Warrior of the week 13

Our IS journey began when Penny was nine weeks old, although I had noticed something wrong earlier. From two weeks old she would hold her breath and become stiff for a couple of seconds. I thought it was reflux. I mentioned it to a baby nurse friend of mine and she recommended changing milk, then at the six week check with my GP I mentioned it and my GP referred me to neurology. I received a letter to attend an appointment 3 weeks later for Friday 2nd of Dec 2017 but by the Wednesday of that week I had to take Penny back to the to GP as I had concerns about a different movement (which I now know were spasms). I had recorded it on my phone and showed the GP and she sent me straight to A&E with a letter explaining she suspected epilepsy/IS. My GP told me couple weeks later that she had never heard of IS until two weeks before I showed her the video of Penny. She had attended an epilepsy conference where they spoke about IS and showed a clip of a little boy having spasms, so she knew from my clip of Penny that it was IS and that Penny needed to be seen urgently. How lucky was that?! We were admitted and had an EEG the next day confirming IS and focal seizures. An MRI the following day showed a cortical dysplasia of the right temporal lobe. Penny started prednisolone and sabril the same day. We were devastated and spent a week in hospital. Four days after we were discharged Penny caught RSV virus and spent the rest of the month in hospital including her first Christmas. Penny lost all development, at 4 months old she was a vacant shell and it was heartbreaking. The more we increased her meds the worse she got, I then made the very hard decision to introduce CBD oil and she started to gain back development and personality. Penny has never had a seizure free day, but they have reduced drastically, and she is such a happy baby and takes everything in her stride, developing every day, gaining new skills and so interactive. She is 10months old now and developmentally at a 7month level, although as they said she may not pass newborn development stage. Our neurology team are amazed by her and how well she is doing as her condition is so complex. They have told us she will never be seizure free with pharmaceutical meds as she is medically resistant and they are opting for surgery. She is eligible for the surgery and the past few months they have been doing an intense surgical evaluation. We are finally at the end and have meeting with surgeons and neurologists on 17th of August to go through the surgery in detail and get a date for it if we agree. So I’d like you all to keep your fingers crossed for my baby that this will be successful for her. We are so grateful for the support from all the other IS families it helps with our journey 💗

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