12 year old son with severe Crohn's - intro and questions

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Hi, everyone!

I am new here and am looking to give and get support for dealing with children who have Crohn's disease.

My name is Jess, and my 12 year old son Michael has had Crohn's for the past 4 years. His paternal grandmother was diagnosed with Crohn's back when she was around 19 years old - she nearly died three times from perforated bowels and the resulting infections, but then about 40 years ago it just went away. No symptoms or problems in 40 years, no meds, and colonoscopies show no active disease. We're still not sure if she really had that and something put here into really long-term remission or if it was something else. We are just hoping that Mikey's disease goes away, in similar fashion!

He was diagnosed when he was 8, and it was a big surprise. He was never a puker and was more likely to be constipated than have diarrhea. He was referred to the surgery department at Children's because he had an infected lump on his bottom and the doctor thought it needed to be lanced. The surgeon took one look at it and called the gastroenterologist, and he told us right off that it was a fistula nearing the durface, not an infected lump starting from the outside (the skin side)!

After getting his labs under control with prednisone, a laughable attempt at Pentasa (kinda HUGE for an 8 year old to swallow!), and an unsuccessful trial of
Imuran, he was put on Remicade for a couple of years At first, he was also on methotrexate, but that caused horrible bone pain and flu0like symptoms. The Remicade worked wonders until he developed antibodies to it and it stopped working. Then he spent three months in and out of the hospital with a horribly infected fistula and a torn anus due to the seton drain going horribly awry (his anal area was apparently so messed up from the infection that the drain cut through it and he ended up being incontinent for a month while it healed).

About 4 months ago, he was switched to Humira. Although it hurts like hell, he had a good response at first: his weight went up (it had made almost a hairpin turn), his labs improved a little, and he had fewer symptoms. Unfortunately, even though we are giving it every 10 days he is having worsening symptoms. He gets belly pain at least once a day and has diarrhea frequently. I'm calling his doctor tomorrow, but I'm worried. What can come next? Humira is one of the "big guns" - what else can be done?

So my questions are:
1. Has anyone else had a child who has had a similar path? What might the next option?
2. Has anyone had success putting their child on the specific carbohydrate diet? How hard is it to make foods that kids will eat?

A little bit about me: I actually have a degree in molecular and cell biology, and last year I moved from working in microbiology to working in Immunology. I currently study lupus and rheumatoid arthritis, but I hope to be able to get funding for Crohn's some time in the near future. So, if anyone has any science-based questions I would be happy to answer them if I can :)

If you have read this far, thank you!
 
Hi and welcome to the group. I am so sorry your son has hit quite the rough patch. I don't have experience with Humira but can they increase doses, shorten interval, add Methotrexate?

I am sure others with experience with Humira will be along shortly.

Good luck and keep us posted.
 
Hi firstly welcome to our forum. Sorry you had to find is but glad you did. We have had some very similar experiences with the medications either not working for my daughter or her being allergic to them. Two things I am going to suggest looking into which you can find a lot of information on if you go to the first page of the forum and to the treatment section. Take a look into Enteral Nutrition (EN) for the induction of remission and look into low dose naltrexone (LDN). For us LDN has been our miracle.
 
Welcome to the forum. It seems your little one has been through so much!

My son was dx'ed at 15 and went straight on Remicade, which worked miracles right away but after the loading doses we had to tweak the schedule, up the dose and eventually add MTX(pill form).

We have an SCD/Paleo section(<--click here). There are a couple of kids utilizing SCD so you may want to browse through those threads for info or recipes.

You could add an immunosuppressive to the Humira like MTX, 6MP or Imuran and there is another biologic that you could try Cimzia. A couple of members on the forum are trying Stelara, still a biologic but has a different mechanism instead of tnf a blocker.

I do hope your son finds relief soon!!
 
Welcome :welcome:
Sorry to hear your son is still struggling. We don't have any experience with Humira but there are plenty here who have. I'm sure they will be along shortly.
My son will be 14 next week and was dx'd at 10 and has been on LDN for the last year and for us it has worked wonders.
You have already gotten some great advice. There is a ton of information here sometimes so much it can be overwhelming. You have found a great place to come to bounce off thoughts and get support, or vent or whatever you need.
 
Hi Jess,

Welcome to the forum. I'm sorry your son and family have been through so much due to his crohns! :(

Where is your son's crohns located? I'd also suggest looking at enteral nutrition. When used exclusively (ie formula only, no other food) for a period of time (usually 6-8 weeks), it has comparable success rates at inducing remission in children as do steroids. It can be used with humira. This was my son's treatment and it put him into clinical remission right away and it was his only maintenance 'treatment' (as a supplement, so lower dose of EN plus a regular diet) for almost two years. I believe it is more successful when inflammation is located in the small intestine, however, in my son's case, it reduced/eliminated inflammation his duodenum and colon but was not able to eliminate all inflammation in his small intestine. It also provides necessary nutrition and has no side effects, so really little downside to trying. Going 'exclusive' is really the biggest challenge, ie no food. :(

This thread provides more info on Kids and EN:
http://www.crohnsforum.com/showthread.php?t=36345

LDN is also an option and I wish I'd had the opportunity to have my son try this before moving to remicade. Many GIs do consider it 'experimental', however, and without sufficient data on it's success so are hesitant to use it. But, the drug itself, is also low risk and a number of members here have found success with it.

:)
 
Um yeah duh! That's what I get for responding before my morning coffee and while trying to get the kids off. I totally forgot about EEN. We did that when my daughter wasn't responding all the way to Remicade. Rather than another course of Prednisone or adding another drug we did 8 weeks of EEN and it was just the ticket. Been in remission ever since and with just the Remicade. Mtx was added for other issues.
 
Hi and welcome. Sorry to hear your son is getting worse again after being through so much. I don't have any advice on meds - my son has failed Aza and is currently on 6mp - haven't tried anything else. We also have been through a fistula/abscess last year - he had surgery to remove the diseased tissue and then 2 months of packing it with silver dressings. Thankfully he has been okay since then although his fistula still drains every day it doesn't bother him. Good luck getting a medication that helps again.
 
Welcome and so sorry to hear about your son. We have a similar story with the fistula/abscess and treatments. My son was not quite over the hump with Humira until we added 6mp to the mix. We are a year in from that and he's doing great. Cimzia is getting approved for kids, and there's some others coming on the market. LDN might be an option, though most pediatric docs aren't on board yet. We haven't tried any diet beyond some shake supplements that he hated. Hope you get it worked out soon.
 
Jess- Just a thought. My daughter was taking 25mg methotrexate (+Humira) and developed awful side effects - headache, nausea, dizziness. She couldn't get out of bed for a day and a half after taking it. She stopped taking it and ended up in a flare that has lasted a year.
Her GI convinced her to take a lower dose 12.5mg (+Remicade) and she's doing great now. NO side effects.
Perhaps a lower dose could help your son? My daughter absolutely needs it - without it, Humira and Remicade did virtually nothing.
 
Hi and welcome,
I'm sorry I can't answer you questions very well but my Grace is also on LDN. It's to soon to say for sure if it's working but I see small changes for the better. She's no where near perfect but I feel she's heading there. She'll be scoped next week and hope to hear good news.

Hang in there.:hug:
 
Hugs
DS had a similar path no fistula though .
He does have rectal involvement as well as other areas.
He was dx at age 7 ( also constipation based)
He failed remicade due to reactions.
He is now on humira.
He just started in April.
We are still working out the bugs so to speak.

I agree with trying to add Mtx or 6-mp

Wish you best of luck
 
Thanks for the support. Unfortunately, we have had him on methotrexate in the past and had to take him off it because he started getting severe bone pain a day or two after each shot :stinks:

Hi and welcome to the group. I am so sorry your son has hit quite the rough patch. I don't have experience with Humira but can they increase doses, shorten interval, add Methotrexate?

I am sure others with experience with Humira will be along shortly.

Good luck and keep us posted.
 
Hi firstly welcome to our forum. Sorry you had to find is but glad you did. We have had some very similar experiences with the medications either not working for my daughter or her being allergic to them. Two things I am going to suggest looking into which you can find a lot of information on if you go to the first page of the forum and to the treatment section. Take a look into Enteral Nutrition (EN) for the induction of remission and look into low dose naltrexone (LDN). For us LDN has been our miracle.

Thanks, I'll certainly bring those up with his doctor!
 
Thanks, those are great suggestions! The thing that was worst for him has been peri-anal fistulas, but he also has documented inflammation at the cecum. Now his pain is mostly located directly below his navel, so I wouldn't be surprised if that indicates more small intestine involvement. I will certainly ask his GI about your ideas, though :)

Hi Jess,

Welcome to the forum. I'm sorry your son and family have been through so much due to his crohns! :(

Where is your son's crohns located? I'd also suggest looking at enteral nutrition. When used exclusively (ie formula only, no other food) for a period of time (usually 6-8 weeks), it has comparable success rates at inducing remission in children as do steroids. It can be used with humira. This was my son's treatment and it put him into clinical remission right away and it was his only maintenance 'treatment' (as a supplement, so lower dose of EN plus a regular diet) for almost two years. I believe it is more successful when inflammation is located in the small intestine, however, in my son's case, it reduced/eliminated inflammation his duodenum and colon but was not able to eliminate all inflammation in his small intestine. It also provides necessary nutrition and has no side effects, so really little downside to trying. Going 'exclusive' is really the biggest challenge, ie no food. :(

This thread provides more info on Kids and EN:
http://www.crohnsforum.com/showthread.php?t=36345

LDN is also an option and I wish I'd had the opportunity to have my son try this before moving to remicade. Many GIs do consider it 'experimental', however, and without sufficient data on it's success so are hesitant to use it. But, the drug itself, is also low risk and a number of members here have found success with it.

:)
 
I'm so sorry your son has also had to deal with fistulas - Crohn's inflammation is bad enough without having to deal with infections, too! We didn't have to do the packing (I cannot imagine how awful that must have been, I had to pack my c-section incision with it, but that was larger and more open than a fistula!). My son had a seton drain, which we told him was the most "bad-ass piercing" :)rof:

Hi and welcome. Sorry to hear your son is getting worse again after being through so much. I don't have any advice on meds - my son has failed Aza and is currently on 6mp - haven't tried anything else. We also have been through a fistula/abscess last year - he had surgery to remove the diseased tissue and then 2 months of packing it with silver dressings. Thankfully he has been okay since then although his fistula still drains every day it doesn't bother him. Good luck getting a medication that helps again.
 
Unfortunately, they tried lowering the dose, etc., and it didn't help. It's a shame that he can't take it - apparently, it helps prevent them developing antibodies to the biologics, so they can be on them longer.

Jess- Just a thought. My daughter was taking 25mg methotrexate (+Humira) and developed awful side effects - headache, nausea, dizziness. She couldn't get out of bed for a day and a half after taking it. She stopped taking it and ended up in a flare that has lasted a year.
Her GI convinced her to take a lower dose 12.5mg (+Remicade) and she's doing great now. NO side effects.
Perhaps a lower dose could help your son? My daughter absolutely needs it - without it, Humira and Remicade did virtually nothing.
 
Wow, your son is the only other kid I've heard of who had more constipation than diarrhea at first - his general ped was shocked when he was diagnosed because he wasn't a constant puker or always having runny stools. I think more doctors need to keep it in the back of their minds that there isn't just one typical presentation! Any kid who eats a good diet should be checked out if constipated all the time!
 
Stick around there are lots of kids on here who had constipation - most are told its ibs + crohns since crohn's isn't constipation based ( dont get me started)
 
My daughter also has issues with constipation (she needs Miralax every evening) and her ped too kept saying she had IBS and in fact is still convinced that she has IBS.
 
My daughter also has severe constipation, however she hasn't been diagnosed with crohn's. as MLP said she has been diagnosed with IBS and chronic constipation and dysmotility! :ymad:

You've had some great advice on here already. Really hope things start to get better very soon . (((hugs))) xxx
 
Sorry your son has had such a hard time!

My son also trends towards constipation and takes miralax. We did Remicade until developing antibodies, then did methotrexate alone for a year. We have recently added Humira to the mix and are keeping our fingers crossed! I am wondering, when your son took methotrexate, did he take folic acid supplements? It really helps with the sickness caused by methotrexate. We also take Zofran right before the shot. Since my son developed antibodies pretty quick to remicade, it's just better to stick with the methotrexate. We want to give the Humira it's best chance to work.
 
Hi Jess:) My son is on Humira/weekly. Does Michael get any relatively symptom free days from his injection? I'm sorry he's had such a rough go!
 
Sorry your son has had such a hard time!

My son also trends towards constipation and takes miralax. We did Remicade until developing antibodies, then did methotrexate alone for a year. We have recently added Humira to the mix and are keeping our fingers crossed! I am wondering, when your son took methotrexate, did he take folic acid supplements? It really helps with the sickness caused by methotrexate. We also take Zofran right before the shot. Since my son developed antibodies pretty quick to remicade, it's just better to stick with the methotrexate. We want to give the Humira it's best chance to work.

Yes, he had the folic acid supplementation, too. It took us a while to figure out that the bone pain he was developing came exactly 2 days after methotrexate shots :stinks:
 
Hi Jess:) My son is on Humira/weekly. Does Michael get any relatively symptom free days from his injection? I'm sorry he's had such a rough go!

Ugh, it's awful giving them those shots, isn't it? Especially since they are now having to come more often :stinks: It's interesting, but when he first started Humira and got it every 14 days he was having breakthrough symptoms a few days before the next shot (he wasn't at 100% in the days following it, but he did feel better) - that's why we had to move it to every 10 days. Now, however (just a few months later), I don't necessarily see any improvement in the days following his shots. I am pretty sure that he might have developed antibodies to it really quickly, which is odd since it is less likely to cause that to happen since it isn't mouse-based like Remicade.
 
Actually it is less likely to cause anaphylaxis since the protein is more human like
But the antibody risk is higher for anyone who reacted to remicade since their body has proven it knows how so to speak
There is a paper on it
I will post later when I am not on my phone
 
Hi there and welcome to the community. I'm so sorry to hear about your son's struggles. I can't imagine how tough that must be. Unfortunately, early onset Crohn's like your son has can sometime be tougher to treat. I think you're right to be looking at diet but that is only part of it. I feel it's imperative to take the shotgun approach. For example:

- Western Medicine - Continue with what the doctors recommend and you're comfortable with him being on.
- Dietary changes - Enteral/elemental nutrition, [wiki]paleo diet[/wiki], and/or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot and we now have a juicing subforum located here.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help.
- Alternative treatments - I'm a big fan of Low Dose Naltrexone. Two studies in adults and one in children have had great results (see the stuck thread when following that link) and there are very few side effects. It's also not very expensive.
- Stress reduction. Do whatever it takes to reduce his stress levels if he is stressed.
- Exercise if he's able - a gentle yoga is a good one :)
- Vitamins and minerals - find out which he's deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, and magnesium as well as a host of others. But those three first ones should definitely be checked. Do not blindly supplement vitamin D and B12, treat these as medications and get your levels tested first. Although the blood test for magnesium is somewhat useless and I strongly suggest he eats foods high in magnesium and discuss supplementation of it with your doctor.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas. I'm personally a big fan of tumeric and suggest utilizing it if his doctor is ok with it.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.
- I have a working theory that nickel and possibly other metals cause some forms of Crohn's disease under very specific circumstances. Has he ever worn jewelry with nickel in it and had a reaction? It's actually part of the reason I believe the Specific Carbohydrate and Paleo diet works for some as nickel-rich food items include nuts, beans, peas, grains, hydrogenated oils and chocolate.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise his disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.

All my best to you.
 
Hi, and welcome from me too.
I wanted to add that my son also had severe constipation before his diagnoises. I spent a year taking him to a "toilet training" clinic as that is what my GP thought would cure him! he was put onto high doses of Movical, which was no use at all. I was also told to up his fibre as they said he wasn't getting enough, which was causing the constipation. Yeah right, that just made things even worse, my poor son was in agony.
he also had a fistula, which we hadn't realised at the time, which was obviously making it even more painful to go to the toilet.

I smiled at your Pentasa quote, I can also remember being horrified at the size of them, and for months I ended up crushing them and adding them to yogurt as it was the only way my son could take them. I know you aren't meant to crush them, but there was no other way. He now manages to take tablets with no problem at all.

I hope that you manage to get the help soon that your son needs. My son was also 8 when he was diagnoised, and is now 12.
 
One thing I found out-
proctitis which is not common with crohn's
can cause constipation, stomach aches, tenesmus, rectal pain etc...
the outside of the rectum ( perianal area is usually a crohns thing - but the inside (rectum itself) tends to be spare)
except in my kid
 

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