Expert Q&A

A: Thank you for your question. I am glad that your son is feeling better, but I you are correct, true clinical remission (absence of symptoms) is the first goal of therapy. Sounds like he is responding to the therapy both by lab data (normal CRP) and symptom improvement. I am not sure how long ago he received the third dose but, he should stay at least as good, if not further improve by dose four. This is important since that is the first “maintenance” dose and is likely scheduled eight weeks after the third. Likely, your son’s gastroenterologist will be checking an infliximab level then to assure the dose is optimized for good disease control going forward. Ultimately, the next goal of treatment is to assure healing of the lining (mucosa) of the bowel. This can first be measured with a stool test for inflammation (calprotectin) and later, by repeating imaging with an MR enterograpy (MRE) or repeat colonoscopy. Studies have shown that healing of the mucosa is associated with our best long-term outcomes, so it is very worthwhile to look for this. Also, if symptoms persist or recur, such follow up testing would help clarify whether active Crohn’s disease is still contributing. Hope he is feeling back to himself soon! hide answer

A: Surgical intervention is a big step at any age so congratulations on being proactive in helping him (and therefore you!) through this. First and foremost, these are great questions for you to ask your surgeon and their team. I assume you are referring to an ileocecectomy (removal of a portion of the last part of the small intestine along with the first part of colon = cecum). This is the most common surgery performed on those with Crohn’s disease. Accordingly, your son’s team likely has significant experience with this and can assist answering your questions. The hospital may also have a Child Life team and other supports—feel free to use them to get yourself educated and your son educated at an age appropriate level. There may also be other pediatric patients and their families who have been through the same experience who have volunteered to speak to others and share experiences with the Power of Two program. Feel free to take advantage of all such resources. Most commonly, this surgery is now performed laparoscopically (minimally invasive surgery) which allows early hospital discharge and much less post-operative pain than in the past. The surgical team will lay out a plan for return to full activity which will slowly occur over a few weeks. Also, keep in mind that while the surgery will remove the bowel already damaged by the Crohn’s, it does not cure the condition and there will need to be a plan to prevent disease recurrence after the surgery. So be sure to speak with your medical team so that you are fully aware of the post-operative plan to prevent disease recurrence. Also, in addition to using medical therapy to prevent recurrence, it is recommended that a colonoscopy be performed within 6 months of the surgery to assure that the plan is effective and that Crohn’s inflammation has not recurred. Best wishes for a rapid and full recovery! hide answer

A: Thank you for the excellent question. It looks like he started infliximab around age 15 years which is a very common age for acne so this should not be seen as a surprise. However, your concern that this has persisted to this degree is noted. Traditionally, the main medication associated with acne is steroids but it looks like his medical team has done a great job staying away from that. Whether he is receiving originator infliximab (Remicade) or a biosimilar should not make a difference here. Dermatologic issues can be seen with anti-TNF therapy and while acne is not the most common, it is a consideration here. Some of the newer biologics approved for Crohn’s affect the skin to a much less degree and he should be encouraged to have a discussion about this with his team. Additionally, since you discuss this as cystic with the need for removal from his buttock, he should at least confirm that this is truly acne and not a condition called Hidradenitis Suppurativa (HS) which is sometimes associated with IBD (especially in cigarette smokers!) and would require a very different approach. hide answer

A: I hope the Stelara is working and that your daughter’s Crohn’s is in deep remission. You are describing a local site reaction, and these can be quite common. You are correct that this may be from the non-active ingredients (we call these excipients rather than fillers) or it could be a local reaction to the medication. One non-drug interventions that helps with this is to assure that the site of injection is rotated from dose to dose. Additionally, we have had great success with “conditioning of the injection site” by applying an ice pack for 10 minutes prior to the dose. Regarding medications, if it is not painful, she may not need the Tylenol and the Zyrtec or a Claritin may be enough to allow her to stop the Benadryl which often times causes drowsiness in adolescents. hide answer

A: The PROTECT study was a prospective, multi-center, NIH funded study of newly diagnosed children and adolescents with ulcerative colitis (UC). Important findings of this study included the fact that 40% of pediatric UC will be maintained by mesalamine. Which means 60% of children and adolescents with UC will need biologic therapy to maintain steroid-free remission of their UC. In truth, you daughter is already on the most toxic medication we use for UC, that is, Prednisone! In addition to anti-TNF therapy such as Humira or Remicade, Entyvio (vedolizumab) may be an option for her. This is administered intravenously like Remicade but the main target is the proteins in the bowel which assist movement of inflammatory cells from the blood stream to the intestine making the effect more specific to the bowel (“gut specific”). In addition to decreased systemic effect and being a more targeted therapy, there was a head-to-head comparison trial of Entyvio vs. Humira and Entyvio showed some superiority in this trial (called VARSITY). Officially, Entyvio is approved for ages 18+ but there is substantial pediatric experience and in light of the findings in VARSITY, we have had good success getting Entyvio for our less than 18-year-old patients. hide answer