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My son is almost 11 months old... At 5 months, Jayce had an unexplainable stroke. Since then, he has developed epilepsy with focal seizures and now most recently Infantile Spasms, a rare form of epilepsy that occurs in child usually under 2 years of age that can greatly increase risk of developemental disabilities and autism. Before this, we have been able to hold our own financially, however its becoming more and more overwhelming with the amount of work i miss to care for him and take him to the hospital. Any help at all to keep our heads above water would be very much appreciated.
Jayces typical routine right now is to wake up at about 9am and recieve his morning medications. He then eats 1-2 8oz bottles of formula and 1-2 4oz containers of baby food. Occasionally he will have the energy to play for about a half hour but is usually back to sleep at the latest 11am. He then sleeps until 4 or 5pm, though i wake him for a bottle between then and he wants to go back to sleep. When he gets up again he will have more baby food and another bottle and we try to stimulate him with more play time, but he is back to falling asleep by 6:30pm and is asleep the rest of the night except to recieve his medications at about 8pm. This leaves little room for him to work on developing skills or interacting with the world. Jayce currently recieves early intervention for PT and OT, and is most likely going to need Speech Therapy moving forward. We are currently training an ESA/Therapy dog, however the dog is very young and has a long ways to go.
Jayce is currently on Phenobaribital, Trileptal, Keppra, Vit b6, and starts his first dose of ACTH Hormone injections tonight. We will need to buy a blood pressure cuff for him as well.
Below ill link to information on Jayces conditions.
Information on Infantile Spasms
Basic information on ACTH injections
Information on Epilepsy in Children, including Focal Seizures
Webmd Link on Antiepileptic Sideaffects on Children
Any financial help we can get would be appreciated, this is a trying time for our family and we are doing our best with what we have.
Jayces typical routine right now is to wake up at about 9am and recieve his morning medications. He then eats 1-2 8oz bottles of formula and 1-2 4oz containers of baby food. Occasionally he will have the energy to play for about a half hour but is usually back to sleep at the latest 11am. He then sleeps until 4 or 5pm, though i wake him for a bottle between then and he wants to go back to sleep. When he gets up again he will have more baby food and another bottle and we try to stimulate him with more play time, but he is back to falling asleep by 6:30pm and is asleep the rest of the night except to recieve his medications at about 8pm. This leaves little room for him to work on developing skills or interacting with the world. Jayce currently recieves early intervention for PT and OT, and is most likely going to need Speech Therapy moving forward. We are currently training an ESA/Therapy dog, however the dog is very young and has a long ways to go.
Jayce is currently on Phenobaribital, Trileptal, Keppra, Vit b6, and starts his first dose of ACTH Hormone injections tonight. We will need to buy a blood pressure cuff for him as well.
Below ill link to information on Jayces conditions.
Information on Infantile Spasms
Basic information on ACTH injections
Information on Epilepsy in Children, including Focal Seizures
Webmd Link on Antiepileptic Sideaffects on Children
Any financial help we can get would be appreciated, this is a trying time for our family and we are doing our best with what we have.