In August, 2020, Marilee (then age 16) got a staph infection in her face. She may have had a scratch, went swimming and gotten staph that lives in chlorinated water. (Marilee was an elite swimmer on the Varsity swim team.) After a trip to Urgent care and the ED, she was admitted and spent 5 days in the hospital getting the mysterious infection under control. After several different antibiotics, Marilee ended up with Clostridium difficile (Cdiff) infection. Mayo Clinic describes Cdiff as “a bacterium that causes an infection of the large intestine (colon). Symptoms can range from diarrhea to life-threatening damage to the colon.” In severe cases, Cdiff can cause persistent diarrhea, severe abdominal cramping and pain, rapid heart rate, dehydration, fever, nausea, loss of appetite, swollen abdomen, weight loss and kidney failure.

In plain english, the extended course of antibiotics killed all the bacteria; good and bad, in her gut. When the bacteria grow back; the majority of the time, the good bacteria keep the bad bacteria in check. This was not the case with Marilee. The bad bacteria grew back in force and made her gut a very unfriendly environment. She lost a significant amount of weight quickly, was in constant pain, vomiting, losing a lot of sleep and missed a lot of school. She spent many nights in the ED before finally being diagnosed with Cdiff in October 2020. That started a year long, seemingly endless downhill battle with Cdiff. (Ironically, Cdiff is caused by antibiotics and is also treated with antibiotics.) During one visit, her liver enzymes were out of wack and her kidneys started shutting down. Since that time she has had 4 relapses (reoccurrences of Cdiff after treatment), chronic UTI’s and constant pain. In August, Marilee had a procedure called a Fecal Micobiota Transplant (FMT). Essentially she had a poop transplant. (Watch a super interesting short video… https://youtu.be/-nDPjGAGEak) Cdiff in children is very rare. Cdiff with relapse is even more rare.

Healthy donor stool was sprayed throughout her large intestine via a more invasive colonoscopy in the hopes that the good bacteria from the donor stool will take over the bad bacteria in her gut. The success rate is 95-98%. Sometimes patients with Cdiff will experience relief with 24-48 hours. In severe cases, the reports indicate it can take up to 21 months. We had high hopes that she would see results quickly, but with what always seems to happen, she really hasn’t had much relief. At the end of August she ended up with another UTI. Because of the FMT, she cannot have antibiotics for 6 months. We were able to manage the UTI naturally. Unfortunately the damage has been done, and Marilee now has severe Irritable Bowel Syndrome (IBS) and beginning stages of Chronic Kidneys Disease. She also recently has another issue that is causing sever pain, but she has not processed it fully, and I still like to protect her privacy when she asks. 

Marilee pain cycles a lot. She has days/weeks where she feels ok and can tolerate some food. (Let’s be clear that she’s in chronic pain at all times, but the severity of it varies.) She has lost 45 pounds over the last 15 months. Marilee is very small. She is 5’8” and 110 pounds. Marilee has recently been struggling with keeping food down, and even having food in her mouth or chewing. She’s been diagnosed with an eating disorder called Avoidant Restrictive Food Intake Disorder (ARFID). ARFID is similar to anorexia in that both disorders involve limitations in the amount and/or types of food consumed, but unlike anorexia, ARFID does not involve any distress about body shape or size, or fears of weight gain. It’s often times associated with lack of interest in eating or avoidance based on concern about aversive consequences of eating. Essentially at this point, Marilee is failure to thrive. She cannot do this on her own, she’s been fighting for so long. She’s exhausted. Her GI Clinical Therapist suggested strongly based on her current condition, bouts with pain, shakiness, dizziness, lack of calorie intake, progress, etc. Marilee needs to be admitted into the Center for Pediatric Eating disorders at Children’s Health. Because she cannot consume the amount of calories she needs on her own, she may need an ng tube until she can re-teach her brain and body how to eat again. At this point we are waiting on a bed for her, and will continue with updates on her progress. We have been advised to take her to the ED should she continue to decline.

This all has been very hard on her. (She’s now 17.) Her whole life has changed because of this. She had to quit the swim team, has not been able to participate in social events, lost friends, boyfriends, been in chronic pain, mentally and physically, and struggles to even get out of bed. Her poor body changes daily and she now has body images issues. We are working on enrolling Marilee in Homebound school. They will access her needs and send a tutor to help her to graduate on time this year. The financial burden has been tremendous. More than medical bills, (I am so thankful for insurance, as frustrating as it has been!) she needs an entire new wardrobe, so many supplements and medications, I want her to see a Naturopathic Doctor, get infusions, chiropractic treatment, massages and cupping, healthy shakes and food, different kinds of therapy, travel to and from Dallas for 7 different specialists, etc. Right now the eminent need is lodging and expenses for me in Plano.  A few months ago people asked about a Go Fund Me. I did not feel like it was time then, but the Lord spoke very clearly to me that NOW is the time. I (Amber-Mama Bear) am taking FMLA from work and will get a hotel or AirBnB for the amount of time Marilee is there, which typically is between 2 and 3 weeks, with an out-patient program for up to 4 weeks after. I will have to use all my vacation and sick time and potentially will go on leave without pay if necessary, but I know that God will provide. Honestly, that’s the least of my worries. If you got this far…thank you for reading and always sending good vibes and prayers. Hugs. Team Daniels.