Son recently diagnosed-need advice on treatment

[CrohnsKidMom]

My 8 yr old son has been recently diagnosed with Crohn's. We have been given 2 treatment options, and we have huge concerns with both. Option #1 is a liquid diet for 3 mos via nasal feeding tube, for 20 hours a day. Imuran would be given for maintenance. Option #2 is Prednisone for 3 mos, and again, Imuran for maintenance. We feel the feeding tube would be very difficult emotionally, and the side affects of both Prednisone and Imuran scares us. Are these really our only 2 options?!

 

[Clash]

Welcome to the forum. I'm so sorry you are faced with these decisions. Enteral Nutrition, the formula feed you mention has been used by several on the forum who have children with CD It is a first line treatment used in most countries except the U.S. possible due to compliancy(?)

I'm going to tag My Little Penguin, Tesscorm, Carolinalaska and Farmwife, I think all of their children have used EN as a form of treatment. Also we have an EN subforum(<---click here) with great info and a parents forum thread(<--click here) on EN.

We also have a Imuran subforum(<--click here) and a thread on Imuran(<--click here) where parents have posted their kids experience with Imuran.

I hope your son's inflammation is under control quickly and he is on the way to remission.

 

[my little penguin]

my son is 9 and was dx at age 7.
Those are actually two very good options.
AS far as NG tube your child may be able to drink the formula orally without a tube.
My son did no food for 9 weeks - 7 cans/shakes of peptamen jr a day.
not the most pleasant tasting thing but worth a try.
some kids can drink it JMROGERS child drinks his orally.
others need a tube.
some use the tube only at night then pull it during the day.
Imuran has scary side effects but so does tylenol - docs just don't remind you of those sideffects
Imuran just means lots of blood draws so the docs monitor everything really closely so they can catch anything if it comes up.
DS was on 6-mp (similar to Imuran for about 8 months).
The meds were not strong enough for him and it caused his AST/ALT numbers to increase so the gi added a few other meds.

PErsonally we chose the EEN route first sincec it has not bad side effects with the 6-mp.
later we needed pred but at least we knew we had tried formula.
my son still drinks some formula to make sure he grows like a normal child since that is a big issue for ibd kids.

It is tough but getting your child back smiling and growing makes the scary meds - alot less scary.

hugs

 

[Devynnsmom]

Hello and welcome to the forum. I have no experience with either treatment. This is a great place, full of wonderful helpful people. I know there are a few people with children with experience though. My daughter is 11 and has ulcerative colitis. She is on sulfasalazine and it seems to be working! Good luck. I hope your son is feeling better soon.

 

[Amy2]

My 16 year old son was diagnosed with Crohn's earlier this month. He's not done growing, so I wanted to avoid steroids, if possible, so we went with the liquid diet. His is called Peptamin and he drinks 8 of them every day. He tried the feeding tube in the hospital, but that did NOT go well, so he decided to drink them, instead. It was a struggle for him at first, as he was not feeling well, but after a couple of weeks, he actually started to enjoy the taste. (Vanilla). His doc allowed him to eat some food also, but after getting advice here, he wanted to stop eating food, too (his doc okay'd it) and he's on his 5th day of just Peptamen and he's feeling really good and has gone from 79 lbs to 97.5 lbs since early March. He's also taking Pentasa and Pepsid.

He saw the doctor last Friday and his bloodwork came back in the normal range for inflamation. So, so far, so good.

 

[CrohnsKidMom]

Thank you to those who responded to my treatment question regarding my 8 yr old son's Crohn's. I appreciate the advice and support! I am now wondering about naturopathic remedies. Has anyone tried them and had good success?

 

[my little penguin]

to be blunt-
the younger the age of dx ( less than 20 is considered young BTW)
the more severe the disease course.
the disease tends to spread for about 10 years from dx in children.
kids tend to have a much more severe disease course which can include stictures, fistulas, scar tissue and /or loss of bowel through surgery.
you can live without a colon but you can not live without a small intestine.
YOur child's doctors are recommending these very strong scary meds because your child has a very scary evil disease which sometimes does not stop even with the strong drugs.

when ds was first dx I was in tears all the time horrified at giving him pentasa (very mild drug)
after a month of that and no real response only worsening symptoms for my child I was willing to look at stronger drugs.

the goal is to keep your child a child for as long as possible (that means healing the inflammation because ongoing inflammation will keep your child from absorbing nutrients).
by the time your child has started to lose stop gaining weight or grow the body next stops giving nutrient to vital organs before shutting down.

kids are designed to gain weight and grow when they are not the body hits reserves first hence the "no weight gain" then it stops growth, and next weight loss since it is trying to protect the important stuff (heart lungs brain etc..)

This disease does not have an easy fix. What may work for one child may not work for another.

these days I just want any med to work ( scary or not).

Just trying to keep your child's gut as healthy as long as possible.

it does take time to accept and sink in.

please read our pediatric research section it can be an eye opener as to why and what is needed for our kids.

 

[my little penguin]

*Use of Enteral Nutrition for the Control of Intestinal Inflammation in Pediatric Crohn Disease
http://www.naspghan.org/user-assets/....29[1].pdf

*Balancing Risks and Benefits of Treatment
http://www.ccfa.org/assets/pdfs/risk...transcript.pdf

*Addressing Risks and Benefits in IBD - Slideshow
http://online.ccfa.org/site/DocServe...df?docID=19022

*Diagnostic Considerations in Paediatric IBD Management
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886370/

http://pediatrics.aappublications.org/content/114/5/1281.abstract

the rest can be found here

http://www.crohnsforum.com/showthread.php?t=43002


hugs - I know its not easy

 

[Jmrogers4]

My son is 13, 10 at diagnosis and MLP is right he does drink the EN, he uses Peptide (by Pediasure) and drinks the strawberry, vanilla is okay as well. It was a struggle at first and he spent some time at the sink taking a drink then rinsing his mouth with water (overall teenage drama) but we told him and his doctor told him this was not optional it was either drink it or NG tube. We had reached the point MLP talks about where he was severley underweight and they were worried about organ/growth etc. He was 5' and weighed 77lbs. He has been on supplemental EN for 6 weeks now and has gained 23 lbs and has tons of energy and looks healthy. He can drink one in less then 5 minutes now and drinks 8 a day.
We have done the prednisone route, personally I'd take the EN route any day over it as long as it is working but sometimes Pred is just what is needed to get inflammation under control quickly.

 

[Twiggy930]

:welcome: CrohnsKidMom

So sorry to hear of your son's diagnosis.

My son was diagnosed last year at the age of 10. We were also given the same two treatment options. At the time of the diagnosis we couldn't wrap our heads around the whole EN treatment regime. The thought of a NG tube was daunting as was not eating for such an extended amount of time, so we opted to go the prednisone route. Prednisone worked fast but did not completely get rid of my son's symptoms so after about 1 month we switched to EN. At this point we had all come to terms with the diagnosis a bit more and EN did not seem as daunting as it did initially.

My son did EN for 6 weeks via a NG tube. He chose to do it via the NG tube as he is a picky eater and knew that he wouldn't be able to drink all the formula. We went to the hospital for about 1 hour (maybe 2 at the most) where the wonderful GI nurses taught him how to insert the tube. I was so worried about the NG tube and was AMAZED when he calmly inserted it himself on the first go. You could have picked me up off the floor! EN went well for my son. After about a week he could insert the tube with no help from me in 12 - 13 seconds flat. He found not eating hard but managed it ok with lots of distractions and rewards. EN also did not get him feeling perfect but it certainly helped while the Imuran kicked in.

If you asked my son today to choose between prednisone and EN I am certain he would choose EN. He did not like the side effects he got from prednisone. I should point out though that none of the side effects he got were serious just annoying, such as insomnia, night sweats, lack of concentration, moodiness, moon face, etc. I should also point out that not everyone has the same experience with the NG tube and for some it is really hard.

As far as Imuran is concerned we have had good success with it, however it did take a long time to kick in. I don't like the side effects of any of the maintenance drugs but unfortunately they are necessary. I like to look at them as something we do until a better treatment comes around or, better yet, a cure!

:hang: it is a hard adjustment but it does get easier with time.

 

[Twiggy930]

Here are links to some of my old threads that deal with some of your questions. Hope they help.

Switching from Prednisone to EN

Anyone gone to a Naturopath?

 

[Tesscorm]

I can only second, third all that's been said above. My son was 16 (almost 17) when he was diagnosed and he did six weeks of EEN. He responded really very quickly in being relieved of symptoms. He gained 10 lbs during the exclusive period (formula only) but then, as soon as food was added back, gained an additional 20 lbs in the next six weeks! Once the exclusive period ended, he continued with EN at 1/2 dose, 5 nights/wk and has continued with this since July 2011. While EN did keep the crohns under control for this time period, it did not eliminate all the inflammation. Upon his transfer to an adult GI in the Fall, it was decided we would add remicade. For now we are keeping the supplemental EN to maintain nutrition... but, this may change soon???

Like Twiggy's son, he had a very easy time learning to insert the NG tube himself, inserts it nightly (in seconds) and removes it in the morning. You said it would run 20 hours per day, the time may lessen as they gradually bump up the rate of the pump. This would give your son a bit more freedom from the pump, etc. Many of the formulas may be taken orally or by NG (ie peptamin, etc.), so another option is to go with an orally acceptable shake so that he can drink a few during the day and finish off the required amount overnight by tube - again, just to give him some freedom.

One downside in doing the ng tube only overnight is that there is a struggle with hunger during the day (mainly towards dinner time) - being able to drink some shakes can help with that.

We were not allowed any food at all but were allowed clear fluids which included jello, broth, etc. - the broth was a big help as it, at least, was hot and tasted like food.

It is tough when you first hear of the diagnosis but it will get easier, especially when you see your child feeling and acting better! The parents here are awesome and full of valuable knowledge and always ready to lend their support during the tough times. :ghug:

Good luck!!

 

[CrohnsKidMom]

Thanks to all of you who have responded. I really, really appreciate your input. We wanted to explore all avenues before we went ahead with the dr's recommendations. At this time I think we will go with the Prednisone and Imuran and pray there will be no serious side affects. We may go the tube feeding route in the future. I will be in touch to let you know how it's going. I'm sure it won't be long before I have more questions. Thanks again! :smile:

 

[parentnj]

Our 13 year old son was DX'd in NOvember 2012. In December he started Prednisone and Pentasa due to rapid weight loss and anemia. He has tolerated the prednisone well (a few muscle pains and headaches when first starting and tapering). Pentasa failed as it does with most Crohn's patients. He is now on Methotrexate and almost tapered of prednisone and is doing very well. Whatever treatment course you choose, I agree with everything that's been said here, Crohn's in kids can be particularly bad and its so important to get it under control. I advise working closely with a specialist you trust ... and while the medicines are scary (although even Tylenol's warning label is a horror show), the disease is much worse.

 

[LJS]

My son was diagnosed 2 years ago.. he was 6.. he just turned 9. He's been in symptomatic remission (mostly) for nearly 2 years but his inflammation has continued and he's not gaining weight (he's just 47 lbs).. only 1 lb gained in 2 years.. we are going EN, but not EEN. Son will do EN at night for 80% of his nutrition and eat what he wants during the day.. haven't started yet as I've been fighting the insurance company, which refuses to pay for the formula.. I was able to get a months supply to start with so we will go for training, etc in another 10 days..hopefully son will not have a problem with the NG tube. He's still on imuran (azathioprine) but will be switching to methotrexate soon.. just not doing everything all at once. This disease sucks.. there is no other way to say it. Hopefully your son will get into remission quickly and stay there..

 

[CarolinAlaska]

Welcome to the IBD Kids' Parents Forum. You'll find lots of support here, but I'm sorry that you had to find this great community of people because your child was diagnosed with this monster disease. You'll be on a roller coaster for a while of emotions as you adjust to the world of being a parent of a child with a chronic disease without good treatment choices (as in, they are scary meds and they leave us reeling in fear as parents!). I promise, it gets easier.

So, our story is another like above. My 13 yo daughter was diagnosed with Crohn's in January of this year. Originally the doctor only gave us the option to start prednisone. I did some research on my own, and asked about EEN and our doctor was open to it, but isn't experienced using it. For my daughter who is underweight (<1% for BMI), it made more sense and was recommended more in the resources I researched in. I found the pros outweighed the cons for us. We are on week 7.5 of a purely formula diet now and she's almost finished her 8 week course. The first 3 weeks she tried to do without an NG tube drinking Ensure, but couldn't tolerate drinking it and it made her sick. We tried doing the ng tube the regular way in the beginning, but she had a traumatic experience in our rural hospital without special children's medical professionals, so we had to put her under anesthesia to get it in. She is now at the stage where she needs to change it (one tube is only good for 4 weeks), so we're trying to decide what to do. Unfortunately they've only just begun her maintenance med (6MP, very similar to Imuran) and it will take 3-6 months to get it to kick in... (You're lucky your doc is on the ball and recommending you start Imuran from the get-go). She is almost symptom free right now, but her weight goes up and down (gained five in first 6 weeks, lost 2 at last visit after 3-4 days of the stomach flu). She definitely needs to continue at least supplemental EEN to help gain weight. We aren't sure what will happen when she adds food to the mix in the next couple weeks.

Pros of EEN: much more healthy way to gain weight in underweight IBD patients, works as well as prednisone in many kids, but doesn't keep patients in remission (neither does prednisone), not many side effects. It sounds bad, but kids really do adjust to having an NG tube quickly - I think it is harder on us parents.

Cons of EEN: have to limit foods to the formula used, hassle of NG tube part or full time, or use MICkey button (we're thinking of going to this next), formulas are full of artificial flavors and ingredients (we usually eat much cleaner), much more expensive if your insurance doesn't cover it well, as ours has

Pros of Pred: cheap, easy, docs have more experience with it in US (sounds like your doc is comfortable with both since he/she is suggesting EEN from the start)

Cons of Pred: lots of side effects, often rebound inflammation when you wean off of it, many times kids get dependent on it to maintain remission

I hope that helps. Keep us informed on how things go with your little one. We'll be here if you need any advice or encouragement.

 

[Amy2]

Knowing what I know now, I never would have wanted my son to even try the NG tube, as I see that drinking his Peptamens throughout the day keeps him satisfied for the most part. About dinner time, he'll often say that he's hungry and glad that he has 1 or 2 of them left. I think he'd be having a much harder time not eating food if he couldn't have them.

Yet, if your child needs an NG tube and had a bad experience having it inserted in the hospital, I would recommend they watch some online videos. It's not a big deal, when done CORRECTLY.

 

[izzi'smom]

My dd was 5 when we used enteral nutrition. She couldn't stomach the shakes, so we used an indwelling ng tube. She did very well on it...her symptoms lessened and we got used to it fairly quickly.
I also tried a few natural remedies/supplements- probiotics, fish oil, chiropractic care, dietary modifications. I second the thought that early onset Crohns tends to be severe. We were better off working to get her disease under control and THEN attempting other things...prenidsone worked initially for us, which bought us some time. I don't have any experience with Imuran.
Sending you (((hugs))) and support...this must be a tough time for you!

 

[LJS]

Amy2, you mentioned your DS has been at Children's Colorado. That is where we have been going for the last 3 years.. what doctor do you see?

 

[Amy2]

Dr. Edwin Liu. We just met him on the first of the month, when my son was first admitted to the hospital, but we're pretty crazy about him.

 

[LJS]

We've seen Dr. David Brumbaugh for 3 years and absolutely adore him as well.. it's overall a great hospital. Just wish we didn't have a need for it..

 

[Amy2]

I'm pretty sure he was the doc we first saw in the ER. Short hair, athletic build?

Overall, our experience in the hospital was pretty bad. It seemed as though the left hand did not know what the right hand was doing and we were given lots of info which later turned out to be incorrect. And my son was needlessly tormented three separate times (twice by one nurse).

 

[LJS]

Amy, I"m sorry you had such a bad experience. I have to say, it took over a year to officially diagnose my son, but I never felt he wasn't getting good care...although there was one night-nurse who I would have LOVED to shove a tube up his butt.. with the total lack of care he gave my child..