In August (2008) our youngest daughter, Susan, and two of her sons came to visit. There was Griff, the oldest, and we got to see our newest grandson for the second time. Tighe was over 10 months old now and just a delight to Grandpa.
Susan went with us for a neurology appt. She is used to dealing with doctors and had questions. I think doctors get tired of dealing with the same ole faces all the time. But, this face was young and very pretty so he and she had a very good chat. Dr. N. ordered an EEG the following morning.
We got the report back on the EEG and it did not show any seizure activity at all. Susan was not happy with the results. She said 30 minutes is not enough time to get conclusive results. With a son with autism she is more than familiar with EEGs and any other neurological procedure.
Next Dr. N. gave Elbert an EMC. Doc said Elbert had peripheral neuropathy from the knees down (nerve damage). The dr. seemed to think that Elbert would benefit from physical therapy. But, I had my doubts about physical therapy helping Elbert with his falling. I don't think the doctor is 'getting it'. P. T. may make Elbert's legs stronger but nothing is going to keep him from falling when he has one of those 'spells'.
It was during the second week of P.T. that Elbert had a falling spell in front of the therapist. Good.... somebody besides the family now knows what is going on. Up to this point, no one else had witnessed it. We asked the therapist what she thought was happening. 'Looks like a seizure to me', she says. So, Marie and I went next door to see if we could talk to our doctor (our g.p.) and once we described how Elbert acted during these falling spells she agreed that indeed she thought it was a seizure. But, she said that the aminodrone he was taking for atrial fib can cause seizures, neuropathy and tremors. Elbert has all three. I made an appt. with the heart doctor. I was europhic to think that we may have found an answer.
Elbert continued to go to therapy. He would try so hard to do what they asked of him and he would get so tired. However, I still was not convinced that doing P.T. was going to help stop his seizure-like activity or the falling. Sometimes we women just know things. Our intution just takes over.
By Sept 18th we had been having all sorts of tests, doing P.T., and still nothing was happening to help things. The heart doctor put him on mododrine or some such thing I can't remember what... I can't spell it and I couldn't say it either. ha.
October rolled around. I was so depressed. That medicine seemed to be working when he first started it and then he had a complete collapse back to day one, feeling bad, unsteady, seizure activity, falling. We were back to using the wheelchair. We both were exhausted all the time. On October 8th we had another appointment with the neurologist. He could not believe that the cardiologist had put Elbert on Miodrine (sp?) so Elbert was immediately taken off it.
I went into that appointment fully prepared, ideas, questions, suggestions and got what I had been searching for. I even acted out Elberts seizure activity, the hands shaking then drawing up into a fist, his eyes getting huge and staring and his body then getting stiff before he fell. I think I did a darn good job of it. Immediately Dr. N. said, 'That's a seizure' and prescribed anti-seizure medication
Finally, after over a year and a half of constant seizures and me following Elbert around every step ....... somebody listened. Maybe I should have done the 'acting out the seizure' thing in the beginning. But, now, Dr. N. was listening. I'd prayed and prayed for help. I am sure God heard my prayers but the Doctors and I were just not on the same wave length. I wish God had just took Dr. N. up and shook him good and told him 'Help them'. But it doesn't work that way. I had about come to the end of my rope. And, the end was getting very frayed!!
No more falling, no more me following him everywhere. I felt like an animal let out of a cage. And, I know he did, too. Poor thing. It had to scare Elbert to death everytime he'd hit the floor. How he kept from being severely injured, I'll never know.
Earlier we'd gone through about eighteen months of constant potty accidents due to medication he was taking. Changing meds stopped most of that. And, now we'd gone through over eighteen months of constant falling. Three years or more of watching, waiting, hovering, scooping him up off the floor, bandaging scrapes and bruises, holding my nose while I cleaned up messes and scrubbing down the bathroom too often to count. I just am not nurse material. It had been a tough three years.