The Surprise Turn

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 (...

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...

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...

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...

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 ...

NMO?  What's that? When my daughter's brain inflammation was first discovered, the doctor's told us it could be ADEM or MS.  ADEM is when a patient's immune system attacks their brain and/or spinal cord. It is usually an intense but one time attack.  The doctors were hopeful that her case was ADEM, and she could be treated and go on to have a totally normal life.  They warned us that if her immune system continued to attack her body, that instead we would be talking about a possible diagnosis of Multiple Sclerosis (MS).   My daughter's immune system didn't give up. It kept attacking.  We explained to her that her immune system was like the super hero of her body.  The super hero was there to save the day and attack germs, but for some reason her immune system was on over drive.  That meant her super hero was confused and working too hard.  Instead of attacking germs, it was attacking her brain.  Not cool! As her sympt...