.
Sounds like further investigation is definitely called for, weight gain is great and prior to his current treatment my son would gain weight but not height with supplemental EN however if we stopped supplementing weight would drop again.
 
My 15yo son after 9 months on Remicade had weight gain but no height gain. By all measures including labs and scopes CD was under control but no linear growth -- had GI scratching head. Many months of cajoling endocrinologist both by us and by GI finally got endo to do a growth hormone stimulation test and that showed pituitary gland was just not releasing enough hormones. After some more tests our kid was put on growth hormone therapy and within a month his growth trajectory kicked in. He's averaging about 1/2" per month now, where the past two years he barely had an inch total.

Endocrinologist are reticent to do GHT in CD patients because there is no data to support its effectiveness in this population. It's expensive and it does carry some risks. But if GI thinks CD has been under control for some while and you're not seeing growth, one thing to consider is maybe a stim test to figure out if the pit gland is doing its job. You probably also want to be on regular visits with endocrinologist to check some labs and track his Tanner stages. It goes from 1-6 and the growth window supposedly closes by 6.
 
Crohnick said:
My 15yo son after 9 months on Remicade had weight gain but no height gain. By all measures including labs and scopes CD was under control but no linear growth -- had GI scratching head. Many months of cajoling endocrinologist both by us and by GI finally got endo to do a growth hormone stimulation test and that showed pituitary gland was just not releasing enough hormones. After some more tests our kid was put on growth hormone therapy and within a month his growth trajectory kicked in. He's averaging about 1/2" per month now, where the past two years he barely had an inch total.

Endocrinologist are reticent to do GHT in CD patients because there is no data to support its effectiveness in this population. It's expensive and it does carry some risks. But if GI thinks CD has been under control for some while and you're not seeing growth, one thing to consider is maybe a stim test to figure out if the pit gland is doing its job. You probably also want to be on regular visits with endocrinologist to check some labs and track his Tanner stages. It goes from 1-6 and the growth window supposedly closes by 6.
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We did have the growth horomone test done and he passed, it was done prob 2 years ago, before crohns dx. We see the endo regularly and he doesn't see anything abnormal, thinks it's just delayed puberty....so frustrating.
 
Yes if you haven't done it endocrinologist visit is totally worth it, Jack had testing done and his showed he was fine hormone wise, we continued with visit to endocrinologist that first year until last visit he was far along the tanner stages or at least in ranges with most 15 year olds and had grown several inches. Endo told us it was up to us but he felt we did not need to see him anymore.
GI and PCP recommended we see the endocrinologist since at that time according to labs we assumed things were under control and wanted to make sure there was nothing else going on causing failure to thrive.
 
This is something I worry about. My son is 16 and only just taller than me. I keep asking at his clinic but they aren't bothered as he is otherwise well. I just get the "well some people are just shorter". I gave up
 
It will restart eventually, but first he has to have weight gain. Not everyone has catch up growth. My son checks in with the endocrinologist once/year with a hand xray for bone age. He's consistently 2 years delayed, but growing at a regular rate again. He'll just catch up at 18 or 20...
 
Typically 6 months after weight gain growth will start but the ped told Ds the same
Expect to grow well into your 20's but Ds has multiple diseases going on JSpA inhibits growth as does CD .
For now he is still on target at 75% for weight and 65% for height
Will see how the next year or so goes

I do know more than a few tiny CD kids
Typically they aren't eating much gaining much or supplementing formula
So if the weight is going on
Watch for shoe and hand growth first
Then vertical
Think puppies
Big hands and feet lead to bigger kids ;)
I know it's hard to be patient

Just bought new shoes for ds ( his weight stalled for a year due to Gastroparesis so hopefully this is signs of good things )
 
My 15 yo boy has been on remicade for a year too. He gained some weight this summer, got his BMI up to 17, had a tiny bit of meat around his middle, grew 2 inches, now 5'4" (we are a tall family, younger brother is 6'), and stopped. He is losing weight now, BMI back down to 14, and I too am worried.

He is seen by an endocrinologist (he hates going) who says that the prediagnosis crohn's caused lack of nutrition, but his body has lots of time to catch up. The dexa-scan shows that his bone growth is a year behind his chronological age. This is good news, lots of time to grow.

So, while I'm no expert, I am in the same situation as you.
 
He hasn't seen the GI in a few months. I was assuming that the GI was tracking his weight from the infusion center's documentation, but I will send an email to verify.

It is just so hard to know when to alert and when to wait and see. I feel like I really don't have a good handle on the parameters for any of this.
 
You have one kid
They have many many patients
So anything wonky
I call
It's their job to figure out what is important and when to watch wait
Weight loss in a kid is a red flag
A crohns kid a big red flag
 
Yes call, do they do labs at infusion? Growth most likely just goes on his chart and GI may not look at until you have an appointment with him and he pulls up his chart. Weight loss is a big red flag. We are closely watching Jack's he was up at last infusion but prior to that was losing, he is however still growing in height about 1/2-1" at each infusion and nothing else going on so it may just be a matter of he needs more calories than he is getting. Weight loss is our biggest red flag however, we look at the whole picture and we did use his younger brother as a comparison as before Crohn's hit they were virtually identical as far as growth. If Jack was a certain height at a certain age so was his brother their growth velocity was the same so when my younger son really started to take off and he became taller and farther along in puberty than Jack that's when more testing was done and we found the inflammation in the small intestine and Jack was put on Remicade which has turned out to be his magic medicine so far. Jack is now about an inch taller than his brother although his brother outweighs him by about 10 pounds he is still very slim as was I (until I hit 40).
Trust your gut and call the GI if you feel something isn't right
 
I email GI's office if I have any concerns. I don't do it at the drop of a hat but, if something hasn't resolved within a reasonable time period, I email. If it's not a concern (or should be directed to GP), they will say so.

Our GI, who is not even a ped GI, has told us more than once to not hesitate and contact with any concern. I would imagine most, if not all, ped GIs would also want to be alerted to any concerns.

Also, do not assume everything is being looked at! I can't say how many times, since S's dx, there have been errors with test results, etc. And, it's not always noticed because, as Jacqui said, things go into files/charts (or don't go in) and it's not always caught until the next apptmt (and, I'm sure this happens more often once you are in remission and a 'maintenance' type patient). I think S has a great GI and clinic but oversights and miscommunications can happen anywhere. Better to check...
 
my little penguin said:
Regardless he shouldn't be losing weight at all
Does the Gi know ?
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I emailed. They called immediately and want to see him today. Ugh, we are out of town until next week. We will see the doctor as soon as we return. I tried to get their attention about the weight lost (and extreme fatigue) when it started in September and they decided it was all fine, and I felt like I was overreacting.

Yes, blood work done on each infusion and it has been getting progressively worse. The last tests were done on 11/20 and the doctor made a note saying "stable, recheck at next infusion" next to anything that was out of range. Anemia, sed rate, crp, and platelets all elevated.

Sorry to post so much in your thread, worried mama.
 
Worried mama said:
We did have the growth horomone test done and he passed, it was done prob 2 years ago, before crohns dx. We see the endo regularly and he doesn't see anything abnormal, thinks it's just delayed puberty....so frustrating.
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As a follow-up, I want to clarify that I'm not talking about IGF, FSH, LH, TSH, T4, or similar tests which are drawn like normal blood tests. For him those were all normal the first year and a half of seeing the endocrinologist.

I'm talking about a stimulation test that measures the ability of the pituitary gland to release growth hormone. It was done in a hospital, and took about 6 hours. They place an IV and take a baseline measure. Then they infuse some compound that will stimulate the pituitary gland to release growth hormone. Samples are drawn every half hour for a total of 6 or 7 samples. They expect the tests to show a rising GH level that peaks about half way through and then normalizes again. My kid's readings were all subnormal. They also did an MRI to rule out cancer or other physical abnormalities of the pituitary gland, just in case.

I guess it's just another tool available to rule out other factors that may be impeding growth.
 
Crohnick said:
As a follow-up, I want to clarify that I'm not talking about IGF, FSH, LH, TSH, T4, or similar tests which are drawn like normal blood tests. For him those were all normal the first year and a half of seeing the endocrinologist.

I'm talking about a stimulation test that measures the ability of the pituitary gland to release growth hormone. It was done in a hospital, and took about 6 hours. They place an IV and take a baseline measure. Then they infuse some compound that will stimulate the pituitary gland to release growth hormone. Samples are drawn every half hour for a total of 6 or 7 samples. They expect the tests to show a rising GH level that peaks about half way through and then normalizes again. My kid's readings were all subnormal. They also did an MRI to rule out cancer or other physical abnormalities of the pituitary gland, just in case.

I guess it's just another tool available to rule out other factors that may be impeding growth.
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Thank you for the reply, I was having trouble logging on but got it worked out now. We did have that ugly test you mention....it was an awful test but he passed it...
 
So almost at our 5 week mark again and 5 days prior he is having diarrhea again and waking at night to go too. We did fecal calprotectin last week but did not get results yet. Something is going to need to change. Do any kids here have infusions every 4 weeks? Seems like that's what my son needs....he does fine up until week 4.
 
What about upping dosage? My son is on 10ml/kg. We shortened time then up dosage to find what worked for him. He is now at every 8 weeks at 10ml/kg, but we did quite awhile at every 6 weeks before we decided to try pushing it out to 8.
Hope you find the right amount and schedule to keep him feeling well all the time
 
Blood work and fecal calprotectin results back. Blood work looks same as always, normal in most areas, high in others and low in others. Fecal calprotectin high at 833. It was high at 550 at diagnosis. "Bands" was high at 11.0, and crp high at 1.9. Will call dr tomorrow to discuss and to see if he has levels testing and antobody testing back. Not feeling too happy about this, I think a change is coming
 
Worried mama said:
Blood work and fecal calprotectin results back. Blood work looks same as always, normal in most areas, high in others and low in others. Fecal calprotectin high at 833. It was high at 550 at diagnosis. "Bands" was high at 11.0, and crp high at 1.9. Will call dr tomorrow to discuss and to see if he has levels testing and antobody testing back. Not feeling too happy about this, I think a change is coming
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Hope all goes well.
 
I'm sorry. Our boys seem to be on a similar schedule. Keep us updated on what your doc. thinks. Just when ya get comfy on remicade....
 
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Darn! Don't lose hope! If no antibodies you can still go up to 10 and even over or add an immunosuppressant.

Our experience has been that levels/antibody testing takes about a week to come back.

Hang in there!
 
Ugh - hang in there! There are still things you could do: a round of EEN, or steroids or add MTX/6MP.

Sending hugs.
 
Sorry to hear about the test results, but at least it confirms what you already were feeling. Hope the doctor comes up with a treatment that gets your son back to feeling good and growing. :ghug:
 
Thanks everybody. Dr. Said he will have levels and antibody test by Tuesday. Hoping we can just adjust the schedule or dosage....he's feeling better today and hungry again but I know it will only last so long....but maybe it's a good sign that he is actually still responding to remicade, just not lasting long enough. Ugh, I don't know. Thank you all for responding and for your thoughts and advice.
 
Ya know tagging on to what Maya said...Remicade wasn't working for O for a while. She was at every 5 weeks and 12mg/kg. Our doc said the inflammation was sopping up the med. So we did a round of EEN to attack the acute inflammation and then handed the Remicade a nicely healed bowel to maintain. It was amazing how after EEN the REmicade worked like a charm. It could be that it just needs a boost.
 
M went up to 20mg/kg every 4 weeks - "high dose Remicade." That's not done at Chop (we had to have it done at the hospital her rheumatologist is at), but you do still have some room to go up. Maybe he just needs 10mg/kg every 4 weeks for a while?

Glad he is hungry - always a good sign!
 
I hope time passes quickly for you until you hear back on Tuesday. There are still many options to try, new, different, more, etc and you will find some thing that works. Wishing the drs wisdom on next steps.
 
Sorry the results weren't great, hope they can adjust the dosage to help. Maybe worth a period of EN to bring the inflammation down?
 
Update: spoke to dr today. Sons levels are fine, 8.3. They like to see above 3. No antibodies. So question remains why he gets symptoms back after 4 weeks and no vertical growth after a year on remicade, 10 lbs put on in a year. Dr says it's not enough weight gain yet to see vertical growth. So, we will meet in person to discuss in another week but he threw out some options to think about. 1) switch to entivyo. 2) tube feedings 3) add mtx to remicade.

He is also ordering scopes, having those done mid Feb.

I have no idea what to do. My child has serious anxiety issues as it is and I worry that the feeding tube will add to his anxiety....plus he's got a bad gag reflex. Although I like that it's not an actual medication.

What to do, what to do.....I'm sure the dr will advise, but I'm just confused and getting so worn down by 'stuff' lately.

Bla 💩
 
My kiddo has anxiety issues too. I was worried about the tube but finally her GI insisted because she just could do drink enough to gain weight.

At Chop, they can teach you in an outpatient appt. how to insert the tube. It's a long appt. - like 3 hours - but I think that's how they usually do it. My daughter was so malnourished at that point that she was admitted for 4 days to make sure everything went well and her electrolytes didn't do anything funny with the tube feeds ("Refeeding Syndrome").

They're taught to drink while inserting the tube. That prevents them from gagging. The first night was hard - she hated how it felt and her nose and throat were sore. The second night she inserted it by herself and her nose and throat felt better. She was really good at doing it within a week or two. Then she'd be able to insert it in less than 30 seconds, hook herself up and do the feeds at night.

It looks and sounds very intimidating but they do get used to it. I was surprised at how fast my daughter got good at inserting it.

M sees a psychologist who deals with kids with chronic illnesses and talking about it and what to expect helped.

Feeding Tube Awareness has a good site. They also have a great Parent's guide that has a lot of useful information.

Good luck with whatever you decide!
 
We added tube feedings and MTX when my daughter wasn't doing well on just Remicade, and both really helped her. Like your son, my daughter is also very anxious and has a strong gag reflex, and in general, lots of physical sensitivities. Just like with Maya's daughter, the first 2 nights were very uncomfortable, and then she really didn't mind it that much. By the end she could insert her own tube very easily.

One difference, though, is that my daughter was really sick when she started the tube, so it was easier to get her buy-in. It's not so easy, I think, when they're not as sick.

Good luck with whatever option you choose. I know it's not easy to make these decisions.
 
What a lot to take in. Hope whatever decision is made helps get things going in the right direction.
 
Yay to no antibodies! I have a somewhat irrational fear of running out of types of medications so I would be hesitate to switch biologics. Adding EEN sounds like the most conservative option. I'm working on adding EEN too, but my kid's doctor is hard to work with.

Good luck with all these decisions.
 
You know I am a huge fan of EEN. However, I want to throw a vote of support for Methotrexate. There are so many studies that prove that combo therapy increases effectiveness AND durability. You have received excellent news on the antibody front, why not try to get ahead of them now?

In the meanwhile for weight gain you could do supplemental EEN, or do more palatable shakes. Consult a registered dietician for ideas on how to use food for weight gain.

I am with mallorymag on Entyvio. It isn't showing a good a success ate with Crohns as anti tnf. Add to that the very longtime it takes to become effective and I would be leery of dropping something that is mostly working for an unknown and risking disease uptick while waiting for it to take over.
 
Yeah - I have to add that my kiddo is 19 and running out of options because of antibodies. It's definitely a good idea to prevent them if you can. Most kids have no issues with MTX.

Some have nausea, but usually it is controllable with Zofran and folic acid. My older daughter takes MTX with Zofran and besides some fatigue and mild nausea, has no issues. She has been on Humira for years.
 
Thank you all so much for the input, we will def talk to the dr about all of this. Does adding the mtx increase risk of lymphoma or is that just with 6mp? I know, it's a small risk but still...
 
Studies show just 6mp. Methotrexate does have some liver issues but still small and manageable by coming off the drug and they monitor closely for it.
 
I thought it was both MTX and 6MP too...the risk is 2 in 10,000 for the average person and 6 in 10,000 if you are on both an anti-TNF and an immunomodulator - that's for non-Hodgkin's Lymphoma.

For Hepatosplenic T cell Lymphoma (the aggressive type of cancer), the risks are smaller. It has mostly been found in young males who were on 6MP or Imuran and Remicade. The average age was 23.

All this info is in this presentation: http://programs.rmei.com/CCFA139VL/Slides.pdf
 
An alternative practice, substituting the immunomodulator MTX for a thiopurine in combination with biologic therapy, warrants consideration. In a recent review examining the long-term safety of MTX therapy in RA, Salliot and van der Heijde concluded that there did not seem to be an increased risk of lymphoma in adults receiving MTX monotherapy with mean dose of 10.5 mg weekly (range: 4.6–18 mg).[79] The majority of experience of combination biologic therapy with MTX arises from the rheumatology literature, where a biologic is almost always used in combination with MTX. Although the clinical trial literature has suggested a potential link between anti-TNF therapy and lymphoma,[80] longer-term RA studies suggest there is no association. Wolfe and Michaud led a large observational study of lymphoma in 19,562 adult patients, which included over 89,710 person-years of follow-up including anti-TNF exposure in 10,815 patients. This study found no evidence supporting a link between anti-TNF therapy, MTX or combination therapy and the risk of lymphoma in routine clinical practice.[70] This study is in agreement with an analysis of the linked cancer registry reports from adults with RA in Sweden by Askling et al..[68] Pediatric juvenile idiopathic arthritis (JIA) observational studies provide further reassurance.[69,81] Beukelman et al. observed 7812 children with JIA with 12,614 person-years follow-up. The standardized incidence ratio (SIR) for probable and highly probable malignancies was 4.4 (95% CI: 1.8–9.0) in children with JIA versus children without JIA. The treatment for JIA, including MTX monotherapy (SIR: 3.9 [95% CI: 0.4–14]) and TNF inhibitors (SIR: 0 [95% CI: 0–9.7]) did not appear to be significantly associated with the development of malignancy.[69] Most of the studies in the rheumatologic literature do not account for RA severity. This could be important because natural history studies in RA have exhibited an increased risk of lymphoma in comparison with the general population, primarily thought to be linked to high levels of disease activity.[68–70,80,82–84] In summary, large recent population-based studies primarily in adults with RA provide us with reasonable reassurance of the lack of an association between MTX and anti-TNF and lymphoma. However, analyses controlling for disease severity in adults and children with RA and JIA have been more difficult to conduct. Continue Reading
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From
http://www.medscape.com/viewarticle/779246_11
 

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