As of today, Max has had his seizures under control for about two years. I had to check and recheck that timeframe thoroughly because it seems impossible to be true. He has had a couple of breakthrough seizures in those two years, I know. But, besides those quick seizures when he's been terribly sick in the hospital, directly after surgery, we have had seizure control. And that is a pretty amazing thing. Especially when we think back to his beginning.
Remember this photo I posted last week, as I recounted Max's birth story?
That is post-ictal Max. Yes, I left that part out of his birthday story, because we didn't know it then, but we do know now that Max was most likely having a seizure as he entered this world...and likely seizing the entire time he was growing inside of me.
As Max made his way out, the doctor was moving his little body carefully, because he emerged with his right arm up beside his head, instead of to his side, like his left arm was. This was his seizure salute.
When he made it out, he didn't make any noise, but was looking around. They took him over to the little crib and looked him over and had oxygen nearby because he was not crying. He was silent, but looking around. He finally made some noise, but was still quiet and "tired".
Before Max, I had never experienced a birth. So, I didn't really know if it was all that normal for him to be so quiet. But, the doctor checked him out and found him to be fine, so we just thought he was going to be a quiet baby.
In his first month of life, I saw signs of "shaking" more than once. I thought he was just cold. We bundled him up, and were focused more on the fact that he slept so much and was not eating well or gaining weight.
By Christmas, we knew something was really going on with Max. I was in Oklahoma visiting family for a couple of weeks, and the shaking picked up in earnest. In fact, this is the moment captured in time that I said, I think something is wrong.
Max's Great-Great-Grandma, my Granny, meeting Max and feeding him. She so wanted him to wake up and eat. But, when he was awake he was doing his little crunches...his spasms. The rest of the holiday, I talked myself into going to a doctor to see if what I was seeing was in fact something wrong. We went to a pediatrician at my mom's work and Max was diagnosed with benign myoclonus of infancy. I still shake my head at that diagnosis. She diagnosed by looking at videos we had taken. I don't even remember a proper examination of him. We left thinking he would "grow out of it".
By February, his pediatrician knew something else was going on. She set us up to have an EEG done just to prove that the myoclonus was in fact the benign variety. We took Max for his first EEG test, and met with the neurologist. We left that office in a bit of a shock. Not quite sure knowing what was in store for us.
The next week, we went took Max on his first airplane ride to California. The day we took him to the ocean, we finally got the results from the EEG test.
In this photo, Max is having a seizure. In our hotel room, he cried constantly...this cat-like meow...all night long.
The doctor told us he had a "slight tendency towards seizures" and we should start him phenobarbital, which I had no intention of doing with a slight tendency towards anything.
When we got back to Colorado, and spoke with his pediatrician, she had scheduled Max in to see a neurologist at Children's Hospital to look over the EEG results. She kind of got us in the back door with one of her ex-classmates, so we were expecting him when we got there. Instead, we got a new doctor, who had already gone over Max's EEG results. He was an Epileptologist, and after a thorough exam, going over videos of Max, and looking at the EEG print-out, he sat down and looked right at us and said, "It's seizures, called Infantile Spasms......................" I don't remember what all else he said, bits and pieces were about long-term monitoring, full metabolic tests, see what medicines will work. I was a blubbering mess. I'm sure Steve listened more intently. And before I knew it, we were getting the blood work done and setting up the 24 hour monitoring to happen the next couple of days.
By the time we got home and settled, and started packing for our overnight stay at the hospital, Max's pediatrician called again with the preliminary results on his metabolic blood tests. This was when we learned the name of his metabolic disease...although it was not confirmed. The next day we were put in a epilepsy monitoring unit, and Max was hooked up with the leads for 24 hour monitoring. In that same time, we were introduced to the world of his rare metabolic disease. His neurologist told us that he noticed Max had over 200 seizures in that first 24 hours. We were to try a medicine, but if it didn't work, it may seem that surgery may.
We went home with medicine, and after the first dose, noticed Max go into a trance like state...he was making a marching like movement. I told Steve we had to take him back, something wasn't right. By the time he got into the triage room in the ER, the nurse took him and was running down the hall with him. By the time we got in the room, they were intubating him, and preparing us that he was not breathing.
The following month, Max was put into a medicine induced coma to stop the seizures. He was on constant monitoring. And we were preparing for surgery.
The radioactive dye test (SPECT Scan) showed where the seizures were coming from, and they started with the first surgery. They placed the EEG grid on his brain directly and did more monitoring, finding that the area of his left frontal lobe that was firing off all the seizures did nothing but that.
At just over 4 months old, Max had a partial frontal lobectomy to remove a cortical dysplasia causing all of the seizures.
He was in the hospital a few more weeks, still having seizures. When we went home, he continued having seizures, and we had to give him rescue medicine nearly daily. This was before it was covered by insurance. And was $250 a dose. And had to be given rectally. And rarely stayed in very long once it was given. I saw $250 in a diaper more times than I cared to count.
The surgery was indeed a success, in that for the first time in his life, when he wasn't seizing, we got to see our boy's eyes. We got to see that he was a sweet little baby who did more than just sleep. He smiled. And he snuggled. It took almost a year to find the right medicine to finally get a hold of the seizures.
I got the medicine from a pharmacy in Canada, because it wasn't approved in the United States yet. It was shipped to my in-laws who we were visiting at the time. Before I gave him the first dose, I took this picture of him laying on the bed, whispered a prayer and hoped for the best.
Within a week, his seizures were gone. At least for a while. We saw the first glimpse of control, and would find he could lose it quickly if he missed one dose of medicine, or was sick. It wasn't until Max was 7 years old until we found that control, with the help of another medicine.
It's been a wild ride. It was a rough first year of life. I tell his story, his seizure story, to not forget. To remember where we came from. To cherish the fact that we aren't still there. To be thankful that he lived. Because, in fact, he should not have. And to raise the awareness that this month has set aside for.
Max has moved into a new stage in life. The stage of puberty. Yes, it happens more often than we knew in little boys who have brain damage. With that, we are told we will see seizures. We are told we may lose control. So we watch are growing guy, and hope with every illness, or hospitalization that it is not the time we lose that control. Certainly, it could happen at any time. That's the reality. But, we're not hiding waiting for it to happen. We're living life, and knowing when it does come, we have a great team on our side to care for our boy. And every night when he goes to sleep, I say a little cheer...stay away seizures.
2 comments:
wow! such a profound and moving story! thank you for sharing!
I cannot believe how much Max's baby pictures look like my little guy. So darn sweet! Our seizure story is very similar. Pentabarb coma for several weeks resulting in front left lobectomy. Most profound case of cortical dysplasia they had every seen. Our story took a little different turn though because he developed hydrocephalus as a result of surgery. Which we are know told was due to a stroke that went undetected. It wasn't discovered for a couple months causing a lot of brain damage. We don't have wonderful seizure control yet but its definately much better than it was a year ago thanks to his VNS.
Thanks for sharing your story. I hope we are lucky enough to gain seizure control someday too!
Thanks for sharing your journey.
Post a Comment