Monday, December 12, 2011


We are now adding another specialist to our already long list of FUN. Neurology fast track got us in today. We spent the entire afternoon in the nasty Clinic B of Primary Children's medical center today. We got there at 1:30 for our appointment at 2. They got us to the weight and check in pretty quickly. We waited about a total of 25 minutes to be seen. ( Sadly, that is REALLY good for a specialist!) The appointment went about 2 hours.

We were seen by the Nurse Practitioner and then the attending neurologist. We will see Dr. Lloyd for a follow up in a few months. The consensus is that Ty had a seizure because of the virus that he had BUT that doesn't mean he will or won't have another. He is considered at risk because of his brain damage. He is high risk when you add his shunt.

They are thinking his seizure is called a complex partial seizure. His eyes deviated to one side ( all by observation so not always the best or most accurate. Just what we can recall) They can affect the whole body as his was but they start in one part of the brain.

We talked about things we had seen before in his behavior. Some of the stuff we noticed was an increase in his anxiety. His teachers even noted that one. She said he had gotten much more angry and agitated at some behaviors the last few days at school. He had also started stuttering several weeks ago. Like VERY bad stuttering. It was making him angry and upset. It was frustrating to listen to.

His anxiety seems to go hand in hand with his sensory stuff. He has a one track mind. Like OCD. Once he gets and idea in his mind that is what he wants to do and he will talk about it till you do it.

She said that a lot of his behaviors are just sensory issues. She noted the sensory stuff he has with his mouth and head and asked if we would like to opt no thank you to the EEG. The reasons she gave was that it is only going to tell us that he MIGHT with a 70 percent chance MIGHT have another. Versus just medicate and have a 60 percent change MIGHT and then we can play with medication.

The NP was amazing with Tyler. He kept chasing after her to tell her stuff. He invited her to go to the big construction job with him. He asked her to play ball with him. Normal Tyler stuff. She said she didn't have the heart to put probes on his head for an EEG. She said she wanted to treat the patient. To listen to the mom. To listen to the kid. And that our kid was screaming don't touch my head. So we won't touch his head. And go the easy route.

We now have to carry a seizure kit with us. It is like a epi pen for your brain... and it goes in your bum. HMMM weird. It is suppose to stop any seizure that goes on for more than 5 minutes. In which you call the 911 team and administer these awesome meds. If he goes over 5 minutes and it stops with the meds we don't have to call the ambulance if we feel comfortable. Our hope is to NEVER see one again.

Overall I think it went great. We need to stay away from germs for a while. We need to keep him as healthy as we can for a bit to make sure they stay away. His poor brain and body compensate for so much that when he finally can't, he gets super sick.

I do have to say, the more people that meet his cute face the more that we realize just how amazing he is. We love him.


Madeleine said...

So glad things went well at the neurologist. I hope you are all feeling better soon. Also glad he didn't have to go through the EGG. Spencer's this past summer broke my heart, not a great experience.
Spencer says Hi to Tyler

Life as a Convert (Khourt) said...

Was he not followed by neurology before? Im confused.