The Surprise Turn

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Preparing for Infusion Day

Part of my daughter's treatment for her autoimmune disease includes infusions at the hospital. She receives monthly infusions of a blood product called IVIG, and every few months she does an infusion of an immune suppression medication called Rituxan. Infusion day can be long and boring, but we are thankful for treatments that seem to be helping. We've been doing this process for over a year now, so we seem to have a good system in place. 1. To make an infusion go smoothly, it is best to prepare the day before. The most important thing is hydration. Get that water bottle out! Her infusions are given by IV, and a well hydrated body makes it much easier to get an IV in place. https://pxhere.com/en/photo/1434971 2. Pack a bag to keep your kiddo busy. Sitting during the infusion can be really boring. My daughter's infusion sometimes take 6 or more hours. Sometimes she falls asleep, but not always. We bring a bag with homework (...

Is it Time for a Second Opinion?

I am not going to lie, I was nervous about getting a second opinion regarding my daughter's illness. I love her team of doctors. They have helped us so much, but I had some lingering questions that were not getting answered. However, seeking a second opinion felt like I was "cheating" on our doctors. Would they be mad? Would they be offended? Ugh, the guilt! Finally, I decided hurt feelings or not, I needed to do this for my daughter. In the end, I was VERY glad we got that second opinion. We gathered some valuable information. My daughter's original team of doctors were amazing and even agreed to collaborate with the second opinion team. I'm glad that I listened to my instincts and ignored my "need to make everyone happy" guilt. Here's some things I learned through the process: 1. Before even making the call to schedule a second opinion, start gathering all your medical records. 2. Request CD copies of your child's MRI scans...

Explaining NMO to a Child

Someone asked me recently how to explain Neuromyletis Optica (NMO) to a child. Not an easy task, I can tell you from experience! When my daughter was diagnosed, she was 11 and her sister was 8. We explained that everyone has an immune system. Our immune systems are like the superheroes of our bodies. They fight off germs to help keep us from getting sick. For some reason, big sister's superheroes were confused. They were fighting too hard. They were attacking the germs, but they were also attacking her body too. Those crazy, confused superheroes! We talked about how our brains have these things like wires going through them. The wires have a special covering to protect them called myelin. The myelin is kind of like the protecti...

Does my child need an IEP or 504?

Your child is out of the hospital, hopefully has a diagnosis and now is ready to go back to school. Now what? Depending on your child's needs, you can talk to your child's school about different levels of support. My daughter had a seizure, so the first thing the school needed was a seizure action plan. This is a plan the doctor created with directions on what to do if she had another seizure. I needed to provide the school with the seizure action plan (signed by her doctor) and a medical form (also signed by her doctor) for her prescription rescue medication before she could go back to school. A similar protocol is often used for children diagnosed with diabetes. Schools may require a diabetes action plan that is signed by the doctor and includes information on how to manage the child's diabetic needs. If your child is doing well in school and able to do things like he or she did before? That is awesome. Do a little happy...

Helping Your Child Through an MRI

My daughter needed her first MRI when she was in 5th grade. As we struggled to find the correct diagnosis for her and as her symptoms evolved, she needed several more MRIs. She has actually done so many that I have lost count. At one point, she made an MRI machine for her Barbie. I guess even Barbie needs an MRI every now and then! Through those MRIs, I've learned a couple things about what to expect and how to make the process less stressful. 1. My daughter did MRIs at 3 different hospitals. In all but one, I was allowed to go in the room and sit with her the entire time. It is okay to ask if you can stay with your child. The hospital might say no, but maybe they will say yes. 2. For one of her MRIs, she had to be sedated. For that one, I was not allowed to be in the room with her. 3. Bring a CD with your child's favorite music. The hospital will often have music available, but if your child has a favorite, bring that al...

Life's Surprise Turn - The Beginning

How It All Began It was a normal Tuesday. The kids were at school. My husband and I were both working. I was in a meeting when I saw my phone ring and the number on the caller ID was my daughter's school. That's never a good sign, right?! That moment is when our life took a surprise turn. My oldest daughter was a healthy, active 5th grader. The school nurse called on that normal Tuesday, to tell me that my daughter came to the school clinic complaining that there was a problem with her vision. When my daughter looked at her class assignment, she realized there were sections she couldn't see. I knew in my gut that something was very wrong. We went to our local hospital emergency room. They did a CT scan and didn't see anything unusual. The hospital discharged her, but as we were walking down the hall to leave, my daughter vomited. That totally gross, but divine intervention, bought her an overnight ticket into ...