# Growth in Children with Crohn's Permanent?



## Mj1gaynor (Jun 30, 2013)

My son (9 years old) was recently found to not be growing at the proper rate and his test results indicated a need to see a specialist.  The specialist indicated that results indicate Crohn's disease, but they will not be able to give additional information until an endoscopy is done in 4 weeks.

My husband was diagnosed with Crohn's many years ago, but has not had any issues in the last 25 years since he had surgery.  His Dr. told us he was the "miracle patient"

Question:  Will proper treatment for Crohn's allow for him to grow to normal height or is the lost growth permanent?


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## crohnsinct (Jun 30, 2013)

I would have to say yes indeed he will grow.  Especially of you caught the disease prior to puberty.  My daughter was dx'd at 12 and she is now 13 and has frown 5 3/4" since we got her Crohns under control and I dare say she is still growing. Axtually about to hit the height her GI said we would be lucky to hit! 

The important thing is to get the inflammation under control and get him to remission.  Sounds like you have a good doc on your side.  Good luck with the scope and keep us posted.


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## Jennifer (Jun 30, 2013)

I was diagnosed when I was 9 years old and took many different medications over the years including Azulfidine, Asacol, 6MP, Prednisone (highest dose was 60mg) and Entocort. I took Asacol, 6MP, Prednisone and Entocort combined. 

My GI told me that my growth may be stunted but that I would continue to grow up into my 20's. He was right. I had been telling people that I was 5'4" for years (my height was measured in my early 20s). Recently though after being around other people who claimed to be 5'4" I decided to have my height checked. I'm 31 years old now and I'm 5'5 1/2". I grew sometime in my mid 20's. So no I don't believe that the lost growth is permanent. 

I'm sorry that you're son has to go through this. His father's story does sound promising. Hopefully your son wont need surgery to get into and stay in remission though.


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## my little penguin (Jun 30, 2013)

DS had his weight and growth slow due to crohn's as well.
He stopped gaining weight from age 5 -7.
He only grew 2 inches from age 6-8.
Once he started  remicade /pred /EEN  he gained 20 lbs and has grown 4 inches .
He was 75% for weight /height up to age 5.
He went down to 25%
Now he is back to 60% so we are catching up.

Good luck


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## Mehita (Jun 30, 2013)

Why only an endoscopy? For Crohn's I'd think he'd be having a colonoscopy as well. Be sure to ask for biopsies and copies of all his records from here on out. It will help you tremendously as time goes on.

Like crohnsinct said, since you're catching this before puberty, growth shouldn't, in the end, be a problem. You may find puberty delayed somewhat or it may take a little longer to hit his full growth potential, but as long as you can get and keep the Crohn's under control, it shouldn't be a problem.

Has he been tested for Celiac Disease? That's another potential "growth stopper" in kids. 

Good luck with the scope(s). Keep us posted!


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## Amy2 (Jun 30, 2013)

My son continued to grow taller, but he did not continue to put on weight.  And now his frame is so thin, he's built like a female fashion model and I'm hoping that he can thicken up a bit!  He's 16, but his older brother grew until he was 20 and then got wider after that, so I think there's a good chance.  Sure hope so!


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## my little penguin (Jun 30, 2013)

Mehita
Sometimes docs refer to it as an endoscopy - upper and lower endoscopy .
Instead of a colonoscopy and egd .(esophageal gastro -duo ) endoscopy .


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## Brian'sMom (Jun 30, 2013)

I sure hope delayed growth isn't permanent!! We see endocrinologist in August- FINALLY!! I had to push for this. We've just been nagged by the GI for the past 2 1/2 years about slow growth. But we've had inflammation under control for 2 years and then flared last august. With the help of methotrexate...we're back under control. But where is the big spurt in heigth? We're doing everything the GI says to do....Even did bone scan...growth hormone test, etc. So I said I want to see a growth specialist. Maybe this is just how he was going to grow...before being triggered by crohns. Hopefully we'll get some answers soon. Maybe this could be something you mention to your GI...adding a visit to endocrinologist


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## CarolinAlaska (Jul 1, 2013)

Enteral nutrition has helped a lot of underweight kids to gain and grow.  My daughter also has that and has very little appetite.  She was found to be zinc deficient because of her Crohn's.  Zinc deficiency takes away their appetite and causes skin problems (she didn't have this).  She doesn't like the enteral nutrition, but she is doing it, because it really is helping her gain and grow.


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## DustyKat (Jul 1, 2013)

My two have grown since gaining remission, both of their's was surgically induced. 

My daughter was a little older than your son when diagnosed, she was 14 but went undiagnosed for quite a period of time. Puberty wasn't even on the radar but once she picked up post op she grew at an alarming rate and fast! Both up and out, if you get my drift! :lol: 

My son was older when diagnosed, 17. Puberty had started for him but remission brought much faster change. 

As cic has said, getting the inflammation under control is the key. Whilst ever that is present the body is too preoccupied and expending a huge amount of energy in trying to keep tabs on it to do anything else, growth and weight gain included. 

Good luck with the scopes hun. Once you have answers and a successful treatment plan your lad will surely grow. :ghug: 

Dusty. xxx


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## Mj1gaynor (Jul 1, 2013)

I just want to thank you all so much for your posts!   Having others share thier experience is very helpful as we begin this journey.  You have all really made a difference for me. Thanks! :hug:


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## Mom2oneboy (Jul 1, 2013)

I agree with the others in that once the Crohn's is under control you will start to see some growth. My son has grown an inch in the past 3 months.


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## Jenn (Jul 1, 2013)

Have an endocrinologist do a hand xray to determine his bone-age and see whether his growth is delayed or skipped. We found that my son is 2 years delayed from his birth-age. The key is delayed, not skipped, and he has been growing again after treatment. We are keeping a close eye on him that he will reach his full potential height. It's critical to keep the IBD under control for overall health, but also before/during puberty for growth. Wishing the best for you and your son.


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## Livia (Jul 1, 2013)

I just joined this group, and this is my first post. 
My 13 year old grandson was diagnosed with inflammation of ileum and gastritis. 
The test was inconclusive for crohn's. His gastro doc. gave him Entocort. He is also seeing an endocrinologist for growth problems and is taking growth hormones.

His parents are worried that the Entocor is stunting his growth. Is this possible?
Any input would be appreciated.  Thank you 
Livia


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## Jmrogers4 (Jul 1, 2013)

Welcome Livia,
My son is also 13, Entocort is a milder form of steriod compared to prednisone in that it is not completely systemic like prednison it is designed to release in the GI tract as opposed to the whole body.
However I don't believe it is meant to be a long term drug but more to get inflammation under control.
Did they do scopes to dx inflammation?  How long has he been on Entocort?
My son did not grow for 3 years due to active Crohn's and lack of nutrition, once we got the crohn's under control and added supplemental nutrition in the form of semi-elemental formula drinks he gained 23 lbs and grew 1.5" in 8 weeks he is continuing to grow since then (we did this in Feb/Mar) and are hoping for a big growth spurt to hit soon.
You have come to a great place for lots of information and support.


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## Dexky (Jul 2, 2013)

Livia said:


> I just joined this group, and this is my first post.
> My 13 year old grandson was diagnosed with inflammation of ileum and gastritis.
> The test was inconclusive for crohn's. His gastro doc. gave him Entocort. He is also seeing an endocrinologist for growth problems and is taking growth hormones.
> 
> ...


What kind of testing did they do?  How long has he been on Entocort?  I would imagine Entocort would increase his appetite some so it shouldn't stunt growth on its own.


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## my little penguin (Jul 2, 2013)

If a child is battling inflammation that is more likely to cause his growth to be stalled.
Most studies on inhaled corticosteroid ( used for asthma so similar to entocort ) show that growth at most is only lessened by a 1/4 of an inch.
However numerous studies have shown kids with Ibd do have growth issue when it isn't under control.
Formula that is semielemental or elemental has helped my son keep growing and gaining while trying to get the inflammation under control. I know it also helped a few other kids still grow even though their disease was not under control as well.
Since semielemental formula only uses the first few inches of the small vowel for absorption vs food which needs alot more healthy small bowel .
DS drinks three peptamen jr a day . This has really helped him.
He says it takes really bad though .


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## crohnsinct (Jul 2, 2013)

Hi Livia and welcome! 

I wouldn't imagine the Entocort would stunt his growth as much as the inflammation.  The priority would be to get the inflammation under control and possibly even get a more definitive idea of what is going on inside.  I don't think Entocort is a long term solution if he is ultimately dx'd with IBD.  At that point they would probably move him to one of the other non steroid maintenance meds.  

What are his symptoms?  His his growth already delayed?  How is his weight?  
What tests did they run?  Scopes?  Upper and lower?  Were biopsies taken?  Biopsies were inconclusive?  

An extra shot of one of the formulas wouldn't be a bad idea.  My daughter did very well on Boost and Ensure but majority of her Crohns is in her Colon and rectum.  

I think it is good that they are also seeing an Endo.


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## Livia (Jul 2, 2013)

Thank you all very much for your very useful information. I feel like I am getting a really good education on this subject. 
My 13 year old grandson is 4 feet 5 inches tall and weights 62 pounds. He grew very little this past 2 years. He had an endoscopy and a colonoscopy which showed the inflammation of the ileocecal valve (ileum) and gastritis. no evidence of granuloma. Biopsy did not show anything conclusive. His only symptom is occasional diarrhea and growth problems. He also has a poor appetite. Since he is allergic to dairy are there elemental or semi-elemental
drinks without dairy product? 
He is on entocor for the past 3 months, but his recent stool test showed a very high level of calprotectin, which is an indication of inflammation. He is also taking growth hormone injections.
Is there a special diet that would be helpful for him, like gluten free?
Thank you so much
Livia


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## my little penguin (Jul 2, 2013)

Amino acid based ones are good for dairy allergic kids - 
They are elemental
Elecare

http://m.elecare.com/products


Neocate 
https://www.neocate.com/shop/p-24-e028-splash.aspx

E028 splash or neocate jr.

The Gi office would be able to give you samples to try.
EEN is where you use formula only for 6-8 weeks to get inflammation under control then add food 
My son did this for 9 weeks
He still drinks two to three peptamen jr a day.

As a comparison two years ago he was 50 lbs and 4 '2"
In the last year he grew 4 inches and gained twenty pounds mostly due to peptamen jr.
He is now 4'6" and 74lbs at age 9.
Formula doesn't hurt and can only help
Good luck


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## Wendles (Jul 13, 2013)

crohnsinct said:


> I would have to say yes indeed he will grow.  Especially of you caught the disease prior to puberty.  My daughter was dx'd at 12 and she is now 13 and has frown 5 3/4" since we got her Crohns under control and I dare say she is still growing. Axtually about to hit the height her GI said we would be lucky to hit!
> 
> The important thing is to get the inflammation under control and get him to remission.  Sounds like you have a good doc on your side.  Good luck with the scope and keep us posted.


Wow thank you so much for posting this !!!! This is my biggest concern with my son who has just been diagnosed with crohns in may. Hope all is well your end  Wendy


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## Johnnysmom (Jul 13, 2013)

This is the best article I have found on Catch-up growth.  What I found most interesting is how long it took for after start of therapy for catch-up growth to occur.

http://edrv.endojournals.org/content/18/5/646.full.pdf


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## Wendles (Jul 13, 2013)

Johnnysmom said:


> This is the best article I have found on Catch-up growth.  What I found most interesting is how long it took for after start of therapy for catch-up growth to occur.
> 
> http://edrv.endojournals.org/content/18/5/646.full.pdf


Thank you so much will check it out now


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## Johnnysmom (Jul 13, 2013)

The article is not specific to children with crohn's disease, but our endocrinologist explained that growth is usually stopped when a child's Body Mass Index gets too low because they have either stopped eating much because of symptoms or are not absorbing because of inflammation.  Basically lack of nutrition.  My son's BMI was about 15 when he stopped growing. His BMI is a 19 now and growth is normal again.  He has not had catch up growth yet, but according to the article it might be another year or so.


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## Mj1gaynor (Jul 22, 2013)

I just wanted to give you an update.  My son had is colonoscopy and endoscopy today.  The crohn's diagnosis has been confirmed.  The dr. Prescribed prednisone for us to start tomorrow.   We go back to see her in 9 days when the biopsy's are completed.  I have read alot about prednisone and wonder why the prescription so quickly.  Does prednisone for a short amount of time have impacts.   I am open to eternal nutricion or other versions of it.  Is this a typical treatment for initial diagnosis?


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## my little penguin (Jul 22, 2013)

most docs in the US give pred first since its easier and cheaper than eternal nutrition.
In Europe and other countries formula only is considered the norm.

treating with pred or formula only will take about 6-8 weeks during which time you need to have started a maintenance drug.

Most do not stay on pred for 5 -6 days . Typical course is two weeks at a higher dose then wean by 5 mg per week. MOst kids are not able to wean from pred until another maintenance med has had time to get built up in their system ( MTX =6-8 weeks, 6-MP = 3-6 months, Remicade =6 weeks).

I would ask your doc about going with EEN but realize your child can have no other food for the entire 6-8 weeks. Most insurances do not cover the cost of EEN.
Peptamen jr is about $160 a case (24 shakes). My son drank 7-8 shakes a day at age 7 to maintain his weight while on EEN. so about $1400 -1500 a month cost

Pred cost about $2 for a month of pills.

Here a paper to share with your GI when you ask.

http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf


Sorry to hear about the diagnosis


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## CarolinAlaska (Jul 22, 2013)

Mj1gaynor said:


> I just wanted to give you an update.  My son had is colonoscopy and endoscopy today.  The crohn's diagnosis has been confirmed.  The dr. Prescribed prednisone for us to start tomorrow.   We go back to see her in 9 days when the biopsy's are completed.  I have read alot about prednisone and wonder why the prescription so quickly.  Does prednisone for a short amount of time have impacts.   I am open to eternal nutricion or other versions of it.  Is this a typical treatment for initial diagnosis?


Yes, typical treatment.  I called my ped GI and she was happy to prescribe the enteral nutrition.  It wasn't all easy - especially if you are in an area where it isn't the norm and stupid nurses don't know how to insert and teach your child how to insert one right.  If you go with this, make sure they use a 12 French soft tipped NG tube from the start, and make sure it is someone who has experience teaching a child to do it themselves (if your child is old enough).  

That said, I am happy to say my daughter has never had to use prednisone and she is up almost 20 lbs now and doing very well with her enteral nutrition.  She only had to have the NG tube 5 weeks, the rest of the time she has drank the formulas.  She was on exclusive formula 8 weeks.  Now drinks it for supplementation.  Last visit the pediatrician said soon we'll be able to cut back on how much she drinks


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## crohnsinct (Jul 22, 2013)

Sorry to hear abouot your son's confirmed dx.  I know we pm'd before but can't recall...you aren't at Ct. Children's are you?  If you are, I know they will do EEN but you have to bring it up...they won't and didn't when it was my daughter.


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## Johnnysmom (Jul 22, 2013)

I am never sure whether or not to chime in when parents ask about Enteral nutrition.  We were not given the option when my son was diagnosed, he was just put on prednisone.  I don't try to recommend either one, but I share our experience because I think for some prednisone is a better choice and for others enteral nutrition is better.

We were told that a short course of Prednisone would not effect our son's growth.  He was on a 40mg dose for 4 weeks and then weaned after that.  He was put on 6mp at the same time and that starting working by the time the prednisone was stopped.   It was a smooth transition.  The benefit was that it made him very hungry and he was eating and gaining weight like crazy.  He was at the point where he was starving himself before diagnosis and was really unable to eat more than a few bites so it was such a relief to see him eating again.  The down side is that there were a few side effects, like moodiness, elevated heart rate and insomnia.   Nothing terrible but it was hard for him.  His inflammatory markers were normal 6 days after starting Prednisone so it did take care of inflammation quickly.  

There are so many success stories with enteral nutrition too, I know there are lots of parents who can give you feed back on that as well.  

These decisions are never easy, we all just do the best we can.  I know you will figure this out and either way, your boy will be feeling a lot better once things are treated.  

(((Hugs))))


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## crohnsinct (Jul 22, 2013)

We actually started with Prednisone as well and had excellent results with inflammation, weight gain and growth and all with no side effects what so ever!  We also did EEN but that came later in an effort to avoid methotrexate.  Also with great results.


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## CrohnsKidMom (Jul 22, 2013)

I think each GI is different, and like MLP said, first treatment is different depending on where you live.  At diagnosis, our GI offered EEN with NG tube, or prednisone.  He was recommending the EEN over the prednisone, and said it is more common here in Canada and in Europe.  We, however, went with prednisone, which apparently is more common in the States.


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## mcornelius (Jul 22, 2013)

Glad to see this post- I had the very same question.  My daughter was dx with Crohn's disease in March 2013.  Her only treatment plan so far has been remicade.  She has gained 12 pounds since March and is finally at 71 pounds, but has had no height changes.  We hope she'll gain some height soon. At least she is back on the growth curve with her weight.  

Sorry to hear about your son. Remicade has been the only treatment option given to my daughter - the upper & lower GI series showed severe damage @ the terminal ileum - her inflammation markers improved by the 3rd treatment of remicade (which was at 6 weeks post dx). Keep us updated on what treatment your son is to receive.


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## Brian'sMom (Jul 23, 2013)

crohnsinct said:


> We actually started with Prednisone as well and had excellent results with inflammation, weight gain and growth and all with no side effects what so ever!  We also did EEN but that came later in an effort to avoid methotrexate.  Also with great results.


Just curious, why did you want to avoid methotrexate?


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## crohnsinct (Jul 23, 2013)

Well that was only 2 months post dx and I am a crunchy no med sort and my head was still spinning from the Remicade and Prednisone.  But also because of the increased risk of lymphoma when you add Methotrexate to the Remicade and more importantly, our family has a history of liver disorders and Methotrexate is rough on the liver.  So all in all if I could avoid or lesson it I would. Been on it 3 months now and so far so good! 

But like we have all said before...looking at her now...basket of kittens!


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## Brian'sMom (Jul 23, 2013)

Our doc says that the combo of mtx and tnf doesn't have any incidences of t cell. It was the imuran combo. Also said that in some cases the imuran and the tnf stuff caused t cell all by itself. But its my main worry right now. I think it just hasn't been combined long enough yet. I've always been a no med gal too!! Then this happens to my son.....ugh!!

(Our GI office goes as far as to prescribe imuran/tnf for the girls and the mtx/tnf for the boys. I don't like either)


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## Maya142 (Jul 23, 2013)

Brian's Mom - I don't understand! Could you explain what your GI said? My daughter has been Humira+mtx and now is on Remicade+mtx and we've never been told about that kind of cancer. Why does your GI prescribe Imuran to girls?


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## crohnsinct (Jul 24, 2013)

Brian'sMom said:


> (Our GI office goes as far as to prescribe imuran/tnf for the girls and the mtx/tnf for the boys. I don't like either)


Well that is kinda weird.  If they consider Mtx and Remi safer for boys why not put all patients on that?  Unless they think the Imuran works better? 

I know for the most part the big scare is Aza and Remi and even then more with boys then girls.  However, our doc gave us the Lymphoma warning (not just the T cell...just any lymphoma) with just Remicade but told us it was so miniscule it probably wasn't worth mentioning.  He said he wanted us to have all the facts. Probably because of much crunchy granola self.  Remi+Imuran, added more risk and also risk of T cell Lymphoma but still miniscule, Mtx + Remi added less t cell risk and more risk of general lymphoma also still miniscule.  My daughter's risks are also associated with being in the psoriatic population as well as IBD.  Not increased risk just different risks and with the Psoriasis much more chance of liver issues than any other scary thing. 

He says the numbers of people who actually get lymphoma are so low that it is still hard to point to one culprit as the causing agent.


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## Brian'sMom (Jul 24, 2013)

crohnsinct said:


> He says the numbers of people who actually get lymphoma are so low that it is still hard to point to one culprit as the causing agent.


Yes, ours said this too. That almost every crohns kid is on 6mp or aza at some time in the beginning. Some have said the lymphoma is when you've 'had it at some point' and since that's just about ALL the kids...well that makes the risks even smaller.

And the imuran or mtx with boys or girls was explained: the boys and testosterone link and the age of boys between 13-20 when being on combo of imuran+tnf. It happened most with boys in the study I guess. I really think its just our dr's individual thought. Seems dumb to me.


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## my little penguin (Jul 24, 2013)

Plus they now know the risk is biologic + immunosuppressants .
So it could be humira or remicade or cimzia + Mtx or Imuran or 6-mp.
And it doesn't have to be in combo the htcl risk is from taking and immunosuppressant 
Even for a short bit then waiting a few years and taking a biologic.
Risk was still there.
Also the longer they use these meds they have found it is NOT just young males at risk for tchl . They have report cases in young /old /male /female.
It is just how the immune system sometimes reacts.

It is however very rare which is why it has taken so long to figure out if there was an at risk group vs anyone with Ibd taking the drugs at one point or another.


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## Brian'sMom (Jul 24, 2013)

MLP, You explain it soooo much better!! What you said!!


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## Mehita (Jul 24, 2013)

Just curious, is there anyone on the forum here who has developed lymphoma?

I've only heard one mom in a Facebook group mention that her son had lymphoma, but no where else.

If I recall correctly, our GI said the risk of lymphoma was 4 in 10,000. I may be wrong on that... I was in a hospital daze at the time.


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## my little penguin (Jul 24, 2013)

The fatal kind htcl is 2 in 10000 if you are an average person
It raises to 4 in 10000 if you have taken both an immunosuppressant and a biologic at some point.

Not sure on the numbers for regular kind .
There should be a paper in the research section or on medscape


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## plaidknitter (Jul 24, 2013)

I don't know about the meds and lymphoma, but my growth was permanently stunted from celiac & crohn's. I had very bad malnutrition as a teenager, and I haven't grown since I was 12! I wasn't dx-ed with celiac till I was 15 and IBD till I was 18, so I think with a younger kid there is more hope for continued growth.


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## crohnsinct (Jul 24, 2013)

Yes, I think there is one or two who had some form of lymphoma but not the rare almost certainly deadly kind.

At one point when O was inpatient and before we had a dx an oncologist came by.  I just about freaked and told him to hit the road saying,  "my daughter has IBD...he said, "no, really, you would almost prefer a lymphoma because so many of them are curable and have a definite protocol.  IBD is horrid disease with no cure, no definite protocol and a lot of EIM's that may or may not be treatable and yucky risks from meds".    How right he was!


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## Maya142 (Jul 24, 2013)

plaidknitter- Do you know if being diagnosed slightly earlier (but not much, my daughter was diagnosed at 16) would mean that there could still be "catch-up" growth? My daughter is quite small - 5 feet and would love to grow but I'm afraid it might be too late.


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## my little penguin (Jul 24, 2013)

Maya142
If they do a bone age xray they can tell if she is delayed or done growing?
If she is delAyed and gets treatment to get crohn's under control then she may grow.
Good luck


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## Jmrogers4 (Jul 24, 2013)

My understanding is it depends on if her growth plates have closed or not.  Many Crohn's kids have a younger bone age than their peers.  A 16 year old may have a bone age of 14 and so growth plates still open allowing for additional growth.  Many of the kids have had scans done to check bone age.

Oops MLP beat me to it


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## plaidknitter (Jul 24, 2013)

The posters above me have good info! I never had any bone scans done or had my bone density checked. I did break a very hard to break bone in college playing sports and my doctor was furious that I had been playing a contact sport (oops?). I had X-rays then but nothing growth specific. I was tall for my age at 12, so I'm short but not extremely short. I think it my case the double whammy of celiac on top of IBD made it harder for me to catch up than it may have been of I just had one.


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## crohnsinct (Jul 24, 2013)

Not that this is the gold standard by any means but has she had her period yet?  For both my girls (my IBDer and my daughter with precoscious puberty) the endo is very interested in when their cycle starts because it is less likely they will grow after that...or so they say...my mother grew 4 inches after her period started.


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## Clash (Jul 24, 2013)

Also wanted to add, another reason they do the Imuran+biologic treatment for girls instead of mtx+biologic is because of a risk of birth defects in girls of child bearing age with MTX. Not that it is an issue with the younger children but is something the doctors do take seriously after girls go through puberty/are at a sexually active age.


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## Maya142 (Jul 24, 2013)

She's had a dexa scan and no one said anything about it so I guess her growth plates must be closed. She started her period at age 11, so I guess that makes sense. I guess she'll just have to get used to being small!


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## DustyKat (Jul 25, 2013)

In regard to Methotrexate and gender. If you are male you may want to look further into the risks it may pose if you are sexually active and not using precautions or you trying to conceive. 



> Methotrexate (MTX) should never be used in patients actively planning to become pregnant. Based on data from animal experiments, there is a high risk of chromosomal damage, increased occurrence of birth defects and pregnancy complications (miscarriage, premature birth). In fact, MTX, at high doses, can be used to induce abortion. *For this reason, we recommend discontinuing therapy with MTX in both men and women three to six months prior to planned conception.* If therapy with MTX is absolutely necessary, patients must use a reliable method of contraception.
> 
> http://www.drfalkpharma.de/uploads/tx_tocfpshoperw/S82e_12-1-09.pdf


Dusty. xxx


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## radchic (Jul 30, 2013)

So sorry for you have had to find us, but welcome.  I just had this conversation with my DH last night.  When  my DH was dx I knew nothing about meds and alternatives in 1994.  Then my son was dx in 2005 and he was soooo sick I didn't think to question his meds and really, was not given any other options...But , now with my DD, I would like to avoid pred at all costs.  It is very effective for knocking down the disease but both my DH and DS had the puffy moon face and body pain and mood swings...if I can get the same results with EN and no side effects..I'm in.  I couldn't imagine how surly she would be on pred...lol  but my DS has grown 9" since we have gotten his inflammation under control.  He is now 18 and still has open growth plates so he is not done yet!


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## bubbabearzle (Jul 30, 2013)

Mj1gaynor said:


> My son (9 years old) was recently found to not be growing at the proper rate and his test results indicated a need to see a specialist.  The specialist indicated that results indicate Crohn's disease, but they will not be able to give additional information until an endoscopy is done in 4 weeks.
> 
> My husband was diagnosed with Crohn's many years ago, but has not had any issues in the last 25 years since he had surgery.  His Dr. told us he was the "miracle patient"
> 
> Question:  Will proper treatment for Crohn's allow for him to grow to normal height or is the lost growth permanent?


That's very interesting about yor husband - he is the only person other than my mother-in-law who I have ever heard of having such a long remission (hers is 35+ years, after having come near death a few times).  Let's hope both of our kids follow their long remission trend!


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## Mj1gaynor (Jul 31, 2013)

HI!  Just an update and a question.  I started this thread when they though my son had Crohns.  My son has been on Prednisone (40 Mg) since the official diagnosis on 7/22.  We went to see the Dr. yesterday and they are planning to reduce prednisone and begin 6MP.  Does anyone have experience with 6MP. What are the side effects?  Is this a normal treatment path?  The Dr. hasn't discussed the medicine's.  She just tells us what we are doing and is not open for a discussion.  I tried to talk about Enternal Nutrician, but the Dr. just said it is too hard for kids to do.  Any input is appreciated.


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## crohnsinct (Jul 31, 2013)

GRRRR! :ymad: Your doc sounds like a winner!  Not open to discussion?!  What is that? Not explaining a med and discussing it or options?  How frustrating and maddening for you. :ybatty:  EN too hard for the kids?  It is hard but can we even discuss it?  Try it?  Nothing like defeating yourself before you have even tried!  Sorry your doc pushed my buttons.  

But yes 6mp is one of the meds commonly used.  I don't know a lot about it though (my daughter uses Remicade and Methotrexate).  I am sure some of the other parents will be along shortly to help you with any 6mp questions etc.  You may also want to check out the treatment subforum as there may be a 6mp group there and you can have a read through some of those threads.  

I know you were very interested in EEN.  My daughter tried it and it worked. I can't see the previous posts so if this was explained already forgive me.  EEN alone is not usually a typical plan.  It has worked for some but it typically works only while on it (there is a study out there that suggests following a period of EEN with a maintenance dose of the shakes can keep a child in remission).  Following you have a period of remission which differs for everyone.  Some can go 3 months, some 6 some even a year but the inflammation comes back and often is simmering away until it really comes to the surface and then you have to hop back on and simmering inflammation is not good.   For this reason there is almost always a maintenance med added (ie: the 6mp your doc is suggesting).  Most use EEN instead of a steroid to induce remission and while waiting for the maintenance med to build to therapeutic levels.  Since your son has already been on prednisone perhaps the doc is thinking that the EEN wouldn't be needed as the Prednisone has brought him to a good point.  If her ultimate advice is going to be adding 6 mp anyway why frustrate you and him with EEN if it isn't necessary. I am just taking a stab at what she might have been thinking.  Would be nice if she discussed it with you though.  


Another reason people add EEN is when their current drug is working but needs a little help to get over the hump or to treat a flare while on a drug that has been working all along or for weight gain and growth.  So I wouldn't let EEN die and if your son experiences any of this would pull it right back out and make her discuss it.  

Good luck!  I really hope the 6mp works wonders for him!


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## crohnsinct (Jul 31, 2013)

O.K. sorry previous posts just magically reappeared.  I see now that your son just started prednisone a week ago and he has growth and weight issues.  With that information I am really miffed that she wouldn't discuss the EEN option although not surprised as many docs in the US don't do it.  Was his inflammation very severe?  Is he experiencing a lot of other symptoms and suffering badly?  Where is his disease located?  

I am thinking if his inflammation is severe and he is suffering badly perhaps the doc just wants to go with what she knows will work since EEN is a little bit of a gamble ie: child may not do it 100% may only last a couple of weeks and that will put you behind the 8 ball and leave inflammation not being attacked. Again would be nice if she explained this! 

Also, some feel that EEN is not as successful with colonic involvement but there is a study out there that says disease location doesn't matter and my daughter's disease is in the colon and it worked and her friend has UC and it worked.  So in my book worth a try but if disease is super bad right now maybe best to hit it hard with steroids.


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## my little penguin (Jul 31, 2013)

plus even on steriods - een or supplemental EN can only help not hurt.
DS started out as EEN and two years later ( almost ) still drinks peptamen every single day.


as far as 6-mp that is pretty standard.
DS tried that for 6-8 months
just make sure to get weekly blood work then every two then once a month.
ALT/AST
CBC
SED
CRP
and 
TMPT test 
TGGN test

good luck

keep pushing on the EN


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## jmckinley (Aug 1, 2013)

MJ,

My son took 6mp for 2 years with great success. His GI tract was fully involved at the time. The side effects were mild. The worst was hair loss which was annoying because of the hair in the bathroom, but not noticeable on him. I don't think he really had other symptoms except a little occasional nausea but it didn't keep him from anything. He ran cross country, played in the band, and could eat almost anything... no limitations for him. Of course, it wore out it's welcome after 2 years, but we got some great remission time from it. I hope it works well for you. 

And I will echo the other posters, EN can't hurt. Even as extra calories, supplement drinks are great!


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## DustyKat (Aug 2, 2013)

Hey MJ, 

My two are on Imuran, the parent drug to 6mp, and have taken it for quite some time without issue. 

Have a look at this thread: 

http://www.crohnsforum.com/showthread.php?t=44911

Dusty. xxx


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## Dexky (Aug 3, 2013)

It was my son's first "big" med too.  It's very common to try some sort of 6mp and mesalamine combo first.  My son never had any issues with it.  Good luck!!


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## Brian'sMom (Aug 3, 2013)

MJ, My son just started supplemental EN on July 25th. He's a little older than your son, but it wasn't too hard for him. My son's GI was resistant for a long time. I got the clinic dietician on board. I got a lot of good advice about it on here (My thread is called "EN at Night") After just one week he went from 68.2lbs to 69.6. So I think he's finally going to grow


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## Mj1gaynor (Aug 29, 2013)

An update on John.  We had an MRI last week and it came back fine (along with the bloodwork).  The Dr. believes that since Johns Crohn's diagnosis was prior to any symptoms (except for growth issues) and the inflammation was mild and was treated so early that the medication can help to alter the progression of the disease.  

John has grown 1/4 in and put on 3 lbs in 1 month. (He was always normal weight).  Have others had a positive experience with early diagnosis?  She said most children are diagnosed after disease has already progressed.   I am thrilled with todays news and just wondered if this is typical of early diagnosis.


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## upsetmom (Aug 30, 2013)

Good to hear that everything's going good with your son..:dance:


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## ChampsMom (Aug 30, 2013)

I wouldn't say that my son's diagnoses was caught early as he had lost over 20 lbs by the time he was diagnosed.  

It took a solid year to get all of his numbers back into the normal range, and he grew like a mad dog after that.  He's now about 5'10" and weighs in at about 135 (which is all muscle, he has no truly visible fat on his body...).

He used to be in the 10% in height/weight, he's now in the 50% in both.

I definitely do not have the expert knowledge that many of the other folks on here have, but I suspect that once inflammation is under control, the body can start absorbing the nutrients necessary and the body can grow.  No nutrients = low/no growth.

So happy to hear your son is doing so well!


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## Wendles (Aug 31, 2013)

ChampsMom said:


> I wouldn't say that my son's diagnoses was caught early as he had lost over 20 lbs by the time he was diagnosed.
> 
> It took a solid year to get all of his numbers back into the normal range, and he grew like a mad dog after that.  He's now about 5'10" and weighs in at about 135 (which is all muscle, he has no truly visible fat on his body...).
> 
> ...


Hi champs mum
Can I ask you how old champ is ? My son is 12 diagnosed with crohns in may was in "remission" but as of yesterday started enticort as pain was back almost every night. He is not losing weight but has not grown any taller at all since we started watching his growth in may. Doc says enticort is not like pred and will not stunt his growth , but of course reading things on the Internet this is 1 side effect . Back to worrying again , well I suppose I never stopped !!!


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## my little penguin (Aug 31, 2013)

It takes about 6 months of good absorbed 
Before you see any growth .
Add in any steriods and it slows again


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## ChampsMom (Aug 31, 2013)

Wendles said:


> Hi champs mum
> Can I ask you how old champ is ? My son is 12 diagnosed with crohns in may was in "remission" but as of yesterday started enticort as pain was back almost every night. He is not losing weight but has not grown any taller at all since we started watching his growth in may. Doc says enticort is not like pred and will not stunt his growth , but of course reading things on the Internet this is 1 side effect . Back to worrying again , well I suppose I never stopped !!!


Hey Wendles!

He is now 16 1/2.  I wouldn't be too worried about growth yet given your son is just 12.  Alex was 13 & 3 months when the symptoms truly hit, 13 & 4 months when diagnosed and then 14 1/2 when all his numbers were in the right place and he was feeling whole again.  It was that Summer that he took his first huge jump and he grew almost 6 inches and started putting on weight.  

Regarding the enticort - he has never taken that - he did a round of IV prednisone while in the hospital the first time, then they sent him home with pills.  He ended up back in the hospital (in all we spent just shy of 6 weeks in the hospital) and he was kept on that regiment for a short while after.  

Having said all that my brother was a late grower too (non-IBDer).  He went from 5'6" to 5'11" his senior year of high school (between the ages of 17-18).  

I remember being concerned about his growth and our GI said, "If he's suppose to be 6 feet tall, he will be, but probably not as early as you would expect."  She was right 

I'm sorry your son isn't feeling well   I pray they are able to get him feeling better soon!  (((hugs)))


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## Wendles (Sep 1, 2013)

Hi champs mom, 
Thanks for that info it is so worrying, Trent's 17 year old brother is just under 6 foot so I have everything crossed for Trent. I thank you so much for sharing that with me and hope all is going well for your son. I do feel maybe we have a bit of time up our sleeves but I do compare him to all of his  friends who seem to have shot up all of a sudden. Will be waiting anxiously until I see some growth . Thanks again


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## DustyKat (Sep 6, 2013)

Mj1gaynor said:


> An update on John.  We had an MRI last week and it came back fine (along with the bloodwork).  The Dr. believes that since Johns Crohn's diagnosis was prior to any symptoms (except for growth issues) and the inflammation was mild and was treated so early that the medication can help to alter the progression of the disease.
> 
> John has grown 1/4 in and put on 3 lbs in 1 month. (He was always normal weight).  Have others had a positive experience with early diagnosis?  She said most children are diagnosed after disease has already progressed.   I am thrilled with todays news and just wondered if this is typical of early diagnosis.


Thanks for the update.  It is so good to hear that all is going well, yay! :dusty: 

It is hard to say with an early diagnosis how things will pan out but I think two things that may play a large part is the type of disease present and the response to treatment. The reason I say that is that my son received received a very early diagnosis and his disease was classified as mild to very mild but within three weeks we ran into problems that lasted 6 months BUT that was because my children have fistulising disease. It only took one deep ulcer to cause my son no end of bother but I have no doubt that if his disease had been stricturing then having such a quick diagnosis (and a response to treatment)  would have resulted in a far better outcome for him. 

Good luck or continued good health! 

Dusty. xxx


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## myboy12 (Jan 10, 2014)

I realize this is an older thread but I have been lurking around the past few weeks as my 12 year old son was recently diagnosed with Crohn's a week before Christmas. His biopsies confirmed "poorly formed granulomas" in his small intestine and stomach, and rare poorly formed granulomas in his colon. His Pediatric GI indicated said he has moderate level Crohn's and he was put on 40mg of Predisone for a week, then tapered by 5mg a week for the next seven weeks, 3000 mg of Pentasa daily, weekly vitamin D, and started 6MP yesterday.

The good news is that he has responded well! He has no abdominal pain, normal stools and has put on almost 9 lbs. We are assuming he doesn't need any additional nutrition since he is putting on weight, he must be absorbing??? Or is some of this water weight from the Prednione? We want to do everything possible to get his growth back on track, he definitely slowed down in the past 6-12 months and he is noticeably smaller than his peers. He is also a swimmer and swims 1 1/2 hours daily, not sure how he was possibly keeping up this workouts prior to being diagnosed! Reading that many kids take Peptamen Jr not sure if we should consider this supplement?


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## kimmidwife (Jan 10, 2014)

Hi welcome to the forum! Sorry you had to find us but glad you did.
There is a good chance the weight he has put on is from the prednisone. Prednisone makes you gain weight due to increased appetite so it is true weight gain. You do get some bloating and puffiness but most of it is weight that will not go away when taken off prednisone. Growth is often delayed in these kids with Crohn's but hopefully once you get the disease under control he will start to grow again on his own. Definitely keep an eye on it and it is something to mention to the doctor so they keep an eye on it as well. Good luck and keep us posted on how he is doing!


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## crohnsinct (Jan 10, 2014)

Hi mboy and welcome.  Sorry to hear about your boys diagnosis.  I agree with kimmidwife and just wanted to pop in to say that vertical growth comes when the inflammation is under good control so it may take a bit to see that. 

Also, my daughter is also a swimmer and swims 2 hours 6 days a week and dryland two days a week...also on the school track team.  She did a course of Exclusive Enteral Nutrition (no foods only drinking the formula).  We found that once we added in food the shakes were a great post workout recovery drink...perfect ratio of carbs to protein and calories etc.  Certainly couldn't hurt. 

My daughter's disease has been well controlled for a year and a half.  She has put on 30 pounds and grown 5 inches but I have to say the weight is something we constantly battle to keep on given her activity level.


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## myboy12 (Jan 10, 2014)

Thanks so much for your reply. What kind of shakes does your daughter drink post workout? 

When did your daughter start to feel back to normal in the pool post diagnosis? I worry about my son's confidence and self esteem as he has not been able to come close to his best times since the summer. It has been heartbreaking to watch him struggle meet after meet. He sees all his teammates growing and getting stronger and faster. He is anxious to grow and catch up and I told him we are just going to have to be patient. His ALK phosphatase number is low on his most recent blood work and I have read that the number is connected to growth, so I guess it may be awhile before the height comes. The positive is finally eating, and a lot I may add!  And he is not having the horrible stomach pains that he was experiencing. I am hopeful we are moving in the right direction! Keeping our fingers crossed that as we continue the Prednisone taper that none of his symptoms reappear, as I know, it will take some time for the 6MP to build in his system.

6 weeks ago I knew absolutely nothing about Crohn's. I am thankful to have found this forum and it has been so helpful in providing some reassurance during a very difficult time.


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## Jmrogers4 (Jan 10, 2014)

Just wanted to add my Welcome myboy12.  My son also drinks supplemental shakes Pediasure Peptide.  A lot of Pediatric GI's have samples of different brands of formula they gave us a huge bag to find one that he would tolerate drinking.  
Hope the 6MP does the trick for him and he is soon growing and catching up to his peers.


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## my little penguin (Jan 10, 2014)

Peptamen jr here for my kid.
Ibd kids have been shown to need more calories in general so although mine did 9 weeks with out food he has continued to drink 2-3 shakes a day with food.
This has allowed him to not worry about his weight and growth.
He is now 6-7 inches taller and 30 lbs heavier since dx.
He will not stop supplements until he is done growing since they can only help with this disease and not hurt .

Good luck on 6-mp


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## crohnsinct (Jan 10, 2014)

My daughter drank Boost and Ensure.  Lots of different flavors so you can play with them.  Also tesscorm provided a link to a recipe site...as long as you are not doing Exclusive Enteral Nutrition these smoothies are fine.  Other drinks some swimmers use are Carnation Instant Breakfast, Ovaltine and Whole Foods market here in the US carries a couple of lines similar to Boost and Ensure.    There is LOTS of research on swimming post recovery snacks and the best one is simply chocolate milk.  BUT that is for your run of the mill swimmer.  We have a slightly different challenge.  

As for times, let's see.  Her times plateaued and then started getting slower and slower from 10 to 12.  About three months after her 12th birthday she was dx'd...yay..we now know the reason!  From that point we wrote off all old times.  Used her current (CD) times to gauge best times.  I would have to say it took a good year for her to even come close to her pre dx best times.  Then when she started she was taking gobs of time off when all the other swimmers were done with their growing and plateauing so she looked like the super star. 

Gosh I know it is so hard for them to put in all that work to be betrayed by their bodies and even harder when everyone around them is experiencing success.  It got better once we knew the reason.   Between 10 and 15 swimmers are wildly all over the board with growth and development and times and those are the ones not fighting a chronic illness.  Just tell him to keep his head in his lane...his time will come. :ghug:

PS USA Swimming has a page where you can out in your daily workout and it will calculate calorie needs.  It is pretty shocking to see what they should be eating.  Then because they have CD you have to add a bunch more.  Our nutritionist had us add 30%.


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## Tesscorm (Jan 10, 2014)

Hi,

My son also did exclusive EN to achieve remission and has since continued with EN as a supplement.  He is now 19 and using remicade as a maintenance treatment but continues with 1-2 Boost shakes per day to maintain some semblence of nutrition (he is away at university - who knows what's he's eating!! ). I do, however, believe that the nutrition gained from these shakes definitely help!  While trying to achieve remission or even once reaching remission, there could be some inflammation or scar tissue that will inhibit full absorption...  the extra bit from the shakes can't hurt!

Having a problem getting the link to the Boost recipes just now - but just google Boost shake recipes and you'll find it (and I imagine the recipes can be made with other brands of nutritional shakes as well).  One thing though, in the past, MLP has mentioned that the nutritional status/benefit of these shakes can change if frozen... not sure if the same applies when 'baked'...???


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## my little penguin (Jan 10, 2014)

yes- if you heat them or freeze them - can't really count on the nutrition.

only refrigerator cold.

we add maple syrup to his peptamin jr it helps with the taste.


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