I want to thank all of you who prayed for Preston last week and kept us in your thoughts. We spent most of the week at Payton Mannings Children's Hospital where Preston underwent a 72 hour EEG to determine what part of his brain his seizures were coming from and if we could gain better treatment from better understanding.
We became aware of his epilepsy when he was 8 years old. At that point, although no one wants to hear news that their child is anything less than perfect, we were relieved to have an answer to his random waves of sickness. I remember countless days of begging the school nurse to let him stay at school after he had vomited. "He's not sick," I would say, knowing full well that he had no fever and would come home feeling fine for the rest of the day. To make a long story short, it was a teacher in the lunch room who recognized Preston's unresponsive staring as an "absence seizure" and we were able to pursue a diagnosis and treatment from there. Up until that point we never knew any type
of seizure existed other than the "grand mal" seizures that most are familiar with.
In the last two years or so, Preston has also begun to have night seizures. These are more typical looking seizures and cause unrest for him, and often Rees or I, as we try to monitor him to make sure he doesn't hurt himself. We also try to keep track of how often he is having these to report to his neurologist.
During Christmas Break Preston began to have seizures off and on all day long. At first we thought he was getting the flu, but as the day progressed and we observed his actions and other signs we realized what was happening. Preston was in almost a constant epileptic state that entire evening and throughout the night. I am ever grateful to my parents who took over caring for him that night as Rees and I had a commitment we could not get out of. The next day Preston felt better and we thought we were in the clear. But while we awaited a return call from his neurologist Preston would begin another two full days of misery, vomiting, and uncontrollable bowels. We made trips to the emergency room on two different nights. The first time we were sent home after they determined (without an EEG) that he just had the flu. Even though Preston had no fever and had experienced good days between the bad days there was little I could do to convince them that these were his typical seizure-like behaviours and he needed help. Of course he was better the next day.
It wasn't until two nights later, after the fits returned that we made our second trip to the er. Again, we were talked to like I was an overprotective parent and Preston just had a "G.I. track bug". The doctors in the er that night received a "code" and had to rush off for almost an hour to assist in an emergency. We were basically told by a nurse that we would be sent home with nausea medication as soon as the doctor returned. The nurse seemed to understand our desperation and suggested that I catch one of his "episodes" on my iPhone to show the doctor the next time we came in. Thank the Lord for his suggestion because shortly after that nurse left the room Preston had a seizure and I was able to catch it on video! The er doctor finally began to take us seriously! Preston was administered medication by iv to stop the seizures immediately and he was asleep in less than five minutes. 'Praise God' was all I could think! Preston was so exhausted from the days of seizing that neither the doctor nor I could waken him to leave the hospital. I was one thankful mother to see my 13-year-old son sleeping so hard! Having to dress him and put him in the car via a wheelchair was well worth the help we finally received that night and Rees and I were relieved.
The relief was short lived, however, as Preston began the seizures again two days later. His neurologist increased his meds and we were finally able to stop the day time seizures but the night ones continued. She then scheduled him for the testing in Indianapolis. Again, I thank all of you who were praying for Preston during that time. The team of nurses there were very determined to make him comfortable, but 72 hours is a long time for anyone, especially a child on the autism spectrum who is obsessed with maps and knowing every square inch of the building he is in. One of the nurses was finally able to obtain a map of the hospital on our third day there and Preston quickly located our room, which way was North, and where our car was parked. :) He was a little more comfortable then.
I was standing next to the neurologist when she viewed Preston's episode from that last night. This was interesting to me because even though I am understandably curious about what is going on in his brain, I have never been allowed to be present during an EEG reading. This is something the neurologists usually do days after the test when parents or patients are not present.
"That is definitely a classic seizure," she said, "but there is no seizure activity being picked up on the surface of the brain." She went on to explain that this meant his seizures were coming from too deep within his brain to register. Furthermore, "nocturnal deep frontal lobe seizures" are very hard to treat because they respond very poorly to medication. So since the increase in medication had stopped the daytime seizures we would just continue with his current treatment and have to accept that as long as the nocturnal seizures weren't increasing in frequency or velocity we would continue his current treatment.
It is hard to accept that there is no treatment for something that is ailing your child. It is hard to hear that even the doctors don't have the answers. I did do further research on deep frontal lobe seizures when I arrived home and found further evidence from various studies that what the neurologist had told me was accurate. However, and this is why the Internet can be good and bad both, I also found more information than I bargained for. "Medications such as anti-epileptic drugs can typically control the onset of seizures, however, if medications are ineffective the patient may undergo surgery to have focal areas of the frontal lobe removed." (Panayiotopoulos C (2005). "Symptomatic and Probably Symptomatic Focal Epilepsies: Topographical Symptomatology and Classification". The Epilepsies. http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=epi&part=ch12.)
Preston has a follow-up appointment with his neurologist at Memorial Children's Hospital on the 21st and we would appreciate continued prayer as we discuss with her what our next steps will be. There are certainly other medications haven't tried yet and there is definitely the hope that his seizures will not get worse in which case we may just continue on our current course. I'm just not sure if I can accept that though? We're supposed to be ok with the fact that he's just going to keep having the nocturnal seizures? That's difficult. I was comforted by a favorite Kutless song recently and thankfully, the words have lingered in my head.
Sometimes all we have to hold on to
Is what we know is true of who You are
So when the heartache hits like a hurricane
That could never change who You are
And we trust in who You are
Even if the healing doesn't come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn't come
Lord we know your ways are not our ways
So we set our faith in who You are
Even though You reign high above us
You tenderly love us
We know Your heart
And we rest in who You are
You're still the Great and Mighty One
We trust You always
You're working all things for our good
We'll sing your praise
You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn't come
Even if the healing doesn't come
We have no idea what the future holds for Preston. We know that things could be much worse and we are grateful they are not. Especially as we pray for our friends, the Bells, whose daughter Lauren is undergoing brain surgery Friday morning to detach the entire right side of her brain. Her seizures are so severe that they are spreading and literally destroying her little by little. Christ makes no mistakes, and like the Bells, we will trust in Him and His plan for Preston and Lauren. We can only pray for strength; the kind we need as parents to face what each new day brings even if it's disappointment, and the kind Preston needs to keep on the path God has given him to travel. He knows we'll be there with him. Just as we all know Christ will be there with us. The God of our mountaintop is also the God of our valley and we have no doubt that He is beside us.
I was reminded in a devotional that the apostle Paul requested three times to be healed of his "thorn in the flesh." But God responded, "My grace is sufficient for you, for my power is made perfect in weakness" (2 Cor. 12:9) Yes, God chooses not to heal sometimes. And when he does, we must rest in the fact that because of His grace we can endure suffering just as Jesus endured the Cross. That same grace is extended to us! Hebrews 12:2 says we are to "look unto Jesus, the author and perfecter of our faith, who for the joy that was set before him endured the cross,...". Our pain and suffering will pass and some day we will all stand with Christ and experience true healing and joy! Lauren and Preston and ALL those who have suffered will reach what has been set before them - wholeness in their Creator! It was by Him and for Him we were made! Praise His holy name!
You are God and we will bless You
Even if the healing doesn't come
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