Day 6 of Guest Blogging for TSC Awareness Month

By guest blogger Kelly Oberg  (Merrionette Park, Illinois)

Looking at Alex you would never know there is anything wrong with him. Alex has blonde hair, blue eyes and a smile that will capture your heart from the start. Alex has always been such a happy little boy. No matter what he is going through, he always has a smile on his face. Even though Alex cannot vocalize his wants and needs, we as a family have learned how to communicate with him in different ways. And being strong parents, makes for a strong little boy, who is being given the best care and love that can be given to our special little angel. There are never enough words that I could find to describe the love I have for my son Alex. In the past three years he has taught so many people so many things. He has taught me so much, that in a lifetime with him I would never be able to repay him for all that he’s taught me. Alex was born July 14, 2009,  and the moment Alex was born he made an impact on everyone around him.

We were told when Alex was born that he had two holes in his heart and a heart murmur. The doctors were very hopeful that the holes would close before he reached two years old. The holes closed by the time Alex was a year old on their own. At this time we had thought that our prayers had been answered and Alex would be fine. Little did we know that there was another plan for us. I noticed early on that Alex was not big on sleeping; he would sleep for a hour then wake up screaming. He was also not hitting his developmental milestones like normal children would. After numerous trips to his doctor, we were told Alex was normal and just had colic. We knew it was not colic that we were seeing. It was something else, but as young parents we didn’t really know what it was that Alex was doing, other than not sleeping.  Alex has always been a big child with a big head and big body; he came into our lives at a whopping 9lbs 8 oz. But as he grew his doctor was concerned about his growth being so big, so she sent us in for an ultrasound of his brain. We found out Alex had calcifications on his brain and hydrocephalus. Hydrocephalus is when you have too much fluid on or around your brain, and his doctor told us we just had to monitor Alex; if over time it got worse, we would address it then.

In February 2010, we learned Alex had severe hearing loss in both ears. After a few hearing tests, the doctors told us it was nerve damage, and they didn’t know if he would ever be able to hear. They suggested we try putting tubes in his ears. We did get the tubes in March 2010, as well as his adenoids taken out. Alex started to vocalize then. It was like a whole new world was opened up to him when he could hear.

In June 2010, while taking a bath, Alex was not acting right, so we took him into his room and kept an eye on him. This is when I experienced seeing my first seizure. At the time I had no idea what a seizure looked like. Alex was pale and laying so still on the bed just staring at the ceiling. I remember feeling so scared. I have never felt more scared than that moment looking at Alex. Within a minute or two, Alex came out of it and went to play. We watched him closely thinking he just didn’t feel well.  The rest of the month, Alex did this three more times. The third time we decided to go to the emergency room. After describing what we saw, the emergency room doctors told us that Alex had a seizure, and because he had a fever, it was just febrile seizures. Febrile seizures usually go away when you reach age 5, but when you have a fever as a child you have a seizure. The doctor told us he would grow out of it. We were relieved that he would grow out of it and everything would be okay.  In August 2010, on our third trip to the emergency room, the doctors grew concerned because now Alex was having seizures without the fever. The febrile seizures diagnosis was thrown out the window. They admitted Alex and ran a ton of tests from blood to urine to an MRI of Alex’s brain. The very next day, Alex’s pediatrician came into the room to talk to us. She said she had the results from all the tests but wanted to look at Alex for herself with this “wood light”. I agreed, and shortly after starting she stopped and sat down next to me. She started to cry and explain to me that the hospital staff of doctors, as well as her believe Alex had a disease called tuberous sclerosis.  As she cried, she told me that Alex’s life would be very short; he would not talk, would not walk, or do things a normal child would. She told me to have Alex get a blood test to confirm this diagnosis and then make an appointment with the genetic doctor of the hospital. We did that and saw the genetic doctor on October 1, 2010.

It was in that very appointment that I found a side of me I never knew I had. I found a strength I had never seen before, as well as a voice for Alex that I never knew I had before.  After not one, but two doctors told me my son would never walk or talk, let alone do anything a normal child could do, I made a promise to Alex that I would do everything in my being to allow him to have as normal of a life as I could give him, as well as get him the best care I could as far as doctors are concerned. A few days later I found the TS Alliance and found the TS clinic in Chicago, and ever since then I have never looked back. Alex now has a great team of doctors and nurses that know us and love Alex so very much.

Over the past two years, we found out Alex has severely obstructed sleep apnea,  and that is the reason why he has not slept his whole life. Two surgeries later and Alex’s apnea is worse than when we started. Alex’s seizures have become more frequent up to six times a day, even with taking two different medications to help control them. Alex’s neurologist suggested that Alex would be a great candidate for a vagal nerve stimulator.  A VNS is similar to a pacemaker but it is for the brain. It is hooked up to the vagal nerve in the neck and sends a pulse to the brain either at five-minute, three-minute, or one-minute intervals to help control the seizures. Alex was implanted on November 26, 2012, and the VNS was turned on Dec 6, 2012. Since the VNS was turned on we have not seen any seizures at all. We are off one of his seizure medications and almost off the other. This is a long-term help that we were in desperate need of.  After an MRI in August 2012 we learned that Alex’s two SEGAS we were monitoring had grown a lot over the past three months, and Alex was a candidate for a medication called Afinitor. Afinitor is a medication that, to me, is a miracle drug. It helps people with tuberous sclerosis complex, not only with the problem they are taking it for, but in many other aspects too. See, Afinitor has shrunk Alex’s SEGAS by 20 percent in only three months of taking it, as well as helped him be more focused and develop cognitively.

We know that we as a family have a long road ahead of us, but it’s because of Alex that we have the strength to keep going. Alex has been through so many MRIs, blood tests, and hospital stays that he has shown us what a true warrior is by staying so strong during all of it. I feel truly blessed to have Alex as my son; he is one amazing little man.

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• Seizures Delay Kids’ Development (ivanhoe.com)
• How I want to change the world after I take a nap. (wildflowerwrites.wordpress.com)