Today we saw Logan's other neurologist. He has two of them. The first neurologist he has been seeing since he was a baby and the new neurologist that treats his seizures. Today it was the neurologist we have been seeing for years. I was really looking forward to this visit as he knows Logan and our family well and he does a great job at explaining things for me.
Last week Logan had an overnight stay in the hospital for EEG monitoring. This was monitoring for seizure activity. In the time we were there we found that he is having multiple types of generalized seizures. Generalized, meaning they fire from all areas of the brain. They manifest in many ways including myoclonic seizures which are a single jerking movement, tonic seizures which are the rigid and more lengthy seizures, and the tonic clonic where are rigid but also has some rhythmic movements accompanying and can be quite upsetting. In between seizures his EEG is showing pre-seizure activity that isn't always firing into a seizure. We wouldn't see any difference in Logan when these happen.
When we were in the hospital, the neurologist explained that Logan has epileptic encephalopathy and the more specific syndrome or type is called Lennox Gaustaut. This means the types of seizures accompanied by his developmental delays puts him into this category. This category of seizures is also found to be difficult to treat.
We left the hospital with a plan to increase the amount of times per day he is receiving his medications to keep the level of drugs higher throughout the day in his system. If the levels still aren't high enough in a few weeks, we will re-check labs and move to another medication called Felbatol. This has some side effects that we will monitor for such as liver problems and bone marrow problems but the chances are low therefore the need for repeated lab draws to monitor for changes.
Today's visit wasn't to come up with more plans for seizure control. This neurologist is working to track Logan's disease progression. Today we discussed the seizure changes and he did a great job at explaining it better for me. I am someone who needs time to absorb new information and formulate questions. When we were in the hospital, it wasn't until I was already home that questions started popping in my head. It was perfect timing to have this appointment and I knew that this doctor would be able to explain things in a way that would make sense to me.
We also talked about the other changes with Logan such as the small change in the macula of his eye (central vision) and the increase in shaking of his legs. He asked if Logan has been more sleepy as of late. I said no different other than after the medication changes. He said we may see as his disease progresses that he may become even more lethargic. He also said the eye change was part of the degenerative process for Logan.
Of course I was crying at this appointment. I always do. I feel very comfortable with this doctor and he does a great job supporting myself and Logan (and if Joel is there too). We talked about what the future might hold for Logan. This may include more difficulty with swallowing and trouble with breathing. This was probably the first time we really talked about the future symptoms to watch for with this much weight to it. In the past things like this have come up but seemed in the distant future. I am not saying they are possibly around the corner, but let's be honest, they are sooner than later. I have to be prepared for things to change at any point in time.
We have been so blessed to keep Logan as healthy as he is and to stay out of the hospital. We have been blessed that his disease is only progressing in stages and that between the changes, we have months of reprieve from the huge waves of grief. Right now we are in a period of change and the emotions come like tidal waves. I know this fog will pass and it won't hurt as much but right now it is extremely painful.
So for now we continue on. Praying for some relief of seizures but now know that it will be an uphill battle. If anyone knows how to get medical marijuana for cheap in Minnesota let me know! It is legalized here for epilepsy but is just too costly at this time. I would love to be able to afford it but could only probably swing a few months worth. Hoping this summer when chronic pain becomes one of the conditions allowed into the program that there will be more demand and cost will go down.
On a happy note, we officially became members of our church last weekend! We were welcomed in front of the whole congregation. It was so wonderful to be accepted into this wonderful family. Thank you Elk River Lutheran Church! Next plan is to have Lauren and Logan baptized. We were never members of church when the kids were born but have always wanted to make it happen. Now that we have a church to call home, it is time!
Again, thank you for reading this blog. It is a very therapeutic way for me to process feelings and provide updates to friends and families. We feel the support from each of you every day. Prayers are always welcomed!
