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Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Using Stelara For Children With Crohn's


 
03-05-2013, 12:59 AM   #1
vtfamily
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Using Stelara For Children With Crohn's

My son (Gus) was dx with Crohn's about six years ago. It has been a long haul, with ups and downs. We took the slow, stair-step approach to his treatment. Starting with the most benign treatments and worked our way up to the scary stuff. You name it, we've tried it. His Crohn's just hasn't responded to much of anything...at least not for very long.

So here we are now, facing Stelara. I only wish we had more "first hand" user information before we needed to begin.

I'll be using this thread to share our experiences, and hope that others will do the same, so that families can move forward with a Stelara decision with confidence.

His first injection was last week. So far, so good. It should be noted, however, that the injection was VERY painful. I know they are using the injection method of Stelara for psoriasis, but I need to find out if infusion is an option when it is being administered to children.
03-05-2013, 01:50 AM   #2
izzi'smom
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Just wanted to pop in and wish you luck! We haven't tried stellara, but my dd and I both did biweekly injections of humira for a few months...icing the area for 10 minutes prior helped,as did injecting super slowly (over a minute). Hth!
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03-05-2013, 10:50 AM   #3
Tesscorm
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So sorry your son has had such a tough time! Lots of hugs and wishes that Stelara works great for him!

Thanks for taking the time to share your story for others - it always helps to know there is someone else who's been there, done that and UNDERSTANDS!! If you haven't found it yet, there are some threads relating to Stelara (in other sections of the forum), I've included a link to a list of threads with Stelara in the title - they may be of interest to you.

http://www.crohnsforum.com/search.php?searchid=1296563

Off hand, I'm not sure if there are any other kids here on Stelara (if there are, I'm sure they'll be jumping in) but, there are LOTS of parents here to offer you support and friendship!

Good luck!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-05-2013, 01:17 PM   #4
Jmrogers4
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Welcome Vtfamily and thank you so much for sharing, as Tesscorm said I can't think of any other kids who currently use Stelara so thank you for sharing your son's journey. Hope it makes him feel wonderful and healthy.
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-05-2013, 02:23 PM   #5
Livilou
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Hello vtFamily! I have a 17 year old daughter (Olivia), who has had CD for over 7 years. We pretty much followed the same pathway as far as meds/treatment goes. In Sept, 2011, Liv was diagnosed with thyroid cancer while using Humira. Of course, the Humira was discontinued so the cancer could be treated, and now the MD's are saying it is too dangerous and risky to restart TNF biologics for fear of cancer recurring. We went to Mt. Sinai Hospital in NYC and met with a GI who is directly involved with drug trials and he recommended that Liv start Stelara. Unfortunately, we are battling with our insurance company (United Healthcare) as they feel it is "not medically necessary" for Liv to use Stelara! We are now submitting a secondary level appeal to try to convince them that she needs this drug. So frustrating!!
I am so happy to have found this thread, as I have been scouring the internet looking for any user info with CD patients. I hope that Stelara is the magic bullet for Gus! I will be following his progress closely! Fingers and toes crossed, prayers and healing thoughts coming your way! Kim xoxo
03-05-2013, 11:11 PM   #6
vtfamily
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Thanks everyone for reaching out.

Stelara is still pretty new for Crohn's and difficult to get because using it for Crohn's is "off label."

We are fortunate to have Kaiser Permanente as our insurance and a doctor who was able to get his administrators to listen and approve the off-label use.

The good news is that my son is already feeling pretty good. He is not feeling "full" as quickly and wants to eat more often. It's just music to my ears!
03-07-2013, 12:25 AM   #7
CarolinAlaska
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I'm so glad to hear that he is feeling better. How often will he get the injection? Are there any trials going on with Stelara for crohn's?
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-07-2013, 12:48 AM   #8
vtfamily
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Carol,

Stelara is currently in stage three trials for Crohn's. The dosing schedule is 0wk, 4wks, 12, wks, 24wks, 36wks, etc... Gus' next dose will be in about two weeks. The injection is so painful, I'm hoping we can find evidence that infusion is equally effective so we can go that route instead. Fingers, toes and shoe laces crossed.

Cheryl
03-23-2013, 01:47 AM   #9
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What a week! Gus has missed most of the third quarter of school due to pain and hospital stays. We finally were caught-up on school work and were hoping he'd be able to attend the last two weeks of the quarter...10 whole days in a row!

HA! Tuesday he had a lot of pain and his GJ site was looking pretty angry. The pain continued into Wednesday morning...so, the GI doc had us return to the hospital.

You know the old joke...man says to the doctor, "it hurts when I do this." And then the doctor replies, "then, don't do that." That's how I feel at the moment. His strictures are causing him pain when he eats. If he doesn't eat, no pain. Simple right?! If we want him to be pain free, all he has to do is not eat at all. Yeah, soooo easy to convince a 12 yr old (almost 13) to go without out food and maintain his usual routine for the next three to six months.

Fortunately, our GI knows this is a lot to ask of a kid. He ordered a new MRE. The good news is that the extensive inflammation Gus had going on in January is in much better shape. The bad news is that the stricture at the terminal ileum is no better AND he has another new stricture forming. Looks like surgery will be our next stop. Most likely the first week of April. My one condition...he HAS to be home for his birthday!!!

2nd dose of Stelara administered while he was in the hospital. Fingers, toes and shoelaces crossed that it will be the remedy will help Gus achieve remission. Injection went a little better this time. The gave it in the arm, instead of the leg.

Home again tonight. Sleeping in his own bed.
03-23-2013, 04:21 AM   #10
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Glad you are home - hope it starts to help soon. I gather you are talking about trying the EN route to help him. You could always tell him about my son - he was 12 when he did the 8 weeks EN via an NG tube. He went to high school with it in - as far as I know people were sympathetic and never teased him. He also managed to play football as well with a rugby helmet to keep the tube safe . We kept doing everything - if we went out I took a cool bag with our "meal" of EN and gave it to him where ever we were.
03-23-2013, 06:15 AM   #11
DustyKat
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Good luck with the Stelara! Fingers, toes and everything else crossed!

Good to hear the inflammation is settling, yay! How much bowel is affected now and will they be able to remove all active areas with the surgery?

Dusty. xxx
03-23-2013, 07:06 AM   #12
Livilou
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Hello vtfamily! So sorry that Gus had such a rough week, I'm glad that he is home and sleeping in his own bed! My daughter had a small bowel resection at age 13 and did very well. Hopefully Gus will feel much better once those nasty strictures are gone, and the Stelara will keep inflammation at bay....hopefully get him to remission (fingers, toes and everything else crossed!) Does your ped GI think that Stelara will help with stricturing disease? I know that sometimes other biologics will begin to heal the mucosa so quickly that the strictues could actually become worse. Hopefully now that Gus has had a second dose, it will kick in soon. The fact that overall inflammation has decreased on the MRE results is great! We are still in the appeal process with our insurance company to approve Stelara....getting closer though. Liv also has some mild narrowing at her resection site so I am hoping the Stelara will help prevent that from getting worse. Actually, my ped GI was discussing loading doses for kids yesterday. Liv is 107 lbs and they are recommending she start with 90mg, as they did in the study. Just curious about your son's dose, is he getting 45mg or 90mg? Thanks, and I will continue to follow Gus's progress. So glad he is feeling better. Kim
03-24-2013, 03:05 AM   #13
vtfamily
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Sascot,
Thanks, we are glad to be home too. Just in time for Spring Break. No school work to worry about!

I think you mean enteral nutrition via the NG tube. Gus does not have an NG tube that goes through the nose into the stomach. He has a GJ-tube located in his belly. The "G" part goes directly into the stomach. The "J" part goes directly into the jejunum part of the ileum (intestines). He as both the G and the J because he has a very tight stricture in the duodenum and the dual tube give us more options. He has had it for over a year and has had a lot of success with it...including being able to attend a special summer camp for kids with Crohn's and UC. We use a pump to push the enteral nutrition (we use EleCare amino acid formula) overnight.

Gus "loves" his G-J tube because everything can go through there...liquid medicines, contrast for MREs, bowel prep solutions. He is sooooo happy he doesn't have to drink any of that stuff any more!

Most recently the PICC line was put in so he could begin TPN feeds. His stricture at the terminal ileum is really causing problems and his gut has needed complete rest. The TPN give 100% nutrition and it completely bypasses the digestive tract, so it is helpful in that way. The real trick is convincing a child not to eat anything!

We too do our best to maintain as normal a schedule/routine as possible. Even with all that has happened in the last three months...we still plan to go skiing next week. Gus can't wait to ski...PICC line, G-J tube and all!

Cheryl
03-24-2013, 03:30 AM   #14
vtfamily
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DustyKat,

It's going to be an interesting surgery. This will be his second bowel resection. The first was three years ago and they took about 35cm. They know they will need to take at least 25cm this time. It will be tricky because the stricture is located close to the ileocecal valve. (http://www.answers.com/topic/intestine) Valves always make things more touchy. Plus, there is the new stricture. They will look at it and remove it, if need be.

As if all of that wasn't enough...they are going to look at redoing the duodenal bypass that was done last year. One of the loops of the bypass has already strictured and the other loop is at an odd angle.

Good thing my son's nook connects to the hospital wifi and I can stream Netflix while I wait!

Cheryl
03-24-2013, 03:44 AM   #15
DustyKat
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Ah okay. Both of my children have had ileocaecal resections but no other involvement outside of the terminal ileum.

It surely will be a tricky op, bless him. I hope all is successful Cheryl and this op is able to give your lad some lasting peace and relief.

Good luck!

Dusty. xxx
03-24-2013, 04:01 AM   #16
vtfamily
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Dusty,

The really crazy part is that none of his strictures have been anywhere near each other. so, I can't even say that he is stricturing due to scar tissue from the first resection, or the perforation, or the duodenal bypass.

Gus is definitely a zebra with unicorn tendancies! LOL

Thanks for the good wishes!
Cheryl
03-24-2013, 04:10 AM   #17
DustyKat
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He surely is Cheryl! But a special kid like Gus must have an equally special Mum. You are doing great job Cheryl and I know you feel lucky to have a lad such as Gus and he is equally lucky to have you have as his Mum and advocate.

Onwards and Upwards!

Dusty. xxx
03-25-2013, 03:04 PM   #18
CarolinAlaska
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Here's wishes for a grand day skiing. My dd hides at home as much as possible due to her NG tube. We had close family friends over yesterday and she made an appearance, but then went and hung out by herself in her room (didn't even want to play games with us ). Oh well. I'm glad your son can ski without restrictions!
03-26-2013, 05:02 PM   #19
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Hello!

My 17 year old daughter will also be starting Stelara very soon. She went to her follow up appointment at the Mayo Clinic today for a colonoscopy, and her colon does not look any better. She has been on Cimzia/6mp combo. Dr. Cangemi called in for the Stelara today and our Pharmacy called and said our insurance company (United Healthcare) approved it thank goodness, so they will be getting it in tomorrow. She will be starting out with 90 mg. I really hope this helps her. We have tried Remicade, Humira and Cimzia along with everything else under the sun!

Therese
03-26-2013, 11:19 PM   #20
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Hello!

My 17 year old daughter will also be starting Stelara very soon. She went to her follow up appointment at the Mayo Clinic today for a colonoscopy, and her colon does not look any better. She has been on Cimzia/6mp combo. Dr. Cangemi called in for the Stelara today and our Pharmacy called and said our insurance company (United Healthcare) approved it thank goodness, so they will be getting it in tomorrow. She will be starting out with 90 mg. I really hope this helps her. We have tried Remicade, Humira and Cimzia along with everything else under the sun!

Therese
That's amazing. I'm happy your insurance approved the off-label use. So many people are having difficulty getting the green light.

Let me know how it goes for your daughter. Gus is using the 45mg dose (12 yrs old, 75 pounds). He has already had dose #2. Next dose will be in 12 weeks (June-ish).

Gus GI doctor is watching carefully. We had an MRE in January, tons of inflammation. Then another in January, due to continuing pain. Second MRE showed that inflammation was better AND the formation of a new stricture. Was it there before or not??? The inflammation was so bad in January, we may never know for sure.

Cheryl
03-27-2013, 12:08 AM   #21
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Hi Vtfamily
I don't know how I missed this thread for so long, but I just want to let you know how much I appreciate it. I am very interested in this Stelara.
I truly hope it works for your son, it seems he's been through too much already !
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03-27-2013, 11:16 PM   #22
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@mugsymagoos, We have United Healthcare/Oxford and they are denying us! We are hopefully getting help from Johnson & Johnson's Patient Assistance Program, they might be able to help us get the Stelara until the insurance company agrees to cover it. So frustrating! I hope these kids do well, I will be following these threads closely! Good Luck! Kim
03-28-2013, 12:59 AM   #23
CarolinAlaska
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Hello!

My 17 year old daughter will also be starting Stelara very soon. She went to her follow up appointment at the Mayo Clinic today for a colonoscopy, and her colon does not look any better. She has been on Cimzia/6mp combo. Dr. Cangemi called in for the Stelara today and our Pharmacy called and said our insurance company (United Healthcare) approved it thank goodness, so they will be getting it in tomorrow. She will be starting out with 90 mg. I really hope this helps her. We have tried Remicade, Humira and Cimzia along with everything else under the sun!

Therese
How long was your daughter on each of those meds before she had to move on? How long has she been on 6 MP?
03-28-2013, 05:56 AM   #24
AZMOM
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Im VERY interested in Stelara. Thank you for the thread. This drug could have a HUGE impact on those the can't have TNF blockers!!!

J.
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Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-28-2013, 09:55 AM   #25
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Kayla's doctor and nurse were shocked that United Healthcare approved it immediately! They said they have no patients that have gotten the Stelara that quickly and we are so thankful, believe me! Not sure why United would approve it for her, and not for others that have United??

Kayla was on Remicade for a few months a few years back and was doing well, but then had an allergic reaction. Started Humira after that for about 4 months and then it stopped working. Was on prednisone for a while, methotrexate and everything else under the sun. When we started seeing Dr. Cangemi at the Mayo clinic, he put her on the Cimzia/6mp combo. It has been about 7 mos and she had another colonoscopy and her colon looks worse if anything. That is why we are moving on to Stelara. The biologics really did not work well for her, so I am hoping Stelara will!!

Will keep everyone posted. Did not have the first injection yet...waiting to hear back from our Dr.'s office on how to proceed, although I do have the injection sitting in our fridge waiting!

Therese
03-28-2013, 10:02 AM   #26
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That's great news that it was approved so quickly Therese! We also have United so I'm happy that if it comes to Gab needed to switch to that at some point (maybe sooner than I think lol) then I know we won't have any trouble either. Seems like you and I have more and more in common !
03-28-2013, 10:14 AM   #27
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Yes, Donna was shocked that United approved it the very next day! She said Dr. Cangemi usually has to petition a few times (could take weeks) before they MAY approve it! I hope this works...she has been feeling absolutely awful. We are on spring break but school starts back next Tuesday.

Therese
03-29-2013, 12:10 AM   #28
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I'm not sure if it's the Stelara or not, but...we just returned from our Spring Break vacation and Gus did really well. He spent four days skiing! No real pain. He felt a little "icky" a couple of times, but nothing major. I can't begin to recall any period where he exerted anywhere near as much energy, ate what he wanted and didn't end up in pain.

It's a joy to see my boy so full of life again!
03-29-2013, 12:18 AM   #29
DustyKat
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How wonderful for Gus, and for you to be able to enjoy it!

May it keep on keeping on!

Dusty.
03-29-2013, 04:40 AM   #30
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Delighted Gus enjoyed his break.
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