in the form of an EEG report. Medical terminology translated by myself (with a little help from google, lol).
So, we had Jayden's followup appointment this morning at 9. I didn't expect much to come of the appt at all. At this point, I'm so overwhelmed with everything. He's weaning off of one medication and weaning onto another, so trying to keep up with what he gets and how much is definitely a headache. Him constantly missing school b/c of seizures is just not okay with me. His ups and downs...every time I even dare to whisper that he's having a good day, it ends badly. We can't even enjoy our son the way we want to b/c we are constantly on edge, not knowing when the next seizure will be. Saturday night, after a WONDERFUL day, he had a seizure on the couch. Things can change in a matter of seconds for him. So add to all of that, me trying to figure out, pretty much on my own, what I can do to help save my child from this constant pain. What questions do I need to ask that have yet to be answered? Then what do I do with the answers? My brain is just clouded with it all, so I have been praying for some help or at least a small patch of sunshine so I can take a breath and regroup. Rebuild my strength that I need to continue fighting for my son.
God listens :) The Dr came in to the room (ironically, she seemed to have a new nurse) and observed Jayden for about 5 minutes. He was playing with a pop up book and used some words to communicate with the Dr and to put certain pieces of the book back together...
"Sit down" "I read book" "There it is!"
She was impressed and so were we. What I do understand is that epilepsy causes severe neurological damage so we have to constantly watch his speech to be sure that it continues to get better and not worse. He may forget certain things (like ABCs) but as long as he is still adding new skills (like the use of pronouns recently) then he is still doing well. After she observed him doing his thing, she asked about the seizures. We reported the seizure from Saturday night and she explained that we will not notice much difference in the frequency of the seizures until he gets up to the correct dosage of the medication he's slowly being started on. He starts with 10mg per day for 2 weeks (one week is already complete) and then we add an additional 5mg per week until he is up to 50mg per day. He won't get to 50mg until November, so we have to hang in there. Thankfully, the weather seems to be getting cooler so hopefully the seizures at school will decrease. The Dr wrote out the weaning schedule for us (he's weaning off of another med as well, so it's a bit detailed) and then asked if we had any questions, so I asked her to explain to me the results of the EEG b/c I wasn't exactly clear. She said something along the lines of "It tells whether he's having abnormalities in the frontal lobe or generalized and then I can know which medication to put him on. This particular EEG showed that it was time for him to get off of Topomax and try a new drug." She also said that unfortunately, growth and epilepsy do not go well together. As he grows, his seizures can get worse, which is why his meds have to constantly be adjusted. I totally understand the growth/seizure issue, but I still didn't understand the EEG, other than the fact that it was abnormal and told her to change the medications. Hmmm. But my brain is foggy so I just left it alone. She came back in the room with a copy of the EEG report and said "You can keep this for your records. It's probably hard to understand but some parents like to have it for their records." I folded it up and stuck it in my folder to read it later. I actually read it on the ride home and couldn't believe all of the information I was able to decipher without the help of google.
First of all, it read "during drowsiness and sleep, very frequent spikes were seen..." So we now know for certain that most of his activity is happening in his sleep and it's happening often (probably every night b/c he was still on all of his meds during the EEG). What I do know, from my own research, is that sleep induced seizures are harder to treat. We've been asking how we could be sure if he was having seizures in his sleep or not. Here was our answer. That also explains the prescription that the Dr wrote today for a night time seizure medication. So she is treating the issue, but not explaining it at all :/ The EEG report also reads that his abnormal results and location of the spikes suggests a "benign occipital epilepsy of childhood". You can google it (or use swagbucks and earn FREE stuff!!), like I did, and get a better understanding of it. Over two thirds of the seizures occur in sleep. It's difficult to treat, however many children who have an early onset (like Jayden has) generally go into remission within 2-3 yrs of the onset and completely out grow the condition after reaching puberty. SUNSHINE!! I am aware that there is still that chance that Jayden can fall into the small percentage of kids that do not outgrow it (he's fallen into that small percentage quite often) but just knowing that there is a chance that he CAN beat this is enough to make me stronger. Strong enough to keep fighting to increase his odds of beating it.
The Dr told us that there were no changes to the EEG, however, the EEG report (read by the Dr at the hospital) said that there was a difference. In April, he had focal slowing in the left occipital region. This EEG didn't show any slowing so there is question of a structural lesion in his brain. The Dr mentioned that she is contacting the hospital for the results from his MRI in January (why she doesn't have it already, I'm not sure), but it looks like there will be another MRI in his future. We meet with Dr. N (Jayden's 1st neurologist whom we love!) on the 11th and will get his opinion on the results and also a referral to the epilepsy center at Children's Hospital for their opinion. Just knowing that he can overcome this lit a fire under my butt and I'm knocking down every door possible until we get a clear understanding and a solution/plan to helping my little boy. Today, we are one step closer than we were yesterday and I am holding on to that hope, in the form of a piece of paper. Thank you Lord!
2 months ago