We were surprised when an appointment was available to see a pediatric neurologist so soon. We only had to wait 2 weeks! During this time, Thumper's tics continued to be bothersome to him and he continued to complain about how his nose and throat hurt all the time. He began having bloody noses all the time, and I couldn't get the thought out of my mind that it had to do with all this nose scrunching he was doing.
As a mom, I was a little nervous about the upcoming appointment. I worried. I worried that he might have this thing called Tourette's that seemed a little frightening, but at the same time, I worried maybe that the doctor might not see anything at all and say things were just fine. This is where the craziness comes in. It's like you wish your child were perfect, but at the same time, you know they're not, and you hope a medical professional sees that so that you can get some help for your child. It's awful to think I must be crazy, but I didn't know what I wanted more; for Thumper to be normal, or for the doctor to see that he had these tics and tell us he could help us. As a mom, I think you know when things just aren't right with your child, but you hope someone else will see it too so that you don't think you are going crazy. It's so hard to explain, and I hope no one thinks I'm an awful mom, but I wanted the neurologist to see Thumper's tics, not because I wanted him to have a true tic disorder or Tourette's, but to be able to see what I saw and give us some hope of what to do.
So, what did I do? I decided to record Thumper one day on video. Thumper's tics were so on and off that I worried what would happen if we went to the doctor and he was having a "good day" with few tics that the doctor wouldn't believe us that there were actual bad days. Don't get me wrong, we loved the "good days" when there wasn't much vocal tics and facial scrunches were few, but even on the good days there were still many many tics.
I wanted the video to be as true to life as possible, so I didn't let Thumper know I was recording him. I sat next to him as he read a book and placed my camera at an angle to watch him without me really holding it. I did have a few conversations with him while holding the camera, but I didn't tell him what I was doing or why I was recording him. He just thought I was having fun.
Anyway, it was interesting as I got on film that he wasn't stressed, as he was calmly reading a book, but he was scrunching and gulping and swallowing all throughout. He also did this thing where he had to touch the tip of his nose or below his nose maybe as a replacement of his nose scrunch. I videoed him at the table as we talked together and he gulped and scrunched up his face. His nose scrunch was progressing now to not just being his nose, but it kind of went up to his eye with a little wink and then to his mouth for a little sort of "ooh" face.
Yes, I did feel a little guilty as I had this sort of "evidence" on tape, and I hadn't told Thumper what I was doing, but I just wanted the doctor to be all informed if I couldn't describe things well enough or if Thumper held his tics in at the appointment.
The day came, and we went to see the neurologist. He was a very kind man and he listened to my concerns and watched Thumper, who was showing many tics that day, although not too badly. I would say it was more of a "good day". And of course, as paranoid as I am, I swear every time Thumper scrunched up his face that the doctor wasn't looking at him right then, and I know Thumper was trying to keep his vocal tics as quiet as possible. I told the doctor I had some video footage and he was actually very happy about that as he said it is true that most kids try their hardest not to tic in the presence of a doctor or stranger at first. He watched the video footage and voiced that it was what he had been observing with Thumper (good--he was actually watching!) and that it gave him a better idea of how he was in his home environment.
During the appointment he took a full medical history and did a neurological as well as a physical evaluation and then we talked. He said although Thumper had some colic and reflux as a baby, he did not see signs of sinus problems or problems with his ears, nose, or throat that was causing the gulping or nose scrunching. He said his premature birth was not that dramatic or early enough that it would have caused possible neurological damage that might need the request of an MRI. He said Thumper's tics were mild, but he did think it was what he called "mild Tourette Syndrome" and that his tics would probably continue for years to come if not possibly ever going away although they would "wax and wane".
You sit there as a parent and you think, "Now what?" Although we had figured he had Tourette's for quite some time, and even though we had gone to all this effort to making sure the doctor saw what we saw, I still don't think we were ready for an actual diagnosis of "He has Tourette's." All of the sudden I was in a fog. I guess I had been so busy trying to see if what I felt was true was, but at the same time I wasn't ready to actually accept that what I feared was true in the end.
The neurologist was encouraging and said that all Thumper really needed was to possibly meet with a type of "Behavioral Health Specialist" who would help him with some relaxation techniques and try this new thing that was called "tic reversal training". He said that this could help lesson the tics and so help ease Thumper's pain by the fewer number of tics he had to do. As far as medication was concerned, we wanted to stay away from that choice for Thumper, and the doctor said he wasn't injuring himself with his tics and they weren't so bad that he would suggest it either. So, we tried to take it all in and set up an appointment to see this specialist that they had recommended.
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