Friday 18 May 2018

Eye of the storm

I’ve been kept away from writing for a while, things were so chaotic that I barely had time to breathe never mind actually sit and put my thoughts in any semblance of order. It felt like I was caught in the middle of a war zone, trying to survive each minute, holding my breath as I navigated around a field of land mines just waiting to explode under my feet. I was struggling just to survive, to make it through each day, there just wasn’t anything left. Writing was something that was so far out of reach it didn’t even cross my mind.

We were blindsided by the news that Zoey wasn’t really as caught up on her milestones as we thought. She is doing well and we have started therapy to help her with a few things but it added to our already overwhelming schedule of medical appointments. It also crushed me under a wall of mom-guilt. I often feel that poor Zoey gets the short end of the stick, her brother needs so much now and she is so independent, sometimes I feel we take advantage of it. I felt like I had been paying too much attention to Isaac and should have noticed that she was behind with speech. I should have realized her tantrums were beyond normal behaviour. I should have spent more time with her. Maybe I should have let someone else stay at the hospital with Isaac a few nights so I could be with her more. Ugh mom-guilt. I felt so angry with myself and so sad for Zoey.

Around the same time we found out Isaac’s epilepsy was evolving dangerously. He has developed several new types of seizure, each more concerning then the previous. His last EEG showed he was having seizures every 10-15 minutes (although many not visible to the naked eye). His medication regimen was not enough. We immediately started the ketogenic diet as instructed by his neurologist. At first the diet wasn’t too bad. It was lots of learning and the sure the weighing of food, insane grocery bill and difficult meal planning were a challenge but we were figuring it out. The thing was no matter how hard we tried it wasn’t helping. Isaac continued to have seizures even more frequently then before the diet. Let me be absolutely clear here, I do not think the diet increased his seizures I think that it just didn’t help to control them. After several adjustments on the diet we decided, (we meaning Shane and I plus the neurologist and dietician), decided to transition to an even more challenging version of the diet and add in another medication. This new version of the diet was hell. We could not get Isaac to eat the fat required to keep him in ketosis no matter what we did. I would follow him around all day with spoon fulls of food begging him to eat. Mealtime took over our entire day. When I wasn’t fighting Isaac to eat I was doing the meal prep for the next meal, including calculation ratios, measuring and weighing food, figuring out how to hide fat and praying that my efforts wouldn’t be completely rejected. I would spend all hours of the night researching ways to get Isaac to eat enough fat.

We also noticed the new medication was really taking a toll on Isaac. Between the diet and new medication he had constant headaches and stomach aches. His speech was so slurred we could barely understand him, he ended up back in diapers, his processing was so slow, he stopped sleeping. My child wasn’t even there anymore. This medication was doing what it was supposed to, it slowed down his brain. After many conversations with our team we decided to stop the diet. Isaac is still on this medication but he is adjusting well to a slower titration schedule. With being allowed carbs again Isaac has much more energy and we added some melatonin to his medication regimen to help him sleep a little better. We are still averaging about five hour of sleep a night but it’s better. Surgery is our next option and we are beginning to explore it seriously. We know surgery won’t cure Isaac but maybe we can get some seizure control and maybe we can come off the worst medications. We just had Isaac’s MRI done but won’t have results for a week. Next up we will get some blood work and an ultrasound to check on the progress of Isaac’s liver recovery. After that we should have a couple months to breath before our next planned admission for an eeg involving contrast and another mri.

I don’t know if the storm is settling or if we are just in the eye of it but either way things are feeling a little better now. Being off the diet has given us back a lot of freedom. I feel like someone unlocked my chains, I can almost make it out the prison door!

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