(Suzie Atwell) Brett is the husband to Janine and hero Dad to three boys Jimi, Beck and Mac.  Beck and Mac suffer from seizures.  We have heard some of Janine’s experience in dealing with being the mother of two children who suffer from seizures and one child who does not.  Brett is writing his own blog for Amazing Smart Kids to give an insight into what he goes through as the Dad and husband of a family whose life centers around this scary condition.  We thank him for his willingness to share his life so that we can help others that are dealing with similar challenges.


by Brett Thompson

I remember my wife (Janine) telling me our little boy’s eyes sometimes seemed to go out of synch! She would be holding him and he would arch his back and roll his eyes and it didn’t seem right to her.

She booked an appointment to see the doctor, he assured her that an infant is not totally in control of his own body yet and as the brain developed he would be fine…..We found out, a very long time later, this was the beginning of living with children who have seizures. Things got steadily worse and there were times when she would be looking after our little man and dealing with his 40 seizures a month while she was pregnant and should have been looking after herself.

We have three boys, all currently under 8 years old, the eldest has no seizure activity.

The middle child is categorised as “Undiagnosed Seizures” and even played down by some medical people and simply called “episodes.”

The youngest was connected to a machine and being monitored whilst having seizures so he is classified as “Epileptic.” The two younger boys have pretty much the same symptoms but different diagnosis.

Right from the beginning it has been totally up to us to find treatment and push for more thorough testing wherever possible as it seemed there were some standard tests that could be done and if nothing was revealed you were given drugs and sent home.

My wife became consumed with trying to find someone or something that could help and she did (and still does) an amazing job.

Dealing with very young children who are constantly having seizures doesn’t leave any time for normal family life or rest. I think Janine is owed about 2 solid years of sleep! She would sit up at night with a traumatized child laying on her and they would both be exhausted

This was all happening while she was pregnant, with our third boy, I was working long hours in our own business and feeling pretty helpless, not being there. When our youngest was born Janine was still regularly going to the hospital. I think she knows all of the ambulance personnel in our area by first name.

Brett

Pictured above is Brett at work in his business that supports his family.

Today the boys are a bit older but the seizures are still there and the treatment goes on. Regular treatment certainly helps but every time one of them has a cold it is scary times and anxiety levels for everyone in the house, especially Janine, are very high. The youngest is the worst affected and he’s been in the ambulance many times, a few with escorts. He is currently on a few carefully measured medications but has Absent seizures, sometime, many times in a day.

I feel helpless at times because I often work long hours and sometimes am away for work and I see Janine is dealing with this always and she never gets a break. The same beautiful person I married is there but she’s been through hell and it’s scarred her.

Janine

A recent photo of Janine, taken by their eldest son.

 

Welcome to Amazing Smart Kids! Please buy the book to support Amazing Smart Kids and Inspired Minds Foundation Dismiss