Our Jovie “Jo” Crohn’s & Aseptic Abscess Syndrome struggles

Our lovely Jovie girl have been in and out of 3 Children’s Hospital since May 2023 from complications with Crohn’s disease and complications from a rare manifestation called Aseptic Abscess Syndrome (AAS). She has been in the Operating room 11 times so far (more to come), 3 blood transfusions, 18 MRI’s, 2 colonoscopies, and has not been able to walk normally since October 2023. This situation caused Jovie to be discharged from her school and we are homeschooling her from hospital.

Jovie was always a healthy kid, and her health issues came out of nowhere beginning 2023. Her Crohn’s is mild to moderate, and she experience flare ups every few months. May 2023 she was hospitalized for 6 days for a flare. She’s currently being treated but there is a fear she may fail treatment. So, we must wait and see how she responds and find what works for her. During flare ups she’ll become malnourished, anemic, dehydrated, fatigued, stomach pain, bloody diarrhea 5x a day, and just down to bones.

Jovie is also experiencing a very rare phenomenon called Aseptic Abscess Syndrome. This means she has abscesses in her spleen, and both ankles/feet. One of the abscesses in her foot has caused her so much pain, she couldn’t even walk. Her foot has undergone 11 procedures in the OR. Usually, abscesses are from an infection, but Jovie’s are not from an infection, they are from inflammation (dead white blood cells) and can be a manifestation of her Crohn’s disease. AAS is not ever seen in kids, that’s why it took Drs 6 months to diagnose her with AAS. All of the Drs we work with have never even heard of AAS before.

How we discovered AAS in Jovie:

In October 2023, Jovie Symptoms started with daily fevers. Weeks later it developed into Jovie screaming in pain throughout the night from foot pain. Nov 1, 2023, we took her to our local Children’s ER and MRI showed she had a bone lesion in her calcaneus (heel bone) and an abscess on the bone. They admitted us right away and started her on IV antibiotics because the hospital thought it was an infection. But IV antibiotics made the abscess grew bigger! So, podiatry took her into the OR to drain the abscess and debride her heel bone. Few days later we were discharged with oral antibiotics thinking her issue will resolve.

But while at home, she rapidly got worse. She developed high fevers, and her foot incision was draining a very thick white pus. Nov 19, 2023, I took her back to the ER, they couldn’t take off her foot dressing because the pus was so thick it was like a glue and she was screaming so loud in pain. They took her back into the operating room 3 more times to clean out her heal bone. But by the 3rd week of antibiotics, she developed pain in other foot, I begged Drs for an MRI of other foot. So finally, hospital did MRI and it also showed Jovie having bone lesions and abscesses in her other foot. Drs were shocked, because she didn’t have an infection in her blood, so how can it spread from one foot to the other? Rheumatologists recommended a full body MRI, that showed abscesses in her spleen as well. Drs were confused, no one ever seen this in a child. Drs thought she had neuropathy and treated her with gabapentin, but that didn’t help. Nov 29,2023, Podiatry and Plastic Surgeon closed her incision in her foot thinking the problem was resolved. Unfortunately, that wasn’t the case.

December 11, 2023, we transferred to another Children’s Hospital for a second opinion and for an Immunology genetic testing workup. Genetic testing came back negative for anything. And while we were here, the unthinkable happened, December 20, 2023, Jovie’s perfectly closed incision ended up busting open again with pus draining out of her foot. Drs didn’t know what to do because all of Jovie’s tests and biopsies came back negative for any bacteria/fungus.

December 23, 2023, we were forced to discharged from the hospital with no treatment because it was Christmas time. I was left to care for her painful wound at home with no answers, no treatment, and no sense of direction. I just continued to clean her wound daily at home thinking it was normal, but it was not! Jovie definitely had a lot of inflammation, and no one can figure out why. I feel like we were failed, Jovie was failed.

Fast forward now to March 18, 2023, Jovie’s incision inflamed again after a routine vaccine. It started draining pus again and fevers came back. Unfortunately, she also went into a Crohn’s flare up as well. We got admitted into the children’s hospital March 18, 2024, and have been here since. While we were here, Jovie was extremely ill, her foot incision broke open and you can see her bone, drs couldn’t close it because it was so inflamed. Drs also discovered her bone also had a secondary staph infection (osteomyelitis). We were at the point of talking about amputation, but keep in mind she also has abscesses in other leg and in her spleen as well. Finally, this one Resident did some research and discovered Jo may have AAS! Jovie fits the description perfectly for AAS. So, we decided to take a risk and treat her with a biologic while she had a grossly open wound. Fortunately, her wound started healing and Jovie’s CRP went to a zero! Jo’s CRP hasn’t been a zero since last year. But she is not out the woods yet, if she fails this biologic, we have to think quick to treat with an alternative before her foot/body inflames again.

We’re still in hospital today, Jovie’s Crohn’s flare up has currently passed thankfully. But the goal right now is to get Jovie’s incision to heal with a wound vac, good nutrition, and proper medication treatment. Once her incision closes, she will need a skin graft since the skin on her foot is extremely damaged. Then months down the road if Jovie continues to heal properly, she may need reconstructive surgery if her heel bone doesn’t regenerate properly, and she will need Achilles surgery. There’s no straightforward treatment for Jo, its going to take trial and error, and drs are cautiously optimistic since she started showing improvement but there’s no guarantee it will help or not.

This will require steady time to rebuild, and lots of physical therapy in the future. Mom dropped everything to be by Jovie’s side during this difficult time and homeschool her whenever Jovie has the time and energy to. Jovie has a little sister name Korinne, who is safe at home with Dad, but it’s been a struggle for dad since we don’t have family here for support, but luckily, we have the support of a couple of amazing friends that care for Korinne when dad needs help.

Linda (mom) did not want to start a fund, but Jovie’s health journey is going to be a very long road to recovery. In addition, since Jovie is experiencing something so rare, our mission is to bring awareness to Crohn’s and AAS because it can be mistaken for an infection and cause unnecessary surgeries like it did for Jo. There is not much information on AAS at all! We are asking for small donations and prayers, whatever your heart is willing to share. Donations will be put towards helping the family with any medical expenses, a shower chair for Jovie, basic needs such as food, gas/transportation to/from appointments Jovie will have in the future, sitters, Jovie’s homeschool supplies, and future functional medicine treatment for her Crohn’s to lower inflammation and strengthen immune system (which insurance doesn’t cover $$$). Other methods of contributions can be sent to Venmo @Linda-Wee-2

Jovie will get through this.

#gutzyjovie

Thank you all, and may God bless each and every one of you abundantly with all your love and support.