The Surprise Turn

As we drive home after another great week at the TMA’s family camp, I can not begin to express how grateful I am for the camp experience.  Family Camp is a magical place. My daughters love all the camp activities. Boating, fishing, arts and crafts, swimming, wood shop, music... The list keeps going. They see camp as a place for nonstop fun, and my husband and I love to experience that with them. For me, the amazing thing about camp is the knowledge I gain. When your child has a rare disease, there are tons of unknowns. Camp provides a chance to learn from other families and the medical professionals that attend camp. There is something so amazing about being able to sit down at dinner and talk to another family who knows exactly what it is like to balance daily life and endless doctors appointments.   I cannot even begin to explain how amazing the doctors and nurses are that attend camp. They lead educational sessions every afternoon for the parents. I love t...

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...

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...