Our baby, Grayson, has been diagnosed with microcephaly, and epilepsy, and has had several episodes of status epilepticus. We are raising money to get a seizure alert dog for Gray.
Grayson was born on March 18, 2019 with Microcephaly with simplified gyral pattern. Microcephaly is a rare neurological condition in which an infant's head is much smaller than other children of the same age and sex. It usually is the result of the brain developing abnormally. We were told that we could expect developmental delay, intellectual disability, and seizures, as all are very common with microcephaly. However, no one can tell us definitively what we can expect, we just have to wait and see because every case and child is different.
At 3.5 months old, Grayson had an episode where he began to cry and then appeared to pass out over and over again for probably around 20 minutes. It didn't look like a classic seizure, so we recorded it and went to the ER after it had finished. Nothing more happened at the hospital, so we decided to just wait and see if it happened again. About 2 weeks later, he had his first absence seizure (at night). By the time we were able to speak with his neurologist the next morning, he'd started to have tonic-clonic seizures and there was no longer a question of whether or not these were actually seizures. Each one averaged 10-15 minutes long. Anything over 5 minutes is considered a life-threatening emergency.
He has been to the ER a total of 3 times for status epilepticus (long, back-to-back seizures), and once for possible dehydration (a side effect from one of his seizure meds). He was admitted to the hospital overnight one time and was also in the ICU for 5 days trying to get his epilepsy under control.
During our stay in the pediatric ICU, there were several times where he stopped breathing, turned blue, and had to be resuscitated. He was given a cocktail of drugs to stop his seizures, and gradually, over the 5 days we were there, they became shorter and shorter, until they were only lasting 30 seconds to a minute, were no longer convulsive, and his oxygen level and heart rate no longer dropped.
Although he has greatly improved, he continues to have seizures. They most often happen right after he falls asleep. We were given a pulse oximeter to monitor his heart rate and oxygen saturation at home while he sleeps. Unfortunately, since his vitals are now staying stable during his seizures, we have no way to know if or when he is having one unless we are constantly watching him. If I were a robot, this would be fine, but I also need sleep.
The biggest risks to him are SUDEP (sudden unexpected death in epilepsy) and aspiration. SUDEP can happen even with well-controlled seizures, but he is at a higher risk because of the status epilepticus. If he is on his back during a seizure, his risk of aspirating increases, which could lead to choking or pneumonia.
After looking into and speaking with various dog trainers across the country, we have decided that getting a seizure alert dog for Grayson is our best course of action. The dog trainer we are applying with is in Ohio, and requires us to attend a 12 day training. The cost of breeding, training, boarding, and caring for one of these dogs costs around $50k, and they ask us to cover $17k of that.
The dog will be trained to respond to the scent of a seizure, and will alert us by barking. Since we are already doing everything else possible to monitor him, we feel that this is a necessity for our Grayson and our family. Any amount you are willing or able to donate is greatly appreciated!
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