Personal Stories: Freya - Sunshine and Miracle

June 27, 2017

Freya Booker born 21st of May 2011, and is our little Sunshine and Miracle. Freya was born premature (8.2 weeks) and had surgery on the brain the day after. She has an undiagnosed brain disease with her corpus callosum which has caused her epilepsy.

Freya started cramping at eight months old, which to us looked very strange and odd looking. She cramped about six times after that, within an hour. We took her to the hospital and later found out that she has epilepsy. In the beginning it was really hard for us because the cramping didn't really stop until the doctors got the dosage right for the medicine she was taking. We give Freya lots of medicine twice daily (keppra and ergenyl), we have to use a syringe because she can't take it herself.

Every now and then we have to use diazepam to help her relax if her cramping has gone on too long. i.e. 6 cramps with time outs of about 2 minutes. This is the same cramp but just having breaks. The medicine is used and squirted up her bum. Freya sleeps for about three hours after this, and is very perky afterwards, with the epilepsy under control.

Freya seems to cramp when she is tired, has the flu, and when she puts on weight. We also have it very hard going because she can't communicate with us on how she is feeling, because of her illness.

Freya is a very happy child and has difficulties in all areas, but we have great experience in epilepsy.

Freya has check ups every six months and receives EEG's to keep an eye on her epilepsy.

This is a first for me explaining my daughters epilepsy and very hard to write. I hope you understand what I've written, because this is a hard job to keep going mentally for the love of my life. Freya is a champ in so many ways and brings the best out of me.


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