Halloween Happenings and IBD: Advice from GI’s and parents of pediatrics

Halloween is extra scary this year for all the wrong reasons. It’s especially challenging for children with IBD who are immunocompromised. This week on Lights, Camera, Crohn’s I share input and advice from several gastroenterologists about everything from trick-or-treating to flu season, along with the game plan four IBD families have in place for the holiday. Much like anything with this pandemic, we’re trying to do the best we can to live, while also staying safe.

As an IBD mom myself, I’m still conflicted about how best to celebrate Halloween with my kids this year. We have their costumes, and the house is decorated festively, but I’m extremely hesitant to allow my 3.5-year-old son to get candy from strangers in the middle of a pandemic. Our game plan is to hang out with my sister-in-law’s family as we do every year. I’ve been inspired by how fellow IBD families are creatively adapting and making adjustments to celebrate. I think you will be, too.

Nicole’s daughter Addy is 15 and has Crohn’s disease. She’s on Humira. Nicole said her family already had a little “pow wow” to discuss Halloween and how it was going to be this year. They’ve decided to celebrate over the span of two days by doing the following:

  • Making Halloween Gingerbread houses
  • Decorating Halloween Cookies
  • Having a glow in the dark scavenger hunt (The lights in the house will be out, the kids will have glow sticks/flashlights and they will have to use clues to find their bags of Halloween décor. With the bags of décor, each child will create a mini haunted house in their bedroom and go “trick or treating” to the different bedrooms and experience their siblings’ haunted house.
  • On Halloween night Nicole is going to make a Halloween-themed dinner
  • The family will watch Blair Witch Project

Nicole says being immunocompromised through COVID has been incredibly challenging for her daughter. She says they are trying to balance everything so that Addy doesn’t fully resent her disease.

“She sees that her friends are hanging out together, not social distancing, and not getting sick. We have had many moments filled with tears and frustration and we are doing the best we can to try and offer social interactions in the safest ways. But, she is a teen…and the efforts are hardly enough. Halloween this year is something my kids are all excited about, but it’s the day-to-day stuff that is most challenging through the pandemic.”

Ebony’s 14-year-old son, Jamar, is on Remicade infusions to manage his Crohn’s disease. Jamar was diagnosed with IBD when he was nine. He’s now a freshman in high school and attending school daily in-person for half a day with the hopes of making the basketball team.

“Even though Jamar is attending school, we decided as a family that we are not going to do anything for Halloween this year. We also plan to celebrate the holidays at home, to keep on the safe side. Since he was diagnosed with IBD and expressed sadness that he didn’t understand why he had to have this illness, I’ve explained to him that we’ll get through this together and that I’ll always support him—and that hasn’t changed through this pandemic,” said Ebony.

Paulina’s nine-year-old son, Grayson, also has Crohn’s. He’s on Pentasa, Entocort, and Omeprazole to manage it. She says her family plans to dress up in costumes as usual. Grayson is going to be Bowser from Super Mario Brothers. They have tickets for a drive through Halloween event at the community center by their home in California. Paulina says even though they have to stay in the car this year, Grayson and his sister are still excited to see all the decorations and participate in the scavenger hunt.

“We also plan on faux trick or treating, where we still go out and walk around our neighborhood and enjoy spotting cool decorations, BUT I will bring a bag of goodies and little prizes. For every few houses we walk by, they’ll get a surprise goodie put into their bag. Grayson will be able to go through his “loot” once we’re back home. I’m sure we’ll watch Nightmare Before Christmas (it’s a family favorite). Halloween falls on a Saturday and on a full moon…how could we possibly miss the nightly walk?”

Paulina says Grayson often feels frustrated when the topic of “being immunocompromised” comes up, but that he understands they are being overly cautious for his own health and that of others.

Cindy’s 10-year-old daughter, Jean, has Crohn’s disease and is on weekly Humira injections. She says Jean is in that interesting phase of childhood where she still kind of wants to go trick-or-treating, but also feels like she’s outgrowing it or too cool for that. This year, Jean is going to attend a small outdoor get-together on Halloween night with four classmates. It’s important to note—Jean has been attending 5th grade—in-person, five days a week since August.

“The kids will make s’mores and pizza and watch a spooky kid movie on an outdoor screen. Because she and her friends are in the same classroom “pod” and she spends more waking hours with these classmates than she does in our own home, we are accepting of her celebrating with them.”

Cindy says Jean’s friends and their families have been extremely accommodating to her immunocompromised status throughout the pandemic.

“When she has visited their homes or on limited occasions shared a carpool, these families have been careful to pursue a combination of exclusive outdoor time, mask-wearing, windows down on car rides, pre-packaged or restaurant carry-out snacks and meals, and having freshly cleaned bathrooms dedicated for guests’ use. Other parents proactively talk through risk mitigation and I couldn’t appreciate them more for their thoughtfulness. Immunocompromised or not, we all share similar concerns during COVID.”

Cindy went on to say she thinks Jean will trick-or-treat with her five-year-old brother at a few of their next door neighbors’ houses. They live in Indianapolis and trick-or-treating is “not recommended” by the county health department there, but she expects many of her neighbors will still be handing out candy.

“I also intend to hand out candy from our driveway, so long as trick or treaters or their parents are wearing face masks. This follows our family’s general approach on life during COVID: we are more concerned about “shared air” than we are about surfaces. We believe (and science indicates) surface infection can be largely addressed through handwashing. Because trick or treating can occur in outdoor spaces, we feel somewhat comfortable with that – balanced with the fact that while we are extremely concerned about COVID and have taken all precautions since March – we strive for an ounce of normalcy. There are enough parts of Jean’s life that are not typical due to living with Crohn’s Disease – whenever we can control any part of her life feeling “normal” we make every effort to do so. This was the case before COVID and will remain so afterward.”

Cindy says she reminds her daughter they are doing everything they can to protect her health, while also doing their best to ensure Jean can pursue all the parts of her life that bring her joy. It’s not an easy tightrope to walk, and as an adult with IBD, my hat truly goes off to parents trying to navigate these unforeseen times for their children.

What Gastroenterologists are recommending for Halloween and beyond

Dr Miguel Regueiro, M.D., Chair, Department of Gastroenterology, Hepatology, and Nutrition, at the Cleveland Clinic says he thinks it’s important for people to “live” and be with family and friends. He has a few tips and tricks (or treats!). (His joke, I can’t take credit!)

“For outside events or walking the neighborhood, this is probably the safest as we are learning that open air events are the least likely for transmission of COVID. At the same time, I would still practice wearing masks, social distancing, and practicing good handwashing. Avoid personal contact, shaking hands, hugging, etc.”

For those distributing candy, Dr. Regueiro says it would be prudent to wear gloves (nitrile gloves or similar) to avoid directly touching the candy. Out of abundance of caution, he said it would be reasonable to also wear gloves to unwrap the candy.

“Regarding trick or treating in malls or confined spaces, this would be less optimal than open air. Masks, social distancing, and hand hygiene is a must. Parties or gatherings in houses should follow the guidance of local health advice. Some parts of the country may have a much lower rate of COVID. Overall, though, I would avoid close gatherings in enclosed spaces, which means avoiding these parties, especially if immunocompromised.”

Dr. Regueiro wants to mention that the IBD Secure Registry is finding that IBD patients on immunosuppressive agents/biologics are NOT at increased risk of contracting COVID. He says while this news can be comforting, it may also be that those with IBD on these types of medications have been extra cautious.

“Everyone should get the flu shot. Getting influenza may mimic symptoms of COVID, and influenza is also a very serious virus. We think getting influenza and COVID could be even more dangerous. Getting plenty of sleep, staying well hydrated, eating healthy, and exercising are also important for the immune system and health. Don’t let yourself get run down.”

Dr. Anil Balani, M.D., Director, Inflammatory Bowel Disease Program for Capital Health Center for Digestive Health in New Jersey does not recommend indoor Halloween parties either, even if kids and parents are wearing masks (whether it’s part of the costume or a regular mask).

“With indoor settings it is hard to control the ventilation settings which could potentially increase the risk of airborne transmission, and furthermore many kids may find it difficult to breath indoors with a mask on.”

Dr. Balani says trick or treating, if it’s limited to outside, is probably ok. Although kids should wear masks when doing so.

“Children can trick or treat with their parents or siblings instead of a group of large friends, unless they are with a small group of friends that are in their “pods,” or groups of friends whose parents have been very careful with all COVID related precautions the entire time. Parents of immune compromised kids can also pick up the treats for the kids.”

Along with maintaining proper handwashing and social distancing precautions, Dr. Balani advises everyone to get the flu shot, unless there are medical contradictions. He recommends taking a healthy dose of vitamins including Vitamin C and zinc and continue to stay on top of all your IBD medical care to keep your disease managed and under control the best you can.

“The SECURE-IBD registry has shown us that people who are in the midst of an IBD flare are at high risk for complications from COVID should they contract the virus. On the other hand, if one is in remission, they are likely to have a better outcome from the virus, regardless of which IBD medical therapy they are on.”

When it comes to celebrating Halloween with his own family Dr. Balani and his wife have a few tricks up their sleeves. Instead of typical door to door trick or treating, they plan to set up an outdoor movie night with Halloween-themed movies, have an outdoor candy/treat hung similar to an Easter egg hunt with family and/or a close knit group of friends, host an outdoor pumpkin carving party, and have a backyard costume/glow dance party.

And don’t feel like you need to throw out your kids’ Halloween candy! Studies suggest that the SARS-COV2 virus may not be infectious on surfaces for too long. If there are doubts or concerns, Dr. Balani recommends leaving the candy out for a few days to allow any virus particles to die. Parents can also open the wrappers for their kids.

Dr. Maria Oliva-Hemker, M.D., Director, Division of Pediatric Gastroenterology, Hepatology, and Nutrition at Johns Hopkins suggests for families to look for other creative ways of celebrating Halloween this year, regardless of whether a child has IBD or not.

She recommends:

  • Virtual costume parties
  • Halloween movie or craft night
  • Making special Halloween-themed treats at home
  • Outdoor costume parades where physical distancing is possible
  • Checking to see if the local zoo or other outdoor venues in the area are sponsoring a safe, community event, following social distance guidelines.

“Those who hand out treats on Halloween will hopefully wear face coverings and model safe behaviors. If you are trick or treating, consider going to a smaller number of homes compared to past years,” said Dr. Oliva-Hemker.

Prior to making Halloween plans, Dr. Oliva-Hemker says families should be aware of the levels of COVID cases in their communities, as well as where their family members are coming from.

“For example, if they are coming in, or coming from a hot zone, they may want to consider holding a virtual event or be absolutely sure that they follow known guidelines for safety (masks, handwashing, physical distancing).”

She also says she can’t stress enough that this virus can be controlled in our society—other countries have been able to get a handle on things by people following public health guidelines.

“The virus does not know your political, religious or other affiliation—as a physician my hope is that our country pays more attention to what reputable scientists and public health experts are telling us. Taking care of this virus will also get the country back on track economically.”

Handling Halloween When You’re an Immunocompromised Parent

Mom (and dad!) guilt throughout this pandemic has reared its ugly head a few times especially if you live with a chronic illness and are immunocompromised. The last thing I want is for my kids to miss out on fun and experiences because of my health condition.

Dr. Harry Thomas, M.D., Austin Gastroenterology, says, “For parents with IBD, taking children trick-or-treating outdoors – while maintaining social distance, wearing face coverings, using hand sanitizer, and avoiding large gatherings – is, in my opinion, a reasonable option, provided they are not on steroids. However, I would recommend avoiding indoor gatherings, especially without masks, given the rising case numbers in many areas now.”

Along with receiving the flu shot, Dr. Thomas recommends IBD parents to talk with their IBD provider about the two pneumococcal (pneumonia) vaccines, Pneumovax and Prevnar 13.

Navigating the upcoming holiday season in November and December

Halloween is just the tip of the iceberg when it comes to the holiday season. There’s no doubt this will be an extremely hard time for us all.

“This is normally a time to celebrate with friends and family. But with the COVID pandemic, unfortunately things cannot be the same. This will be especially difficult for those of us living in the cooler climates where the tendency is to go indoors. For any potential indoor gatherings, it would be ideal to limit the number of people to allow safe social distancing. I would encourage families that are planning on staying together multiple days to consider getting tested for COVID before getting together,” said Dr. Balani. 

How a first-grader is taking her Crohn’s and turning it into a positive

IMG_0029She’s a ball of energy and a sweet little chatter box, wise beyond her years. Seven-year-old Brooke, of Missouri, was diagnosed seven months ago with Crohn’s disease. She spiked a fever on New Year’s Eve 2017 that lasted for eight days, and from that point forward, life was never the same.

I had a chance to get dinner with Brooke and her mom, Tara, this past week. I couldn’t help but look at this little girl in awe. Despite already being hospitalized three times since March and starting on a biologic drug in August, it was as if she has dealt with the disease her entire life. She talked candidly about all the pokes of the needles and how she tells all the nurses they are her friend. She raved about the tater tots and pancakes at St. Louis Children’s Hospital. And laughed about how annoying it is when the lights go on in your hospital room in the middle of the night. She was more like a teenager, than a little girl.

Here’s how her Crohn’s diagnosis came about. After ruling out the flu, mono, strep and a UTI, doctors discovered she was anemic. The pattern of fevers continued for two months. Still no answers. As time passed, Brooke’s pediatrician started considering a GI issue. After an endoscopy and colonoscopy, IMG_0409Brooke and her family were told she had Crohn’s disease on March 2, 2018. In a matter of months, she went from being an outgoing, energetic kid to a hospital patient on a laundry list of medications. She developed her first fistula while on methotrexate and was on prednisone for more than three months.

Dealing with the diagnosis

Fast forward to this past summer and this sweet little girl received her first Remicade infusion four days before she started first grade. Brooke is the first person in her family to receive an IBD diagnosis. Her mom, Tara, says these past months have been the hardest she’s ever endured. Her mind races with the what ifs, as she navigates her family’s new normal.

“Were there signs we should’ve seen sooner? Ditarad we do something to cause this? Were we making the right decisions for her treatment and care? Brooke has a HUGE personality. When she was first sick, and before her diagnosis, she just stopped talking. She would lie on the couch for hours and hours every day. This was not my Brooke. She normally can’t sit still for more than a few minutes! I was SO scared because I knew something wasn’t right. Watching her in pain and miserable for two months while we waited on this diagnosis was miserable. You just feel helpless…all we could do was love her and pray,” said Tara.

Juggling life and family from the hospital

Tara and her family have encountered many challenges along the way. Between the costs of the medications, the hospital stays, all the tests and trying to juggle work. To say it’s been a lot, is an understatement. Tara’s husband, Josh, works from home which helps, but Tara is a preschool special-education teacher. She was out of paid sick days by the end of January of this year. Although both employers have been understanding of Brooke’s health situation, the family has taken a big hit financially.

remicadeWhen you’re going through this, you are spread so thin and it’s difficult to ask for help. We have another daughter, Haley, who is 10. Of course, when Brooke was in the hospital, either Josh or I were with her every minute. We live over an hour from Children’s Hospital in St. Louis, so it wasn’t possible to pop up for a quick visit. It was also hard for us to ask for support. We needed help mentally, financially, and logistically with many things. We have an AMAZING support system of family and friends who have helped us throughout this process.”

An advocate from the start

Brooke has been a true IBD warrior every step of the way. She doesn’t even cry anymore when she gets her IV. Brooke openly communicates about her diagnosis and is able to tell you which foods trigger symptoms, and which are safe for her to eat. She explained to me how she’ll have one strawberry at lunch at school, if it doesn’t “hurt her tummy” she has two strawberries the next day, and three the day after that. This little girl just gets it. Tara says in just a few short months, Brooke has already become a very good advocate for herself.

“Watching my baby go through this has changed me forever. IMG_2456Although I know she doesn’t know yet, what it really means to have Crohn’s, I am always so amazed by her strength. She talks about it very ‘matter-of-factly’. It doesn’t define her. I hope and pray constantly that anything that I encounter, I can deal with, the way she has dealt with this. It’s made our family stronger by seeing that we can face this together.”

A GoFundMe page has been created for Brooke and her family. Click here to submit a donation, every dollar helps!