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Crohn's Disease Forum » Parents of Kids with IBD » 8 yr old, feels good overall, not responding to most meds - doc wants humira or remicade


 
02-26-2013, 07:22 AM   #1
LJS
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8 yr old, feels good overall, not responding to most meds - doc wants humira or remicade

Hi all,

My almost 9 year old boy was diagnosed officially 2 years ago with Crohns. It's in the very, very center of his small intestine.. his symptoms were fever, abdominal pain and throwing up. He's an unusual case in that he's not followed "typical" crohns so it took quite a while to officially diagnose, although his docs were fairly sure it was crohns.

He's been on all sorts of meds (I'm sorry, I don't remember them all), including prednisone (helped immediately, although he ended up looking like a bowling ball), asacol, pentasa, budeside. He's been on azathioprine (wth allopurinol to help absorption) for the last 1 1/2 years.. while he's been mainly symptom-free, he's had chronic inflammation, which has concerned his doc. He's only 47 lbs, so that is a concern as well, as he has gained just 1 lb in 2 years.

He started having stomach aches last week and threw up once or twice a day for a few days. Thought it was a bug, but his ped was prettty sure it was crohns..bloodwork confirmed it. His numbers are not good, his inflammation is worse, and docs feel it is time for remicade or humira.

I'm scared to death.. for many reasons. Overall, he is just a normal, "healthy" kid without the crohns symptoms so I want to postpone the "big guns" for as long as possible, but docs feel we have no real choice. While he appears to be feeling ok, he is not growing well and the continual inflammation is a huge concern for them.

I'd love to hear your thoughts. Oh, they also want to keep him on the azathioprine with the remi, and I'm really opposed to that, as that combo has been linked to lymphoma in young males.

help!

thanks!
Lin
02-26-2013, 09:10 AM   #2
Tesscorm
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I'm sorry you're facing these tough decision! But, I'm glad you've found this forum (welcome), you'll find lots of knowledge, advice and support here from other parents facing the same decisions.

I can't advise you re the meds; my son is in the same situation, he is doing very well but has chronic inflammation and his GI is adamant that remicade is needed - he will have his first infusion tomorrow. I am sick at the thought, however, untreated chronic inflammation can also cause serious consequences. I do know that there are many kids here who have used remicade with great results (there are also a few kids doing well on humira). Some of them are also using methotrexate with the remicade. Adding the methotrexate (or, I believe, aza) helps reduce the chances of developing antibodies to the remicade. But, even with this 'benefit', I can certainly understand your hesitation.

I did ask our GI the same question re using the big guns now... his response was that by delaying the use of remicade, we could lose it's 'effectiveness' in the sense that the disease could worsen and we'd then be facing surgery. By using remicade now, we can hopefully, avoid surgery.

It's a very tough decision to face...

As far as your son's weight, etc. Has your son's GI suggested Enteral Nutrition? EN cis a nutritional formula that is used exclusively (ie no food, formula only for a period of time), it allows for bowel rest and is used to induce remission without side effects, hit as a comparable success rate as steroids in inducing remission but not as successful as meds at maintaining remission. It is commonly used worldwide but there seems to be hesitation from U.S. GIs in using this treatment (perhaps for compliancy reasons??). This has been my son's only treatment thus far and he responded well for almost two years. I'm not suggesting this instead of remicade for the long term, however, it may help bring down inflammation now and can be used as a supplement, with regular diet and medications, to boost his nutrition and weight gain. There have been lots of kids on this forum who have found success with this. Please look under the Diets for kids subforum, there is a thread called Kids on EN for more info.

I'm sure you'll be hearing from lots more parents with more info and advice!

Good luck! I hope you are able to come to a decision that you feel comfortable with!
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-26-2013, 10:50 AM   #3
Sascot
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Hi, sorry to hear you are facing these decisions. It took me 6 months to agree to do the 6mp for my son. As far as Remicade goes, it seems to work well for lots of kids on the forum, but I can understand your reluctance to do both together.
I would second the EN route. My son did very well on the 8 weeks exclusive Modulen (through NG tube). Maybe your son could do the EN at the same time as the Remicade to reduce inflammation and then getting the Remicade to stop it coming back.
02-26-2013, 11:05 AM   #4
EthanClark
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LJS-I am sorry to hear of your sons problems. This can't be an easy decision for any parent. I agree with Tess about the EN option for weight gain. My son is 3 1/2 and went from 32lbs to 28 and was malnourished and very sick for almost a year. We started EN in Dec 2012 and he is on week 9 and has gained 8 lbs during this time. All of his symptoms are gone and his blood work looks great. We are trying to buy some time before we have to make a decision about drug treatments as well. Even if you go with the drugs I would push EN as well because it helps your state of mind when you know your child is getting all of their nutrition and gaining the weight they should. This forum has been a great support. I will keep your little one in my thoughts and wish the best for you.
02-26-2013, 11:18 AM   #5
David
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Hi Lin and welcome to the community.

I'm so sorry to hear about your son and the incredibly difficult decision you're faced with

I just wanted to chime in with support and also state that I agree wholeheartedly about the use of EEN (Exclusive Enteral Nutrition). As your son is obviously failing to thrive and it is an excellent treatment option for Crohn's disease, I would definitely question why the doctors haven't utilized it already if they haven't.

Also, whoever put him on Asacol probably didn't know what they were doing as that would not treat disease in the center of the small intestine. It is formulated to treat disease in the colon. I just thought you should be aware of that.

All my best to you and your entire family.
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02-26-2013, 01:20 PM   #6
Jmrogers4
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Welcome Lin
Third - Fourth or whatever number on EEN. Even if you decide that is not an option for you I would highly recommend even supplemental EN. Which is what my son is currently doing now. He is getting a majority of his nutritional needs through supplemental drinks (Pediasure Peptide). My son is (was) in the same boat as your son weight wise and was in the 1st percentile for BMI, he has put on 10lbs since starting on 2/6 and has felt better.
Jack is also suspected at this point of having continued small bowel inflammation or possibly narrowing. Small bowel disease doesn't necessarily always present with the "common" symptoms. We did not have diarrhea, more constitpation. We also had the fever, throwing up and pain your son experienced as well as no growth or weight gain.
We may be looking at remicade as well based on what his MRE shows on March 4th. There have been so many positive stories of kids doing so well on it and finally getting to the point of being truly symptom free - no pain, no fevers and growing and gaining weight that I have already reached the decision while I don't wish for it, if that is what it will take that is what we will do.
All the best and hope he is feeling well soon
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-26-2013, 03:17 PM   #7
LJS
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Thank you to all who replied. My doc DID suggest EN as a possibility.. not exclusive, but every night, and eating during the day. It's not been done in our Children's hospital for kids this young but has been very successful with teens. My son really does not want a tube up his nose every night.. and I'm not sure how long the tx doing it this way is...

As for the asacol, that was before we knew exactly where his disease is.. unfortunately, he seems to be somewhat of a medical anomoly, nothing presents in a way that makes sense, so treating him has been very difficult..

For those of you who do nutritional therapy, do you do it exclusively? What about nights where the kids do sleepovers, etc? Is it in the nose or throat? My son also goes to an overnight summer camp out of stsate and that is definitely not something he wants to do at camp...

thanks!
L.
02-26-2013, 03:28 PM   #8
EthanClark
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We do exclusivley EN no foods at all. Just clear liquids. We will do this for 12 weeks for this first time. The tube is in Clarks nose. The tube unsertion isn't that hard but when you have a crying 3 year old it does make it a little harder but it is well worth it. Clark just leaves his tube in all the time. They do have to be replaced every month though. Good Luck
02-26-2013, 03:54 PM   #9
Tesscorm
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My son did exclusive for 6 weeks (he was allow clear fluids including broth). Hhe inserted the tube each nit (but he was almost 17 years old). Since then, he has done half the dose, five nights per week. He usually skips Friday and Saturday but we have adjusted when necessary.

There are also drinkable formulas - Peptamin, Modulen, E028 (I think??), Boost, Ensure, Breeze - some are most easily digested than others...
02-26-2013, 04:24 PM   #10
Jmrogers4
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My son drinks his 8 cans a day (8oz each) at least until April 11 when we go back in for a check. I imagine he may lower the amount per day as he has been steadily gaining weight. As it is not exclusive there has been a night or two where he has had a sleepover and not brought any with him. Depends on the friends usually. A couple of close ones he just brings it over and puts it in their fridge and drinks them.
He drinks Pediasure Peptide and it comes in vanilla, chocolate and strawberry flavored. He prefers the strawberry as he doesn't like chocolate in any form but I hear the chocolate isn't too bad. He eats regular meals, not a lot but then that has always been a problem and one of the reasons he is on the supplemental EN to make sure he gets enough calories and nutrition.
I get the same thing from Jack's doctor he is always telling us how we have to make him think and he spends a lot of time thinking of the best ways to treat him since he doesn't fit any of the standards.
Could be why he recommended the LDN as it is not generally recommended and most if they have heard of it are not willing to bring it up much less prescribe it as they feel not enough research has been done and most people on it have done their own research on it and decided they wanted to try it and have gone out of their way to get prescriptions.
02-26-2013, 04:53 PM   #11
LJS
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What is LDN?

So, instead of a tube your son drinks pediasure peptide? Is that a prescription, different from store-bought pediasure? I thought that the EN "formula" was for addtional nutrients as well as changing the "environment" of the intestinal area, not just to help gain weight...seems if it's just as a weight supplement, then it would not be a viable crohns "prescription" if it doesn't help with the disease and inflammation??
02-26-2013, 05:31 PM   #12
Jmrogers4
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LDN is low dose naltrexone. Here is the link to some studies and thread
http://www.crohnsforum.com/showthread.php?t=31142

Yes the Peptide is a prescription and different from store bought, it can be used for tube feeding. The protein in it is more broken down and easily absorbable (I think I just made up that word or I don't know how to spell it). So does the same thing orally for Crohn's patients as if given through an NG tube. We did get insurance to cover a majority of the cost as it is considered medically necessary based on his BMI and lack of growth/weight gain and absorption of nutrients all caused by Crohn's.
He gained 5-8 pounds over a 3 year time period and grew about 1-1 1/2 inch. (From 10-13). From what his GI says when Crohn's is located in the small intestine there may be some trouble with absorption and if there is inflammation it would add to the problem making them less likely to eat a lot or enough. So the theory is if we can get enough calories and nutrition into him that is easily absorbed then we can fight inflammation and allow normal development.
I don't know if that all made sense my little penguin explains it so much better than I.
02-26-2013, 06:01 PM   #13
LJS
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but you don't do tube feeding, you just have him drink from the can?
02-26-2013, 06:09 PM   #14
my little penguin
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Pediasure peptide and peptamen jr are medical foods.
In order for your insurance to cover them they have to have a script from the Gi with a diag code.
EEN has been proven numerous times to put kids with crohn's into remission at the same rate as pred.
See pediatric research tab -
It does not however help kids maintain remission alone.
Once food has been reintroduced the inflammation returns.
It is however proven to increase the length of remission when used as an adjunct therapy.

One thing you said in your first post was your child had no symptoms
Failure to grow ( gain weight or inches ) is a symptom the Ibd is not under control.
Inflammation. Present on the scope a symptom.
Increased inflammation on blood markers a symptom.
The goal is to keep inflammation under control as long as possible.
This keeps the damage down as much as possible .

As far as remicade or humira
Many studies have shown using biologics within the first two years of dx increases remission rates and hopefully the course if the disease.
My son is nine as well and was dx at age 7.
We also had him try alot of other meds to get his inflammation under control.
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02-26-2013, 06:10 PM   #15
my little penguin
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DS drinks from the carton as well only he prefers peptamen jr.
He has gained twenty pounds and grew three inches in a year.
02-26-2013, 06:21 PM   #16
Jmrogers4
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Yes he just drinks it from the bottle, has one with breakfast, one with dinner, one with lunch, one at bedtime and 4 others spaced throughout the day. He can drink one in about 5-10 minutes and he at this point treats them like drinking a bottle of juice.
We did it this way with the understanding that if it doesn't work we would go the tube route but thought it would be easier for him all around to just drink them. He didn't want a tube in all the time nor did he want to take it in and out daily. He plays a lot of sports and is very active and I would have been worried about the tube getting pulled out all the time if we left it in and he wasn't comfortable about putting it in an taking it out. I did have to make quite a few phone calls to the insurance company and explain it was for all the same reason we would do tube feeding and they got the codes from the medical supply where the prescription was sent to and okay'd it.
02-26-2013, 06:35 PM   #17
Jmrogers4
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Just wanted to add. That I thought we had the Crohn's under control for the last couple of years and his only real constant symptom the last 2 years has been lack of growth/weight gain and am only now coming to the realization that it probably was not as controlled as I or his doctor thought. But we all including his doctor because his blood work/test always came back good that it was just going to happen at any moment we just needed to tweak something. We started with azathioprine and said well maybe methotrexate would work better he had a reaction to it so stopped after just a couple of months, he did gain weight and grow a little on it. We went back to the azathioprine along with allipurinol and stayed on it until last July when his doctor says we should probably be seeing more growth as he is turning 13 and maybe it is just not doing as much as it should so how about we try LDN, he had read a couple of papers and had some other patients on it and thought it was worth a shot as he based on blood, Jack's happy social attitude thought he wasn't bad enough to go to a biologic but we needed something more. Well he grew an inch but didn't gain any weight so GI figured there was something we were missing so scheduled scopes (which looked great 3 weeks ago). So put him on EN as he thinks there is most likely ongoing inflammation or stricturing going on in small intestine which he is hoping EN will help in addition to providing calories and nutrients that are sorely needed.
02-26-2013, 07:37 PM   #18
LJS
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My Little Penguin,

I am aware that while my DS has few obvious symptoms, his lack of growth and his chronic inflammation are big problems, hence the reason I posted here.. to see if anyone has thoughts other than remi or humira. I am fully cognizant that we cannot go on this way, without a clinical remission, as I believe we're just setting DS up for a major flare.. we have tried every med (I think) before pulling out the "big guns" but I wanted to see if anyone has tried something different that may work, prior to making the leap to biologics.. is you DS on any meds or just EN?
02-26-2013, 07:49 PM   #19
my little penguin
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My son tried all of the meds-
Pentasa
6-mp+een (no food)
Then 6-mp+allopurinol+asacol+ en( supplemental)+pred
Then mtx+asacol+en+pred

Currently -he is on remicade every 6 weeks plus asacol /Zantac /EN( 3 peptamen jr) a day.

We didn't want the big guns for ds either. We had taken him to a second opinion GI to see if remicade was the only option . Unfortunately before we could get there ds developed vasculitus numerous times every time we lowered he dose of pred while on MTX.
At that point it was decided by his rheumatologist and Gi that remicade was in his best interest .

We still went to the second opinion but even they said there really was not any other options.
I will say remicade gave us our kid back. So as scary as it was he is very healthy now.

Good luck with your decision .
02-26-2013, 07:53 PM   #20
LJS
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Thanks.. I am pretty sure we'll do remicade.. have to have the nurses check with my insurance, etc.. and trying to decide if we should do EN as well.. but I want DS to eat normally too.
02-26-2013, 07:57 PM   #21
parentnj
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Alec was Dx'd in November 2012 after losing almost 20lbs in less than 3 months. Prednisone put him into remission but Pentasa failed to keep him there. Our Ped GI is starting him on Methotrexate and if that keeps him in remission we will stick to that. If not we will add Remicade and hopefully decrease and then stop the MTX after some time (the theory that MTX will help stop antibodies from developing and keep the Remicade effective is assumed). Our new GI is also an academic researcher and believes that this will be the most effective approach and will keep him on a solid growth curve. Its all very scary but we can't ever forget how incredibly sick our son got in such a short period of time and we know it will happen again if we don't find an effective treatment. I hope you find the right solution that works for you and DS.
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Son Alec 13yrs old - DX 11/2012
Remicade
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02-26-2013, 07:58 PM   #22
my little penguin
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http://www.practicalgastro.com/pdf/J...ionArticle.pdf

A few good papers on different treatment courses
http://mobileservices.texterity.com/...mobileWeb=true

http://mobileservices.texterity.com/...mobileWeb=true

http://www.ibdcme.tv/library/ppts/EnteralNutrition.pdf

http://www.meteo.mcgill.ca/~manyan/T...20in%20IBD.pdf


Very good paper on use of een

http://www.naspghan.org/user-assets/....29%5B1%5D.pdf

Papers on remicade
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002580/

http://www.drbozo.com/library/1842.pdf

Slides you may have already seen on ibd and kids but still good
http://www.naspghan.org/user-assets/...2ndEdition.pdf

Hope that helps
I know it was a very hard decision for us to make
02-26-2013, 08:00 PM   #23
my little penguin
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You can add en as a supplement to remicade
It increases the remission rate slightly.
Ds drinks three a day but eats normal breakfast lunch and dinner
02-26-2013, 10:02 PM   #24
Tesscorm
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Because Stephen has his formula overnight, he usually skips breakfast (as he is full) but lunch, dinner and snacks are normal meals with very few limitations (ie no seeds, nuts, etc.).
02-27-2013, 08:54 PM   #25
CarolinAlaska
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Summer is a ways in the future. He could do EEN for 8-12 weeks and still be able to go to camp by summer - perhaps with some supplemental drinks. Don't let that be a deterent. We are on week 4 of Jae's EEN, and hoping by summer she'll not have to do it exclusively any more. The way things are going, though, who knows how to plan for the summer! I just hope to make it through each week at a time and want her to get better!
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*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
02-27-2013, 08:56 PM   #26
LJS
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Carol,

I don't want to do EEN... I"m thinking more PEN..I'm having a phone conference with his doctor tomorrow to discuss our plans.. my one fear is doing PEN now, then finding out it didn't work and having to do remicade on the rush before camp.. I don't want to do anything new right before he goes away, you know?
02-27-2013, 09:06 PM   #27
my little penguin
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PEN only helps with weight .
It will not take the place of remicade.
It has been shown that small percentage on PEN maintain remission longer
But pen can not treat or induce remission based on everything I read so far.
Something to discuss with your Gi .
Hope your Gi has answers and a good plan for your child .
02-27-2013, 09:16 PM   #28
LJS
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hmm, so doing EEN (no food, EN only) is the only way to induce remission?? I cannot imagine him going 6-10 weeks with no food whatsoever and all his nutrition coming from the feeding tube. I'm trying to avoid both the tube and the exclusivity..and want him in remission.. no, I want him cured..LOL - not asking for too much am I??

Do you think EEN is an appropriate plan for ridding inflammation in the very center of small intestine? No fissures, no fistulas, no "symptoms".. inflammation and low growth.. or do you think remi and PEN is better? I know no one here is a MD, just looking for opinions..

thanks so much!
02-27-2013, 09:25 PM   #29
my little penguin
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Not a doc just a mom who reads too much
All of the studies site success rate with EEN at inducing remission in newly dx children is 80% the first time with EEN. The rates drop if the child has been dx longer or has been on pred.
Honestly from our experience EEN was not enough to induce remission in my son.
Remicade was for my kid .
I love that he has pen to fall back on to keep his weight up if he is feeling nausea or stomach cramping.
I aslo love that the combo has let him grow 3 inches and gain twenty pounds.
02-27-2013, 09:34 PM   #30
LJS
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I have a feeling that we'll end up with the remi/PEN combo as well. My doc presented DS's case (again) to the gastro board at Children's today and we are talking tomorrow.. will let you know!

Lin
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Crohn's Disease Forum » Parents of Kids with IBD » 8 yr old, feels good overall, not responding to most meds - doc wants humira or remicade
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