As for his seizure activity, this is another story in and of itself :/ I blogged back on February 8th, that Ryan had an EEG, which of course turned out abnormal-let me state here that Ryan has NEVER had a "NORMAL" EEG. So, his neuro. dr. wanted us to get a 24 hour EEG-another test?! I pack everyone (and by everyone I mean Ryan, Lukey, and myself) up and we head to DuPont (which as you know is in Delaware) for Ryan's 24 hour EEG. We arrive at the hospital, they attach the leads, and they send us home. Now, I thought when I made the appt. for the 24 hour EEG that he was staying the night but in actuality the techs. send you home and tell you to perform your normal routine. Thank-Goodness I asked if he would need to spend the night b/c I would have brought his suitcase and everything that was required for him to spend the night. Now, if Ron or I (mostly myself) saw any of his seizure activity we were to "hit" a button on the EEG machine. I will state one thing, Ry was not at all happy with his new head gear :/ The techs wrapped his head in a bandage, with the cemented leads (or so it seemed the next day when they were trying to remove them and we could not get rid of that glue!). The techs let him take home a backpack, but it wasn't any ordinary back pack it was an elephant that you could arrange the machine into the elephants belly. It was cute but Ry was not buying it at all.
We came the next day and on our way into the hospital who do we see but Dr. Artheya. Who is Dr. Artheya? He is the Rheumatologist who saved my life-that is a story that is definitely for another time and quite possibly another blog all together. When Ryan was having his G-tube placed back in 2004 we ran into Dr. Artheya and knew he was working at DuPont, which instilled our decision to switch Ryan's care to DuPont from CHOP. Dr. Artheya told me that he was only doing consulting and semi-retired but that he was happy we ran into each other once again. We planned for Ry to return to school that day but I was unsure b/c as I've stated the techs and I could not for the life of us get that darn glue out of his hair and we tried everything. The poor child went to school with clumps of glue in his hair that looked as if he had severe dandruff :/ Upon leaving the hospital we were told via the techs that we would need to wait for the results-OF COURSE!
About two weeks later we did have a neuro. appt. and it was told to me that it appeared as if Ryan was having "Breakthrough Seizures" and Ry AGAIN had an "ABNORMAL" 24 hour EEG. At this appt. Ryan's neuro. dr. communicated with me that Ryan required an MRI of his brain. Ryan has had MRI's before but I will state the neuro. dr. truly scared me on this one! The reason? Because the neuro. FINALLY admitted that there is an enormous PROBABILITY that Ryan may have some type of Metabolic/Mito. Disorder. In all honesty this reason scared me so much is b/c I never thought we would be on the cusp of a diagnosis such as a metabolic/mito. disorder, it truly was a surreal moment. Also, the fact that his neuro. dr. was actually listening and this after he had vehemently denied even the thought that Ryan may have a diagnosis of mito.!
I was scared for the possibilities up until we received the results of the MRI of the brain...now remember this is Ryan and nothing is ever straight forward with him-this is just our Ryan :/ AND why should this particular MRI be any different? The MRI of Ryan's brain showed absolutely nothing new, in other words it neither suggested nor denied the probability of a metabolic/mito. disorder :/ When I received the results I was happy, don't get me wrong, BUT here we go on the roller coaster ride again-its extremely disheartening! The MRI did show that Ryan's PVL has not increased nor has it decreased-which is a good aspect that his brain is not deteriorating due to the seizure activity or that his PVL has stayed the same.
We do have to get blood work done as well b/c the neuro. dr. wants to make sure that b/c of the medication and increase in his medication lately that Ry's levels of lactic acidosis don't build up and cause muscle deterioration. But as always I will keep family and friends updated on Ryan :)
Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)
PS-For those of you who have no idea what a Metabolic/Mito. Disorder is, here is a wonderful website that explains everything! http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm
