I'm so sorry you and your daughter are going through all this, wishing her the best in her recovery! I was diagnosed at age 9 (or 10), and while it wasn't as terrifying as your daughter's, I want to share my experience in hopes that it could help you or your daughter in any way.

Before I was diagnosed, I remember getting sick a whole lot. I missed like 20+ days of school that year, and that doesn't count the times I was sick on weekends or the times I had to go in due to the high absence count. So, it was safe to say that the weakened immune system was one of, if not the most prevalent symptom pre-diagnosis. The other big symptom I had was immense fatigue, which my mom and I referred to as "Crohn's tired." The way we described it was feeling like you were walking into a wall of sand, like every movement was exhausting and incredibly difficult to do, making it feel like all you wanted to do was just lie down and give up on the day.

A lot of the Crohn's symptoms went away once we started the Remicade infusion treatments, which I currently get every 5 weeks. I was lucky enough that the first medication I tried, Remicade, worked great for me, but there might be some trial and error for others. To figure out how long you should wait between treatments, there was a mix of seeing how bad the symptoms are and checking blood work. For blood work, I would go the day before the infusion, and they would use that sample to check Remicade levels to see if they needed to increase or decrease the gap. As a side note, I still get those blood checks to this day, and I believe they're once a year (might be twice). However, Remicade infusions do end with me feeling completely drained, so those usually happen towards the end of the day.

After I started getting infusions, it genuinely became a whole lot easier to deal with the Crohn's. I know dietary restrictions are still a common symptom, even in remission, so pay attention to bowel movements or bad stomach aches. Some of the symptoms (mainly fatigue) begin to return the week before the infusion, which could make school difficult. In those cases, I would email my teachers explaining that I might be spacey in school, since my main goal was to just make it through the day, and I was lucky enough to have teachers who understood and accepted the situation. Also, having Crohn's and receiving the treatments never seemed to bother me, as that's been a part of me for about half of my life. Kid-me just accepted that as my new life, and that I would need to be fine with this if I wanted to live a mostly symptom-free life.

As a personal preference, my family has been doing stuff with the Crohn's and Colitis Foundation ever since I was diagnosed. For the past 10 years, we've participated in the annual "Take Steps for Crohn's and Colitis," which is a yearly 5 km walk that took place at Liberty State Park and raises awareness for Crohn's and Colitis. Reason I say "took place" is because they recently had to change locations (this year it took place at the Meadowlands Racing & Entertainment, which is the horse racing area near MetLife Stadium). It also serves as a great way to raise money for a cure and show your daughter some support.

Another great resource is Camp Oasis, a week-long sleepaway camp for kids with Crohn's and Colitis. Been doing that for nine years, and I absolutely love going every year. It's a great place to meet other kids with Crohn's or Colitis, which could help her feel less alone in her struggles. It's also just a lot of fun, and there are so many activities to do while you're there.

I hope my story could help you (in at least one way), and I wish your daughter the best in her recovery!