Jaxtins fight with rare childhood epilepsy
In December 2019 out of the blue, Jaxtin only 4, had a seizure. The next week he had another seizure at school. I was told he couldn’t come back until they were under control. The third week he had a couple seizures during the week. The 4th week he started having them every other day. Then the 5th week he started having them every day. Maybe 1 seizure a day. Then from that point on, he started having multiple seizures every day. Then he started having them all day long every day. They progressively got worse all day every day.
He then started to develop multiple types of seizures daily tonic clonic, drop seizures where you lose all muscle control and just drop like a rag doll to the floor. He then started having absent seizures. We have been in and out of the hospital so much all the drs know us. He was eventually diagnosed with Doose syndrome, a very rare childhood epilepsy syndrome.
He has been on just about every seizure medication available. Trying different doses and combinations of pills. He would take up to 8 pills a day. Nothing stops his seizures. We managed to get the seizures to just happening in the morning, then that medication stopped working. Even the rescue medication in the hospitals couldn’t stop his seizures that he has on a daily basis, all day long.
The neurologist at sick kids said we’re running out of options. If the seizures continue this way, he risks sudden death. The last option the neurologist said is to try CBD, which he will prescribe. The only problem is it is not covered and will cost $380 a month.
Which is very hard for me to cover as a single
mother And Jaxtin's full time caregiver.
We are also on a very long wait list for a Pediatric dietitian to put him on a keto diet. He will have to be fed by a tube inserted in his stomach and the wait might take up to a year. Other than that there is nothing else they can do.
I know this is a tough time for everybody but I trust in the power of community coming
together and every little bit is appreciated