My daughter has been pumped full of steroids, antibiotics and UC meds for the past 4 days. Her Erythema Nodosum is so painful we are applying cold compresses. We are managing her pain with Tylenol and it seems to be helping. MRE showed her kidneys flared up as well as a small part of her pancreas. Doctor says this could mean she had pancreatitis recently but it’s not a concern now. We just got back from having a sonogram on her kidneys because they thought she has a UTI, but her urine didn’t grow any cultures overnight and they say this is mysterious. So we aren’t sure what’s happening with that until we get results. I’m concerned about her left eye that flared up week before last that went away with an eyedrop the Urgent care doctor prescribed on Oct. 22. PCP says there’s an ocular issue that some people develop that’s in conjunction with UC. We have an appointment in Dec. to get that looked at.
We have cabin fever and are ready to escape from this box we have been living in for the past 5 days.
Fast Forward to January 2019: Oral meds for UC just aren’t cutting it. We’ve been through many medications. She’s flaring up again… Back on steroids we go again… Now we have a decision to make: ALL liquid diet without wavering at all for 3-4 months, or we start medication infusions. 80% of those who try the liquid diet go into remission! Many people cannot tolerate the taste of the prescribed liquid solution so they have a feeding tube placed in their nose. Nothing is allowed other than water and this liquid solution. I’m not even sure I could handle that much less my daughter who is on the autism spectrum and one of her worst struggles is her strong impulsivity that comes from her ADHD. Infusion medication side effects have the word “fatal” as a side effect should you get a virus or something else while your immune system is down. Difficult choice!
After much discussion, reading and agonizing, we settled on at least trying the liquid diet. Then I got a call from the dietitian who apologized for even telling us about the liquid diet because after a more careful look at my daughter’s records they indicated she probably would be in that 20% that wouldn’t respond to the liquid diet and would need infusions anyhow.
After experiencing 2 infusions now I can see my daughter’s energy level strengthening! She almost seems like a normal hyper silly teen now. Tomorrow is her last day of taking a steroid, and that will be the telltale sign of how she is doing when the steroids leave her body and if inflammation returns. She is even cleared to return to school on Feb. 1 if her body is responding to the infusions. We should know by the weekend if we have a problem again and she needs more steroids. I also know steroids can have terrible effects on the body if they are taken for too long. She has been on steroids since August 2018. She has also been home bound from school since October. We are ready to be normal again!
My daughter’s illness and having to be home bound have presented other unexpected behavior issues that have been very difficult to deal with. Because of my daughter’s mental disabilities we qualify for a mentor through Easter Seals. This has been such a blessing for me to know that someone is watching over her and managing her at home while I work. It’s hard for a kid to stay home alone all day. Idle times bring trouble! Beforehand I was assigning her a daily chore as well as her school assignments for the day. This clearly wasn’t enough to occupy her mind.
A mentor from Easter Seals stays with her for 5 hours per day while I work and her brother is home at 1:30 pm daily and he helps supervise her some in the afternoons. Other times I bring her to my office and isolate her in a room so she isn’t exposed to a sick person.
Scheduling all these health appointments, managing so many medications, micromanaging her hygiene, special diet, behaviors etc… has brought me a season of exhaustion.
The ringing in of the New Year felt so fresh to our family as we just have to believe that 2019 cannot possibly be worse than 2018!
This is Journal 5 of a six part series.
Jeni Martin Johnson 
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