Update . . . doctor brought up the "B" word!

[buchanaj]

DD had a GI appointment today. He was happy with her weight gain (over 10 pounds) but disappointed that her height has remained flat. He taking her off the Prednisone dusty and switching her to Entocort. I'm happy about that as I'm not a fan of the Prednisone side effects. She will continue the Entocort and Pentasa for the next couple months and then we'll reevaluate. If the inflammation is still active, the GI wants to move her on to the biologics. Just the word "biologics" makes me shiver. DD had blood work done today (including testing her vitamin levels) and we should get that back next week. In addition, we will be scheduling a small bowel follow through at the hospital within the next couple weeks.

If you had told me a year ago that our DD would have chronic illness and we'd be facing some daunting decisions regarding her treatment, I'd have thought you were crazy. But . . . here we are. I'm hoping and praying that her inflammation subsides and she starts growing upward over the next month so we can table the biologic discussion for a while. However, I know I have to be prepared to make that decision when it comes . . . .and frankly I'm scared. I'm terrified that I might do something to my child that will come back to haunt her in the future. Today is an "office door shut" day . . . . I need to weep as needed. Tomorrow I'll be strong but today I need to be a little weak.

Jennifer

 

[Salad_Shooter]

I'm sorry you're going through this, and doubly sorry DD is. I don't have kids so I cannot even fathom how this all makes you feel. All I can do is join you in prayer that things improve enough she doesn't have to use biologics.

And yes, cry. Get the poison out. You're due.

 

[ronroush7]

I am very sorry for what you are going through. Sending support.

 

[Madhu]

I don't have kids but I have seen my husband suffer from this disease. Wouldn't wish this on anyone, let alone children. I hope everything works out for you soon.

 

[crohnsinct]

It took my daughter a good long while to grow. She gained weight first and then the height followed but it took at least 6 months to a year for height to start.

My younger daughter was on Enocort but it didn't work.

Remind me again...your daughter has UC right. I ask because Pentasa is usually useless for Crohns.

Di doc say why he didn't want to step up to immunomodulators? If you move to biologics you will probably be using them anyway so a lot of docs will step up and see if that controls disease and if not then move to biologics and then at least you already have the immunomodulator in the mix. Combo therapy while on the anti tnf's increases durability by suppressing antibody formation.

I am sure you have read the pro Remicade and Humira threads in the parent section. They really are not that bad. They actually have a more palatable risk profile to the immunomodulators. They also have higher success rates and work well for fistula's and peri annal disease.

My older daughter has been on them for 4 years now and no increase in illnesses what so ever. She is actually the healthiest person in the house.

We have been trying to get my younger one to remission with just methotrexate and Entocrot and we are at the year mark and will probably be moving to Remicade soon and if I am being honest I can't wait. I

 

[buchanaj]

DD has Crohn's with ileum and colon involvement.

I'm certainly going to talk with him about the immunomodulators. I didn't bring it up today because I honestly think I went into semi-shock when he mentioned biologics. I knew that was a real possibility but to actually hear him say the words . . . I don't know . . . it just caught me off guard.

We have a little time to think it over. We will see where she is in a couple months. That gives me time to research options and wrap my head around the good and bad with these drugs.

I guess what scares me more than anything is . . What if I'm setting my daughter up for something horrible by allowing her to take these drugs? That's what keeps me up at night.

Thank you all for your input. It is invaluable.

Jennifer

 

[crohnsinct]

OK then. With Crohn's there is no surprise the Pentasa isn't doing anything and with the dumping of Prednisone I would be watching her really carefully. I know some people have good luck with Entocort but it is also not as successful as Prednisone. It hardly touched my daughter's disease.

Have you tried EEN? It worked wonders for my girls. So far it is the only thing that can wrestle my younger one's disease. Maybe if yo could get her nicely healed with EEN, you can hand Pentasa a better situation to try to maintain.

I get what you are saying about the drugs but you also have to think about what you would be setting her up for if you don't get control of inflammation...fistulas, abscesses, surgery, colon cancer.

My daughter was in ICU fighting for her life at dx because apparently she had Crohn's for about two years and we didn't know it. It was happily eating away her insides and within two weeks of her obvious symptoms starting we were admitted and in ICU.

Complications from uncontrolled inflammation are real and a guarantee. Risks from the drugs are not guaranteed.

Don't forget that properly treated disease gives her back a normal childhood.

I know it is hard. No mommy guilt. You are doing the best you can for her!
She is lucky to have you.

 

[CarolinAlaska]

I was scared to tears my first six months after J's diagnosis and the meds scared me too. Nothing you do to stop this disease is going to hurt her more than this disease will do if you do nothing or too little. You'll have to wrap your mind around these drugs eventually because the steroids might help, but they can't be used long-term, therefore cannot keep her in remission. Give yourself time to get a hold of yourself, then you'll probably have to take the bull by the horns.

 

[malorymug]

I got some bad news about my son today too and I am weepy too. Sorry. This is a great place to tell us how you feel and vent and cry. Folks here understand what you are going through.

Get this disease under control and be as agressive as possible because it does horrible and irreversible damage.

 

[Mehita]

My son is one of those kiddos who was untreated and undertreated, in part due to my fear of the drugs. He was started on Pentasa (for Crohn's), which wasn't strong enough, and ended up in such poor health he had a resection at the ripe old age of 12. Then he was put on Azathioprine, which also wasn't strong enough and ended up with a fistula and abscess. He was finally put on Remicade and has been in remission ever since.

I completely regret not getting him on Remicade sooner and am convinced that had we treated his disease more aggressively in the beginning, he would never have needed surgery and have been hospitalized so many times.

I was scared and it was my fear that prevented him from getting better. It wasn't until he hit rock bottom that I realized... I don't even have words for it. Three years later, the guilt is strong as ever, especially when I see how happy and healthy he is now.

I know the drugs seem big and ominous, but so is Crohn's disease. Don't let Crohn's win. Hugs to you, hon. It's not easy, but don't let Crohn's win.

 

[crohnsinct]

Mehita: Thank-you for sticking around here and for always sharing your story. I can only imagine the pain it causes every time you have to relive it for us and I appreciate that you do that!

 

[Farmwife]

My girl was only 3 at dx. As sick as can be and I wanted to try more" natural" stuff first.
Like Mehita , it was my fear. She was and is still so young and on and on it went for the reasons.
Then entered arthritis and the choice was pretty much made for us. She would have been bed bound and hospital bound if we hadn't started something sooner.

Once we started aggressive treatment she started being the little girl she should have been all along. It had been so long that I didn't even know what normal would look like on Grace.
Grace still had a ways to go but I'll never let myself get in the way of her best chance at a normal life again.

Hugs to you both. It's never easy and were here for you!

 

[Maya142]

I was terrified by biologics. With my older daughter, we agonized and agonized before putting her on them. Once we did, she got better quickly. She went from being in constant pain and in a wheelchair, to playing soccer and being a normal teenager.

Then when my younger daughter was diagnosed, we agonized and agonized all over again before finally putting her on them! She also improved - more slowly - but if we hadn't put her on them, I don't know where she'd be.

One rheumatologist told us that once you put your kiddo on them, you never look back. That has been true for us - we have never regretted putting the girls on them. My only regret is not putting them on biologics sooner - with both girls, we wasted a year trying other things before finally agreeing to anti-TNFs. They have had NO side effects with anti-TNFs besides being tired after Remicade infusions. No increase in infections or anything like that.

They both have needed other meds in addition to biologics- immunomodulators - to control their diseases. Honestly, those meds scare me more their biologics. They have been on Imuran, MTX and Arava. They had more side effects with immunomodulators than with biologics - nausea, hair loss, fatigue, dizziness. But they need them and I don't regret putting them on MTX/Imuran either.

There's a great presentation that talks about the risks and benefits of IBD treatments: http://programs.rmei.com/CCFA139VL/

At some point, the disease becomes much scarier than the meds. Good luck with your decision!

 

[CrohnsDadNJ]

I feel for you. We are going through the same emotions you are going through for our child. But please, as others have said, do not think of steroids as a long term solution or put off biologics. We have been reading as much as we can find and speaking to multiple ped GIs on safety profile of IBD medications, and have gotten comfortable. I posted the links below in another thread, but here they are again. Hope they help.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3938311/

http://programs.rmei.com/CCFA139VL/ (thanks to Maya142 upthread!)

http://www.tandfonline.com/doi/pdf/1...38.2012.630388

http://www.scholars.northwestern.edu...5980&u_id=4135

 

[my little penguin]

Ds has been on biologics since age 8
He is 12 now
Honestly far less issues with biologics than immunosuppressants.
He has been in the combo for two years now
Biologics are priceless in my opinion
You don't realize how sick your kid really has been and for how long until they start the right med in Ds case this was biologics