Using Stelara For Children With Crohn's

Parental Guilt can be a book all its own.

Chapter 1 - I didn't notice
Chapter 2 - I didn't pay attention
Chapter 3 - I didn't push hard or fast enough
Chapter 4 - But they experts said IBS
Chapter 5 - I picked the wrong med
Chapter 6 - I have other kids?

and on and on!

I just had my Dani read Gus'piece. She really liked it!

What a great story - he should definitely continue writing !
Thank you for sharing.

crohnsinct said:

Parental Guilt can be a book all its own.

Chapter 1 - I didn't notice
Chapter 2 - I didn't pay attention
Chapter 3 - I didn't push hard or fast enough
Chapter 4 - But they experts said IBS
Chapter 5 - I picked the wrong med
Chapter 6 - I have other kids?

and on and on!

Click to expand...

:ylol::ylol: Made me laugh! Thanks

crohnsinct said:

Parental Guilt can be a book all its own.

Chapter 1 - I didn't notice
Chapter 2 - I didn't pay attention
Chapter 3 - I didn't push hard or fast enough
Chapter 4 - But they experts said IBS
Chapter 5 - I picked the wrong med
Chapter 6 - I have other kids?

and on and on!

Click to expand...

I am so using this! Absolutely true!

What a great writer. Most adults cannot articulate the written word that well.

Yes CIC, I would read that book.

I cried when i read Gus' s chapter. His story is very similar to Brian's with the no food and sitting and listenjng to how bad the area in bowel is. Please read my new thread Its too long to put here also. Brian could only have water or Gatorade with een and now tpn thru pic line. He silently is just doing it. He can swish out his mouth but can't swallow anything. Was Gus's septic shock from the picc line?

We would tell our son, "Eat! Thats why you are so thin. If you want to get bigger you know what you need to do". He was young...i think he didnt even know why he wasnt eating. He even told me last year when i was questioning how bad his cramps were, "Mom, everyone hurts a little when they poop. Thats normal, right? Do you not have even a little pain everytime?" I don't. ... I'm sad for him. That's awful

BriansMom,

Yes, ultimately he did go into septic shock. The docs explained we all have staph on our skin, all of the time. It usually goes unnoticed...until it gets inside the body then it is serious, deathly seriious. PICC lines do give staph that "window of opportunity." That is why the hygiene procedures are so important. I have my suspicions as to when/how it happened. If Gus ever needs complete gut rest and a PICC line again, I won't say no BUT I will most certainly have more questions/requests. One of the important issues for us was that our local clinic cannot flush a blocked PICC line in a child. Not in Peds, not in Urgent Care, not even in the infusion center. We would have to drive 100 miles to the hospital for that. Gus' line would work fine to infuse the TPN into his body. It was the draw backs that were difficult. I think it was those blood clots at the end of the line that gave the staph a place to grow.


I'll look into your thread! It would be super if we could get Brian and Gus talking!!!

Cheryl VT

I don't understand, sorry. You mean your line would not draw back or the drawing back was the problem? Our supply company haven't acted like we will draw back...but hospital has and also has been doing that. I'm scared to go home but also am so tired of living in the hospital. Did something someone did at a clinic give the infection, or happen while at home. The tpn nurse here said to check his temp within hour of messing with line. If infection was introduced she said fever will happen by an hour or so.

Brian'sMom said:

You mean your line would not draw back or the drawing back was the problem? Our supply company haven't acted like we will draw back...but hospital has and also has been doing that. I'm scared to go home but also am so tired of living in the hospital. Did something someone did at a clinic give the infection, or happen while at home. The tpn nurse here said to check his temp within hour of messing with line. If infection was introduced she said fever will happen by an hour or so.

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Giving the TPN infusion was never a problem. It always went in fine.

There are two opinions on drawing back. One is don't do it because it pulls blood into the line, which may then clot. The other is to do it to verify that a clot has not already formed at the end of the tube. Hard to say which is "best." Seems like two sides of the same coin to me.

My process was to flush both lines with saline first. Then do a draw back, just enough to see a tiny bit of blood. Then flush again. Run the TPN infusion. Upon disconnection, flush again and put the heparin in the lines, and end by capping-off.

The nurses did a draw back on the line every time they touched it when we were in the hospital. It wasn't part of our PICC line training, so I didn't do it for the first couple of weeks. The first time the nurse couldn't do a draw back check during a dressing change after we came home, I was trained how to do it and was told why it was important. So I did it from then on.

We had a nurse come to the house to do dressing changes until Gus returned to school. I would take Gus to our local clinic for dressing changes after that. Although there were a couple of times when I had to do the dressing change myself. I was really afraid at first because there is so much at stake, but it really isn't rocket science and it was fine.

I can't be 100% positive about how he acquired the bacterial (staph) infection. Checking temp a few times after doing the dressing change sounds like good advice.

My hind sight observation is that we need to be able to de-clot the line locally, when necessary. Having to take him to the hospital (100 miles away) for a nurse to push a de-clotting agent through the line seems like an unnecessary step.

Hope that helps.
Cheryl VT

ONE FULL YEAR ON STELARA!

I almost can't believe it. Today Gus received his eighth injection. He told the doctor he can't remember a time when he felt as good as he does right now. Doc is pleased with Gus' status. Gus is happy. What more can a mommy ask for!?!?

No telling how long this will last. Just enjoying it moment by moment.

Felling pretty blessed today. Thank you Stelara!

Wow! That is fabulous Cheryl! :yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:

And how brilliant that Gus is feeling on top of the world! Bless his :heart: May it just keep on keeping on. Onwards and Upwards! :thumleft:

:mademyday:

Dusty. xxx

Cheryl,
SO SO happy for you & Gus!!! Yes enjoy this!!!! It's so wonderful to hear that you are on the straight and narrow after the winding Rocky Mountain cliff you have traveled! It's been a long road that's for sure, but here you are.
And to have a happy boy who is feeling good...nothing will give mama a good nights sleep like that will!

I LOVE that he notices it and appreciates it. What a great kid!

Since he is feeling so great can you ask for a clean room? And if it's already clean then you can't ask for anything more...you have the perfect kid! A tribute to great parenting I am sure.

Great news. Long may it continue!

Saw the GI today. Looks like Stelara has "stalled" as a Crohn's drug. Gus continues to do very well with the Stelara, but a spin-off of Tysabri (affectionately called "Vido") is taking the lead in the anti-adhesion category and most doctors are going that direction. In fact, anti adhesions may replace 6MP and the like!

We are going to stick with Stelara for Gus, but it is comforting to know that Vido will be ready IF he needs it in the future. It's nice to have a plan "B" again.

vtfamily - What do you mean Stelara has "stalled"? We were told the opposite - that Stelara works well in people who have failed Anti-TNFs and Vedolizumab works better in UC than Crohn's. Just curious because Stelara's probably next for my daughter.

Maya142 said:

vtfamily - What do you mean Stelara has "stalled"? We were told the opposite - that Stelara works well in people who have failed Anti-TNFs and Vedolizumab works better in UC than Crohn's. Just curious because Stelara's probably next for my daughter.

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Sorry...stalled, as in GI docs are really excited about Vido (Vedolizumab) and looking ahead to Vido instead of Stelara. Both are same family of drug, anti-adhesion, the same way Remicade and Humira are different but in the same family of anti-TNF drugs. The appeal is the lower major risk factors as compared to current Crohn's drugs...and we all know those can cause sleepless nights.

Gus has Crohn's, just turned 14, and has been on Stelara for about 16 months. Nothing else worked to control his disease. He had the best school year ever this year. He says he feels like a regular kid! So, I am a HUGE fan and would say "go for it."

Not many docs have experience with Stelara for Crohn's, especially peds Crohn's. Our doc is happy to discuss with any doc looking for experience with actual patient.

Sorry if I scared you. Personally, I'd like to see the medical community pursue both drugs as options for us since Crohn's is not a "one size fits all" disease.

Best wishes for you and your daughter.
Cheryl VT

Morning!

Another fan of Stelara here! My daughter has been on it over a year now, and after her last scope, her colon has looked better than it ever has! The Stelara is definitely working!

Ahhhh....so happy to hear these updates! Liv is still going strong on the Stelara as well! It is nice to know there are other options available, but for now we will continue with Stelara!!

We do our second Stelara dose Friday and these words are encouraging!!!!

I did not want to hold out for Vedolizumab. I'm sure it is great and helping A LOT of people safely or it wouldn't have gained approval. I'm just not ecstatic about it having the same mechanism - simplistically speaking - as Tysabri. No PML to date with the Vedolizumab but I'm paranoid! Aren't we all?!?!?!?!? :ybatty:

J.

Cheryl, I have been mentioning Stelara to our GI at Mayo for a long time. He just never seems to engage in a conversation about it. We go back for a 6 month followup colonoscopy/MRI the end of Sept in Rochester with him. I intend to just ask him about it. Our KC GI at our last appt mentioned the Vedo... She was really excited but also mentioned the bad side effect it had. I asked her directly about Stelara and she said there wasn't as much excitment around it. I wonder why. KC is limited... so I just am holding my questions for Mayo. If Brian's rectum doesn't look better after 6 months of diversion... then we'll be going off of Cimzia/MTX so that will be time for discussion.

Funny how all these doctors have their favorites. We have heard so many good things about Stelara and not much about Vedolizumab, but maybe that's because M also has arthritis and Vedolizumab is supposed to be gut specific.
We were told Stelara will be approved in 2015 but not sure if that is true.

AZMOM said:

We do our second Stelara dose Friday and these words are encouraging!!!!

I did not want to hold out for Vedolizumab. I'm sure it is great and helping A LOT of people safely or it wouldn't have gained approval. I'm just not ecstatic about it having the same mechanism - simplistically speaking - as Tysabri. No PML to date with the Vedolizumab but I'm paranoid! Aren't we all?!?!?!?!? :ybatty:

J.

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We didn't have the option of waiting for Vedo either. Stelara has been a real blessing...even if Gus had to be the first kid in L.A. to use it.

Brian'sMom said:

Cheryl, I have been mentioning Stelara to our GI at Mayo for a long time. He just never seems to engage in a conversation about it. We go back for a 6 month followup colonoscopy/MRI the end of Sept in Rochester with him. I intend to just ask him about it. Our KC GI at our last appt mentioned the Vedo... She was really excited but also mentioned the bad side effect it had. I asked her directly about Stelara and she said there wasn't as much excitment around it. I wonder why. KC is limited... so I just am holding my questions for Mayo. If Brian's rectum doesn't look better after 6 months of diversion... then we'll be going off of Cimzia/MTX so that will be time for discussion.

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Kathy,

It's good to hear from you. Hope Brian is doing well. Was thinking about you the other day. Hope the follow-up goes well for you!

I think the lack of excitement around Stelara is because so few Crohn's patients are using it and it still carries TB risk. Whereas Vedo uses the same mechanism and has lower TB and lymphoma risks than other meds...as well as blocking the PML/JK virus risk of Tysabri. I understand the excitement, but I hope the GI community will continue to consider/use Stelara. Remicade wasn't tossed aside when Humira came on the scene! Many people benefited from both and I am sure that will be the case with Stelara and Vedo.

Keep us posted about Brian.

Cheryl VT

Maya142 said:

Funny how all these doctors have their favorites. We have heard so many good things about Stelara and not much about Vedolizumab, but maybe that's because M also has arthritis and Vedolizumab is supposed to be gut specific.
We were told Stelara will be approved in 2015 but not sure if that is true.

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So true about the favorites!

We were fortunate to not have to wait for the Stelara approval to begin using it. I shudder to think what we would have done without it for the past year.

Cheryl - I hear ya. Claire is the first at Vanderbilt children's.

I am not 100% confident that the entyvio (vedo) eliminates the PML risk based on what I've read.

Read the two paragraphs before the FDA medwatch #.

http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm398065.htm

Now ALL THAT ASIDE - if I were to the place that my child was not doing well and this was my best option. I would not be deterred by a maybe.

Like Maya, we've got a lot of arthritis issues, so maybe that's why we went Stelara first.

Hugs,

J.

Thanks for the link. I'll check it out.

Claire had Stelara #2 tonight. Praying!!!!

Maya142 - Claire says to tell your sweet girl IT BURNS. She was furious but she was tired. Usually an ice pack makes her happy but it didn't. All that said, it hurt less than 10 seconds. But I did want to tell you that Claire says it burns.

J.

AZMOM said:

Claire had Stelara #2 tonight. Praying!!!!

Maya142 - Claire says to tell your sweet girl IT BURNS. She was furious but she was tired. Usually an ice pack makes her happy but it didn't. All that said, it hurt less than 10 seconds. But I did want to tell you that Claire says it burns.

J.

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Hugs to Claire. Painful meds are no fun for sure.

Gus said the Humira was the worst, most painful, of all the meds and the burn would linger for 30 to 40 minutes. He felt Stelara was better than Humira in that regard. He also said the Stelara injections don't hurt or bother him anymore. So, the good news is that she may find it isn't so painful down the road.

Cheryl VT

Some have said that Humira isn't that bad... but Brian said it was liquid Fire!! It didn't last long either. But that 's what I worry about Stelara. These kids are so tough... why do the meds have to burn??!! Cimzia is 2 syringes with 200 mg each... its thick--so they go in slow. He says he'd take those over Humira any day... so I guess that gives me insight on how it felt.

J-Claire hasn't ever had Humira because of the TNF part right? I'd like to hear another comparison of the two from a kids point of view.

Thanks J! I was so hoping it wouldn't burn! M hated Humira but it really helped her so she got used to it. She also used to complain that is really burned.

I don't know if this is true but one doctor said they might be coming out with an IV version of Stelara. I know some of trials for Crohn's were done with IV Stelara. Don't tell your kids yet though, because I'm not sure and don't want to get their hopes up!

The UK trial of Stelera is infusion based for the first part. The later parts are injection based. So yes it is possible to get Stelera as an infusion.

Maya - it must since Claire rarely says MTX burns and we are 2 for 2 on it burning (Stelara).

We were never offered an IV infusion option?????

J.

The thing to remember is if its available by injection most inssurance will probably not pay for the increase $$$ due to infusion ..
Will lidocaine help the burn with stelera ??
I know it helps some for humira ( but still burns per DS ).

It's not out just yet J, some of the phase III trials for Crohn's were done as infusions. For psoriasis and psoriatic arthritis (which are approved) only the shot is available.

MLP - I haven't worried much about the lidocaine. We have to get through one more loading dose (the big one) and then it will only be every 8 weeks. I'm figuring with everything else she's tolerated - a 10 sec (at the most) burn every 2 months will seem like child's play. Seems sad, right????

J.

Found out today we are going through the process of getting approved for ustekinumab. Trying to get her started on it very quickly, like in next week. Any tips?

SupportiveMom said:

Found out today we are going through the process of getting approved for ustekinumab. Trying to get her started on it very quickly, like in next week. Any tips?

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Hope you don't hit any road blocks with insurance.

Gus has been on it for a year and a half and is still doing really well.

Best wishes,
Cheryl VT

The hospital does the process for me. The company that handles it is the same one that handled getting us approved for Remicade called BioAdvance. The manage all that directly. Now the concern will be the 20% not covered by insurance.

Gus has had resections, no? D is really scared of having the surgery as we were told from the GI it will most likely be permanent (no j-pouch)

Gus has done very well with the Stelara. No reactions. He said it burns for a few seconds, but nothing like the intensity or duration that Humira stung.

20% wow! The cost for the 45mg dose here is $5,000. I don't know how we would ever be able to cover $1,000 for every injection.

I really hope it works for D. I'm all for avoiding surgery whenever possible!!

OMG I so hope it is cheaper here! I can not afford $1,000 a shot. Humira had a plan that just accepted the 80% and waved the 20% fee. BioAdvance wasn't so good on that for Remicade and only granted it for a year. D was only on Remicade for 7 months before she went off so I never found out what happened after a year. The doc was talking about aggressively dosing her but I got confused with all the info. How often are the dosages for Gus?

https://webrebate.trialcard.com/Coupon/StelaraPortal/

Sterlera assistance card covers some of the copay
Not sure if there is a similar program in Canada but might be worth a call.

We use one for humira and it covers all but $5 .
Good luck

Gus takes the Stelara (45mg dose) every two months.

It seems so strange (in a good way) only having to see the doctor every two months, with no other concerns, pain events or hospitalizations in between.

Just got off the phone with the hospital. Based upon her allergies to medications and her anyphalaxis reaction to Remicade they don't want her on Stelara. They just got the report from her 1st GI on the reaction because I mentioned it and the new GI didn't know it was that severe. Another med crossed off the list.

Trying Simponi instead. Not approved for kids yet is all I know. Time to switch into new research.

SupportiveMom - My older daughter has been on Simponi (for AS not IBD). She was on the injection and did quite well on it (for a while). She got the 50mg dose every 3 weeks (it's usually given every 4 weeks for arthritis, the dose is higher for Ulcerative Colitis -100mg I think). The good news is that the injection is NOT at all like Humira- S said it did not burn at all!

There is also an infusion (called Simponi Aria) available but that is so far only approved for Rheumatoid Arthritis.

We have looked at Simponi for M, for both the AS and Crohn's. Some GI's are using it off-label for Crohn's. In M's case, we would do the infusion, Simponi Aria, because her doctor prefers the flexibility of it and has been able to get insurance to approve it for older teenagers (since it's not approved for kids yet). If high dose Remicade does not work, we're thinking either Simponi or Stelara.

Simponi is almost approved for Juvenile Idiopathic Arthritis and has been through many trials on kids (in Phase III right now), so don't worry about it not being approved for kids. Pediatric rheumatologists also have been using off-label for a while - it has been suggested for M for two years now!

The BioAdvance coordinator felt very confident it would be approved. She & 1 other colleague deals with all of SickKids approvals in the IBD dept. I found it annoying to do the infusions and much prefer administering at home if that continues to be an option. Her dosage is 2 pens at loading dose, 1 pen every 2 weeks. I hope you are right on the no burn. D cried every time I did it. They also cover the remaining 20% our insurance doesn't cover!

S iced the first time, and by the second time did not bother icing at all. She used both the syringe and the pen (insurance messed up and sent the syringe for the first two months).

She said the syringe hurt less, but the pen really was not like Humira and didn't bother her at all (the needle hurts of course, but medication itself doesn't burn).

We were told the same doses for M (100mg) - if we do it, I'd also prefer injections over infusions (so much more convenient!) but her doctor will decide.

Another school year has begun.

Gus' summer labs looked good. No signs of inflammation or new strictures. It looks like the Stelara continues to do well with managing both the pain and the disease.

It looks like he will be able to enjoy his first year of high school "like a regular kid."

What a busy year it will be too! He is carrying a full load of academic classes, with band an hour before school begins and cheer/yell leader (which counts for PE) until 5pm three days per week. Long days, but on the plus side, I hope he will be able to put himself ahead of the curve...just in case he has to slow down due to a flare in the future.

He has such a positive expectation for the year, it is making me positively giddy!

What a great update.

Yay Gus' Mom! I love giddy!

We are cautiously optimistic that things have taken a turn here too. Best fecal cal ever at 189. Still on 50% EN and still weaning Uceris but so far......so good.

Claire gets dose 4 in a couple of weeks.

J.

Yay for Gus and Claire!! I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here). He is just convinced that Vedo is the next big thing and that it was made for Crohn's and UC. His reason he said for us not to start with Stelara is that it was made for psoriasis and the dosing for crohn's has to be tweaked until the correct dose is figured out. Do you think he made the right decision? The Vedo takes about 10-12 weeks to see a response. And as you all know, Because his rectum is so badly damaged... the GI said its possible that no medicine can fix that area now. Lots to consider when its the complicated rectum. But I can't help but think... when I read these posts... Are we on the right thing??!! Oh the worries of this disease. One thing too... The GI also started a new thing this week.... He's having a team of specialists to look over Brian's whole case from the genetic and immunology side of things. The whole immune deficiency side of things. I asked him, "Like maybe he doesn't have crohn's?" He said, "That's what I want to make sure of. Since Brian hasn't ever responded to any of the drugs for crohn's. And either did his aunt that had UC. Remember, she recently died due to potassium levels and other things. She never was in remission her whole life either. Sorry to hijack this thread... It just kinda pertains to me and my research and my worry. And all my smart mom's are on here!!

Brian'sMom said:

I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here).

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Awww Kathy, I just want to give you a big hug! :hug: I know that you and Brian are having a really tough time. I wish there was something more I could do to help.

You are right, from what I can tell, the Pediatric GIs are very excited about Vedo because it was designed for Crohn's, not something else. Since it has the same working mechanism as Stelara (anti-adhesion), I am hopeful that Brian will have success with it.

I think the genetic history is a great idea. More and more work is being done with genetics for unlocking the mysteries of IBD. I actually approached our doctor with similar questions when we first learned that the Humira had stopped working. I made a family tree chart of inflammatory and autoimmune diseases. Our doc wasn't sure what to do with it at the time, but my rationale was that the information in the tree could suggest a treatment path based on Gus' gene pool.

My paternal grandmother had MS (which is what Tysabri was designed for originally), so I wondered if Tysabri could be effective for Gus. I have psoriasis. It would be interesting if we could make an objective correlation between Gus' success and family history. How much easier would it be to find an effective treatment path if there was a correlation with the family inflammatory/autoimmune history.

Keep us posted Kathy. Lots of hugs and prays going out your way!!
Cheryl VT

Stelara is actually an IL 12 and IL 23 inhibitor, which is different from anti-adhesion. They're actually completely different - Vedolizumab is gut specific and Stelara is not (which is why it works for psoriasis and psoriatic arthritis).

Vedolizumab binds exclusively to the α4β7 integrin, a primary mediator of gastrointestinal inflammation. It lessens inflammation in the gastrointestinal tract by selectively inhibiting the entry of inflammation-stimulating lymphocytes into the gastrointestinal tract without blocking systemic adaptive immunity.

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Ustekinumab is a human immunoglobulin G1 (IgG1) antibody directed against the p40 subunit of IL-12 and IL-23 cytokines

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The gene IL23R is actually associated with IBD, psoriasis and Ankylosing Spondylitis, which is why so many doctors are very hopeful about Stelara (even though it is currently approved for only psoriasis and psoriatic arthritis).

Cheryl,
I'll take that big hug!!

Maya, I'm not sure if I heard our GI right, But he said one reason its not approved yet for crohn's is dosing. I could be so wrong.

The research for both sound good. Like they both should work. I like that Stelara is systemic. But GI's seem to like that Vedo is Specific. I guess we have to go with what our doctors say to do. I really pushed for Stelara... so I know he knew my opinion!! Oh well, we see what happens from here. I hope and pray they both work... Then each of us have another option down the road.

I don't know much about Entyvio Brian'sMom, but I hope it will work for your son! I've heard it works very well for Ulcerative Colitis - perhaps since Brian has issues in his rectum, it will work well for him too? He has been through so much, he really deserves a long long break from all of this.

I think Phase III trials are when they figure out dosing, but I could be wrong. Since it isn't approved yet, it does seem like doctors sort of "make up" the dosing for each individual patient with IBD! We were told 2015 for Stelara's approval... which is not so far away, so maybe we'll know more soon.

My daughter was put on Stelara before Vedolizumab came out after failing all other Biologics. Stelara has been GREAT for her! She was able to have her ileostomy reversed, and the pics of her colon looked the best it had looked in two years since before starting Stelara. The thing we are dealing with now is a colon stricture! She has to be very careful with what she eats, but I am trying to look up holistic type things that might be able to help with that too! It's never ending!

Thanks Maya 142. I'll have to clarify the details with our doc next time we see him.

Whatever the mechanism, it is doing a great job for Gus. Though it would be great to be able to connect the dots between WHY some meds work, where others do not on a one to one basis.

Brian'sMom said:

Yay for Gus and Claire!! I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here). He is just convinced that Vedo is the next big thing and that it was made for Crohn's and UC. His reason he said for us not to start with Stelara is that it was made for psoriasis and the dosing for crohn's has to be tweaked until the correct dose is figured out. Do you think he made the right decision? The Vedo takes about 10-12 weeks to see a response. And as you all know, Because his rectum is so badly damaged... the GI said its possible that no medicine can fix that area now. Lots to consider when its the complicated rectum. But I can't help but think... when I read these posts... Are we on the right thing??!! Oh the worries of this disease. One thing too... The GI also started a new thing this week.... He's having a team of specialists to look over Brian's whole case from the genetic and immunology side of things. The whole immune deficiency side of things. I asked him, "Like maybe he doesn't have crohn's?" He said, "That's what I want to make sure of. Since Brian hasn't ever responded to any of the drugs for crohn's. And either did his aunt that had UC. Remember, she recently died due to potassium levels and other things. She never was in remission her whole life either. Sorry to hijack this thread... It just kinda pertains to me and my research and my worry. And all my smart mom's are on here!!

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You are not a hijacker! We love you, mama. Vedo was our plan B. We went Stelara because the mechanism was the other end of the spectrum from the TNF blockers. Many insurance companies won't cover it because using it for Crohn's right now is technically "off label". Because of Claire's arthritis problems, I suspect, our insurance didn't fight with us.

Claire is her GIs first patient on it but some of the adult GI docs at Vandy had patients doing well on Stelara. Her doc talked with the folks at Stelara about the dosing, his colleagues at Vandy and some pediatric colleagues at Cinncy. I was nervous nelly about the dosing process but I have calmed down. (well, my version of calm :ybatty. He said the same thing about 12 week loading cycle like Vedo.

Big hug and plenty of prayers for your sweet boy.

J.

I'm happy to report that Gus' freshman year of high school is going well, even with his crazy schedule (6:45am band to 5pm cheer, later on game days). He has the energy to keep going all day and to keep up with his homework too. He is stronger and more engaged than he has been in years.

His labs continue to look good, not that labs ever tell the true story for him. He remains pain free, a better indicator of his Crohn's being controlled. Puberty has finally begun and he is growing, gaining weight and even has hair in some new places.

I wish I understood why the Stelara is working so well for him when nothing else did. Is there something that connects between his genetics and the drug or is it in the working mechanism of the drug? I think knowing more about that might be helpful to others who have also struggled with finding something that works for them.

I know Vido is the new "it" drug for Crohn's. I really do hope that it brings relief to those who need it so desperately. But, just in case another option is needed...I'd definitely keep an open mind to Stelara.

Looking forward to a very happy new year indeed!

vtfamily said:

I wish I understood why the Stelara is working so well for him when nothing else did. Is there something that connects between his genetics and the drug or is it in the working mechanism of the drug? I think knowing more about that might be helpful to others who have also struggled with finding something that works for them.

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This is brilliant! and surely has…:mademyday:…I am so very happy for you both.

I often ponder this question myself and I am leading toward thinking in these cases there is a complementary effect between the genetics and the drug. Hopefully in years to come there will be more personalised medicine.

Onwards and Upwards Gus and may the good times last a lifetime! :ghug:

Dusty. xxx

Same here with Kayla and Stelara! She continues to do so well on it after failing all other meds! So happy we were given the opportunity for her to be on it off label, and that our insurance company covers the cost too! Here's hoping both Kayla and Gus continue to stay in remission on Stelara! Happy New Year!!

We see a researcher who focuses on AS who recently told us that for AS IL-23 is the target to block. There's a new IL-23 dug (not Stelara) that will come out in 2016 (or around 2016) that he is very excited about - he says it will work much better than Stelara!

Since AS and Crohn's are related, perhaps that's why for some patients with Crohn's IL-23 inhibitors work like magic?

Hello! Both of my kids are now on Stelara. Olivia is going on 2 years this April and is doing great,,,except for a few bumps in the road recently. She was very stressed during college finals and was not eating very healthy with her crazy study hours ect,,,, her recent labs have slipped a little with a slight inrcrease in CRP and low albumin. Her thyroid labs (which is a good indicater of a flare) were way off again...surely not absorbing her hormone replacement and had to increase her dose. She has complained of occassional cramping and bloating and has had 2 recent episodes of blood with BM, and now has a mouth ulcer. Hmmmm...most definitely a mild flare. Liv usually has disease activity this time of the year...cyclic for both kids. She has also just recently started on birth control pills to help with painful, heavy menses that cause her severe nausea, vomiting and headaches every month. The pills have helped with her dysmennorhea, but I cant help but think the hormones may be messing with her CD and possibly causing this mini flare???? She has been having no issues with the Stelara...GI wants to scope her after her next semester is over just to have a look inside. She has not had a scope since starting the Stelara. Praying things look good and she could continue with this drug.

My son started Stelara 3 months ago after using Cimzia for 18 months with absolutely no effect on his CD. Prior to that he had been on Remicade for almost 2 years with good control until he developed antibodies and became symptomatic again. He sees an Adult GI who is the chief MD of the practice and was uncomfortable prescribing the drug. Both of my kids are the first patients on Stelara for both of their MD's. She initially wanted Trevor to start Humira, but we begged her to prescribe the Stelara because Liv was doing so well with it. After some research on dosing, ect... she agreed to let him try it. I was thrilled when our insurance company agreed to cover the drug for both kids and so far so good. Symptoms have been slowly decreasing (Stelara took 7 months to work for Liv) and he has had zero side effects with it. His labs have been normal, except for some ongoing anemia that developed when he was on Cimzia and he continued to bleed on and off for the entire time...the only thing that stopped the constant bleeding were steroids. Since starting Stelara, he has been able to wean from steroids...bleeding has stopped. I am keeping everthing crossed for both of my children that Stelara contines to work... So happy to hear such great updates from everyone!!! Happy New Year!! Kim

Since there aren't any kids on Vedo on here.... I'm stuck looking at the adult thread. You all know how kids handle this disease compared to adults. It's all complain, complain, complain on that adult thread. I begged for Stelara for a year... our GI wanted Vedolizumab since issues were in large bowel. As with Stelara, Vedo is slow to work... but it's hard not to have any support on here.

Way to go Livilou!

Stelara is still doing the trick for Gus!

Puberty is (finally) in full swing. He has grown 4" in 15 months, amazing for him. He has a 24/7 appetite, pimples, and a voice that cracks. Gives me warm mommy fuzzies.

He managed to make it through his entire freshman year, rough schedule, higher expectations, stress and all...without a flare! Can I just say A-M-A-Z-I-N-G!!!

He will be on the cheer squad again next year, as the lone yell leader. Cheer has been awesome for him. It is something physical that he CAN do and it provides an wonderful opportunity for social inclusion. They just finished pink week...not easy for the male member of the group. He won the spirit award for wearing his "Tough Guys Wear Pink" shirt and dying his hair pink. Love it when he beats the girls on their turf! They leave for cheer camp on Monday. Can't wait to see the new moves. :dusty:

Gus is still the only local kid on Stelara for Crohn's. The Peds GI docs have all turned their attention to Vedo instead. I really hope those kids find the same success as Gus has had.

In fact, life has become so "normal," I'm starting to look into forming a local support group. The closest one to us is over an hour away. We'll just have to wait and see how that goes.

Happy summer to one and all.
Cheryl VT

That is so amazing to hear!!!
Yay for good news! I hope he has an awesome time at cheer camp!

What wonderful news!! Love hearing about kids doing well on new meds!

PS - Love the picture! Gus is so grown up!

Another year, time for another update.

Gus was a "little guy" so for long, it has sort of taken me by surprise that he is really maturing physically and much closer to "full grown adult" size than little kid size. He is now 4" taller than me...and to think I was worried he wouldn't ever cross the 5 foot mark. A junior in high school now, he was telling me that he was thinking about trying out for football next year. I think that is more an indication of how good and how strong he feels...not that he really wants to line up on the grid-iron. I think what he really wants, in his heart of hearts, is to prove to his long time friends that he is able to keep up with them now. All of those friends from Kindergarten who grew taller, and stronger, and faster, and who left him behind when he couldn't keep up anymore in 4th grade. The real friends have remained by his side and I remind him to not worry about the rest.

Stelara update. Stelara is still doing the trick. He has been on 45mg for 4 years now. Though it seems like it is not holding out for the whole 8 weeks any longer. Stelara was approved for Crohn's in October at 90mg for adults. So, we are finally going to be using Stelara "inside the lines" for the first time. He is moving to 90 mg every 8 weeks and had his first 90 mg dose last week. Fingers, toes, and shoe laces crossed we can continue for a long time to come.

When we visited his GI doc, even the doc was surprised at how quickly Gus' body is maturing now that his body can function normally. We even had a nice chat about things to consider for Crohn's patients when thinking about college. Another note, Gus is just on Stelara, nothing else. The GI doc was sort of scratching his head about that becuase he would normally prescribe something to help reduce the development of antibodies too...but no, nothing else. Gus is doing very well with just the Stelara.

Wondering how all of your children are doing? Would love to see some updates:
Brian'sMom, kimmidwife, CarolinAlaska, Gmama, DustyKat, caroline, crohnsinct, livilou, Farmwife, and all...

Great to hear how well he is doing! Caitlyn failed Entyvio and is possibly going to try Stelara next. We will find out tomorrow. We are going to see if she qualifies for a research study. If she does not we will go ahead with Stelara.

kimmidwife said:

Great to hear how well he is doing! Caitlyn failed Entyvio and is possibly going to try Stelara next. We will find out tomorrow. We are going to see if she qualifies for a research study. If she does not we will go ahead with Stelara.

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Kim,

I will be saying prayers for Caitlyn's success. :dusty: I am thankful everyday that Stelara has worked so well, and for so long for Gus.

Cheryl

Thanks for the wonderful update. Glad it has lasted so long for Gus! Is there any particular reason he wasn't put on 6MP or MTX to prevent antibodies? Just curious.

Maya142 said:

Thanks for the wonderful update. Glad it has lasted so long for Gus! Is there any particular reason he wasn't put on 6MP or MTX to prevent antibodies? Just curious.

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He was on 6MP and MTX with Remicade and Humira, but neither did the trick in preventing the antibodies. Honestly, when we started Stelara it was so far outside the box, I think his doctor was really just taking a stab in the dark and focused on the Stelara rather than the usual protocol for biologics.

Gus' GI doc has always said he is happy to share our experience with any other docs who are interested in floating the idea themselves. Let me know if you'd like the contact information for your doctor.

Cheryl VT

Hi Cheryl, I'm so happy to hear how wonderfully Gus is doing. Jaedyn is 4 years post diagnosis this month, but has never done great. Still stuck on the first immunologic they prescribed during her first year. We're having a rough time, but will have scopes and a pill cam this week and we hope they change tracks finally after that.

CarolinAlaska said:

Hi Cheryl, I'm so happy to hear how wonderfully Gus is doing. Jaedyn is 4 years post diagnosis this month, but has never done great. Still stuck on the first immunologic they prescribed during her first year. We're having a rough time, but will have scopes and a pill cam this week and we hope they change tracks finally after that.

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I hope all goes well with the pill cam. Gus' scopes never revealed where or how bad his strictures were. The pill cam was a huge blessing for us...not because it revealed anything more than the scopes, but because it got stuck and they had to go in and surgically remove it. That was our first real break after about four years of little to no progress. That was the moment when all of the doctors finally saw what I knew all along...something was very wrong...and it was. They had to remove 35cm of his intestines at that time. It will always be one of the "best days" in our Crohn's story. Strange, but true.

Prayers for Jaedyn.
Cheryl VT

What a fantastic update, I was just wondering not too long ago how he was doing. Glad the stelara is still working. Jack is now taller than his friends thanks to remicade. He also made the comment that he could have probably played football this year after having to quit his freshman year since he was just too small.
I bet you also get the utter shock and surprise from people who have not seen him in a while about how much he has grown and changed.

kimmidwife,
How did the pill cam go today?
Cheryl VT

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.

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

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!

kimmidwife said:

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.

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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

Maya142 said:

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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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

CarolinAlaska,
How did the pill cam go today?
Cheryl VT

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.

vtfamily said:

CarolinAlaska,
How did the pill cam go today?
Cheryl VT

Click to expand...

That was on Thursday. It was disappointing, because we don't think it got through her ileum before we ran out of time.

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?

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.

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

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
“diet” doesn’t not work in kids
So gluten /milk/meat etc free diets don’t work kids lose weight

Entocort for 10 days really isn’t 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 doesn’t 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 it’s 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 children’s
Children’s of Philadelphia
Cincinnati children’s

They can do records review

Kids disease is much more agressive than adults
It’s changes over the first 10 years of dx
Adults doesn’t 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

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.

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!

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.

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.

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!!

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

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.

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!

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. :ghug: