Two weeks ago we did some testing on her which ended up to be a 96 hour EEG, an MRI and a Spinal Tap. During the EEG she was having A LOT of Generalized Seizures. Her Neurologist came by to see us after about 24 hours of monitoring and totally changed her medications. The rest of the time went by very uneventful with a lot of Yo Gabba Gabba watching. Finally we reached the end of the 96 hours, they disconnected the EEG, and went on to have her MRI and Spinal Tap. After her MRI, the doctors wanted her stay on IV as she was pretty dehydrated from having to fast that morning. I had left Meghan and Matt at the hospital and headed off to Elizabeth's dance recital. At the end of the recital I got a text from Matt asking to call him when I got home. Call it motherly instincts but I knew right away something was wrong. He NEVER says to call when I get home. So I walk outside of the auditorium and give him a call. He said that neurologist called the MRI tech to see how it looked. The MRI tech reported that the MRI looked worse than the one she had 6 months ago. Our neurologist wanted us to see his partner the following week based on the results. I felt like I was totally punched in the stomach. All of us, including our Neurologist, expected to have no issues with the MRI.
Yesterday we went in for our appointment. Dr Chez is a fantastic Neurologist and one of two certified Epileptologists in CA. I completely trust him with everything I have. He pulled up the MRI that we had two weeks ago and compared it to the MRI from six months ago. The actual damage to the brain that she had on the left side was not worse, which is what we were thinking. However, she has this white hazing that is showing up on both sides of the brain hemispheres. Dr Chez stated that he seeked out two of the best Radiologists to review the MRI with him, one is from the Boston Children's Hospital. The three of them seem to think that what is showing up on the MRI is something called Rasmussen Syndrome. It is an Auto-Immune disease in which her immune system is basically fighting against her brain. WOW...not what we were expecting. Dr Chez informed us that Meghan's case is very complex in which it does resemble this Rasmussen Syndrome however her activity and development does not match what "should" be happening based on the MRI. Meghan is developing, growing and learning everyday. She is more dominant with her right side, and that is what goes against the MRI, as the left side of the brain is more "sick" than the right side.
The only way to confirm if it Rasmussen's is to have a Brain Biopsy. We have a referral in to meet with a Neuro-Surgeon to discuss the pros and cons of the biopsy. Matt and I are already pretty convinced that we are going to go forward with it as we want answers and we want to know what we are up against. Next week we will be starting her on a steroid regime where we will do daily injections of the steroids (pray for Matt as he has a tendency to pass out when he see's needles...LOL). Once we start that we will have to do weekly blood pressure and blood tests to make sure all is OK. Dr Chez said that after about four weeks he should be able to see if the steroids are helping or not. We may move forward at that time with some sort of IV med regime which would consist of Meghan having a port installed in her to regularly administer the meds by IV.
There was some good news that came out of yesterday though. Dr Chez wanted to do an in office EEG to see how her new medications are working. Her EEG actually does look better. So that is great news in that department.
It has felt that we have had nothing but bad news after bad news. This news really sent us reeling. We are holding to the fact that God has a plan and He know what He is doing. And He won't give us anymore than we can handle. He chose Matt and I to be Meghan's parents and I am forever grateful for that. It's not the news we wanted, but that darn smile on her face makes it ALL worth it.
9 months ago