Crohn's Disease Forum » Parents of Kids with IBD » Using Stelara For Children With Crohn's


 
01-16-2017, 10:59 PM   #181
vtfamily
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I completely forgot to mention...it has been a very long time since Gus needed any supplemental feedings through his G-tube. So, for his 16th birthday, his doc approved removing it. I deflated and removed it at home. He was so elated! Nothing but pure joy for the rest of the day.

He had the port for so long that it took quite a while to heal, in fact he had to have it sutured closed after about six months.

We had fun with it though. The stoma would "act up" when he was hungry. So we joked that his other mouth wanted to be fed too. Crohn's families have to find the humor where they can! Right?!

Take care all.
Cheryl VT
01-16-2017, 11:02 PM   #182
Maya142
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How many years did he have it? Just curious because my daughter has a G tube that she does not use anymore (she had to get a J tube placed because of her Gastroparesis, which she uses instead).

We have talked about letting it close, but her GI said it would probably have to be sutured since she's had it for more than a year and we haven't gotten around to it.

Did Gus's close easily after being sutured? Did it leak? Any issues?

M's stoma also makes noises when she is hungry .

Glad he is done with it!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-16-2017, 11:10 PM   #183
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It was Carol's daughter who is having the pill cam and scopes this week. We went to meet about Caitlyn doing a research study. It did not go great. I posted about it on my thread, the one titled it's been 7.5 years since diagnosis. If you want to take a look at it.
Sorry Kim for the mix up. I will go to your thread to follow-up on the study. Sorry to hear it didn't go well.

Cheryl VT
01-16-2017, 11:23 PM   #184
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How many years did he have it? Just curious because my daughter has a G tube that she does not use anymore (she had to get a J tube placed because of her Gastroparesis, which she uses instead).

We have talked about letting it close, but her GI said it would probably have to be sutured since she's had it for more than a year and we haven't gotten around to it.

Did Gus's close easily after being sutured? Did it leak? Any issues?

M's stoma also makes noises when she is hungry .

Glad he is done with it!
He had been through several versions of G-tubes and G-J tubes along the way. The tube has been in for about 7 years. He hasn't had to use it at all since he started Stelara 4 years ago.

Pulling it out was easy. I cleaned the area really well and put gauze and a bandage over it. Cleaned and bandaged every day the first week. I did everything they would have done at the GI's office...and I saved myself the hour drive there and the hour drive home.

There was some leakage the first 24 hours, but not as much as you would expect. Gus did get a little rash because his skin was sensitive to the adhesive from the bandages. No fever or anything, it just looked icky, so I took him into the local clinic to be on the safe side.

The suture part was a little more complicated than I thought it would be. They had to go in pretty deep to completely suture from the inside out. Gus was sore the next day, so it was good we did it late in the week. He missed one extra day of school and recovered over the weekend. Otherwise the suturing was not a big deal.

I was rolling on the floor with laughter at the face the nurse practitioner made when I told her I removed it myself, at home. All of the color drained from her face and she just stood there in disbelief. I assured her that I did it with the doctor's permission. Still, she hurried out of the room to touch base the doctor. In the end, it was highly entertaining and nothing to be worried about.

Now that it is all healed, the scar almost looks like a second belly button.

I hope that helps.
Cheryl VT
01-16-2017, 11:25 PM   #185
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CarolinAlaska,
How did the pill cam go today?
Cheryl VT
01-17-2017, 06:09 PM   #186
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What a great update,
Grace is going on almost 4 years with her gtube.
It's been a blessing to have it but it will be a blessing to remove it for good. Lol
The surgeon told us that after 2 years, it will have to be stitched.

Lol, about the nurse. Don't they know we ibd mom's have had to handle a lot worse.
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
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01-21-2017, 10:22 AM   #187
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How did the pill cam go today?
Cheryl VT
That was on Thursday. It was disappointing, because we don't think it got through her ileum before we ran out of time.
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*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent 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.
04-11-2018, 06:49 PM   #188
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Hi -

I am a 41 year old woman with Crohn's...but I am actually writing to ask you guys for help with my 7 yr old niece - diagnosed with Crohn's in her small intestines 6 mos ago. My brother is agreeing to Entocort for 10 days - if that doesn't work, then prednisone - because the first fight is to reduce inflammation. Poor Gabby is only 8 but is scared to eat anything lest she feel sick again. They're working with a nutritionist but first thing is to reduce the intestinal swelling.

Without going thru my own history of trying many, many drugs - do any of you have experience with a young child on biologics? With a family history of Crohn's (me, my dad, and now Gabby) I was wondering if any of you have an experience with Stelara. All these meds have side effects - but I think Telara may be good for Gabby (I'm on it now and it's the first biologic hat neither my father nor have suffered severe negative effects.

Any experience/suggestions/advice about trying Gabby on Stelara?
04-11-2018, 07:01 PM   #189
Maya142
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Hi and welcome!
It could be an option for your niece. However, it isn't approved in kids, so it's pretty unlikely that it would be given as a first-line drug. It's MUCH more likely she will get a biologic that is approved for kids - like Remicade or Humira. If those fail or she has significant side effects, then they would try to get insurance approval for Stelara. It is really hard to get insurance approval sometimes - there are some parents here with kids on Stelara but they have all already tried at least one anti-TNF (usually Remicade) if not both, and even then had trouble getting it approved.

I'll tag my little penguin because her son recently started it. I will also tag some other parents:
pdx
crohnsinct
Mehita
Tesscorm
Pilgrim
kimmidwife

So about side effects - I have two daughters who have been on Remicade and Humira. Neither had significant issues with side effects. Actually, they have had no side effects on biologics except for some tiredness the day after Remicade.

I wouldn't necessarily go on how you and your dad have done. Kids are different - they are more resilient in some ways and metabolize drugs differently. In fact, they are often given much higher doses that adults.

And it really does vary - I have two kids with the same kind of juvenile arthritis (and one has IBD) and they respond very differently to meds. We have several families who have two kids with Crohn's, and each kid is different. So she may not have issues, even if you and your dad did.

I can tell you that MOST parents on here who have had kids on biologics are going to tell you that they were all scared to put their kids on biologics. Terrified. Spent many nights worrying. And most have never looked back and only regret not putting our kids on them sooner.

In terms of reducing inflammation, have you heard of Exclusive Enteral Nutrition? It is 6 weeks of 80-100% of the diet being from formula, with the remaining percent being from food. It lets the gut rest, is easy to digest and best of all, can induce remission better than Pred can. And it's better for mucosal healing. It is used a lot more for kids than adults and seems to work better for kids.
04-11-2018, 09:16 PM   #190
dhelle
 
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Hi Maya142 -

Thanks for your prompt and educated response. Truth is, at this point my brother says he is just focusing (along with Gabby's gastro) on reducing the inflammation. He was ready to try a short course of prednisone but her doc suggested first trying ten days on Entacort - a milder version of steroid. He and I are both hoping this works but truth is, I know pred will really just open things up more quickly and give her the much needed relief. I referred him to a nutritionist and they've started on some of her suggestions - but he's looking more to the brief course of steroids before really focusing on details of diet.

She's "mostly" gluten free but is rather malnourished and afraid to eat because she doesn't know what does/doesn't make her sick. I'm not certain if the doctor suggested the diet to which you referred - is that a liquid diet?

All I know is when I was her age I was constantly having digestive issues but nothing was diagnosed till my late teens. I understand not all biologics are recommended for children and frankly I cannot stand some of the side effects, but as you said, they do get a lower dose than adults.

For children, I know more about diet recommendations than meds, so if any of you are more in the know, I'd love to hear what you think!

Well wishes and well health to you all -

dani
04-11-2018, 09:35 PM   #191
my little penguin
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Een is exclusive enteral nutrition
Formula only (no solid food or other liquid food )
This is as effective as steriods in kids without the side effects
My kiddo was dx at age 7
He is now 14
Een is done for 6-8 weeks with formula only
Polymeric (kids boost /pediasure for some kids )
Most need semi elemental (peptamen jr /peptide ) where the protein chains are broken down
Other adult
ďdietĒ doesnít not work in kids
So gluten /milk/meat etc free diets donít work kids lose weight

Entocort for 10 days really isnít long enough
Damage tajes 6-8 weeks to heal no matter the method including pred
Busoenide only works for part of the intestine
And still has the same risks as pred

While on steriods /Een maintenance therapy needs to be started
So the kiddo doesnít have to stay on steriods longer

5-asa take 30 daysin kids butare not recommended for Crohns
Mtx is recommended in kids
They no longer use 6-mp for kids due to high lymphoma risk

Biologics are remicade then humira
Remicade since kids grow fast
This allows the dose per weight to stay the same longer
Most insurance will not cover biologics until they fail lower level drugs
Then
Biologics are either remicade or humira for approval

Stelara IS NOT approved for kids
Generally if they let kids use it off label itís thise over 12
Medically 12 is the magic age
Took many months to get Stelara approved for ds
But he had been on remicade (8 months)
Humira for over 5 years

I will say he did Een three times
Stay on 30-50% formula plus food after that for the past 7.5 years
This allowed his gut some relief and let him gain:grow like his peers

We did research and tried all the free of diets /paleo /scd/crohns exclusive
Not recommended for kids

Definitely get a second opinion
At one of the top three for pediatric ibd
Boston childrenís
Childrenís of Philadelphia
Cincinnati childrenís

They can do records review

Kids disease is much more agressive than adults
Itís changes over the first 10 years of dx
Adults doesnít change as much

Ds drank peptamen jr for years then needed to switch to elemental formula amino acid based
He currently drinks 50% of his cLories from
Neocate jr chocolate orally
No tube
Good luck
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04-11-2018, 10:31 PM   #192
crohnsinct
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Well Gabby is a very lucky young lady to have an aunt who shares the same disease and who loves her enough do all this research. Your brother is also super lucky to have such a loving sister!

Entocort does not have such a great success rate with pediatric Crohn's. One of my daughter's was put on it and our GI said it had maybe a 40% success rate. I also think 10 days is not a long enough time to judge effectiveness.

Steroids and EEN are used to induce remission but you are absolutely right in that you need a maintenance med to take over. Most maintenance meds need a while to get to therapeutic levels. Methotrexate can take up to 12 weeks. So they are started at the same time as the steroids/EEN. This way you have something to induce remission and an exit strategy. Stelara is a very attractive drug but it is not approved for pediatric use as of yet. However, Remicade is an anti tnf and has been used with pediatric patients for years with much success. As MLP pointed out it is a more flexible drug with regard to dosing a young growing child.

Good Luck and ask any questions. There are many of us who have BTDT.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
04-11-2018, 10:34 PM   #193
Maya142
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My daughter has had success on Entocort, but like MLP said, it takes more like 6 weeks than 10 days for it to work. She should have some response in 10 days, but I hope they are planning to keep her on it for longer. I think from your post, I understood that if she hasn't improved at all in 10 days, then she would go to Pred. But if she does improve, she stays on Entocort, right?

Kids have MORE aggressive disease than adults, so often they need a HIGHER dose of the biologic. Remicade is used most often because it is dosed mg/kg and that works best for growing kids. With Humira, you only really have two doses (20 mg or 40 mg), and then one frequency change (biweekly to weekly, though some docs will do every 5 days).

It sounds counterintuitive, but you really do want to treat kids aggressively. If you get the disease under control with a biologic, she is less likely to deal with strictures, abscesses, fistulae and in kids, growth delay (which can be very distressing for kids).

That is why supplemental formula is suggested. EEN (exclusive enteral nutrition) is 100% formula. That is only for 6-8 weeks to induce remission. Then she would add food back and just get some of her calories from formula.

My daughter was severely underweight and malnourished. She never had to do EEN because Remicade controlled her Crohn's quickly. But she did supplemental EN for years. She first tried to drink Peptamen Jr. It does not taste great unfortunately. She was able to get down two shakes, which wasn't enough calories for her to maintain her weight, much less gain.

Then we went to tube feeding, which is when she FINALLY gained weight. She inserted an NG tube (tiny, infant sized and flexible like spaghetti) and a pump pumped formula into her stomach overnight. She got 30-60% of her calories that way. The other calories she ate. It was the first time she gained weight.

We had let her get very malnourished and very sick before we finally convinced her to use the tube. She was severely underweight and developed and arrhythmia and Refeeding syndrome. Her electrolytes were out of whack for months.

I'm sure you know, but her parents may not - being malnourished is serious. It is especially serious for kids and teens who are growing and developing. So formula is essential in some cases - many GIs tell kids it's like a medication. Not optional. Our GI said she choose if she drank the shakes or used a tube, but she NEEDED nutrition. We let my stubborn teenager make the decisions and she lost 25 lbs and only FINALLY agreed to the tube when she was told her organs could shut down if she lost more weight.

This is a LONG way of telling you nutrition is important. But makes sure it is someone who knows KIDS and not just adults, if you see an RD or nutritionist. An RD is better and especially someone her pediatric GI recommends. Because adult crohn's and pediatric Crohn's are not the same. Pediatric Crohn's is a whole different beast, unfortunately.

As for biologics, I once asked my daughter what she hated most about her Humira injections (which, as you may know, burn a lot). She said she hated that she didn't get to take them more often than weekly, because they made her feel better. She was 13.

Your niece will surprise you. I have been around these boards 5 years and we don't hear about significant side effects for biologics very often. We hear success stories much more often!

Last edited by Maya142; 04-11-2018 at 11:04 PM.
04-11-2018, 11:07 PM   #194
Maya142
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I also want to add - NG tube feeds sound very scary and intimidating. We were scared. My daughter was miserable for the first day (her nose was sore, her throat was sore), but on day 2, she inserted it herself. By the end of the week she was a pro at inserting it - took 10 seconds, if that.

She inserted it every night and pulled it out every morning. No one at school had to know. With younger kids, usually the tube stays in and is changed once a month. But kids as young as 7-8 do insert them by themselves at our hospital. Our children's hospital is very big on supplemental enteral nutrition to make sure the kiddo is growing and gaining weight properly.
04-12-2018, 06:12 PM   #195
danifhelle
 
Join Date: Apr 2018
Where can my brother find Een? Is it just a liquid diet that she'll drink for weeks?

It may seem strange for me to be asking so many questions for my niece, but her parents are a bit too freaked out/overwhelmed to focus enough so I've been doing the research for them.

As far as the effects of malnutrition on a child, I think MLP brought this up, I know it is very serious. I'm not sure her parents understand the impact this can have on her bones and neurologic development - emotional, psychological and cognitive.

I agree with all of you - Entocort does ittle, ASA even less. She's stopped the Cipro because it hasn't worked. Most frustratingly, they will not talk about this around her. Will not let me talk to my niece - like having a "fun" conversation over backyard basketball: "of these 3 foods, which do you ike most?" - because that's a good way to get a window into what she knowingly-but-unknowingly avoids.

Will keep you guys posted.

Thanks for your help.
04-12-2018, 06:54 PM   #196
Maya142
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Why don't you have her parents read this thread? Just send them a link.

So EEN can be done with several different kinds of formulas. Polymeric, which are whole proteins and hardest to digest. Those would be Pediasure and Kid's Boost. Those can be bought online, in grocery stores, in some pharmacies (Rite Aid for example).

Then there is semi-elemental - partially broken down, so easier for kids to tolerate. Unfortunately, they taste worse than polymeric formulas. Many kids do get used to the taste. Those are ordered online. Pediasure Peptide and Peptamen Jr are the most commonly used semi-elemental formulas.

Some GIs insist on semi-elemental for Crohn's kids. We had previously tried Pediasure/Ensure and they made my daughter nauseous and she had diarrhea. So we understood the need for semi-elemental. Our GI gave us samples - different flavors. There is chocolate, vanilla and strawberry Peptamen Jr. That is what my daughter drank. She didn't like them at first but got used to them. She liked chocolate and strawberry. There is also an unflavored version you can add chocolate sauce too.

Unfortunately, she ended up being one of the few who could not even tolerate semi-elemental formulas. Her GI said it was rare in IBD kids, but sometimes did happen. So she went to elemental formulas - Neocate Splash, Neocate Jr and Elecare are the most common. She had an AWFUL time drinking them. They really taste awful - she made all of us try them.

She claims they taste like dirty feet and so ended up using the feeding tube. That worked well for her. Most "big kids" - teens, older school age kids - have trouble drinking elemental formulae. Some can do it. But mostly it's done by very little kids (babies). Most big kids/teens prefer tubes. Elemental formulae are also very expensive and are either delivered via a home health company if insurance pays or are bought online.

Some insurance companies will give you grief about covering formula, unless it's her sole source of nutrition (according to some policies) and/or it's going in through a tube. Others won't - ours paid for formula M drank and the one put through her tube.

Good luck!!
04-12-2018, 07:52 PM   #197
my little penguin
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Ours has paid for formula for the past 7 years
No tube only supplemental not sole nutrition
Covered under durable medical equipment clause as infusion therapy supplies
04-13-2018, 10:21 AM   #198
Max's Mom
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My son got Crohn's when he was eight . He started Remicade shortly after that. Worked well for a number of years.No side effects at all. Inflammation is our common enemy here. The inflammation is what's causing pain,diarrhea etc. Question is, which medication or treatment will work best to fight it ,for you niece? Sometimes it takes a while to figure that out,but together,I'm sure you will find a solution.
04-13-2018, 11:05 AM   #199
crohnsinct
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Boost and Ensure can be purchased in the supermarket or local drug store or even Walmart. You can pick up a few cans and see how she likes it before making a huge commitment. Boost and Ensure are also covered under insurance.

My daughters knew that it was an 8 week commitment but we always gave them an escape clause. We approached it slowly so as not to overwhelm them. We said, "see if you can drink a can". Then it was see if you could do a day, the day turned into a week etc. Once they started feeling better they did really well with it. Oddly the last week was the hardest. I think because the end is sooooo close and they are tired of it by that point.

Just a required disclaimer: If they do decide to try EEN, please make sure they let their GI know and they work with them. If she can not tolerate Boost or Ensure there are other formulas she could try and the GI can help them with that and the filing of insurance paperwork.

Good Luck!
04-16-2018, 02:43 PM   #200
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Just to add to the EEN chorus... I don't think there's much info I can add, just my son's experiences...

He was diagnosed at an older age than your niece, he was 16 but our hospital was also very pro EEN and that was the preferred treatment option, even over steroids. He did six weeks of exclusive formula (no food except for clear 'liquids' - broth, jello, clear popsicles (no chocolate), etc.). He used an NG tube overnight, as Maya's daugher (so inserted at night, removed in morning and, again like Maya's daughter, he quickly learned to do it and it took seconds). He used an elemental formula - Tolerex.

After the six week exclusive period, he went to a regular diet but continued with the overnight formula at half dose for the next two years.

Only to show the difference in weight that the formula made... prior to being sick, my son was approx. 140-145lbs. After being sick for a few months, he dropped down to approx. 120-125lbs at diagnosis. If my memory is correct, he gained 10 lbs over the exclusive period, and an additional 20 lbs over the next three months (while on the partial EN). Over the next couple of years, he reached 175lbs (it was all 'heathly' weight, ie not the sort of quick weight you can gain with pred). Of course, some of this was expected 'development' and growth but, my point is that the nutrition he received through the formula allowed his body to develop and grow in a healthy way.

He continued with the overnight NG tube feeds until he left for university. By this point, he had started remicade. Upon leaving for university, while not on the tube feeds anymore, he continued (at my insistence, not GI's) with 1-2 Boost shakes each day. He's now finished university but still continues with the shakes most days (it's now become 'habit' for him to grab one for breakfast - better than a fast food breakfast sandwich! )

While I can't 'prove' it, I've always believed the steady nutrition he received helped his body heal and stay as healthy as possible.

While it may be harder for an 8 year old to understand the necessity, if she can be convinced, it can only help her. And the tube, likely a tougher sell , can be an even better option in that there is no argument that 'I'm not hungry', 'I don't like it'... it's done overnight, no effort needed, no taste to deal with... but, I can imagine, it would be a tougher sell to an 8 year old.
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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
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