Left Frontal Arachnoid Cyst

This thing in Emm's brain has a name. I saw the pictures on Wednesday in an exam room in Children's Hospital in The Bigger City. Behind Emm's left eye, where there should be a frontal lobe, there is a pocket of cerebral spinal fluid. The doctor explained that sometime while his brain was developing (probably while he was still a passenger in my belly) the arachnoid layer of his brain formed this pocket and it stopped his brain from developing in this spot. It is bigger than his eyeball, probably the size of a smaller apricot. To me, this is big. To the surgeon, this is average. He has seen kids with much bigger cysts live very normally.

Here is what I know so far:

• The neurologist said the cyst is in the speech center of his brain. (or rather is there instead of a speech center) She thinks this may be contributing to his speech delay. It will give him an increased risk of having a seizure and could contribute to learning difficulties in school.
  
• The neurosurgeon said that lots of kids with bigger cysts in the left frontal lobe speak just fine. The brain has an amazing capacity to re-route neural pathways and adapt. Emmett has never had this part of his brain, so it may very well not miss it much.
  
• We are not going to operate at this point. Emm is not having seizures or pain so the risks of surgery outweigh any possible benefit draining may have. We will go for a follow up MRI in a year and re-assess.
• The geneticist took blood and a family history and examined Emmett. He wants us to come back in a few months after he gets the test results back and can study the MRI films. He has a positive outlook so far.

The good news:

• Emmett has always developed along his own, slower path. Always moving forward. He has never attained milestones to later lose them. This is important. The fact that he is slowly getting better means that we are probably not dealing with a degenerative disease. His brain is adapting.
• Emmett now says Mom, Yes, No, I want and More. Yesterday while watching Dora the Explorer he yelled out "Map!" He can do up buttons and zippers and dress himself. He is 90% potty trained. All of this in a matter of around a month.
  
• The neurologist agreed with his preschool teachers (Yay for me for tucking his report card into my purse) and will be writing us a letter to recommend Emmett has a support worker in school in the fall. She was very, very helpful and also is recommending I step up my own learning of Sign Language to teach Emmett. Since she is writing this letter this means I may not have to pay for an expensive course.
  

The puzzling news:

• The neurologist was very thorough in her exam. So thorough she found something new for us to worry about. Emmett has always walked on his tiptoes. He is kind of clumsy and falls sometimes. I thought it was because of the tiptoe walking. I guess I have never really analyzed his gait (I am also not a neurologist!) She pointed out to us that he toes inward with his left foot and that foot has decreased range of motion. She asked if Emmett is right or left handed. He is very right handed. She thinks there may be some issues with co-ordination and strength on his left side. This has absolutely nothing to do with the cyst. The left side of the brain controls the right side of the body and vice versa. If his cyst was going to give him problems with co-ordination it would be on his right side.
  This means we get a new referral to physiotherapy.

All in all our trip was really good. The doctors and staff at the Children's Hospital were fantastic with him. Kind, gentle and never in a hurry. The neurosurgeon's nurse had donuts. (This is a big plus when you are four years old and scared and everything is unfamiliar except the box from Tim Horton's.) The geneticist had the dubious honour of being our last appointment of the morning. Emmett was tired and stressed out, but the doctor was so nice to him and made everything a game. Emmett co-operated admirably. We found out the song about legs from Monty Python is a great tension breaker, especially when Dad sings it quietly in his little boy's ear.






We also found out Charlotte has a superhuman ability to eat gelati.