My son Russell (Rusty) was having terrible headaches at the age of 11. I took him to the pediatrician several times. He was being treated for cluster migraines (due to puberty), but the treatments weren't working. In October just before Rusty's 12th birthday, Rusty had a really rough three days with the headaches being constant. We tried everything but didn't get much result. The pediatrician recommended different medications and offered suggestions that we could try for the next several weeks.
Towards the end of November, I started noticing behavior changes with Rusty. He would get frustrated more easily, and seemed to be withdrawing from family activities. He was also striking out at his younger sister, and sneaking food/snacks into his room. I would find the wrappers the next morning. I knew something was seriously wrong when I caught Rusty removing his name from all the Christmas decorations. When asked why he was doing that he said, "Mom, these headaches are going to make me die. I won't be here for Christmas." I immediately called the pediatrician and stated that something needed to be done- now. He promptly made all the arrangements for us to take Rusty to Children's National.
We had a brain MRI and an appointment with Kimberly Krohn, MD, within a matter of a few days. Dr. Krohn was the one that found the microadeno. Our options for treatment were to try to remove it surgically or treat it with medication. We choose the medication as our first option. Dr. Krohn also found on the brain scan that Rusty had another condition that involved the small pockets that surround the brain stem as protection weren't quite right, some were missing or flat. Rusty was then given an EKG (baseline) to monitor his heart before starting the Bromocriptine to treat the microadenoma. While doing the EKG they found that Rusty had a right bundle branch block. Needless to say my worst nightmare seemed to be coming to life. My child was sick and I felt totally helpless. I couldn't hug, cuddle, or place a Band-Aid to make this feel better and go away.
We were then informed that Rusty needed to see a cardiologist. We were set up with Stanley Beder, MD, and he along with our pediatrician helped explain the right bundle branch block. Rusty would need to wear a holter monitor (temporary heart monitor worn around the neck); this would record the heart activity to better help treat the condition. Rusty was asymptomatic so no treatment for the heart was necessary. His heart only needed to be monitored on a regular basis. With the heart condition, brain stem issue, and the microadenoma, Dr. Beder stated that Rusty should not be involved in any physical activity that might cause him to be hit in the head, for fear of neck/brain damage.
After receiving all this news, I took a few days to fall apart. I felt totally helpless, as if I had failed my child. I knew I had to pull myself together because my child needed me to take care of him. My next step was to inform his school. I had to file a 504 form (also known as an IEP) to inform all of his teachers as to what was wrong and what his limitations were. I had to have periodic meetings with his teachers, administrators, and the school nurse. Our life didn't seem to be ours anymore. It seemed as if I was given someone else's life. I didn't know how to get from waking up in the morning to going back to bed at night in this new life, but I knew I had to for my child. So, I simply did what needed to be done. You somehow find the courage and strength to get through the days.
A microadenoma is hormone fed. We later found out that Rusty was having cravings during the night (the reason for sneaking food). His prolactin levels were elevated, and his testosterone was low but the Bromocriptine was working. Within a matter of months, his lab results started coming back better each time. We had to go for brain and sagital spine MRIs every 6 months. It was hard for him to understand why he couldn't play around with his friends, or even swim. By going under the water, the pressure would give him horrible headaches. We did get him on a bowling league, which helped to at least keep his social skills at his age level. The school also helped by starting a \"buddy bunch,\" a group of 8-10 kids that met once a week after school just to socialize. They would play board games, bingo, or watch movies. Rusty really enjoyed that. I was so lucky to have a huge support group with the doctors, nurses, and school faculty. Our pediatrician explained to Rusty that his headaches were the same headaches that the Incredible Hulk had. The story line for the show was based on the character having a pituitary tumor that caused horrible headaches and bouts of anger. Explaining it that way seemed to help him understand and work on controlling the bouts of hormonal rages when they hit. It's all about having good doctors!!
Rusty just turned 21 in November. He is currently off the Bromocriptine. He gets occasional headaches, as we all do, but doesn't hesitate to tell me when they start and if he thinks they might be "normal" headaches or if he thinks there might be something wrong. He is still watched closely by his endocrinologist to monitor his prolactin and testosterone levels. It's been explained that as he gets older his testosterone will drop and we have to make sure the prolactin level doesn't rise and start feeding the adenoma again.
Rusty is 6'3" and is a very happy 21-year-old. He is in his third year of college where he studies criminal justice. He has stated that he wants to do something with juveniles so that he can help other kids.
I am very much aware of how having a sick child can take its toll on a family. Please know that you aren't alone. Children's National is outstanding and amazing. There was never a time I had a question or concern that it wasn't addressed and explained in terms that I could understand. I took a lot of notes, wrote down a lot of questions, and asked them all. I was afraid that the doctors would think my questions were silly but was assured by one of the neurologists that the only silly question was perhaps the one I didn't ask… so ask your questions, speak your mind, and be totally open with your child and your doctors. One day your child might need you to remember everything in case they need the information for his or her own child.
Rusty fought his battles, he won some and is saving his strength to fight later if he needs to, and as his mom I am his biggest cheerleader. He makes me so very proud. I can honestly admit I have one very strong willed young man. I'm not so sure that I would've handled it all as well as he did. Kids are simply amazing...aren't they? I hope this letter gives a mom, dad, grandparent, or caregiver some sense of reassurance that there is help for our sick little ones and their family members. If you are reading this, you are already hooked up with the best. You are at Children's National. They have huge shoulders, lean on them for guidance and support. I did and am forever grateful.
Rusty's Mom, Tina