Decisions about Remicade (and more tests?)

[kernelmom3]

Well today we had our "first" Crohn's visit with the GI. It was really just a formality since we've pretty much heard it all in the last four weeks and two hospital stays. We've decided to have DS start Remicade because we want a med that will work quickly for the inflammation and the fistula/abscess. I just HATE hearing the words "lymphoma" and "leukemia". The GI (and everything I've read) said the risk was very low, but the risk of perforation during colonoscopy is something like 0.2% and THAT happened. I guess I just need positive reinforcement that I'm doing the right thing going right to Remicade. I feel like we don't even have time for a second opinion because his inflammation is so severe and then you add in the abscess and the fistula and it just feels like we need to get things going SOON.

The doc also mentioned he needs an eye exam (?) and a bone density scan. Anyone here have eye problems?! GI mentioned we'll see what the bone scan says but DS may have to see an endocrinologist at some point if he doesn't grow at the rate he should. I was kind of shocked about the growth thing because he's always been on the low end of the chart (15-40%) but he's never had a dip. Anyone here go to an endocrinologist? I swear, just when I think I have some kind of understanding and even acceptance of this crappy disease (pun intended), new and awful stuff keeps coming at us!

 

[Clash]

I know it can feel like such an overwhelming amount to take in.

Since CD can cause malabsorption then there is a concern for kids and stunted growth or growth failure. The plus to this is generally the child's bone age will be below their actual age so that they have a window to get the CD inflammation under control which stops the malabsorption and allows them to catch up. Several kids here have been to an endocrinologist but I'm going to tag jmrogers4 as they have recently dealt with one.

There are a lot of EIMs(extra intestinal manifestations) that can come with CD. My son has an joint EIM, spondylarthropathy, and an eye EIM, episcleritis. It is best to see an ophthalmologist that is familiar with the eye trouble that can come with CD. My son's episcleritis doesn't cause permanent damage but some can without treatment, like uveitis.

It's usually best to just cover all the bases of any issues your son has complained of with the doc. I can understand the worry, it seems as if the other shoe is always dangling. But many kids here have reached remission and are leading healthy lives.

Remicade was my son's first med and the listed side effects really scared me but his turn around was so complete(symptom wise) after the first infusion that I no longer looked at the treatment with fear.

Sending hugs!

 

[my little penguin]

^^^^ yeah that
Crohn's can rob the kiddo of growth potential which is why so many of us keep our kids on formula plus food and meds . DS went from the 75% for height and weight down to below the 25%. After remicade plus formula he has gotten back on track. He still continues to drink shakes everyday after three years .
EIM are evil that can vary for each kiddo.
No eye stuff from crohn's for DS ( he has other allergy eye stuff though).
He also has EIM of joints (juvenile spondylarthritis associated with Ibd ).

Remicade scared me as well but after seeing the improvement( DS finally stopped chronic vomiting as well as other stuff) it made it easier.
Big hugs
Hope he gets relief soon and stays there

 

[myboy12]

My son has experienced an eye EIM in the midst of a bad flare that sent his sed rate up to 45. We have not experienced any since starting Remicade in May. He has put on over an inch in height, but no additional weight at this point, maybe because he is growing. His blood work is improved (normal crp and sed rate of 19), but will have a good handle on the full effect of the remicade when we do an endoscopy and colonoscopy in December.

The thought of starting Remicade caused my husband and I to loose a lot of sleep, but to see him healthy, eating and growing makes it worth it. Hang in there!

 

[Mehita]

IMHO, I think you're making the right decision, especially given the fistula and abscess added to the mix. Admittedly, I'm biased because we were in your spot nine months ago and I've seen how wonderfully Remicade has worked for my son.

Seeing an Opthamologist is pretty standard for IBDer's. Just a precautionary thing. Turned out my son needed glasses, so now it's an annual appt for him anyway.

We also saw an endocrinologist. It was fascinating! The bone scan (at least the one we did) was a simple hand x-Ray, but it told us that my son's chronological age and bone age matched up, so he's always going to be on the small side and take after my family. We also found out where he was in terms of puberty and got some predictions of what his adult height will be. There isn't anything the endocrinologist can do for my son, but just getting all the information she provided was worth the appt. She did say some things about growth that confirmed what his GI had said (because of Celiac, he's going to make up lost years in his early 20's), so that was somewhat comforting to get the same message from two different doctors.

I know it's all overwhelming. Mentally, if you can accept this as your new normal and just go with it, it gets easier.

 

[Jmrogers4]

Thanks for the tag Clash.
For what it's worth remicade has been our wonder drug and has been the only thing that has allowed my son to grow/gain weight.
We all hate hearing the scary side effects of the meds and personally have become very good at compartmentalizing and scary side effects go into a little box and the positives are front and center. He feels great, looks good and is living a normal teenage life.
They will track growth and weight gain and if those things do not improve a referral to endocrinologist is generally in order to rule out any other issues. The bone scan done on my son showed he was almost 2 years behind so even though he is 15 his body is 13 is the way I think of it.
Jack had fallen another line down on the growth charts between our first visit to endo and the second so they did the full growth hormone testing which consisted of taking blood about every 1/2 hour over a 4 hour period. First sample is a fasting blood and then they give a shot of a protein and continue to sample every 1/2 hour towards the end they give a shot of glucagon and continue to sample. Jack's showed he had enough growth hormone even though they were at the low end and after 3 years of virtually no growth it did ease my mind that there was not something else we needed to worry about as well but was caused by disease activity and just another check mark that we had made the right decision in moving on to remicade (I only wish I would have done it earlier so he wouldn't have missed so much growth).
We are still working on catch up growth and he is still behind his peers but it is becoming less noticeable every day. He has grown nearly 4" since January of this year when he started remicade and gained 22 pounds so for us it all amounted to getting the disease under control and then the growth happened although not right away. I think it was a matter of his body healing before growth could happen.
It's good that your GI is being proactive and really wants the whole picture. We waited a long time for something to happen and it was always we should see growth by next appointment, his labs were always normal so it really taught us we need to look at the bigger picture and for us no growth equals disease is not under control.
I don't know what we will do to measure disease activity when he is done growing.

 

[Momtotwo]

My son sees an eye doctor regularly to check for iritis and uveitis. I'm sorry your child needs Remicade but it is probably the best option for the little I know about it. I know what you mean about the risks. When they throw out the "only" 1 in 8,000, my first thought is, "How many kids have Crohn's at this young age? We already beat rare occurence stat." But the risk is low and the risk of disease is greater. It's scary but necessary to choose the biologics at times.

 

[Jenn]

Yes, it's so overwhelming, so sorry. I hope Remicade gets him feeling better. It's an amazing medication. You probably need a TB test before starting it too. The hip/pelvis bone density scan is routine: IBD affects nutritional absorption, so they want to see if there's any impact to bone development from low calcium levels. My son is checked every couple of years.

Yep, in addition to the GI 3x/year, my son sees an endocrinologist 1x/year, an opthamalogist 2x/year, a dermatologist 1x/year in addition to his pediatrician 1x/year (not counting illness!). Oh, and expect bloodwork. I think early on it was every few weeks, now we are 4x/year. The endocrinologist usually does a hand x-ray to determine bone-age and any growth delay.

 

[LittleHero]

My daughter goes to a endocrinologist. She has adrenal hyperplasia which has stunted her growth. They say she will be about 5'2" as an adult. Her adrenal hormone levels were super high. She gets monthly injections to help with it. She also has Crohn's of the skin. She gets lesions, fistulas, and drainage. She started Remacaid this August and is doing much better!!