When Clark had his series of complex seizures in Montana we communicated with everyone via Facebook, updating with pictures and results from his testing there, but did not share some of the more in depth details of what transpired.

Clark had experienced a seizure in March, while we were living at the farm. He had one that was around 10 minutes long, although we did not actually time it from start to finish. He was turning blue around the mouth by the end but came out of it on his own. He was unresponsive for another 45 minutes following the seizure. We were dissatisfied with the doctors diagnosis of a simple febrile seizure and frustrated that the neurologist at Mayo did not think it was necessary to do anymore investigating.

Due to some unfortunate circumstances and an over zealous nurse, Clark received 3 vaccinations on August 5th around mid-day. By evening it was apparent that he was quite ill and he refused his bottle before bed.

We keep a monitor in our room because Clark still wakes up in the night for a bottle. Just before 10pm, while getting ready for bed, I heard Clark start seizing on the monitor. We immediately started timing it, got dressed, and headed for the hospital rather than wait for an ambulance.

When we arrived Clark was blue and had been seizing for 10 minutes. They immediately began working on him and gave him anti-seizure medication. His seizure, which started at 10:00pm exactly, ended at 10:25pm. A second seizure started soon after and they gave him another round of medication. At that point he had been given the maximum dose they could give him. He continued to have a third and then a fourth seizure. His oxygen levels during this entire time were quite low, even with a cpap machine and oxygen mask on, so he was bagged several times by the respiratory therapist.

According to the ER report:

1st Seizure: 25 minutes
2nd Seizure: 17 minutes
3rd Seizure: Improperly recorded but I think it was 10-15 minutes
4th Seizure: 5 minutes

The pediatrician on duty told us she believed these were still febrile seizures but were complex, rather than simple. Because of his previous medical history she advised us that he would need to have an MRI and EEG to see if there was a brain abnormality that is causing him to be more susceptible to seizures. She also recommended that we air lift him out of Bozeman that night. The ER was concerned that he would start seizing again and did not feel that they had the appropriate resources to help him if he did.

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After his seizures in the ER, waiting to be transported to the airport. Clark has on a cpap and oxygen mask.

Clark was air lifted to St. Paul early in the morning of August 6th. For the first day he could not sit up or walk because his muscles were so tight and sore from the intensity and length of his seizures.

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Landing in St. Paul at 7:30am. Still totally unresponsive 8 hours after his last seizure.

While in St. Paul Clark had a MRI and an EEG. Both of those came back normal, although there were a couple of things the neurologist noted on the MRI. Because his EEG was normal there is no epilepsy diagnosis and Clark was not put on any medication.

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Sleeping (thankfully!) during his EEG

By August 7th Clark was able to sit up and walk around, although he was still pretty unsteady. We were discharged late on the 7th and advised to see a geneticist as the next step in trying to determine a cause for Clark’s delays and susceptibility to seizures.

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The day he was discharged from Children’s in St. Paul

We are thankful for the quick acting and compassionate staff at the Bozeman ER, and specifically for Dr. Henyon who I saw tear up as she watched Clark seize. She did not hesitate to diagnose his seizures as caused by the vaccinations and she erred on the side of safety by having him air lifted to a hospital with more resources.

Occasionally I think about that night, watching Clark’s tiny body shake and turn blue, and being unable to do anything to help him. I am so thankful for his life and that God saw fit to restore him to us.

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Four days after his seizure – finally feeling more like himself

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