Update: 14yo natural or humira

[emmac13]

My son had the MRE on Friday. His small intestine had mild inflammation along with a few lymph nodes all other organs were fine. Today he had his EGD/Colonoscopy and all was good except small intestine had inflammation. So the doctor said it was Crohn's as suspected. He needs a booster for Chicken Pox as that was low. She said since his symptoms were mild to get the booster now. In 4-5 weeks he will start treatment. She recommended remicade for the first year or two. She said he could then switch to humira for convenience. She did mention steroids with another med. But she said remicade would work faster at this critical development time in his life. We have already started to change our cooking style and diet for crohn's. I like this doctor and trust her. But for those of you who have been through this, how does this plan for treatment sound? Thoughts or experiences? Thank you.

 

[my little penguin]

biologics have the greatest success early on and reduce the risk of surgery the most in the first 3 months.
Remicade has the highest success rate

Most do not stop it however unless it stops working OR you have a reaction to it.

see the ped research section
http://www.crohnsforum.com/showthread.php?t=43002

 

[Jmrogers4]

Sounds like a solid plan. We hit that stage with my son being 14 and lack of growth etc. Our window of time for growth was shrinking so needed to do something more. I wish it was given as an option at the beginning who knows maybe we wouldn't all be struggling with growth

 

[Maya142]

Just out of curiosity, does anyone know what it means to have lymph nodes show on a scan? My daughter had a few that showed on a ultrasound.

emmac14 - My daughter has been on Remicade and Humira and she definitely preferred Remicade. Most kiddos do since the Humira shots really burn. She did get used to them but she still says she wishes could be on Remicade even though the infusion is a hassle. That's another consideration doctors sometimes forget to address, I think.

 

[Tesscorm]

Maya - Stephen had lymph nodes noted on at least one u/s in the past. I can't remember what it was but when I questioned it, I do remember it wasn't something I needed to worry abt??? Sorry I can't b more specific. Not home now but will check his scan later and tell u exactly what it said.

 

[Mehita]

I can't recall from your first thread if growth is an issue, but I do want to encourage you to keep that in mind as you make your decision on how to proceed. Generally speaking, growth will stall or even stop if the small intestine is unhappy and inflamed, even mildly. At 14, with puberty starting, it's a pretty critical time from growth and you don't get a second chance.

That being said, my son started Remicade in November and loves it. He goes in every eight weeks for a three hour infusion and he much prefers this over the daily meds. He's happy and growing, thanks to Remicade.

 

[Tesscorm]

Maya - S's u/s said 'prominent right lower quadrant mesenteric lymph nodes, likely reactive' and an MRE noted 'slightly enlarged lymph nodes in the mesentery, less than 1 cm'. Hopefully, these comments are similar to those of your daughter's - unfortunately, I just don't remember what I was told, only that I was told it wasn't worrisome.

emmac - As was said above, it does sound like a good plan and the fact that you like and trust this doctor will only help in alleviating any concerns you have. Good luck!! :ghug:

 

[emmac13]

The doc said lymph nodes swell because of inflammation. She said it is where the white blood cells meet to get their marching orders so to speak. And it was normal for the situation.

As far as growth, my son(Eddie) 14years 2months and is 5'3" but his 10year6month old brother(Luke) is 5'. What are my options on the growth side? Should I talk to an endro? I mentioned to the doctor about his growth being a concern. But I think she is focused at the task at hand. Which is understandable. @jmrogers4 what do you recommend? Or have experienced? The growth issue is a big deal. People make comments when my two sons are together. Like, "What happened to you?" to Eddie.

Thank you to all who have commented.

 

[CrohnsKidMom]

Emmac, My son tried Imuran and is now on Methotrexate injections, he has not been on any of the biologics. I remember our GI saying that some docs use a "top down" approach, and start with the biologics. So every GI is different. If you trust her, then I would think that's what's most important. Our GI generally starts with Imuran and works up to the biologics, if need be, and depending on the case of course. Just thought I'd pass that tidbit of info along.

 

[crohnsinct]

If there is inflammation present that is probably the culprit to lack of growth. Once you get that inflammation under good control you will most likely see growth. That is what happened with my daughter and Remicade. However, growth was the last thing to start happening so it does take a little bit so be patient. Your doc is probably going top down because she wants to get the inflammation under control fast to maximize on the "growing years" he has left rather than dicker around with other meds that may not get the job done and waste time.

Also top down docs point to studies that say the faster you achieve remission the less likely the patient will need surgery down the line.

Remicade has a very good success rate and like MLP I would wonder why she would suggest leaving it for another biologic...if it ain't broke why fix it? Remi has a limited time it works for everyone and that amount if time is different for each person. We don't plan on leaving it until absolutely necessary.

Good luck!

 

[lbligh]

Top-down vs bottom-up is something we've been thinking about also. Our recently-diagnosed daughter is 13 and should be entering her big period of growth now. We have been unable to taper her Prednisone below 20 mg, and the Pentasa just seems like an expensive placebo. Doctor is pushing 6MP and laughed when we asked about Remicade, saying our daughter isn't that sick, but it sounds as if Emmac13's son's doctor is taking the opposite approach.

I'd be interested in more people's stories about Crohn's treatment during the critical growth times.

 

[emmac13]

The doc mentioned changing to the humira in the future for convenience reasons. For example, going off to college and living on campus.

I do agree that the most important thing is getting inflammation under control. The doctors also talk about the emotional and psychological effects of the disease. I believe one of these emotional stresses is height loss. I can tell my son is wondering why he is not growing. His sister is almost 13yo and 5'6" and his 10yo brother is 5'. Both in 90+ percentile. Eddie is at 25%.

I am just asking so I have all my bases covered. I am sure there is only so much time to grow. Eventually there will not be any options and time will have passed. I don't want to have regrets two years down the road. Or feel I let my child down.

Thank you.

@lbligh just to give you an idea of my sons symptoms. He would get diarrhea at most once a week. Never any blood. He gets fatigued faster at baseball practice. Maybe one weekend out of month he is last/fatigued. The real indicators to us were weight loss and an abscess he got on his rear. Otherwise we had no clue. He eats everything and has an appetite. Usually he would get diarrhea once a month. Even with this diagnosis I feel we were blessed and things could have been worse. But I am happy with the idea of a top down approach. I feel time is also what we are fighting.

 

[Maya142]

Since it's a couple years away, it seems early to worry about it! The reason people are saying not to stop is Remicade is that you build anti-bodies to it, and once you get off it, most often you are off it for good, because the likelihood of having a reaction when you go back on in is high.
As for growth, have you considered having him drink EN for extra calories? My daughter drinks two Peptamen Jr a day for nutrients. Many kids here have grown and gained weight from drinking either Peptamen or something formula.

 

[lbligh]

Emmac13, we're in a somewhat similar situation in that our daughter is not all that sick, compared with the terrible sufferings of many people who participate in this forum. In her case it was fever and weight loss and stomach aches. She is better on the Prednisone and the dubiously effective Pentasa, and we have made dietary changes that have helped a lot, but nothing is quite enough.

I'll be interested to hear what you decide about the Remicade.

 

[Jmrogers4]

The doc said lymph nodes swell because of inflammation. She said it is where the white blood cells meet to get their marching orders so to speak. And it was normal for the situation.

As far as growth, my son(Eddie) 14years 2months and is 5'3" but his 10year6month old brother(Luke) is 5'. What are my options on the growth side? Should I talk to an endro? I mentioned to the doctor about his growth being a concern. But I think she is focused at the task at hand. Which is understandable. @jmrogers4 what do you recommend? Or have experienced? The growth issue is a big deal. People make comments when my two sons are together. Like, "What happened to you?" to Eddie.

Thank you to all who have commented.

This is a big one in our house... Jack's younger brother has passed him in height and me recently and keeps on shooting up. He will be 13 next month. And then there are all his friends that he was at least as tall as if not taller before the CD. He is 5'2" and 103 pounds and was 4'10" 59 (which he got up to 75 after a few months and stayed there for 3 years even when he reached 5' in 8th grade) pounds at diagnosis so 4" in 4 years at a time of generally tremendous growth and some of those years no growth at all.

GI was always saying it will happen he just needs more time until this last summer when he turned 14 and we had no growth at all for about 9 months, he finally said he was worried about growth and referred us to Endo to check if there were not other issues as he thought Jack's labs were not bad enough to warrant no growth. That was the end of November, we also did a FC test at that time which showed inflammation and scheduled MRE for first part of Dec. we were not able to get into Endo until Dec. 31 (there is only one pediatric Endo in town).

We did a bone age scan and he is about 1 1/2 years behind so not horribly behind and was found to possibly have low HGH (one blood test showed it was low but they have to do several throughout the day to confirm) at the same time the tests came back from Endo, we started Remicade (first of January) and his appetite increased and he started gaining weight (he was 5'2" and 90 pounds at the start of Remi). We haven't seen any height growth yet (I'm still hoping). We decided to hold off on the additional tests for Endo as they would involve a whole day of testing and he had already missed a bunch of school in the hopes that it was in fact disease activity that was causing the lack of growth. We had already scheduled a follow up with the Endo for end of April and they were on board to give the Remi a few months to see if that took care of things before doing further testing. So something you may want to consider since most likely E's lack of growth is disease related but give it a time frame, say no growth for 4-6 months - dig deeper see Endo.

The Endo did agree Jack is not as tall as he should be based on his past growth curve as he keeps falling farther down the line. He started in 75-80th percentile before disease and is now in the 10th. (I think).

 

[my little penguin]

Second the peptamen jr and remicade
DS was 70% for weight and 80% for height pre dx
He went down to 25% for both
After remicade/humira and peptamen jr 2-3 a day
He grew 6 .5 inches and gained 34 lbs in a year and half .
He is 10 and 4'8 1/2 " inches so back up to 77% for weight and 70% for height .

 

[emmac13]

We have marked the kids height on the wall over the years. Eddie grew 3.5" over the past 12 months. It is likely best we allow the Remicade to work and hopefully get E into remission. We will also supplement with pediasure. I have a health issue myself that I see an Endo. So on my next visit I will tell him our situation and see what knowledge he has to share. I mentioned Eddie to him before and his slowed growth. Seeing the Endo does not seem like a quick solution. As stated, we have been spending a lot of time at the hospital and testing already.

 

[emmac13]

Met with PCP. She has us meeting with a nutritionist. She said we will reevaluate his growth after 4 months of treatment. She said if needed he will see an endocrinologist. I got his growth charts and plotted them with his past peds doc. He started off 95% at 2,3,4, and 5yo. Then he slowly dropped to 75% at 8yo. Then 25% at 13yo.

 

[Jmrogers4]

Wow, that pretty closely matches Jack. Hope the treatment does wonders and he is soon growing like crazy and looking down on his sister and brother

 

[Mehita]

That growth chart matches us too! In the 95th percentile until age six or so, followed by the decline. DS has been hovering in the 5th percent ever since dx at age 8.

Very interesting...