Our Story Part 2

We started therapy which was awesome and they would come to our house. The sessions were only 30 – 45 minutes long so by the time the therapist got Luke to pay attention to her it was time for her to leave. I knew that Luke needed more he needed much more therapy. I started researching online and got ideas on how to teach him or get his attention. I worked with him on just playing with blocks and other toys. I wanted him to look at me and pay attention. His attention span was very little. He did like books that were touch and feel and he loved a matching game on his Ipad. He would match letters and shapes.

Therapy was just the beginning of the appointments that we had to attend. Luke was sent for a hearing test, genetic testing (long waiting list), neurologist, and developmental pediatrician. Luke passed his hearing test, and genetic tests were all normal. Most blood work was normal except for the fact that he B12 levels were very elevated. No doctor could explain the high B12 levels but said that it was nothing to be alarmed about. Most doctors said most children with autism have low B12.

When we saw a neurologist they suggested we stay for a weekend at the hospital for overnight EEG (electroencephalogram) to check for electrical activity of the brain. We did and what a long weekend it was. He done very well considering he was only 2 years old. The doctors did find electrical spiking on the top part of the brain suggesting possible seizure activity. All the doctors that seen him suggested for us to start seizure medication due to the excessive spiking that could cause a seizure. He was spiking as much as 3 to 4 times every minute especially in his sleep. We decided that medication would be the right thing to do given the fact of the results. He did very well taken the medication once we crushed it and put in juice or applesauce. After about a few months we actually saw some improvement in Luke. He started to understand more of what we were saying. He responded more to his name and when we asked where is his “boo boo” he would always point to his arm where the blood work had been done. He even had a few pop out words like “mama” and “dada.” Since the doctors had nothing to go on but the spiking of the brain on EEG, and nothing could be find with genetics they said it was a waiting game. Since he had started the seizure medication one doctor had mentioned that if Luke started to improve more he might not even be considered to have autism. (Keep in mind we had not had a formal diagnosis of autism at that time by a doctor.) At that moment we had HOPE. We just prayed that his words would keep coming back.

He stayed on the seizure medication for almost 2 years. He did have some improvement but then after a few months he again lost the words again and by that time was very sensory seeking. He displayed most all of the symptoms of autism. The only thing he did not have was avoiding loud things like going to the grocery store or Wal-mart did not bother him. In fact he loved it! He craved loud noises and still does! Crowds did not bother him. Luke however did vocal stimming, and would bang toys or objects on his knees. He would jump in place all the time. He was “all boy” but was more active and hyper then most kids his age.

I knew that even with a diagnosis there was nothing a doctor could do. Our hearts were heavy, sad and lonely most days. How were we suppose to communicate with him?? How would we meet his everyday needs?? How will his future be?? Questions like this played in our minds everyday.