>> Thursday, June 11, 2009
I walked to the desk and told the nurse I was here without my son because he was too sick. I had called earlier but Dr. Van Orman was so busy he got the message as I was walking in. There is NO cell phone coverage in the Neurology Department at Primary Children's so it went to voice mail and we were both stuck with each other.
Dr. Van Orman knows his stuff. I simply adore that he listens to me and addresses everything I say as if it was the most important thing he had heard that day. If I am misguided, he gently validates me and then corrects my line of thinking. I enjoy talking to him, I don't know that he feels the same about me, but he seems to pay attention.
I told him that Bug was very sick and we had gone to the ER. He was concerned but I told him what it wasn't and that the Doctor had witnessed a seizure. He smiled. I admitted: It pleases me to get that corroboration. Unfortunate as it is. He agreed and asked how bad it was. I told him that they are not more than 20 seconds, but multiples a night. I told him, we love the Lamictal but just want the seizures to stop. I told him that Bug was saying words we had never heard before. He raised an eyebrow and said: That's great! Something clicked in my brain when he said that, and I asked about his EEG.
Dr. Van Orman had only looked at his EEG for a few minutes. He saw one of the seizures and confirmed: Generalized Seizure Disorder. This diagnosis means: NO root cause or syndrome present. His little brain just reboots all at once. It has no central point. Not a shock. He also confirmed that Bug has underdeveloped and quite slow background waves. Although also not a shock, I was hoping something had changed. I did not want to hear that. But it is better than a lot of alternatives so I went with the positive side. He MAY be slow but he is making progress. The one statement that keeps playing over in my ears is: It's very unfortunate to see.
I queried as to why he is so hyper, we he can't concentrate, why he has fallen down the stairs because he was too excited to pay attention and we were both at a loss for an answer. I asked if any of his patients had every commented on barometric pressure changes increasing the frequency of events. Not only have we seen a small increase when the weather changes, we had also seen differences in seizure types when we would be in Utah or Idaho. He had heard of elevation changes having an effect but no one had ever said when it rains it's worse. He did agree that they would be virtually the same as far as impact. I have heard several people say that when it rains they expect more events. He mentioned that with some of the special needs kids that when they are constipated the frequency increases. This SCREAM metabolic disorder to me, but I'm not a doctor. :)
We decided to take his medication up since he was responding so well. He had his blood draw about 4 weeks ago when he was on 100mg a day. He had 50mg at 10am and by 3pm his blood level was 4. THIS is not a therapeutic dosage. He felt confident that upping the medication to 250mg or even 275mg would get him to the level he needed. I was a little stunned and said so. The research I have seen said that 200mg a day should be the cap for pediatric patients. He reminded me how well Bug is breaking it down, I laughed, this is true, why am I worried? His little body has ALWAYS been exceptional at clearing medications. So he gave me a prescription for more Lamictal, told me that he would be going over his EEG in more detail as soon as possible and would call me about the findings and off I went.
On the way out, he apologized for not getting in touch with me. He said: We could have had this conversation on the phone. I laughed and told him: Yes we could have but it's nice for me to able to talk to big people face to face once in a while.
I walked down that familiar hallway, looking at the faces around me, wondering if they could see the fear and the uncertainty in my eyes. I noticed the long line in the pharmacy and felt miserable for being so self centered. Most of the people there have faced more intense things than I had, they had wept in their child's hospital room too, they had wondered Why? We are united in our struggles, similar in our foundations, nothing is as important as watching out for the well being of our children. And Glenn and I are blessed. Our boy is happy, he is sweet, he is responding to the medication and he is stunningly beautiful. He may not be like other boys his age, but that may be a good thing, a very good thing if you know anything about 6 year old boys.
So my next step is to get some genetic testing done, secure a copy of his EEG (which I did the day of his appointment, I just need to go pick it up) and research how I can help his background be more colorful. But mostly, I just need to be patient and diligent and keep loving him unconditionally. If you have met him, you know that's not hard to do.