Happy Mother’s Day

We had our appointment with the neurosurgeon this morning, another fabulous doctor from Gillette’s. It was on the books for 6 months so it was a long time coming. Our neurologist wanted us to meet with her to discuss the MRI he had back in December. They wanted to provide us a better understanding of the images and discuss the unique areas in detail. If you recall from the MRI there are two areas of concern, one is referred to as heterotopias (gray matter in an area that shouldn’t have gray matter) and the other being a chiari malformation (crowded area I have talked about in the past)

1.      Heterotopias – there is nothing that can be done here, it is something that has been discovered from the scan. It is a reason for seizures/epilepsy. We have not had any additional seizures or unusual behaviors, but should more seizure activity present itself we will talk about getting Rylan on an anti seizure medication. The Neurologist thinks there is a good chance we will see more, but there is also a good chance we won’t see more. No active plans regarding this finding, just knowledge for us to be prepared for.

2.      Chiari Malformation – this is the most concerning area in Rylan’s brain. It consists of a downward displacement of the cerebellar tonsils through the opening at the base of the skull. This displacement  (crowding) can cause obstruction of fluid. If obstructed it can cause headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases, paralysis. Rylan’s chiari is very mild; it could improve over time or worsen. As of today the surgeon would not operate on him as it is not causing any problems. Should it get worse Rylan could begin to experience the above side effects and we would need to have surgery to open the area up. Previously we were told we would have another MRI in 6 months but today it was decided that we will wait a full 12 months to rescan and compare the two images. Being put under at his age could cause other issues so since there is no urgency from the surgeon we will have the 2^nd scan in December, unless something happens before then.

Good appointment, good news, much to be grateful for today and every day. This is such a lovely follow up to Mother’s Day.

Tomorrow we see an old doctor friend of ours, one Rylan met when he was just a few months old. One that I consider a favorite because he helped control his reflux when he was a baby. We are headed back to the GI for some testing and discussion on the liver, growth hormones and who knows what else….just crossing our fingers for no more referrals.

Rylan is doing fantastic in big boy school.