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My 12 year-old has CD. GI informed us that antibodies for Remicade are now present and the drug is no longer effective, which explains why symptoms have worsened. GI wants us to start Humira immediately, even though same doc told us previously that we needed to do Remicade since there wasn't enough history with Humira in pediatric GI patients.

I've done a search on Humira on this site and it sounds like most people have had a positive experience, at least for as long as the drug was effective, and that the main cancer to be aware of is skin. Seems like highest actual risk is one of infection. Given that, we think we should go ahead. However, my child has developed a needle phobia from the Remicade treatments and also is so burned out on everything that is terrified of the stinging during injection.

We've also considered jumping into SCD for 30 days before starting Humira as a last-ditch effort.

Any suggestions would be greatly appreciated!

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If you can, I think trying the diet thing makes sense, although I understand it can be quite tough to adhere to long term. The reason is the same as you posted, your son is burned out on all this intervention stuff, and if he is going to have to deal with the shots at some point, not much harm in giving him a bit of a rest. The downside though, is that I doubt a month would be long enough to turn around the disease. I wonder if something like the Paleo Diet might be better, since it seems easier to follow and people here who have adopted it seem to feel it improves their function. It also avoids carbs, but it seems more intuitive than the SCD.

Hope it give some relief for your son.

Humira may not cause him stinging during injection, and letting the syringe fully warm to room temperature and icing the injection site do help. I also found that injecting into the abdomen was much less likely to cause stinging than into the thigh. I only injected into the thigh twice.

I am presuming since he was on Remicade that he had tried antibiotics, mesalamine, and methotrexate.

Jan Smiler
Jan Dollar
Since I've tried both, I think I can chime in on this one. Same deal with the remicade. Had the infusion reaction and that was that. Anyway I started the SCD while i was still getting remicade infusions and did really really well on it. The best thing that you as a parent can do (my mom did for me) was went on the diet with me. I felt less alone because it is very very difficult to adhere to in the beginning. I went through crazy carbohydrate withdrawal that messed with my whole body big time. Holy mood swings! Perks? My mom lost a ton of weight on the diet and did really well. I maintained my weight which was even cooler!

Anyway, after college I moved away from home for a new job and with the stress of everything, became very sick agin. That was when I started Humira. It is the most painful shot. I would dread it every other week too the point that I would put it off days and days. One method to try is icing the area before hand. Well you can imagine I eventually stopped doing them all together. I think the pain of the shot was the last straw for me on top of the pain from UC. Enter: j pouch surgery. Seriously, wish I had done it years ago. Have you considered this option for your child?
L
Lynne, My daughter with UC has a very severe case. She's on the paleo diet, similar to but simpler than the SCD, with some GAPS diet protocols thrown in. It's helping her - how much and for how long remains to be seen. That said, I know MANY kids it has put into remission. There are support groups for children of IBD kids, including an alternative treatments group. If you want to join, just PM me.
K
I will PM you, kill colitis. Thanks for the offer.

Very tough decision to make and the clock is ticking. . . . Sed rate 40, but child is hanging in there remarkably well. . . Still going to school, playing sports, eating. . . Pediatric GI is completely against the idea of trying to manage through diet; my husband is willing to give Paleo/SCD a try, but wants meds for child at same time. I'be been Paleo for awhile and it clearly helps but isn't enough to curb my pouchitis. I don't think the two situations are comparable, though.

If we proceed with Humira, I now know to ask for it in the thigh, for it to be iced beforehand, and for shot to be room temp.

Am grateful for the suggestions! It's so nice to be able to ask people who can empathize and who have knowledge.
Lynne2
No, NOT in the thigh, but in the abdomen. The thigh was the worst!

By the way, after the first injection, you'll be doing it at home. So at least you don't have to screw around with all those clinic visits for infusions. You can control things in your own home environment, and he could learn to do his own shots.

Another thing to think about is the type of syringe. Personally, I preferred the standard syringe where you insert the needle and push down the plunger. This is because I got to control how fast the drug went in. If it started stinging, I could stop, wait a few seconds, then resume more slowly. With the pen, once you push the button, the needle goes in and it starts injecting until all the medicine is in. You cannot stop it without withdrawing the needle, then the medicine gets wasted.

Some people just cannot force themselves to put that needle in, but after the first few times, not bad at all. Like throwing a dart.

Anyway, that is just my experience. Being a nurse, I probably had an easier time with it. Didn't even have a trial run in the office.

Jan Smiler
Jan Dollar
Yikes! I wrote that backward! Thanks for the correction, Jan, because now I'll be sure to say it the right way if/when we're at the appt.

The injection nurse said she didn't know whether the shot would be the manual push-thru kind or the click auto kind, but that the pharmacy would tell us. I'll request the self-monitor type, if we get a choice. Your tips are so useful.

She also suggested we watch a video on the drug website to see how injections were done. If anyone is interested in Humira, you might also want to check it out: www.humira.com
Lynne2
Lynn -

You may want to check out the Dragonpack IBD Parents Support Board. (www.dragonpack.com/ibdsupport/parents) There are several parents of pre-teens dealing with the same issues. Enteral formula is another approach that has been very successful for children with crohn's. It is widely used in other countries as a first line treatment - not so in the U.S. though.

Best of luck.
BG
Well. . . We decided to hold off on the Humira and are jumping into SCD. I am excited, nervous, hopeful and rather overwhelmed by the rigidity of it. The downside is that the only way i was able to convince the GI and my spouse to do SCD before Humira was by agreeing to do a pulsing dose of prednisone to provide immediate relief for our chld. But that's temporary and I'm hoping that SCD will provide a long-term solution or, at least, a significant reduction in what meds are needed long-term.

If I have anything useful to post about our experience, I will do so. It doesn't really fit under j-pouch since I, not my child, am the one with the pouch, but I'll see if I can add anything helpful to the board.

If anyone has any suggestions about SCD, I'd love to hear them. There's a lot on the Internet, mostly positive.


Thanks again for your support and knowledge!
Lynne2
My suggestions are cut out dairy including yogurt for the first few weeks. You won't know if the diet will work or not if you don't cut it out - many IBDers can't tolerate it and so the diet doesn't work. When (hopefully) he's healing, you can add it slowly and see. Make sure he's eating a lot of fat, look at the GAPS diet and add healing foods like broths and later fermented foods (as tolerated). You want to try to heal the gut but it is a process. Good luck!! I hope it works for him - there's a lot of support out there. Either way you'll have given it a good shot.
K
Hi, I also have a 12 yr old child who has used both Remicade and Humira. She developed a septic hip joint after just 3 rounds of Remicade. The Humira worked well for a full year...injections every two weeks. Used prilocane/ lidocaine 2.5% prior to injections but it just numbed the pain from the needle going in....not the Humira itself. Taking it from fridge an hour prior helped some as well as injecting it slowly. She advanced to weekly doses, then after a 15 day stay in hospital on IV prednisone we decided on surgery. Had to go out of state for premier surgeon. The diets didn't help much, just sticking to low residue foods was best. We tried Imuran....it takes almost 3 months before you know if it's working. In her case she had to stop it as her hepa toxicity levels were affected. It's a tough road to go down, trying out meds and then having hope the next will work. I'm so sorry our kids have this. Our daughter is right now recovering from the third and last surgery....had her colon out in Oct, her rectum out and J pouch formed in Jan, and a week ago the takedown of the ostomy. The recovery is difficult, lots of itching and diarrhea. Post op is tomorrow. Been reading lots of forums tonight and it seems even with UC gone there are many problems to look out for.
C
I'm so very sorry to hear about your daughter, CedarsFam. It must be absolutely horrible to watch her go through all of that. She is lucky to have such a devoted parent who is doing everything possible to promote her health. I hope things turn around for her soon.

Sending best wishes and positive thoughts your way.
Lynne2
Last edited by Lynne2
Thank you for sharing the diet and support tips. Pecanbread has been very helpful and a great source of info during these early weeks. I also draw ideas from GAPS and Paleo. Too soon to tell if it's SCD or prednisone that's working, but he's looking and feeling better already. The real test will be to see what happens when he gets off the prednisone. His doctor is predicting that he will flare again soon, and i hope to prove him wrong! Either way, I firmly believe that this style of eating is nurturing the health of all of us in the family and, as killcolitis noted, we will know we tried.

I am hopeful, though! I think its going to help keep him In remission or, at least, reduce the severity of the drugs he needs.

Thank up everyone for the support!
Lynne2

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