Newly Diagnosed CD - Advice / Treatment Options

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TysDad

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Dec 11, 2016
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Good morning everyone,

Our son (age 13) was recently diagnosed with CD. He had developed a perianal abscess which was drained via surgery at the local ER. All went relatively well. After a series of tests, an endoscopy and colonoscopy with biopsies, it is a near certainty that CD is the culprit.

We are currently researching treatment options and like the idea of EEN, even though the Ped-GI doc wants to go with Remicade right out of the gate. He indicated he observed inflammation along the entire GI tract and a small fistula at the ileum, during the scoping process. Any idea why the doc would go right to Remicade and not even mention other options? Our son is currently on 500mgs Flagyl 2xd and supplementing his low amount of food intake with Ensure and Peptamen Jr.

Our sons is small for his age, underweight and possibly puberty delayed, most probably due to malabsorption. We are concerned going strictly EEN will not give our boy the amount of calories necessary, since he will only agree to oral supplementation, but can barely get two 8oz bottles down per day, after very small meals. We are looking for guidance from some of you, more experienced, parents. Thank you, in advance.
 
Hi and welcome (but sorry you have to be here),
Your doctor's recommendation of Remicade makes sense. Fistulizing disease is hard to control and your best bet is Remicade. Plus, considering your son isn't growing and possibly puberty delayed, the GI probably wants to get him back on track. With kids, you only have a small window of time where you can do that. Remicade kicks quickly - faster than any of the other CD drugs.

Many parents here have kids who went straight to Remicade. It has become more and more common.

That is not to say you can't do EEN too. EEN is usually used to induce remission, not as a maintenance strategy. Supplemental EN (like your kiddo is doing now) can be used for the long term.

Some kids drink their shakes for either EN or EEN and others use an NG tube. My daughter started off drinking hers but found it too hard and couldn't drink enough to gain weight, much less maintain. So we went to an NG tube. We were both dreading it, but it turned out to be quite easy. She had one uncomfortable night, but after that, she was fine! She inserted it every night and pulled it out in the morning, so no one at school had to know.

It is a very thin tube - think spaghetti-like. She could insert it in 10 seconds within a few weeks. Now she says it's so much easier having a tube that she will never go back to drinking formula!

If you are using something like Ensure or Boost, keep in mind that he may need a more broken down formula - like Peptamen Jr or Pediasure peptide. These formulas are "semi-elemental" and are easily digested. However, they do not taste particularly good, though there are several kids who have been able to do EEN with them (orally).

I am going to tag some other parents so you can hear from them:
Clash, my little penguin, pdx, crohnsinct, Pilgrim, Jmrogers4, Mehita, Tesscorm
 
Posted in your other thread
My child has done be een three times since dx
First two were with pepramen jr 8 shakes a day
Last one this spring he switched to neocate jr (elemental amino acid based )

He was underweight at dx but since adding meds and een or supplemental een
He back on his growth curve

Some kids can't get past the taste and do need a ng tube
Ds drank his all orally but was only 7 at dx so he didn't think he had a choice in the matter
And we bribed heavily for the 9 weeks
He also cried a lot the first few days and could only drink one or two shakes would take him over an hour to drink one

Now he chugs them and drinks 16 oz at a time
 
Thank you so very much for the reply. Your post is quite reassuring. We see the GI doc tomorrow and hope to make a final decision on which direction to go. I do believe Remicade may be the best possible option at this point, at least in the short term.
 
Remicade is done for life or until it stops working
It's not something you can stop and start
It is based on a murine protein so once you stop the odds of building antibodies and reacting are very high
That said most don't stay on it their entire lives since kids tend to need to switch meds more often than adults and there are always drugs being researched in the pipeline
Hopefully your appt will go well
 
my little penguin said:
Posted in your other thread
My child has done be een three times since dx
First two were with pepramen jr 8 shakes a day
Last one this spring he switched to neocate jr (elemental amino acid based )

He was underweight at dx but since adding meds and een or supplemental een
He back on his growth curve

Some kids can't get past the taste and do need a ng tube
Ds drank his all orally but was only 7 at dx so he didn't think he had a choice in the matter
And we bribed heavily for the 9 weeks
He also cried a lot the first few days and could only drink one or two shakes would take him over an hour to drink one

Now he chugs them and drinks 16 oz at a time
Click to expand...


My boy is currently taking Peptamin Jr in the morning and Ensure in the evening. He really has a rough time getting over the taste of the Pep Jr. He is currently in the bottom 10th percentile in growth. His appetite is has been lacking for quite a while. I think his lack of appetite is anxiety related. An NG tube might be included in our course of action.
 
Things to help with taste
Make it as cold as possible but not from zen
Use a cup with a lid and a straw (straw by passes the taste buds)
Some docs allow you to add flavoring if you can only get vanilla
We added choc syrup for a while
Bribery
Set goals two a day then three etc...
 
We made it cold too. That helped. My daughter liked the strawberry and chocolate flavors. She just could not drink enough though, so we really had to move to a tube.

The tube was really not as bad as we were expecting it to be. In fact, it was quite easy. My daughter was also a teenager at the time (I think she was 16) and she handled it pretty well. Once she was getting calories and started having more energy and feeling better, she became very glad that she had the tube. It really made a HUGE difference to how she was feeling.

Feeding tube awareness is a great site with lots of info about feeding tubes.
 
So sorry to hear about your son's diagnosis. My daughter was diagnosed when she was 12, and like your son, she was very underweight. We started Remicade right away, and I'm very glad that we did. However, I wish that we had also started a short-term, quick-acting anti-inflammatory treatment at the same time, such as EEN or steroids. Remicade can take a while to start working, and my daughter got much worse before she got better because of that. She finally got so sick that we had to add EEN, budesonide (a type of steroid), and methotrexate in addition to Remicade, and with all that she finally started getting better. We were then able to stop the EEN and the steroids, and just continue with methotrexate and Remicade.

I wish now that we had started EEN right away with the Remicade, rather than waiting. When we finally started EEN, my daughter used an NG tube, and, while not easy, it was way easier than we thought it would be. Within a few days of starting with tube feeding, my daughter's cramping, nausea, and diarrhea ended, her energy levels went way up, and she started gaining weight.

For a few months pre-diagnosis, my daughter had no appetite, and while she's an anxious kid in general, I don't think the lack of appetite was due to anxiety, but to the inflammation in her gut. Every time that she has a flare, her appetite vanishes--it's one of the best indicators of inflammation for her.

She's now exactly 2 years post-diagnosis, and she's gained 45 pounds and grown 4.5 inches in that 2 years. Remicade, combined with methotrexate, has really worked well for her.

Good luck with your decision--it can be very overwhelming at the beginning.
 
Thank you for posting, pdx. Your words meant a lot, since we are at the same point you were at two years ago. I am so glad your daughter is doing well, all things considered. This will certainly help us in the decision making process.
 
Sorry you have had to find us but you could be describing my son several years ago and that was after trying the other drugs. We even tried EEN and partial EEN for weight gain and growth. When we did the supplemental EEN he did gain weight (we used a semi elemental - Pediasure Peptide) he was to drink 6-8 a day and was allowed to eat whatever he would as well, he was 13 at the time and went from about 75 lbs up to about 95 and grew an inch to hit about 5' - no puberty though looking back at pictures he still looked small and tiny just chubbier. When we stopped the drinks after 8 weeks (it was h*ll trying to get him to drink them) a lot of the weight dropped off and he was down to 85 pounds or so and virtually no puberty at 14 1/2 when it was collectively decided what we were doing was not working well enough and maybe we should try remicade. He was a lucky one and started improving with his first dosage he started gaining weight right away and growth was slow first 6-9 months but then he just took off and his growth velocity which had dropped off the bottom of the chart was now off the top of the chart ( I think he grew 9" over one year) He is now at 17 1/2 (3 years after starting remicade) just a touch over 6' tall, weighs about 140 (but comes from a skinny family, his brother who does not have IBD is 5'11" and weighs the same).
Puberty hit hard and fast I think he went through about 3 years of puberty in 1 year and went from no body hair to shaving.
As they say a picture is worth a thousand words and I think shows the difference the first is just before starting remicade 9th grade, followed by 10th, 11th and 12th (this year)
 

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Jmrogers4,

Thank you for your reply. It seems you have been exactly where we are right now. I for-see having the same issues with the EEN or EN as well, being that our son dislikes the formulas available to him and going from a few a day to 8, or so, would be a battle. It is encouraging to see that your son is doing so well, once you were able to determine what works for him. It has been incredibly helpful to hear from those who have struggled with this potentially life altering decision.
 
Jmrogers4 said:
Sorry you have had to find us but you could be describing my son several years ago and that was after trying the other drugs. We even tried EEN and partial EEN for weight gain and growth. When we did the supplemental EEN he did gain weight (we used a semi elemental - Pediasure Peptide) he was to drink 6-8 a day and was allowed to eat whatever he would as well, he was 13 at the time and went from about 75 lbs up to about 95 and grew an inch to hit about 5' - no puberty though looking back at pictures he still looked small and tiny just chubbier. When we stopped the drinks after 8 weeks (it was h*ll trying to get him to drink them) a lot of the weight dropped off and he was down to 85 pounds or so and virtually no puberty at 14 1/2 when it was collectively decided what we were doing was not working well enough and maybe we should try remicade. He was a lucky one and started improving with his first dosage he started gaining weight right away and growth was slow first 6-9 months but then he just took off and his growth velocity which had dropped off the bottom of the chart was now off the top of the chart ( I think he grew 9" over one year) He is now at 17 1/2 (3 years after starting remicade) just a touch over 6' tall, weighs about 140 (but comes from a skinny family, his brother who does not have IBD is 5'11" and weighs the same).
Puberty hit hard and fast I think he went through about 3 years of puberty in 1 year and went from no body hair to shaving.
As they say a picture is worth a thousand words and I think shows the difference the first is just before starting remicade 9th grade, followed by 10th, 11th and 12th (this year)
Click to expand...


If you don't mind us asking; where there any side effects related to the Remicade, that your son experienced? Was he on and immune suppressors or steroids in conjunction with the Remi?
 
I think the first one he was tired the following day but nothing since then, he has gone to school afterwards, played baseball, gone to work, etc. He does get a dose of steroids along with his remicade.
His GI normally has teenage boys do methotrexate along with the remicade but he had a pretty severe reaction to methotrexate a few years ago so we decided to try remicade as a mono therapy and add imuran if needed. So far so good the remicade has been enough to keep him in remission.
He was on regular infusion for the first 20 months or so but has been on the fast infusion since then with no problems (remicade is infused over an hour) so we are in and out in under 2 hours. Now we're trying to figure out how to keep him on it as his first choice college does not have an infusion center close (it's 2 hours away) but we don't want to change since he has done so well on it.
 
Hi Tysdad, welcome but, am also sorry you've had to find your way here.

My son was a bit older when he was diagnosed, 16 years old, but his initial treatment was EEN. He responded very well and after the six week exclusive period, he went to supplemental EN as his maintenance treatment for the next two years. While this was comforting to a parent (ie no med decisions), knowing what I know now, I think we were playing with fire as MREs continued to show simmering inflammation. He was, however, in clinical remission - which means no outward symptoms but inflammation on the inside. Upon his transfer to an adult GI at 18, his new GI was adamant that this inflammation must be treated more aggressively and his preference was remicade.

My son has now been on remicade approx. 4 years with no problems.

I very much encourage you to add EEN and continue with supplemental EN along with remicade. I do believe the added nutrition has aided my son in doing so well over the years. Once he finished the six week exclusive period (3000 cal/day), he continued with supplemental EN (1500 cal/day). After beginning remicade, he gradually tapered down but, even today, at 22 years old, still drinks 1-2 Boost shakes most days (unless he runs out at school).

One consideration that I wish his GI had mentioned... do check his immune levels to measles, chicken pox, mumps, etc. prior to commencing remicade. Once on remicade, he will not be able to have those vaccines. Due to unrelated testing, we found out my son does not have full immunity to mumps. If we'd known this prior to beginning remi, we could have given him a booster shot... now all I can do is worry about it. :ymad:

Also, on EEN - my son did it by NG tube. He learned to insert it himself. Would insert it before bed, ingest formula overnight and remove in the morning. He actually found it quite easy to do... took less than a week and he was completely comfortable doing it. (Also helped for MREs - being a picky eater, on at least one occasion, he used the NG tube to ingest the contrast, rather than drinking it ;)). Once he was on supplemental, and the amount of formula was half, I did ask him if he wanted to try to drink the shakes - he said he preferred the tube - both because he didn't want to drink something he didn't like and because he didn't want to worry about fitting in the shakes throughout the day. Overnight, it was done while he slept.)

Good luck!!!
 
And, Jacqui - GREAT pics!!! Can't believe Jack is so grown up and very handsome young man!! He is going to have a VERY FUN time at school! :dusty: :rof: :rof:

As far as his remi infusions - S's school is also almost 2 hours away... he's always come home for 90% of his infusions. It's a good excuse for me to see him every six weeks! ;) (But, we are lucky, in that when S couldn't come home, we have had the option of changing it to a location near his school when it's been necessary...)
 
Well, we may have had a bit of a setback. After deciding that Remicade and supplementing with EN would be the best treatment option, the GI's examination last night revealed our son may have a newly formed abscess. Very disheartening, to say the least. Unfortunately, we will have to delay the Remicade treatment until we rid his body of all infection. We will be seeing a surgeon Thursday for consultation and determine whether or not we will just need to introduce Cipro to the Flagyl, which he is currently taking, or another intervention strategy is necessary. We are hoping for the best. He has already been through so much.

Tesscom, thank you for your reply. Everyone's input made the decision a little easier for us. And, you are right, Jacqui's son looks fantastic! What a significant difference, in such a a short period of time.
 
Last edited:
If it's any consolation, my son had an active abscess and fistula when he got his first Remicade dose. He was started on IV antibiotics that same day to help with the abscess and fistula (Zosyn and Clyndamycin). Within two weeks, everything was cleared up and he's been in remission ever since - three years now. So don't get too disheartened. You may still have options.

I also wanted to add that we completely regret not starting off with Remicade. We spent a good two years putzing around with other meds which all turned out to not be strong enough and it caused a delay in puberty for my son, of which, he still hasn't made up the difference. With your son being 13, I think you really have to consider which med will get him into remission the quickest so that he can "enjoy" a full and normal puberty period.

Good luck at the appointment tomorrow!
 
Mehita said:
If it's any consolation, my son had an active abscess and fistula when he got his first Remicade dose. He was started on IV antibiotics that same day to help with the abscess and fistula (Zosyn and Clyndamycin). Within two weeks, everything was cleared up and he's been in remission ever since - three years now. So don't get too disheartened. You may still have options.

I also wanted to add that we completely regret not starting off with Remicade. We spent a good two years putzing around with other meds which all turned out to not be strong enough and it caused a delay in puberty for my son, of which, he still hasn't made up the difference. With your son being 13, I think you really have to consider which med will get him into remission the quickest so that he can "enjoy" a full and normal puberty period.

Good luck at the appointment tomorrow!
Click to expand...

Thank you for sharing your experience. And, we did get great news. It seems the abscess opened up and drained on its own. The surgeon indicated he sees no reason we can't begin treatment. So, we are waiting on a call from the dr to confirm and schedule his treatment. Everyone's reassurance has helped us immensely. We have been questioning ourselves as to whether or not we are doing right by Tyler, going the Remicade route. Thank you all again, so very much. I will keep you posted.
 
Do ask about checking his immunity levels. Prior to having this worry with my son, I wasn't aware that not everyone who receives the usual vaccines builds necessary antibodies. Some people require a 'booster'. The reason antibody levels are not routinely checked is the protection that comes from the 'herd', ie if everyone else around is protected and unable to catch 'measles', then it won't be passed on to you... so, generally, even those with low immune/antibodies are safe. The extra concern with our kids is that, once on an immune suppressant/biologic, if they are the rare person who catches it, the illness would likely be more serious.

It's such a simple test - simple blood test - I'm not sure why it's not routine for anyone who will be taking these meds. And, if it shows he's low, he will still be able to have a booster vaccine before starting remi.
 
The issue with testing for immunity is delaying treatment and the disease getting worse
You can't be on pred and receive booster immunization since this makes them less effective and even if you get immunization as a booster you need to wait I think something like three months before starting biologics
We did not check for immunity
Since if your child does not have an immunodeficiency the risk of not building antibodies to normal immunizations is extremely rare

Good luck with remicade
 
Thanks MLP! I knew you had to wait a bit to start treatment but I didn't realize it was as long as three months! I thought it was only a week or so.
 
It's definitely months - we checked my daughter's titers when she was diagnosed with juvenile arthritis. She needed a chicken pox shot and we had to wait months after that before we could even consider biologics.

With a kiddo who is already very sick and developing abscesses and fistulae, it's probably better to just start Remicade.
 
Welcome Tysdad, we're another Remicade family. My son was dx'd at age 8, started on prednisone, then methotrexate shots, then Remicade and oral methotrexate. Remicade has been the best treatment for my son thus far. It's been about 1.5 years he's been on it now.

I second Tess's recommendation about checking the immunity of measles, chicken pox, etc. I was also under the assumption that if you've been immunized, then you're immune. Not so. My son is immune to measles, but not chicken pox. Unfortunately, I did not ask to have this checked until after we started remicade, so now we are just on high alert in case he comes into contact with it. Although, waiting on getting Remicade going might not be what is best for your son. Definitely discuss it with your GI.

Treatment decisions are tough, but from our experience Remicade has worked great. I hope your son has good success with it too!
 
Well, Tyler had his first treatment last Wednesday. He spiked a slight fever, but the nurse was with us the entire time and kept everything under control. His energy levels have increased, but his appetite is still not quite what I'd hoped for. He felt some tightness in his chest and muscle soreness a day or so following the procedure, which is not an uncommon reaction to Remicade. It subsided and other than some nausea and stomach discomfort, which is his norm, all has been good.
 
Hello everyone. Tyler's first treatment went relatively well. He spiked a slight fever, but the nurse was with us the entire time and kept things under control. He experienced some tightness in his chest and muscle soreness over the following two days, pretty common reactions to Remicade. His appetite is still not quite where I'd hoped it would be, but he does have more energy than before. After a week, he has no more rectal pain, hopefully a sign the fistula are healing; however, he still gets stomach pain an nausea from time to time. His second treatment is scheduled for a week from now. He is continuing Flagyl and iron support, for the time being.

Crohnskidmom and Maya142, thank you for the advice. His immunity to pox and measles were checked and he is good.
 
I am sorry to hear that you've joined the ranks with a newly diagnosed child. It is going to be a long journey. My son was diagnosed with CD when he was 8 years old (2010) -- he had 3 perianal fissures and a smattering of minor inflammation throughout his large intestine and a bit more in the ileum. He went on prednisone for 6 weeks followed by 2 years of antibiobics (flagyl, cipro). His Dr (a globally known researcher in IBD) told us it was time to put him on Remicade when he was 10 -- the fistulas were dry and the window for catching up on lost growth was closing and this was the recommended option. In pediatric IBD they start with the 'big guns' (biologics) because they have a higher rate of success re remission than the step-up approach. It was an agonizing decision to make but the more you learn about the options, the more you realize that there are NO 'good' options re safety profiles. (Always ask the Dr about how the safety profiles compare when discussing various options.) To make a long story short, he has been on Remicade for 5 years(!). He took a low dose of methotrexate with it (2.5mg once a week) up until 5 months ago...he has had antibody tests and his blood levels are good (relative to being on a biologic) so the Dr. decided he could stop taking the Methotrexate (we were happy about that because even at low doses the side effects apply).

He is now in clinical remission. A few months after starting the infusions he said that he had all but forgotten he has CD. This is the sort of stuff you need to focus on...quality of life. My husband and I live with a constant state of low-level anxiety re the disease and the treatment but we take it one day at a time and focus on his quality of life.

All of the above said, I need to add that I have CD (stricturizing CD in the ileum) and was on mild treatment (Pentasa) before having a resection 7 years ago. It's back and I have another stricture and have started on more serious meds for the first time...Entocort and Methotrexate. Let me tell you...the meds are NOT fun! Adults have to "step-up" to the big guns like Remicade (insurers demand it). I honestly don't care if the Entocort and Methotrexate work...I will not continue on them when finished with this first course...but I suspect my GI wants to step me up to Remicade, in any case. I take the Entocort everyday and do an injection of Methotrexate on Saturday so I will be ok for work Monday morning. (Intuitively, I would give my son his Methotrexate pill Saturday nights and am glad I did!) I feel more sick on Methotrexate and Entocort than I did without any meds -- the side effects are unpleasant. The only side effect my son has had to deal with while on Remicade are migraine-like headaches the day after the infusion BUT this has been pretty much eliminated with an extra bag of fluid during the infusion. (Aside: his infusion of Remicade cannot be given in less than 2 hours -- ask your Dr about the speed of the infusion, it may make a difference.) The extra bag of fluid was recommended by the infusion clinic nurse after she heard about the headaches -- they are good sources of info, they see a lot!


P.S. I saw someone else in this thread mention that they may use Imuran in conjunction with Remicade -- if I recall correctly, that duo when used together, carries a higher risk for some of the more serious side effects. I'd ask the Dr about that...there is data on the different combos and what that may mean re side effects.
 
Tysdad, we are also newbies to this--my 12 y.o. daughter was dx'd April 2016 & they have just recently recommended we start Remicade. I was very nervous about that till I discovered this forum & read these posts. I am definitely more comfortable with that option, especially seeing how it has helped children gain weight & achieve remission (PTL!!)
Our GI has never mentioned feeding tubes or anything like that (?) My girl is a little over 4' tall & weighs 58.4 lbs on our last visit. My husband & I are small people but she is the 2nd smallest in her class at school. I am planning on asking about this on our next visit.
I have learned so much in the last couple of days reading this forum. I want to say a huge thank you to all who comment & contribute. You may not realize that you are a big blessing to those of us just starting out. :)
 
I'm guessing he's had a followup dose now? It does take awhile, but I hope things are already improving for your son.

Just jumping in with another account of Remicade success. We started with 6mp at first (age 9) and shouldn't have bothered, my son got a 2nd abscess and had IV antibiotics for 8 weeks before going to Remicade. It worked great for him til he built antibodies and we switched to Humira. You may want to discuss with his doctor about adding methotrexate in combo. It's especially important to control the Crohns in the puberty years so he won't lose out on potential growth. We check in with an endocrinologist to do a hand-bone-age-xray once/year to monitor his progress.
 

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