Connor has had lots of up and downs lately which we have learned to expect due to his disease. We adapt as quickly as we can to his ever-changing needs. He is the biggest sweetheart, even on his worst days! They increased his spasticity meds and one of his seizure meds which has made him much more lethargic than he was. Pain management continues to be a top priority. Due to the painful spasticity in his legs, we have decided to try Botox injections which I know sounds strange but multiple doctors and therapists said it can really help. The good news is, the injections don’t cause increased fatigue and can be targeted to the problem areas which for Connor is the calves and heal cords. It usually takes a couple weeks to see any improvement from the Botox and he would get the shots about once every four months. His first appointment for Botox is right before Thanksgiving and we are excited to see if it helps him! Overall, he has been sleeping well through the night but every once in a while, he wants to be a 2:00am party animal. 🙂
He has had some seizures and some “episodes” that we and his neurologist cannot identify. They don’t look like any kind of typical seizure but we are going to do another EEG in the near future to rule out seizure activity. If he continues to have seizures, he may have to switch to the keto diet formula and we may have to add to or change his meds. We know some family members and friends are curious as to whether or not CBD oil could be a treatment option for Connor. The short answer is, YES. In fact, Epidiolex has been FDA approved and will be available legally in Idaho with a doctor’s prescription. You can read more about it here: https://idahonews.com/news/local/legal-version-cbd-oil-epidiolex-approved-by-dea-to-be-offered-in-idaho
That being said, he would have to be weaned completely off of one of his seizure meds and reduce the dose on the other in order to use Epidiolex. That in itself could cause him to have more seizures so it would be like a balancing act with the meds. Regardless, we are happy to know that it’s an option that was not available to him before.
We recently switched his food from a chicken formula to an organic plant-based blended food and he is doing much better with it. He has less acid reflux issues and seems more content overall with the new food.
This morning a nurse visited our home to do an assessment to see if Connor would qualify for some Private Care Services. It went better than expected and she said on the low end, we are looking at about 15 hrs. of help per week. This would not be a nurse but more like an assistant to me in helping Connor with daily living tasks such as bathing, diaper changing, stretching, physical therapy exercises, transfers, etc. They would even be allowed to go with us to doctor’s appointments! It takes a while to get these services going but we are looking forward to the help!
Thank you for your continued prayers and positive thoughts!
The Perran Family