We have been having a hard time lately keeping Joshua from cheating. He has been getting up very early in the morning before Chip and I are awake and getting into the refrigerator and eating whatever he can find. It is so unbelievably frustrating when we try so hard all day to keep him on his diet foods. We try to explain "why" he is on the diet, but I really don't think he understands. Since his seizures have only been in his sleep for so long I don't think he even knows he has them so he probably doesn't think anything bad happens if he cheats. It is weird because sometimes he can be so good and will find a piece of food on the floor and pick it up and hand it to me and say "I can't eat that", but then he will turn around and try to take food off of one of our plates.
I can't fully explain the heartache it causes to deny your own child food or to physically wrestle food they cannot have out of their hands, even when you know it is for their own health benefit. I often don't talk about it because I am so thankful for the diet and I KNOW it is saving him, but sometimes it is difficult. I think about what it will be like in the future (someday) to let him eat anything he wants and be able to take him out for ice cream. I know that sounds like stupid things, but when you cannot do it anymore, it is hard. I don't think anyone can fully grasp a change like this until they are faced with it and deal with it every day.
Although Joshua is 5 we have to treat him like a baby and not let him out of our sight. We can't even go to the restroom without making sure someone can watch him because he may try to sneak food. The minute I hear a bedroom door close I go running because usually that means Joshua has gotten into something and is hiding. It is a strange fear to live with, I have to say. Our cupboards are locked so he cannot get into the food and that has worked well. However, the refrigerator has not been as successful (Joshua has broken off two sets of locks already). We are now contemplating getting a bike lock and putting that on the fridge at night so he cannot get into food while we are sleeping. These are not thoughts that most parents have, but it is a reality in our house.
All of Joshua's cheating caught up with him last night when he had 11 seizures when I put him to bed. I was not surprised at all due to the cheating, but it was still heart-breaking. Our last seizure free stint was 44 days and this one was 50. I hope someday we will have longer stints, but it just did not happen this time. Today we started over. He is in such a better place than he was a year ago so I should be nothing but thankful, but yet, it crushes me every time he breaks his seizure free stints. I cringe knowing that his brain still knows how to seize and that he is not healed yet. I hope that one day his brain will be completely healed and this will all be behind us. I can't describe what it feels like to hold your child in your arms and watch/feel them have continuous seizures - I don't think it is something that will ever leave me.
I don't write this post so that people will feel sorry for us - I do it to bring awareness. Before Joshua I knew NOTHING of seizures or epilepsy and the pain that it causes and the toll it takes on a family. Now that I know I want to make sure I share this with others so people will have empathy and donate money for research and will not treat people with epilepsy differently. I'm appalled by how little research funding epilepsy gets compared to other brain disorders, yet more people are affected by and die from epilepsy every year than those other disorders. I have a lot of friends that I have met on this journey and they are all fighting for their kids, their families and their sanity - I want so badly to help them. If nothing else, help me spread awareness and understanding for those living with epilepsy and their families who live with the struggles every day.
Today we started over. We will continue to fight and hope for a life without seizures, medications and a restrictive diet. We will win.
Blessings to your and your family. So well written and completely understandable from one keto/doose mommy to another. I love/hate the line about his brain still knowing how to seizure....perfectly put!
ReplyDeleteThe diet is so hard. Tell Joshua that we are cheering him on and praying for him as well. Hang in there!
ReplyDeleteMy son was recently diagnosed with Doose and we will be starting with the MAD per his neurologist, Dr Korol. I was curious when Joshua cheats and has seizures are they during his sleep and how do they manifest?
ReplyDeleteBriana - If you are seeing Dr. Korol I assume you are somewhere not too far from the Tacoma area? Are you doing MAD at Mary Bridge with Joy? Let me know if you would like to talk sometime and I can fill you in on all things diet related. I am willing to talk any time! To answer your question, his seizures now manifest in nighttime Myoclonics when he cheats. However, I think that is just because that was his last seizure type to go away so it is the first one to come back. We had all the other seizure types under control on MAD, but it took switching to Keto to get his Myoclonic jerks to stop. And, his Myoclonics have almost always been in his sleep or when he is really tired and almost asleep. Before starting MAD Joshua had 100+ seizures per day and right now has none (most of the time). The diet is a true miracle! Good luck and let me know if you want to talk.
ReplyDeleteBriana - You said you were Doose. Are you aware of and on the Yahoo support group for Doose parents? It is an amazing group that has saved me many times over! I can give you information if you need it.
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