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8 yr old, feels good overall, not responding to most meds - doc wants humira or remicade

L

LJS

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
 
Tesscorm

Tesscorm

Moderator
Staff member
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... :ghug:

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! :ghug:
 
Sascot

Sascot

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.
 
EthanClark

EthanClark

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.
 
David

David

Co-Founder
Location
Naples, Florida
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.
 
Jmrogers4

Jmrogers4

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
 
L

LJS

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.
 
EthanClark

EthanClark

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
 
Tesscorm

Tesscorm

Moderator
Staff member
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...
 
Jmrogers4

Jmrogers4

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.
 
L

LJS

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??
 
Jmrogers4

Jmrogers4

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.
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
Jmrogers4

Jmrogers4

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.
 
Jmrogers4

Jmrogers4

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.
 
L

LJS

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?
 
my little penguin

my little penguin

Moderator
Staff member
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 .
 
L

LJS

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.
 
parentnj

parentnj

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.
 
my little penguin

my little penguin

Moderator
Staff member
http://www.practicalgastro.com/pdf/January06/FaubionArticle.pdf

A few good papers on different treatment courses
http://mobileservices.texterity.com...ges/mobile_tn2/0050_zbtznj.png&mobileWeb=true

http://mobileservices.texterity.com...ges/mobile_tn2/0058_avpxhy.png&mobileWeb=true

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

http://www.meteo.mcgill.ca/~manyan/...highlighting pediatric differences in IBD.pdf


Very good paper on use of een

http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].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...urces/NEW_PediatricIBDSlideSet_2ndEdition.pdf

Hope that helps
I know it was a very hard decision for us to make
 
my little penguin

my little penguin

Moderator
Staff member
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
 
Tesscorm

Tesscorm

Moderator
Staff member
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.).
 
CarolinAlaska

CarolinAlaska

Holding It Together
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!
 
L

LJS

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?
 
my little penguin

my little penguin

Moderator
Staff member
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 .
 
L

LJS

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!
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
L

LJS

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
 
L

LJS

Sorry - one more question before talking with the doc.. can DS do EEN BUT do it without the NG tube, do it by drinking the formula??
 
Tesscorm

Tesscorm

Moderator
Staff member
Yes, the formula can be ingested orally (by drinking) or through NG tube. If drinking the shakes, these are spread out throughout the day. If by tube, two options - keep tube in 24 hours and the formula can be ingested throughout the day and night or insert the tube nightly and the entire dose/quantity of the formula is ingested overnight.

If the tube is not removed during the day, it does need to be replaced every few weeks (not sure how often). If tube is inserted nightly, this leaves more hunger issues during the day as 'food' is only taken in overnight.

Regardless of method, some GIs allow some clear fluids - Stephen was allowed clear drinks such as no fibre apple juice, kool-aid, gatorade, etc., clear broth (very helpful as a 'meal replacement'), popsicles/freezies (no chocolate), jello and clear candies (like lifesavers); other GIs allow only water...
 
Tesscorm

Tesscorm

Moderator
Staff member
He was on exclusive EN for six weeks (May to July 2011) and then continued with 1/2 the dose, 5 nights per week until now. But, I have seen lots of kids here have their GIs prescribe EEN for 8, 9 and even 12 weeks???

He had his remicade yesterday... all went well! :thumright:

I'm not sure what we're going to do with the EN from now on... Stephen actually wants to keep it going - he's at a great weight, he believes it helps him build muscle easily when working out (;)) and he knows he's a picky eater so having the formula takes the pressure off him to get his nutrients from fruits and veggies - he just 'pumps' it in overnight! :lol: I also suggested he can just have Boost or Ensure shakes now as the horrid tasting but easily digestible formula isn't so essential anymore but he said he'd rather just use the tube at night and the same formula (it has high protein and very low fat! :)) and not worry about drinking shakes (I expect this will change when he goes to university in Sept.)
 
Brian'sMom

Brian'sMom

Location
Midwest
LJS, I think all of us have cringed at the 'big guns'. We went thru all the 'small guns' quickly (Which have their side effects too). Some GI's just go straight to Remi or Humira first. Its 'top down approach'. Its so important in young children to get inflammation under control as quickly as they can. After being on Humira over 2 years...I now cringe at the thought of my son being 'malnourished' instead. At 13 years, his small stature is upsetting to me. He feels good now, and he'd rather play than eat. He's never been a real hungry kid. High metabolism runs in my family. If I skip a meal I lose weight too...
Is PEN the drinkable version of EEN? I soooo wish my son would be receptive to drinking a supplement. He is so stubborn when it comes to this even tho he's frustrated with his smallness.

Good luck on Remicade. **(Something to think about...After our son started a biologic he was shocked how good he felt. I think he had all kinds of pain that he thought was normal cause he had had lived this way since he could remember. So he thought everyone lived like that. Not until he felt good did he realize how much he DIDN'T report to us cause he didn't know he was different...make sense?)**
 
Jmrogers4

Jmrogers4

Brian's mom
PEN is Partial or Supplemental EN so it could still go through tube or taken orally. They just get to eat in addition.
Jack was the same way with the supplements, wouldn't do it. Would stand over the sink gagging if I forced him to drink one. It wasn't until the doctor prescribed it and said this is part or your medicine, then he finally did it with out all the drama.
Same here (at least when I was younger) with the high metabolism, he was was always going to be skinny but Dad is 6'1" and he went from being one of the tallest in the class to the smallest. Since he has started the PEN 3 weeks ago he has gained 10 lbs, hasn't grown any yet but I'm sure that is going to happen in the next couple months
 
Marni's mom

Marni's mom

Hi LJS, welcome! I am home today with my own child who is in pain and not in school. I don't have time at the moment to read all of the responses you've gotten, but I see you're concerned about EEN. My daughter started out with an NG Tube and after about six weeks of seeing that it was working to help her maintain and gain weight, I knew living with it in her nose indefinitely wasn't going to work. So, she now has a G Tube. It's called a "Mickey button", and it's a plug or port in her stomach/abdomen that she connects the tube from the bag of formula that is pumped in. She was on it only at night with regular food during the day (only because she eats so little the doctor didn't "take away" solid food from her). Yesterday, because she's in a major flare right now, she's been told to be on it around the clock.

And, of course, if he will do it, your son can drink it orally.

As far as your original comment that the doctor told you this isn't "typical" Crohn's...I haven't seen one single case of typical Crohn's yet. Every single case is different as you will see on this forum. But you've come to the right place. Everyone here is so nice and willing to share their experiences and advice. It's very helpful as I have found as a new member myself!

Good luck!
 
L

LJS

ok, how msny of you have boys and do remicade? do any of you do azathioprine with it? i am definitely struggling with putting my young son on remicade, with the higher links to lympoma in young males, and the doc wants to keep him on aza as well.. feels that the risk is so low.. but you know what, it's not goign to seem like such a long shot if it's your kid that develops cancer!
 
Clash

Clash

My son is 16 and he is on Remicade and methotrexate which is also an immunosuppressant like AZA or 6MP. I'm not sure and maybe MLP or Tesscorm can show you the study or correct me but our GI said the risk isn't just when meds are used concurrently. Some in the study had used an immunosuppressant then moved on to the biologic. The risk is small but it is something each of us have to struggle with and determine if that risk is worth the benefit of what the drug may do for our kids.

My son just had recent testing and they can't find any inflammation but there is narrowing at his ICV(ileocecal valve) possible due to scar tissue. We are still awaiting tests to determine if my son has built up antibodies to remicade.
 
L

LJS

Now, I'm leaning more towards humira first and seeing how that goes, instead of remicade, and I want to get him off aza.. just not a risk I want to take any longer.

Man, this is tough!
 
Jenn

Jenn

Welcome LJS. Your son is not all that unusual for kids with Crohn's, my son was the same way. We went the Remicade route when 6mp was not effective enough on its own. The biologics are scary, but If it works, you practically worship the stuff when you see how well it makes your child. My son never felt very bad, but had stopped growing and playing. Now he's like normal again. Best of luck to you and him.
 
L

LJS

Jenn, Why did you switch from Remicade to Humira? Do you find your son does better on one than the other? I'm still waiting on hearing from insurance.. although I work for a HUGE company, their benefits suck!
 
Tesscorm

Tesscorm

Moderator
Staff member
I completely agree with you re the risks, yet my son started remicade yesterday. :( I am still not completely comfortable with this, doubt any of us ever are! These are horrible decisions we have to make as parents!!!

A big part of my decision to go ahead was really that it wasn't my decision - he is 18 and wants to do the remicade. :( However, having said that, if I thought he was completely wrong, I would have very strongly and adamantly said NO.

As well as he looks and feels, the amount of inflammation hasn't lessened since Oct 2012 (first MRE), ongoing inflammation will eventually result in other risks/consequences.

In my mind, whether an immunosuppressant or biologic, they bring similar side effects/risks. But there are studies that show using a remicade (perhaps any biologic??) soon after diagnosis (2 years, I believe) gives it the greatest efficacy. Using it with an immunosuppressant minimizes the risk of developing antibodies. I don’t know if there is any benefit in using immunosuppressants together with Humira??? Perhaps someone else can answer this… Maybe Humira is the better way to go??? In my case, if Stephen is going to eventually use a biologic (which seems to be the norm...), then we may as well give it its best shot by using it now.

As far as other risks... I've let Stephen drive since he was 16/17 and be driven by other teens; has played competitive hockey for years, lots of serious head, neck and back injuries in hockey (I NEVER read newspaper articles, etc. detailing hockey injuries because I was too afraid!); he is very fair skinned, as much as I've tried to avoid them, he's had sunburns; I've let him go to friends' cottages where he swam in lakes, rode in boats, went tubing, etc., etc., etc., etc.

I let him do all these things, often cringing at the risks, because they improved his quality of life. And I accepted those risks even though the 'improvement' (ie fun) was so much less important than living a healthy and pain-free life.

I think another big factor is that when you send your kids out to play, you aren't being handed a sheet with the stats of risks related to bike riding, swimming, etc. and then being asked 'are you going to accept these risks for your child?'. :ywow:

BUT, BUT… I completely understand your hesitation! :ghug: Although you’ve tried a number of treatments, you can look into LDN but it seems that your son’s GI doesn’t want to wait much longer to get the inflammation under control. :(

Lots of hugs, I know these decisions are heartbreaking! :hug:
 
L

LJS

Tess, I hear you completely.. there are risks assocoiated with getting up in the morning and getting out of bed..LOL. I do agree that quality of life is so important..I know we'll end up with a biologic.. I believe, based on his inflammation, the my son is a ticking time bomb and it's just a matter of time before he has a major flare, and his doc and I want to avoid that at all costs. His doc wants to keep him on aza with the remicade exactly for the reasons you stated.. but I'm sooo worried about the risk. Truly, I don't think I could live wiht myself if austin developed lymphoma..i know the chances are low but ...knowing the risks, I just dont know if I could agree to that.

I'm still confused about the LDN.. is it pill form? It's not the EN.. not sure exactly WHAT it is..LOL
 
Tesscorm

Tesscorm

Moderator
Staff member
LJS said:
Truly, I don't think I could live wiht myself if austin developed lymphoma..i know the chances are low but ...knowing the risks, I just dont know if I could agree to that.
Click to expand...
I soooo understand!!! I'm sure we all do! I still feel that way and, on the flip side, wasn't sure how I would live with myself if I convinced Stephen NOT to take remicade and he ended up with surgery, etc.

I try but I'm not sure if we can ever reach the point of truly believing that we have made the best possible decision for our child's health regardless of the outcome. Hindsight is 20/20 - we just don't have that luxury. :cry: If Stephen is diagnosed with a totally unrelated cancer at 50, 60 years old, I'm sure I will still feel some guilt that it was because of my decision re remicade (even if he were to stop now after only one infusion!) :ybatty: I sometimes/often feel it's so unfair but, as parents, these are the cards we were dealt! :ymad:


LDN is another drug that has shown some positive results - it comes in pill or transdermal form (that I know of...). There have been three studies - two adult and one pediatric but the studies have all been small (I think 20-40 patients). There are virtually no side effects! The problem is that most GIs don't have a lot of confidence in it as the studies are so small. My only regret - that I didn't push for LDN more a year ago!! I don't want to discourage you from trying LDN as I think it is certainly worth giving a try, however, I also don't want to encourage you if Austin's GI does not believe he can afford to wait and 'try'... :confused: But, certainly have a look through the LDN (Low Dose Naltrexone) subforum, under treatments for more info.

Jacqui's son has been on LDN as well as kimmidwife's daughter...
 
Jmrogers4

Jmrogers4

LDN is low dose naltrexone - Here is a link to the pediatric study
http://www.crohnsforum.com/showpost.php?p=563433&postcount=22

Naltrexone in much higher dosages - 50mg/day is use as an anti-opiate. It binds to opiate receptors and blocks them. So it is used for heroin addicts. There is a liquid form and transdermal form and a pill form. We use the pill form.

Biggest side effects reported are vivid dreams (Jack never had them) and headaches (Jack never had them) all which quickly have gone away. That being said there has not been a lot of research done. There is a biotech company which has recently bought the orphan patent rights to LDN and will hopefully begin Phase III testing.

It needs to be compounded correctly as it is not available in 4.5mg only in the 50mg dosage so would need to be ordered through a compounding pharmacy Skips in Florida is a good one and they ship.

It takes a while to work if it is going to and seems to be a lot of recommendation to continue on with steroid, aza, 6mp until it takes effect. But just like all the other medicines out there it does not work for everyone. We quit taking aza with the 1st dose of LDN and Jack had a flare about 2 weeks in. After about a month he started feeling better and continued to feel better, blood tests showed better results and colonscopy came back showing healthy tissue.

However he didn't gain weight and only grew a tiny amount until we added the supplemental EN a few weeks ago and has gained steadily on that. We have an MRE scheduled on Monday to check for bowel wall thickening/stricturing/scar tissue in the small intestine as his GI believes that is what could be causing the lack of growth/weight gain.

Kimmidwife's daughter is also on LDN and has seen some good results as well as LittleChloe's daughter and I believe she is doing really well on it as well.
 
L

LJS

Well, I spoke to my doctor, and after presenting Austin's case to the board at Children's, the consensus is to do EN. But they don't do EEN here.. they typically do eat what you want during day, do EN through NG tube at night..said they have not had good results with EEN, in terms of compliance.. and interestingly, my doc doesn't feel it's a case of "resting the bowel" so much as changing the bacteria in the gut.

I also asked to take my son off aza and he agreed, so they will put him on methotrexate with the EN. While I woud like to do drinking, he said that they have found iwth most kids, they only last a week or so then the kids refuse to drink the formula, and this way, through the NG tube at night, they can get the nutrition they need, and still be kids, etc..

So, now they are going to start the fight with the insurance company.. sure, they'll pay for $6000 in remicade but not for formula.. aahh!
 
Jmrogers4

Jmrogers4

LJS,
Not sure who you have insurance through but a lot of them will pay for it if it is through an NG tube and is medically necessary which in most of these cases it is.
I got them to cover most of Jack's they would have paid 100% through NG tube but they are paying 80% since he drinks it.
There is a lot to be said about doing it at night then you are assured he is getting all his nutrients and calories and whether or not he eats during the day is extra and no more nagging him to eat (at least that's what was happening at my house)
Good luck
 
Tesscorm

Tesscorm

Moderator
Staff member
There is another parent here but haven't seen her here in a bit... imaboveitall - her daughter also did EN but not exclusive EN and this seemed to take her into remission (clinical??). She has recently started remicade but was on EN for years. If you search for her posts, you'll find some info as well.

:)
 
L

LJS

thanks, everyone. Does the NG tube come out every morning, or do the kids have to go to school with it?? ugh! and is it easy to insert?
 
Brian'sMom

Brian'sMom

Location
Midwest
LJS said:
Now, I'm leaning more towards humira first and seeing how that goes, instead of remicade, and I want to get him off aza.. just not a risk I want to take any longer.
Click to expand...

Our GI took Brian off azathioprine before we began biologics. I also did not want to combine the two and she said, "Lets try just the one before we add to it". My brain was already trying to accept that so quickly we were at biologics and she knew it. But truthfully, my son didn't get his life back until he started it. He is thankful that it is available to him. There is a lot of things in life that can cause cancer...but you remind me of me 2 years ago. I said to our GI...I WILL NOT deal with crohn's and then lymphoma on top!! But I do believe the risks are low. Think of all the millions of people on Remicade and Humira, etc. Its not just for crohns disease...I know you know this, but; Not treating the crohns has a cancer risk too!! I can't remember the percentage of colon cancer...but its there too. Try to not worry so much. And try to avoid reading the small print. Even aspirin has small print cautions :) (Those are things I tell myself in order to cope with it)


Is is hard to put in an NG tube? Is it hard to sleep, ie roll around etc?
 
my little penguin

my little penguin

Moderator
Staff member
Iamaboveitall's
Daughter was doing well but not in clinical remission.
Here FC always showed signs of inflammation but mild I think.
 
L

LJS

I asked about LDN and he said that they don't believe there is enough data to support it.. aah! It's amazing how different doctor's have different philosophies!

They also want to repeat the Upper GI with small bowel follow-through.. I am quite confident there are no strictures.. and I hate the idea of more radiation.. but ..

I am concerned about July when he goes off to camp, but I should just take it a day at a time. Dr said we'd know in a month or so after starting how he's doing clinically..that is our biggest issue right now, clinically he's doing badly (ie, sed rate of 53!) but feeling overall great! But he has to grow and he has to get his inflammation controlled. So, we will start with EN non-exclusive and methotrexate and see how it all goes..
 
Tesscorm

Tesscorm

Moderator
Staff member
Thanks MLP, I'd forotten abt FC leves but I think she's the only one who did NON exclusive EN to try to induce remission??? Can't think of anyone else...

LSJ - your GIs comments on LDN is how most GIs feel - right or wrong??

You can keep tube in always or insert/remove daily. Stephen found it pretty easy but he was almost 17, twiggy930 's son was much younger and he found it easy too but lots of others have a tough time or are nervous to do it. If u look on Kids on EN thread in Diet for Kids subforum, I posted a limk of a girl demonstrating (also lots of info on that thread)

Good luck!! I hope you start to see some positive changes!
 
L

LJS

Doc said it will go in at night, out in am.. we will have an overnight hospital stay to teach us how to do it all..

what is FC?
 
Tesscorm

Tesscorm

Moderator
Staff member
FC is fecal calprotectin - a stool test that indicates presence of inflammation. It is more effective for inflammation in the colon opposed to the small bowel.

Read the Kids on EN thread and watch the youtube video - tips on video on inserting the tube. Also, CarolinAlaska 's current thread has lots of info - her daughter, unfortunately, had a tough time with the insertion and was recently sedated to insert the tube, she will leave it in but, as I said, not everyone has a tough time nor an easy time... everyone is different. Most important, I think, make sure they use a small tube (Stephen's size is 6Fr), sometimes one nostril is easier than the other (you can always use only one side if it's easier), drink water while inserting the tube (so you 'swallow' the tube)...

Good luck! :ghug:
 
Brian'sMom

Brian'sMom

Location
Midwest
Tesscorm, Does Fecal Protectin need a 'baseline'?

LJS, Did your GI order the fecal test? Good luck on the NG tube. Keep us posted (if that's ok.) I'd like to know how easy or hard it is. Thanks :)
 
Tesscorm

Tesscorm

Moderator
Staff member
I don't know... Stephen's never had it done, when I asked, GI said it's more useful large bowel disease. But I do know there is a normal range and that inflammation will take it above 'normal'. Lactoferrin is another similar stool test - again, never done on Stephen.
 
Clash

Clash

I don't think you need a baseline, individually. In a non-IBD person below 50 is normal for an IBD person generally I've heard below 150 to below 200. My sons FC test level done during a flare last year was at 1700. Week before last when tested it was at 300. My son's disease is located in his TI, so small bowel.
 
Clash

Clash

I don't think your doc is wrong, Tesscorm. I think it is just more accurate in the large bowel, but may be hit and miss in the small bowel, kwim? Depending how high up in the small bowel the inflammation is.
 
my little penguin

my little penguin

Moderator
Staff member
^^^ yeah that .
Ds had two so far one last August was 86. So very good for an ibd kid. But he still was feeling horrible at the time.
He just had another one done on Monday .
 
Catherine

Catherine

Moderator
Sarah had one of 620, with normal inflammatory markers. She only had odd days of pain. Still developed small bowel fistula.
 
Last edited:
alex1

alex1

im sorry you are going through this. i have to take remicade or this diet called the fodmap diet try it if you dont want to do either but ask your docter first dont do it strait on im 11. im starting the fadmap diet.
 
Twiggy930

Twiggy930

Location
Canada
Just wanted to add some encouragement for the NG tube. My son did EEN last year via an NG tube which he inserted himself everynight. He was 10 years old at the time. He learned how to do it in about 1 hour and within about 5 days he could insert it in 12 seconds flat with no help from anyone. He is a pretty calm kid and he approached the whole NG tube thing with a bit of 10 year old boy goofiness, meaning he was kind of excited to show his friends what he could put up his nose... :ybiggrin:

My son also used the 6Fr size tube that Tess has described. I also think it is easier for the person getting the NG tube to do the inserting, if they are able and willing to try. There is a bit of gentle pushing/wiggling to be done when the tube reaches the back of the nose and I think it is better if the person doing this can feel what is going on so they know when to keep pushing and when to stop and wiggle it over slightly.

My son also used some numbing gel (lidocaine) in his nose for the first few times he inserted the tube. He would put some of the gel on the end of the tube and snort it into his nose just before he did the insertion. After about a week he didn't even bother with this anymore.

Good luck with the tube! I hope it goes well.
 
CarolinAlaska

CarolinAlaska

Holding It Together
All of us have taken different pathways from different GI docs and have unique outcomes. Sounds like you have a plan, and that is great. I hope the tube insertion visit goes better than ours did the first time. Don't read my post about it...it may only cause unnecessary fear/anxiety about the whole thing. We're in a rural area and didn't use a children's hospital or even have our GI doc overseeing what was ordered, who was doing it, etc... Again, we're on a different path than you, and our obstacles are different. Our next option may be 6 MP for maintenance... not looking forward to going there.
 
Zinnia

Zinnia

Hi. My son has CD and was also failing to gain weight and height. He failed on all drugs including Humira. We put him on enteral nutrition (NG tube) for about 6 months. During this time he gained 10 pounds (about 30% of his starting weight before tube):rosette1: and 3 inches in height. It sounds scary to put a tube down your child's nose, but it is non-toxic and very, very safe. Once we all got used to it, EN was wonderful for his growth. Let me know if you have any questions about it. Good luck!
 
Zinnia

Zinnia

Some more on En. Before we began, I was very upset that we would be altering our son's life by his not eating real food. However, I couldn't have been more wrong. He received 1100 calories at night while he slept. So, in the morning he was not hungry for breakfast and skipped it. He was allowed to eat whatever he wanted and whenever he wanted. He would only eat if he got hungry. Usually this meant a light snack in the afternoon and a normal dinner. Very important: We told our son that this was a "medicine" or "treatment". Psychologically, he therefore did not feel confused about eating. Like your child, mine went a year and only gained a pound or so. Now I wonder why we didn't try EN sooner!
 
izzi'smom

izzi'smom

You have gotten fantastic advice, so I am just offering up support!

I was terrified to start on the biologics as well...and although they didn't do the trick for us, we didn't suffer from any side effects. Hoping that whatever you decide does the trick for you, and welcome!
 
L

LJS

Thanks to all who replied!! And Zinnia, I'm so excited to see someone else who did EN but not exclusive..that is what we are doing, my doc and his team don't believe in EEN for kids. Aside from growing, did you DS go into remission?

Angie, Izzi is just precious! What is Tacrolimus & Bactrim? looks like you've really tried it all, so I'm so glad that your adorable girl is doing well and in remission!
 
L

LJS

UPDATE: we are moving to EN, done at night (tube in/out every day) with son getting 80% of his nutrition via tube/formula and the rest he can eat what he wants. Waiting for isnurance to approve (they already denied it once and the formula will be $1000+ per month, which I cannot afford).. then we will go in for a 23 hour stay.. son is on board with it although we are both stressed about inserting the tube.. hopefully we'll get it done Friday, and be on our way. His doc is more concerned about his growth than his crohns at this time!! Today is my son's 9th birthday and I am just so very proud of him!
 
Farmwife

Farmwife

HAPPY BIRTHDAY TO YOUR SON!

You'll be amazed how much he'll grow once he body is getting enough nutrition and the crohn's is in remission.

I hope all goes well.
 
Jmrogers4

Jmrogers4

Happy Birthday to your son!
We are just finished 5th week of partial EN. It has worked better than I expected. He started at 77 lbs 5' and reached the 100 lb mark last night! Not sure about the height, I need to measure him but there is a noticeable difference in height with his brother and they were the same height at the start. Wish we would have done this much sooner instead of struggling with the growth/weight gain for the last 3 years.
I called the GI yesterday and am awaiting a call back today to see if we can decrease the amount he is drinking per day. He is eating so much better now as well. I'm hoping we can go to 6 cans instead of 8 and see how he does then decrease again if he is doing well.
Keep on the insurance, it took me a lot of calls! and it had to go through a medical supply company with a prescription but I got it covered finally.
 
P

positivemum

When first diagnose my son was 12 and he did 8 weeks on Fortisip shakes 8 a day. He drank them all as he didn't want tube. He was amazing as it was over Easter - no choc! He never missed one. we have since moved to meds but I think he should go back on one or two a day as all you need is in them
 
L

LJS

Jacqui,

Wow - 23 lbs in 5 weeks?? That is half my son's body weight! I'll be happy with 5-10 lbs over the next few months! Children's hospital is fighting it out iwth insurance for me.. yes, its' all going through a medical supply company with prescriptions so we shall see.. he's scheduled to do Peptamen jr??
 
Tesscorm

Tesscorm

Moderator
Staff member
Happy Birthday to your son!!! I hope he has a great day! :banana:

Also hope all goes well with the EN!!!


And, Jacqui, that is amazing news about Jack!!! Woohoo!!! :thumright:
 
Jmrogers4

Jmrogers4

We are just amazed! We were thinking 10lbs by end of 8 weeks maybe even 15 but not this much!

He looks so healthy if even a little chubby but I'm counting on the height growth to catch up to the weight growth now. Hoping for a normal developing teenager by end of the summer, he turns 14 in July. Now that his body has some stuff to work with.

We use Peptide, so same stuff for the most part different brand.
 
my little penguin

my little penguin

Moderator
Staff member
DS drinks peptamen jr and also gained 20 lbs and grew 3.5" this past year- 20 lbs was over the summer ;)
He was barely 50 lbs at age 9 and is now 71.

He is now on 2-3 peptamen jr a day to make sure he keeps the weight on and slowly gains at a normal rate.

DS drinks all of his orally without a tube.
Good luck
 
Marni's mom

Marni's mom

OMG, Twiggy, you cracked me up with your story about your son being goofy and showing off to his friends what he could put up his nose. :)

My daughter didn't take to the NG tube insertion well at all. It took five nurses to hold her down while one put it in. Once in, it stayed in. She wouldn't let anyone touch it. She did get used to it being there, but it was ALWAYS there because taking it out to put it back in was not an option in her mind. After we determined that the EEN was working out well, we had her NG tube changed to a G Tube and then a mickey button, and a year later, she's still on EEN. While the idea for her was complete bowel rest, she eats so little that her doc said it was fine to eat whatever she wants in addition to the EEN. She usually takes three or four bites and she says she's done.

Thanks for the laugh.
 
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