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Jan 3, 2018 Latest post:
Mar 11, 2018
In December of 2014 John started having seizures again. John has seizures as a teenager but had been seizure free and off of all medications for over 10 years. The first recurrent seizure John had was in December of 2014. He had stayed home while I drove our daughter, Izzy, to school one morning. When I arrived home John was back in bed sleeping. I received a call from our friend who had stopped over to see John while I was out and found John to be lethargic and incoherent. He was in the basement sitting on the floor and it appeared he had knocked things off a table. They watched John stumbled up to our bed to lay down. They left him there to sleep but called to check on him. John woke up about 15 minutes later, came out of the room and could not remember what happened that morning. He had burns on his forehead that we concluded came from the space heater that john had turned on in our basement. He must have been resting his head on the very hot space heater until our friends arrived. After that John started to have frequent episodes of staring off, mouth watering/ lip smacking and a feeling of Deja Vu. We now know these are complex partial seizures. John's continues to have daily complex partial seizures and has also had a witnessed tonic-clonic seizures (previously known as Grand Mal seizures.) These last three years have brought difficult times for John and the family as he went through many tests and medication changes trying to control the seizures and figure out why he is having seizures. The first few medications that John was placed on didn't seem to improve the seizure but instead caused mood swings and severe depression. He went through multiple trials of different medications, having to be slowly weaned off of one and slowly increased on another to lower his risk of having further tonic-clonic seizures. There have been many dark moments for our family, fearing for Johns safety and health. Our young children have witnessed one of the tonic-clonic seizures last year and they often bring it up and ask it Daddy is going to have another seizure. Thankfully John started to see another physician who was able to stabilize John on his anti-seizure medications, however it did not prevent the almost daily seizures.
For three years John has been on anti-seizure medications and has continued to have seizures. After a routine visit to his original neurologist, John asked for a second opinion and was referred to Dartmouth Hitchcock Medical Center in Lebanon. During his first appointment with the head neurologist John was told that he is most likely a candidate for a temporal lobe resection (brain surgery!) This scared us very much as his original neurologist never mentioned surgery as an option for epilepsy. After the original shock wore off John started his pre op testing. At this time he has had neuropsychologic testing (results pending) and a high resolution MRI, which showed atrophy or shrinking in the temporal lobe (compatible with having surgery).
The next step for John is to have inpatient EEG monitoring where he will stay in the hospital room for 5-7 days to observe his seizures. They will decrease medications as needed to induce seizures. He will not be allowed out of the room or to shower and if he would like to sit in a chair he will have to wear a special safety harness. After this last piece of testing is complete and if they still feel that John is a candidate for surgery then he will be scheduled at that time.
After John's consultation at DHMC we are hopeful that there may be some improvement of the seizures and that John can resume a normal life. The neurologist in DHMC informed John that his depression and anxiety have developed as a result of the seizure activity. It is also very common for people with seizures to develop short term memory problems as a result of frequent seizures (John has this as well.) This will usually improve after the seizures stop or become less frequent, so hopefully after surgery!
We want to thank our family and friends who have been there supporting John since the beginning. It has been a very tough and trying three years but we finally have a hope for a seizure free future!