Autism and neurology
Back in October we had an EEG and MRI done on Nolan. Turns out kids with autism are 60% more likely to have seizure disorders. We went to our follow up appointment today (we have an extremely reputable, world renowned, published, high demand pediatric neurologist who is then, in turn very hard to get into so we are just following up now)
EEG
The eeg revealed his left temporal lobe is processing slower. This is the language part of the brain.
There is neuronal instability which puts him at an elevated risk of seizure. Such an elevated risk that we now have a medication that is to seizures as an epi-pen is to allergies. It is with us at all times and must be administers of a seizure lasts more than 3 minutes.
MRI
No structural issues in the brain. No trauma indicated from past seizure or injury. His brain is healthy.
Genetic Testing
He has 2 genetic mutations.
- A recessive trait that makes him a carrier to pole? Syndrome but not have it.
- There is a mutation on a gene and there isn’t any data linking it to anything. Basically they don’t know what it does or how it affects him.
We were also reminded of Bryce’s 25% chance of having autism being a boy sibling. We will watch close and be sure to seek testing and services early should the need to arise-early intervention really is amazing in helping a child grow.
Addressing Our concerns
Our doctor just kept saying. What else? What else? Anything else? With our thoughts and concerns. He wanted to be sure to cover everything that was bothering us.
While in the room, Nolan went about his usual non-stop drumming and stimming to the point of increased heart rate and breathing heavier. We noted this as a concern especially with school starting. He 100% agreed and prescribed medication.
With Alex’s medical background he’s seen this med help and he’s seen it take the personality out of a patient. We agreed to try it with the understanding of it hurts we’re stopping. Our doctor agreed quality of life goes a long way and if it’s not quality then change it back. Alex has assured me once stopped it will take days to remove it from his system (not long).
This medication could also replace his sleep meds if we get his brain more relaxed. We shall see.
If you (or someone you know) just got a diagnosis
I share our experience and journey through autism so
- our readers can gain some perspective on what being a part of an autism family is like
- so if you or a loved one had a new diagnosis in the family, you have done avenues to explore to help your child be safe and grow in all the ways they can.
If you or a loved one just got a diagnosis I highly encourage you to find a neurologist and do a work up. Know what you are up against to keep them as safe as possible medically can give you some peace of mind and allow you take any next steps.
