Did your teens or pre-teens grow after Crohn's treatment

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BoyMama2000

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Sep 3, 2011
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Hi,

We are going to see the ibd clinic on Tuesday to begin my 13.5 year old son's treatment for a new diagnosis of Crohn's disease isolated to the terminal ileum.

We live in the U.S. where enteral nutrition is rarely used. I think their initial thoughts are budenoside and maybe imuran. I am not sure why they are thinking of a med that is used more often in mod-severe crohn's when his is mild. Literally his only symptom is growth.

I was curious what treatments you all used and if you saw a change in growth and puberty after treatment. After my research, I was thinking of budenoside to start and then pentasa or asacol for maintenance but am concerned that budenoside can inhibit growth. Since that is the only symptom, it should certainly be the focus of his treatment initially.

Am I missing something? Enteral nutrition would be very tough for him with Thanksgiving and Christmas coming up but I wonder if it is the best for him given our circumstances.

Also, would any of you start with imuran given the potential risks, especially in boys.
I would love your opinions on this so I can go in with the best questions.

Thanks,

Mom on Sean
Diagnosed Nov 3rd
Isolated Terminal Ileum
Only symptom - delay of growth and puberty
 
I don't have any kids myself, but there is a boy in the school where I work who has Crohn's. He is now 10 years old, has suffered with different health issues (now attributed to the Crohn's) since he was 6. He was diagnosed a year ago. He is being treated with sulphasalazine (he could not tolerate mesalazine). Mum wants to avoid the 'stronger' meds (including steroids) for the same reasons as you. Although he is still notably smaller than his classmates (and indeed, his brother who is 2 years younger), he has matured in the past year, his face looks older and while small, his frame is not so weak looking.

Personally, I gave Pentasa a go on its own before I went on to the azathioprine (Imuran). But I was also on prednisolone to knock down the inflammation to begin with. During this time I had to restrict my diet to low residue foods, as I couldn't tolerate anything else. I also drank Build Up and Slimfast shakes for extra nutrition.

Obviously, the final decision is up to you and Sean.
 
Hi, I am sure others have read my posts in the past. The initial treatment in Scotland is always the liquid diet for 8 weeks before they start any treatment. My son is 12 and just finished his 8 weeks and so far remains symptom free and I am truly hoping it stays that way for a long time as his was mild to. I know it would be difficult over Christmas and new year but getting better is very important and he is still allowed a few things like 7up, chewing gum and glacier mints. If he cannot take the drinks he can always get a nasal tube like my son did (he can't stand the drinks) which he got used to within a few days. Good luck with the treatment.
 
Hi,
I've been treated for Crohn's with pretty much everything available over the past 11 years, starting when I was 12. I've been on Pentasa, imuran, methotrexate, etc.. all during my teen years. I'm 6'2''. I guess I look somewhat young for my age, but nothing to out of the ordinary. So the meds didn't affect my growth at all I would say.
The nutrition route was also never mentioned to me or my mom as far as I know.

Michael
 
My son was 15 at dx. Up to that point he had barely even started puberty. After treatment, he has grown at least 5 " over the summer and still going I hope. Lucas is on Imuran but initially started out with just Pentasa and pred. Things got out of hand rather quickly and we had to move to the Imuran. I can't tell you how hard i struggled with that decision. Ultimately, you have to do what feels right for you and your son. Bravo for educating yourself and trying to make informed decisons.
 
Thanks for the posts so far. Hearing that you all grew after being treated with steroids is good to hear. Budesonide has less systemic effects but it is a steroid. It seems it is best to get into remission so that growth can take place. Maybe what I am reading is about long term steroid use. It sounds like most of you used them for a bit but not long term for maintenance.

Radchic - I truly can imagine how hard it is to decide whether or not to put your son in imuran but I also know that we often have to take "leaps of faith" at times with our decisions related to our children. I couldn't find any research that really quantified the risks well so it is hard to know if it is even worth worrying about! 5 inches just over the summer is amazing! Do you also see an endocrinologist to monitor his growth? They say my son is just about to start puberty....whatever that means. He is only 4'9" at age 13.5 and was always on the curve to be arund 5'7" to start with. The only reason we caught this was that he went from the 15% in height to the 10% from age 12 to 13 and then to 3% at age 13. We started with endo and ended with GI. The 2nd endo we saw really thought we would find a GI cause because his only abnormal blood number was his IGF-1 and this is often low with inflammatory diseases.

We are just having a hard time in so many facets of our life right now and I know feeling like he is able to grow again and hopefully prevent this from getting worse would be something positive for us.

Thanks for all of your feedback. There is nothing more helpful than hearing from others who have been through (and are going through) this.

I am so grateful to all of you.
 
My son had missed a year of growth prior to his steroid taper followed by a year on 6mp and now Humira.

The decision to use these meds is never an easy one. They've kept EJ going and growing for almost 2 years now but not a day passes I don't worry about the possibilities.

Let us know what you decide.
 
Dexky,

What would you decide if the only symptom is lack of growth? If he was in pain, not functioning and having other symptoms, of course we would have to do this despite the potential growth issues. I am just struggling because the only reason he was diagnosed with Crohn's is that he was referred from his endocrine doctor to GI to see if there were any GI causes.

I wonder if there are any other meds that work well and don't effect growth negatively. I do lean towards trying to get this in remission to see if he grows but as with all of our decisions....the pros and cons are often not easy to balance.

I am glad he is growthing after remission! I will let you know what we decide tomorrow after we return from the IBD clinic.

Thanks again for your input.
 
What would you decide if the only symptom is lack of growth? If he was in pain, not functioning and having other symptoms, of course we would have to do this despite the potential growth issues.
Click to expand...

Hi Mama2000 :)

In reference to your quote above, maybe you have answered your own question.
What if the result of withholding those meds results in pain, lack of functioning and much more?
Unfortunately Crohn's is nasty and sneaky. It likes to play hide n seek and sometimes you don't find it until things are really bad, like in my daughters case. If I had to do it all over again and put her on meds years ago when she was asymptomatic (she started this journey of Crohn's with just a nagging cough at 9 years old) and they just "thought" she "might" have Crohn's, I wouldn't hesitate for a second.
I know the meds themselves are very scary at the thought of the potential side effects, however IMHO it is much scarier to not take the preventative meds and take the chance of the disease reeking havoc in my child's life. You have the chance right now of trying to prevent his disease from showing any other significant symptoms and keeping him in remission for hopefully a long time while he grows :)
I wish you the best of luck in whatever decision you all make, I know it's so hard to do.
hugs,
~T~
 
Thank you, we will definitely put him on some meds....we are SO THANKFUL this was caught prior to any symptoms. It is just trying to determine what meds will meet our short term goal of growth.

Thanks so much for your input. We are grateful that we can get him on meds when this is only in 3cm of his terminal ileum!!!
 
Rebecca85 said:
He is being treated with sulphasalazine (he could not tolerate mesalazine).
Click to expand...

Is sulphasalazine generally better tolerated than mesalamine? Doesn't it just metabolize down to that anyway?

I'm curious about this now. Sarah has never been able to take Pentasa or Asacol because they make her bleed.
 
We were faced with a similar issue with our son. His only symptom was slow down in growth and loss of weight. I agonized over the decision about meds and ultimately decided on 3 months of Prednisone and 6mp for maintainence. Although my sons disease is mild now, it seems that can change dramatically very quickly and I think it is easier to get into remission when the disease is mild. So we dwelt this was his best chance at long term remission. Our Dr did say that short term prednisone would not affect his growth. He has been on both drugs now for 6 weeks and has gained 15 lbs and grown an inch. Most dramatically is that we have our son back. He feels better and we had not realized what a toll this disease took on him until he was healthy again. Good luck with your decision, I know how hard it is to put your child on meds for perhaps the rest of their life. Good luck with whatever decision you decide to make. Wish I had years of experience to direct you but hope this helps a little. Tiffany. Mom to Johnny dx 10-10-11
 
Johnnysmom - WOW! He grew an inch in 6 weeks while taking predinisone. That is wonderful news. He must feel so much better physically and mentally. How old is your son? I hope and pray I will be writing the same thing in 6 weeks from now. That is quite a dramatic change in a short time. It does motivate me to do the steroid budenoside. I was just curious about the med slowing his growth even if it helps him to go into remission. It sounds like remission is more important than the potential side effect of the meds. It is also interesting to know that if it is used for a short time, it doesn't effect growth.

I hope he grows another inch in 6 weeks and continues to feel better!
 
I'm glad Tracy answered that question:) I'm not sure! If the lack of growth was dramatic enough to send us looking though, I suppose I'd be willing to try the meds. But, yeah, mom that's a tough dilemma!!!
 
What Crohn's Mom said! The choice to not take medicine through my childhood and teens resulted in a stricture and surgery at age 18. While the meds suck and can be scary to give to your child, remember that you ARE helping! Lack of treatment can be the factor in changing what would have been moderate Crohn's into severe Crohn's. Good luck to you and your son!! :hug:
 
Hey BoyMama,

I would well imagine that the length of time your son will be on steroids will have zero effect on his growth. The crucial thing is to get the inflammation under control because while ever it is there he will grow and develop very little. So even without steroids his growth is inhibited.

We didn't have the opportunity to go down this path with my daughter, emergency surgery was her only option. BUT once that crappy piece of bowel was dealt with the change was mind boggling! It didn't happen overnight with Sarah because she was starting from a very poor condition. She was 14 and 1/2 at the time of her surgery and didn't even look like going through puberty, the first 6 months there wasn't much change but the following 12 months was dramatic. I think the GI's jaw hitting the floor when he saw her was testament to that. :lol:

Matt was diagnosed with mild to very mild Crohn's in December last year and things just went down hill from there even with steroids, so surgery it was for him too. I think in the initial stages this disease can be so very insidious. I thought Matt wasn't doing too badly when diagnosed, sure he looked a bit tired and pale but I found 101 reasons for that. It isn't until now that I realise just how poorly he must have been. Physically he is a different boy, he has grown and matured but the psychological change is just as astounding. I truly didn't realise how much of his old personality was gone until it started coming back again.

As far as the meds go, well to say I hate seeing my children take Imuran everyday would be an understatement BUT I never want to go back to those dark days of Sarah again so I see it as the lesser of two evils. I know your son has lack of growth as his only symptom but for inflammation to have the ability to affect the body in such a way would lead me to question what else it may be doing, there must already be malabsorption present and whilst untreated the inflammation isn't going to go away on it's own so damage to the bowel is continuing.

Grab the bull by the horns now and knock this disease on it's butt! Get your boy into remission and well and truly onto the road of growth and recovery!

Good luck Mum. I know only too well how agonising these decisions are...:hug:

Much love, :heart:
Dusty. xxxxxxxx
 
Hello Everyone,

We had a good first visit with the IBD team yesterday. Sean is starting on Pentasa, 1000mg 2 x day. He is also taking Omega 3 fatty acid, multivitamin and 1000 IU of Vit D. We are adding another boost smoothie to his diet. We started them about 6 weeks ago. This one will be at bed time. We may add more supplements once the blood work for micro-nutriets gets back.

They want us to follow up with his endocrine doctor and get the bone age x-ray done in December. We will see both endo and GI again in 3 months to see if things are working.

In the mean time, we will follow what they said and pray for weight gain and growth. The doctor said to expect weight gain before height gain. They also discussed his blood measures for IgG that were high. They will re-measure this. At this time he does not have Celiac disease but when this number is high they take a watch and wait approach because no one really knows what to make of it at this time unless they see damage to the villi in the duodenum. Our doc is doing a lot of research on this as we speak.

So, now the waiting game begins. It is hard to wait for growth since no other symptoms exist. I almost hope we find some nutritional deficiencies so we have something to measure to see if treatment is working.

If Pentasa does not seem to be working, we will more than likely do overnight enteral nutrition via N-G tube. They actually talked to us about this and yes we are in Colorado, USA! He would get about 90% if his calories this way and could eat during the day if he wants. Remission rates are as high as steroids with growth rates increasing more rapidly. There is a part of me that would like to do this right now but it is best to see if the most mild meds will work first. His case is mild right now, so hopefully they will.

Thanks for all of your guidance and support through this ordeal.

Sean's mom
 
Thanks for the update BoyMama!

I know the waiting is hard, I think it's about the hardest we have to do! but it sounds like you have a good solid plan! YAY! There's nothing better than direction and something too get your teeth into. :)

I hope you start to see some positive results and keep us posted on how Sean is travelling...:goodluck:

Dusty. :heart:
 
Hi BoyMama,

Not sure how I missed this whole thread but wanted to pass along good wishes that you start to see some weight / height gain soon in Sean!

My son was almost 17 when diagnosed so, although he was always slim, he was already fairly tall when diagnosed. In his case, I didn't see that crohns had much of an impact in his growth. However, having said that, he did lose close to 20 lbs in the weeks/months prior to being diagnosed. His treatment was enteral nutrition through an NG tube for six weeks. After the six weeks, he tapered the formula down to half the dose and added back all foods. So far, the only medication he has taken is Nexium. He has gained almost 30 lbs from his lowest point.

The decisions are always tough! But it sounds like you're on track to keep the crohns in check!!

Wishing lots of luck to Sean!
 
He was taught at the hospital and it honestly only took him a couple of days to get the hang of it. Within one to two weeks, he was asking me to 'time' him to see how quickly he could do it (by this time, it was only taking him less than 10 seconds to insert the tube). :biggrin: But, I think everyone's different... there have been other members who have said that they found it difficult (which always so surprised me as my son found it so easy???). I've thought that, when he was diagnosed, we were given very little choice. Steroids were mentioned very briefly and discouraged and we were left with the impression that he had no choice but to learn to insert the tube. This may have influenced his mindset in that he didn't know there was any other choice.

But, I certainly don't want to discourage you by saying that some find it difficult! He was diagnosed in May and has since only had a few minor issues. I believe it's a great option, its taken him into remission (I think) with only Nexium as a medication. His treatment continues for one year at half dose 5 nights per week. However, the success rate at maintaining remission long term is not as high as that with other medications. My son's recent ultrasound and MRE still showed some slight inflammation at the TI; the IBD nurse told me that it's slight enough that they aren't worried but that they would be calling with a follow up apptmt anyway. So we'll see...

Its certainly something to keep in mind should Sean not react as well as you'd like to the new medication levels.

Let me know if you have any other questions re the enteral nutrition (or tube, etc.) or you'll also find lots of info in the Enteral, Elemental Nutrition thread under Treatments.

:ysmile:
 
I was glad that the doctor and nutritionist talked about it because when your kids only symptom is growth, you hate to try a medication that can inhibit growth and it seems that the data with growth strongly supports enteral nutrition. For some reason, it has not taken off in the U.S. In fact, we were told that some insurance companies don't pay for the formula. I will have to see if Anthem Blue Cross does if we end up going that route. I went to his appointment ready to push for enteral nutrition if they recommended steroids. When they didn't, I felt the best course would be to start with this and keep that as a back up.

I am glad to hear it went easily. If he did this, they did say he would stay in the hospital for one night and learn how to do it.

Time will tell, hopefully this will do the trick since he only has 5cm of his TI affected!

Thanks for the feedback.
 
Our insurance does not cover the formula. :mad2: Their argument was, first, that it was only a nutritional supplement. When I supplied them with a letter from his doctor and studies detailing it was a 'treatment' not a 'supplement', they then said that it is available without a prescription and they don't cover items that don't require a prescription! :mad2::mad2: Seems they always have an excuse!

So far, a regional health agency is temporarily covering the formula but I'm not sure how long that will continue. After that, I believe our provincial drug plan will cover part of it...
 
Wow, I wonder if it is a lot more expensive than steroids. Did they pay for the time in the hospital to learn how to use the equipment?

I thought it would be covered in Canada where it is a more common treatment approach. That really stinks!
 
I don't know how much steroids cost but the Tolerex formula costs approx. $15 per pack and Stephen uses 5 packs per night.

Ontario Health pays for all medical supplies/medications while you are in the hospital and then the regional organization pays for the 'take home' supplies (i.e. the initial 6-week prescription and all supplies), they 'may' pay for some follow-up but this can discontinue at any time (so far, they have been very supportive!!) and, then, if your private insurance doesn't cover it, Ontario has another plan which will pay a portion of the cost (which I've calculated will cost us approx. $5-6,000 per year). No doubt we'll eventually be at this plan as, sooner or later, the regional organization will end their support.

I don't mind paying my fair share but I really mind the reasons that our private insurance won't cover it, i.e. that it is a nutritional supplement only!
 
Hey BoyMomma - I hadn't really noticed my son being much smaller than most of his friends when he first became ill, however I have noticed the change in the last year. He'll be 15 in December and is definitely started puberty, but since he was first diagnosed in April 2010 he's put on almost 40 lbs and has grown almost 5 inches! It's amazing he's still "small" for his age and is still lean. He's now 109 lbs and 5'4+" tall. He was on steriods for a short period while in the hospital and then for a while when he first came out, and he's on 3500 mg of pentasa per day. I also have him on some omega-3s and daily supplements.

My doctor told me if he's suppose to be 6 feet tall, he'll get there, just not as fast as he would without the Crohn's and that watching what he eats is the best way to ensure it happens (given his body doesn't absorb nutriention as well as our does).

The doctor was funny, she asked him if he was getting any "new" hair in any "new" places - and he was very excited to say yes - She said, "Puberty has begun." laughs!

Good luck!
 
Hi Everyone,

I thought I would give you an update on my 13 year old. He has been on the new routine for 7 weeks and has gained 9 pounds. He has not grown in height yet but they did say to expect weight gain prior to height gain. He is getting used to the new way of eating, the supplements, meds and the new routine.

We go back to endocrine and GI in early February. Now we are just hoping to see some signs of puberty and height gain.

Thanks for all of your help.

Sean's mom
 
Yeah!!! Great news!

They do say that puberty can be delayed for boys (not sure about girls) with Crohn's. My son Alex just turned 15 in December and has finally started showing signs in the last 6 months that his body is changing (though, and we laugh... his voice isn't showing too much of a change yet!).

As Sean's body get the nutrition he needs, puberty will come along!

Btw Sean's Mom - what's your name??

Shell
 
My name is Nancy.

Of course, I was just laughing with a friend that Sean is a lot nicer than his older brother was at the same age so the delayed puberty has its advantages!!

Is Alex small for his age?

Thanks, Nancy
 
I'm new to the forum. I found this post while searching the net for more information related to growth in pre-teens/teens with Crohn's. Many thanks for posting about this important issue. I found the posts helpful and felt more hopeful after reading. Thank you!

Our now 12 year old son was diagnosed with CD in June 2012 during 8 day hospital stay when he was 11. He went from 92lbs to 100 back to 92lbs in one year and then lost weight quickly (83lbs in hospital), and height went from 75th%tile to 50th. Started with Budesonide, Pentasa, and enteral feeds via ng tube. Enteral/formula diet only for 9 weeks. He started gaining weight and felt better almost immediately and reached remission relatively quickly. We attribute much of this to the enteral feeds. He was quickly weaned off the steroid primarily because of concerns about growth but remains on Pentasa, takes nightly feeds 5x week via tube, and has been on strict Specific Carbohydrate Diet (our choice, not doctor's, and formula feeds aren't strict SCD although do mimic the diet) since starting back on solids. Has has felt great, has gained 25lbs and we are starting to see some growth (yay!!), chest seems to be filling out, although no other signs of puberty. Was tallest among friends but now shortest, however, we know there is a big window of time for the growth spurt, particularly for boys, and we, including him, feel very hopeful it will come in due time. Being a soccer goalkeeper has been his passion for a long time so unfortunately height matters...
 
Welcome Soccermom
Lots of support here, I have a 13 year old son who was diagnosed at 10 and he as well went from being one of the tallest in the class to the smallest, we have seen some growth, I think he is still a little delayed but he is not the smallest anymore although probably still one of the skinniest :D I'm hoping and thinking we will get a big growth spurt this year.
Glad your son is feeling so well and enjoying soccer. We have not gone the EN route but has only been on pred for a short time when he was first diagnosed. Wish I would have known about EN at that point, but as his father has Crohn's and has always had to treat a flare with pred. I didn't question it. However, I will demand EN if the need should arise again.
 
I think the crohn-growth stunting is a bit blown out of proportion sometimes, it is delayed growth sometimes I believe, not growth stunting which is something else.

I have had crohn's disease as a little kid, I have had it for 12 years now, I have never seen a person with crohn's disease that is smaller than average, I was monitored and had my growth plates checked and I turned out fine with a normal height.

All hospitals I have been to, I know most inside and out by now, I have seen many parents drive doctors absolutely bonkers with questions about growth, every doctor has the same reply, eat enough calories, the rest is out of the patient and doctor's hands. The focus should be the disease and making sure the person stays in remission so they can eat enough, if they turn out a bit smaller or taller, c'est la vie, it is nothing compared to an uncontrolled disease, low priority, it should not be used to influence treatment in any way, priority is protecting the intestine from out of control inflammation.

Crohn is a serious disease, before I wanted to accept the disease I was close to death twice, I had perforations and went into a coma and God gave me 2 free lives, I do not care how tall or short I am, I am happy to be here alive and kicking because an angel granted me another life. It is a bit strange that people talk about growth or if they lost a few strands of hair and drive doctors up the wall sometimes, I do not mean offense at all, but it is an outside characteristic that is meaningless, people of all heights can be perfectly happy.

Also, I think focusing too much on growth has a negative effect on the child, there are many tall people who are happy and many shorter people who are happy, it makes life interesting. As long as there is no nutritional deficiencies or actual issues, be happy and focus on life I would say.
 
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Hi soccermom. :bigwave:

Have a read of this thread, Patricia has some try good information contained within it. :)

Dusty. xxx
 
I think why so many parents myself included focus on growth was for many of us the first sign of something wrong was the lack of growth, Jack did not grow for 2 years. So we use that as a measurement of their health as in if they are growing, then the treatment is working. While I agree you can be happy no matter your height, I'm short and my husband is tall and Jack certainly does not focus too much on his height but he certainly knows he is shorter than most of his peers and calls himself "fun size"
I guess what I'm trying to say is if they are not growing whether they are tall or short then does that mean we should be worried the disease is doing damage on the inside so yes our primary concern is health and growth is just one indicator in pediatric health and one of the quickest to measure.
 
Welcome SoccerMom and Hey Nancy!!

It has been a year since I've posted on this website - I can't believe so much time as passed... Regarding growth - there is plenty of information/evidence out there showing that the lack of appropriate nutrition will affect growth rate and the onset of puberty. It will affect it, not necessarily stop it. My son's GI told us that IF my son was destined to be 6 ft tall that he will still hit it, but probably much later than most of his friends. That has rung true. But the GOOD news is over the last 6 months Alex has shot up over 6 inches and is finally taller than me (I'm 5'8")!! He's also gained quite a bit of weight and his voice has changed (*that* has been a laugh!)...

He has been in "remission" now for a good year. His regiment of meds is still the same and he is on a diet of "if it doesn't feel good, don't eat it". He has stayed on the lactose free dairy products, avoids too much fried food (though he's an Ice Hockey Player and after a game his favorite meal is a whopper, fries, onion rings and a drink and he eats it all...) He also drinks a ton of G2.

He's average height/weight with his friends now (taller than some, shorter than others), but he's building mass - muscle mass, which is VERY cool to see as he was all skin and bones there for a while...

At 12 your son has plenty of growth time ahead to fit into that goal :D

Good luck in the Spring Season - God bless!
 
Great to hear the update Champs mom!!!!

We saw a great endocrinologist who said that growth was more about weight and nutrition than the crohn's . This has been true for us so far. I just wish it wasn't so hard to keep the weight on!
 
^^^ yeah that!!!
Peptamen jr saved DS without it he would not gain weight. :)

The trick is finding a good one your kid needs and is willing to drink
 
I agree about the weight being an indicator that something is brewing inside. Ryan takes a growth spurt everytime we get "remission" from his meds. When his Crohn's is acting up, he is deprived of nutrients. He gets absent minded and stops growing. I just use the growth as a sign to get some bloodwork checked!
 
Welcome to the forum. Lots of good input from folks. My son was 10 at diagnosis and had dropped from the 50% to 11% in height in 3 years so I understand where you are coming from about the height issues. He did not start growing significantly until after he was in solid remission thanks to Humira and Methotrexate. Then his growth happened steadily rather than in a big spurt. He is 17 and still growing.

What I would do if I were you, knowing what I know now, is to use whatever meds and/or EN necessary as quickly as possible to get him into perfect remission while he grows and then back off on the meds later.

I bring a different interpretation to the information you've shared which leads me to a different set of conclusions about the severity of his illness. Regardless of the severity of his illness, it seems to me that the treatment choices you've shared may not support your stated goals very well.

I think growth failure is not associated with mild disease.

Growth failure means two things: he was malnourished and he had significant systemic inflammation.

Severity of disease is correlated with growth failure, both height and weight. The more severe the the inflammation the greater the growth delay/failure is likely to be. You said your son dropped from the 13% to the 3% in less than 2 years. If this is used as a guide to the severity of your son's illness, then one cannot conclude that his Crohn's is mild.

Here is an excerpt from a leading Ped IBD program's guidelines that I am quoting because it shows how they categorize a child with growth failure.

Cincinnati Children's Hospital's Guidelines for management of Pediatric Moderate/Severe IBD include the following:

It is recommended that clinicians use a physician global assessment (PGA) to determine disease severity for pediatric CD or UC (Local Consensus [E]). Note 1: The physician global assessment (PGA) includes four categories: quiescent, mild, moderate and severe disease activity....
Note 3: CD patients with mild disease as indicated by history and physical, but who have significant growth failure are placed in the moderate disease severity category
Click to expand...

http://www.cincinnatichildrens.org/...9199/488d3bf6-5f6b-47ca-b263-9805277ba18b.pdf

My son is one of the ones with near perfect labs and nearly no symptoms but growth failure and a gut full of ulcers and strictures. Crohn's can be nearly silent but no less severe for it's silence.

But setting aside the question of how severe his disease might be, the treatment plan still doesn't make sense to me.

Given that your son is almost 14, is at his peak growth right now, and you see growth as a major treatment goal - you have chosen a treatment plan that does not optimize his chances for sustained remission. And sustained remission is what he needs for the next three years at least to optimize his growth and passage through puberty. Instead of 6MP or Methotrexate or, if your GI felt it was appropriate, a biologic, you have chosen a minimal treatment plan relying on a medication (Pentasa) which, in a double-blind, randomized, controlled one year clinical trial, failed to prevent relapse in pediatric crohn's patients.

http://www.ncbi.nlm.nih.gov/pubmed/19118966

I know there are a few people for whom Pentasa has worked and worked well. But from my reading of the literature, experience with my own son and after "talking" with hundreds of parents in online forums, Pentasa is not the med to hang your hat on.

The little bit of published research on this issue that I could find only found a significant effect on growth for remicade, and not for any of the other meds currently in use.

I sincerely hope that your son is doing well on the current approach. If he's not, I hope you and your son's GI will have a frank talk about his disease severity and what the GI's expert recommendations are with an eye toward achieving a sustained, solid remission.

One question has been nagging me as I read through the thread. You keep saying that growth was his only symptom. If that's true then how are they going to decide whether he's doing well or not on just Pentasa?
 
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Patricia has made some excellent points. I felt my original message may have been misleading so I wanted to clarify. I do think the proper medication is hugely important.

We did use Prednisone to get my son into remission. The Dr. said the short 3 months he was on it would not effect his growth. Long term steroid use will effect growth.
He is also on a maintenance medication. (6mp)
Pentasa alone is not an adequate medication for anyone with crohn's. Our GI said it was like taking aspirin for a brain tumor.
His disease might be classified as mild but anyone diagnosed as a child does not have mild disease. When they classify it is based on what they see that day during the scope. But being diagnosed young is an indicator for severe disease course. So what the disease will evolve into has little to do with what it looked like the day of diagnosis.
Growth is a huge symptom. You literally have to be about starving to stop growing. Our endocrinologist said growth stops at about a BMI of about 20%.
I would really consider some stronger meds. I truly believe that early on is your best chance for remission and it will prevent the disease from becoming severe.

(((((Hugs))))))
 

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