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


 
01-27-2014, 03:13 PM   #91
vtfamily
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Is your son still on total EN thru G tube? My son is scared he'll be doing the ng tube forever. Its in his nose-stomach. Since July 25th He was doing it every night... and this weekend he vomited up the tube sat... its sun morning, he's kinda just refusing to put it back in. He'll be 14 Feb 18th and I think he's starting to become stubborn with it all.
Oh those stubborn boys! FYI...Gus will be 14 in April.

Except for a hospital stay, Gus has not had an NG tube. He did have a PICC line last year for about three months. The purpose was to give his gut TOTAL rest, so he was not allowed anything but water by mouth at that time.

Gus eats what he likes and as much as he can. He also has, and has had for about two years, a g-tube. It is a tube that was inserted directly into his stomach through the abdomen. Until very recently, he ran the feed overnight. Our current method is to use a large syringe to push the feed in quickly at breakfast and dinner. He prefers that to being connected to tubes overnight.

Gus genuinely L-O-V-E-S his g-tube. It is an effective way to give him the elemental nutrition and (more importantly) calories. He especially likes that liquid medicines and contrast for CT Scans and MRIs can go through the tube, instead of drinking it.

The g-tube affords him plenty of privacy because it is covered by his clothes. No one has to see it. It does not interfere with his favorite activities: swimming, skiing, biking, roller coasters, etc...

From your description, it sounds like your son may also need a period of complete gut rest. You might want to discuss a PICC line and TPN with your doctor. It does take some care. It can be a little scary since the line goes directly into the veins, but it will give his gut a chance to heal and get a better picture of the problem areas. Gus was able to ski with his PICC line in last year. We found a cover that allowed him to take showers and swim too. The worst part for your son will be not eating anything while he is on the TPN. The body is fed, but the mouth and stomach still want to be satisfied too.

Hope this is helpful. Maybe the boys should compare notes. LOL
Cheryl VT
01-27-2014, 03:22 PM   #92
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I am watching this closely knowing we are currently out of options approved in Canada.
Remember, Stelara is still "off-label" here in the U.S. too for use with Crohn's. Many insurance companies are not approving the off-label use yet. It is in clinical trials for adults, but I don't think trials are under way for kids yet either. It is a wonderful and rare moment when people like us get the approval for off-label use.

Is Stelara approved for psoriasis in Canada?

Your daughter might also benefit from a "total gut rest" conversation with your doctor. Wouldn't it be wonderful if complete gut rest with TPN running in a PICC line could calm her inflammation enough to find one or two areas that could be addressed with surgery or balloon dilation!?

Best wishes to you.
Cheryl VT
01-27-2014, 05:07 PM   #93
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We did the TPN in the hospital with a PICC. Took a few weeks to start working. We stopped TPN before she was discharged but kept the PICC for about a month after. Had a hassle to get it flushed, but better than doing it by IV. TPN in IV was painful!

Based on the amount of blood she has back now in her stool we may not have much choice. Dani doesnt fight me on much but her and no food is the worst for her. She would opt for the blood any day before you take away food. brian's mom, I hear you on the tube, dani flat out refused it with her doctor said she won't even consider it. This is where their age is to our disadvantage.

I'm going to check if Stelera is approved in Canada for anyone or anything. Thanks for all the info VT
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01-28-2014, 02:31 AM   #94
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Agreed that it is gut-wrenching (no pun intended) to watch your child go through a period of being deprived all foods/drinks by mouth. Last year was our first experience with that (for more than a three day bowel prep session or surgical recovery period). It was difficult, but totally worth it in the end.

I learned to do the PICC line maintenance pretty well. It was easier than I thought, once I got used to it. I even figured out how to take a "repair-Gus-kit" skiing with us, just in case. Still, there are those times when the line just won't flush. I established a protocol with our clinic to slide us in whenever that happened.

We have a friend who was on total gut rest and TPN for the better part of eight years...yep, I did say eight years! She has been a huge encouragement for us. I figure it she can handle it for years, then we should be able to figure out how to manage a few months. At least I can send Gus into another room at meal time. She's the mom and has to cook the meals...no escape from the sights and smells.

Gus wrote a personal narrative earlier this year about his PICC line/TPN/gut rest period. I'll see if I can post it next...

Cheryl VT
01-28-2014, 02:34 AM   #95
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This is Gus' personal account of his experience. Feel free to share with your teens!

"My Doctor’s Evil Orders" by Augustus VT

Have you ever been told that you are not allowed to eat any food, not even a piece of gum? Do you suppose that you could go one week, or two weeks, or even a whole month without eating a single bite of food? Imagine sitting at the dinner table, while your family cavalierly enjoyed eating your favorite dishes, but the only thing allowed to cross your lips is plain, bland, empty, boring water! This happens to me frequently because I have Crohn’s Disease. Crohn’s causes horrendous pain in my intestines. That is why I eat only small portions of food at any meal. On top of all of that, there are times when my doctor will order me to eliminate food altogether. I call this “my doctor’s evil orders.”

In February 2013, I sat in Dr. Kim’s office, pretending not to listen, while he talked about the seriously grim state of my gut. Every cell in my body froze in horror when I heard Dr. Kim’s plans.

Dr. Kim said, “Gus needs surgery. However, his intestines are too inflamed and the surgeons won’t operate until the inflammation is resolved.”

My mom asked, “Since the medications aren’t working, what are the other options?”

“We’re going to insert a P.I.C.C. line in his arm. It’s a feeding tube that goes directly into the bloodstream and will give him the nutrition that he needs, bypassing the digestive system, so that his gut will have a chance heal. He won’t be able to eat anything, during this process,” Dr. Kim replied.

My voice cracked as I asked Dr. Kim, “How long do I have to go without eating? I can have hard candies to suck on at least, right?”

Dr. Kim replied sympathetically, but firmly, “Indefinitely. You cannot eat anything. You’re only allowed to drink water. I’m sorry, hard candy and gum are out of the question.”

I sat there in stunned silence. I felt like a condemned man, being dragged into a cold, dark dungeon.

The P.I.C.C. line was inserted few days later, on February 22nd, and I stopped eating food. By the end of the second week my desire for food was overpowering. I wanted food! Every single day, I begged my mom to allow me to eat. She felt bad for me, but did not budge, not even a little. This went on through March and most of April. The light at the end of the tunnel became brighter as each day passed. April 22nd was the day I planned to ask Dr. Kim for the freedom to eat again. Oh, yeah!

I never had a chance to ask Dr. Kim to release me from his “evil orders” because I went into septic shock and was admitted to the hospital on April 17th. I was completely incoherent for two weeks and did not care about anything, especially food. The good news was that my mangled intestines were healing. I recovered from the infection and the surgeons were able to remove the significantly diseased section of intestine on May 4th. A week went by and I started to feel better. I wanted to eat! I spent the following week in the hospital pleading with my mom, every doctor, and every nurse for food. They all said NO! It was torture! I left the hospital under orders to wait three more weeks before I could taste food again. I snapped at the two week mark. I secretly stole hard candies and bits of bacon! They were like a slice of heaven in my mouth and I savored every moment. May 14th, 2013 was a joyous day for me. It was the day I was told that I could eat food again. Each bite of the meat tortellini I had for dinner that night felt like the first trickle of hot chocolate going down my throat and warming my tummy on a cold winter’s day. It was pure happiness.

It is hard to believe that I endured three months without eating any real food. The only way I survived this ordeal was by drawing closer to God. Food felt like a reward. Knowing that the Holy Spirit is in my heart, protecting me, was the true reward. I wondered if I was being punished. In truth, He revealed Himself as a truly wonderful God. I would have become depressed and gone into a dark place inside myself if I did not have faith in the Lord. His unfailing love and guidance lit my way and enabled me to endure “my doctor’s evil orders.”
01-28-2014, 06:46 AM   #96
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I'm going to share this with Dani. She will so understand this!
01-28-2014, 12:09 PM   #97
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He's how old?! What a great writer!
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01-28-2014, 12:47 PM   #98
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vtfamily - Your son is an amazing writer! I got choked up reading about his experiences and I think it would be awesome to share his writing with as many kids (and parents) as you can. Maybe he could start a blog or submit his story to your local newspaper. He's great!!
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01-28-2014, 12:48 PM   #99
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Oh My Goodness! What an amazing young man you have there. That needs to be published somewhere
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01-28-2014, 04:28 PM   #100
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Thanks all. He is 13 yrs old. It was an assignment for his 8th grade English class. They were instructed to write about doing something that they did not think they could do. Length and all are part of the parameters.

When he was finished, I was pretty proud of him and thought if he could put a few more of these together, then we could turn it into a book. He shared it with his GI doc. He appreciated it too. With your encouragement, I'll keep at it with him. I think his next "chapter" could be something like "So This is What Normal is Like" or "Friends Getting to Know Me Again, Not Just the Sick Kid."

There should be chapters from the rest of us too. My personal mommy guilt laden chapter would be about the year he spent trying to tell us something was wrong and how we fell back on parental favorites like "this is what we are having for dinner, eat it or go to be hungry." His response still rings like an echo that won't go away in my memory, "But I Don't Like Dinner." He was into his Crohn's treatment for a couple of years before I realized that my precious pre-schooler was doing his best to tell me something was really wrong. Helping him is easy. Forgiving myself isn't. Focusing on what must be done now and looking to the future helps though.
01-28-2014, 06:21 PM   #101
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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!
01-28-2014, 07:51 PM   #102
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I just had my Dani read Gus'piece. She really liked it!
01-28-2014, 10:38 PM   #103
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What a great story - he should definitely continue writing !
Thank you for sharing.
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01-29-2014, 12:11 AM   #104
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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!
Made me laugh! Thanks
01-29-2014, 10:54 AM   #105
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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 am so using this! Absolutely true!
01-29-2014, 11:58 AM   #106
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What a great writer. Most adults cannot articulate the written word that well.

Yes CIC, I would read that book.
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02-01-2014, 08:56 AM   #107
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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
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Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
02-01-2014, 11:53 AM   #108
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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
02-01-2014, 11:17 PM   #109
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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.
02-02-2014, 12:00 AM   #110
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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.
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
02-19-2014, 01:25 AM   #111
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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!
02-19-2014, 04:59 AM   #112
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Wow! That is fabulous Cheryl!

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



Dusty. xxx
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02-19-2014, 02:20 PM   #113
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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!
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02-19-2014, 05:30 PM   #114
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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.
02-20-2014, 03:38 PM   #115
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Great news. Long may it continue!
06-24-2014, 11:55 PM   #116
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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.
06-24-2014, 11:57 PM   #117
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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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06-25-2014, 01:09 AM   #118
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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.
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
06-25-2014, 08:01 AM   #119
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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!
06-25-2014, 09:29 AM   #120
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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!!
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