I can hardly believe it, but it has been exactly 1-year since we started diet therapy for Joshua! I remember when we started MAD and his dietitian told me we had to commit to trying the diet for 3 months and I thought "I'm not sure I can make it one month". And now, here we are 1-year later.
I started reflecting on our year-long journey and how different things are now from last year on this date and how much we have learned. Last year when we started Joshua refused to eat and threw most things I made on the floor. He stopped eating all together and was barely drinking and I didn't know if I could make this diet work or not. I distinctly remember crying in his pediatrician's office begging her not to make us stop the diet as she was telling us we would have to go to the ER for fluids if we could not at least keep him hydrated. It was an awful feeling to keep going with something that seemed to be causing to much disruption and pain, but I felt very strongly if we could get through the beginning there would be something amazing waiting for us on the other side. Thank goodness she did not make us stop and we did find our "something amazing" on the other side. The beginning was so difficult - I cried a lot, but am so glad we stuck with it and kept going. His drop seizures stopped within a couple weeks and then his absence seizures stopped. Within two months he was daytime seizure free!!!! The diet was working and we were so excited.
MAD took away about 80% of Joshua's seizures, but his nighttime Myoclonics persisted relentlessly and so after I went to the Ketogenic Diet Conference in Chicago I knew we had to make the switch to Keto or I would always wonder. And, to our delight a few weeks after switching to Keto in November he had his 1st seizure free day. Yahoo! Since then we have had some pretty good runs of no seizures (44 and 50 days respectively). I think he had two days of seizures over the past few days so I'm not 100% sure what day we are on right now, but towards the beginning again. But, I will take it! We are soooo much more improved from where we were last year I cannot believe it.
Last year at this time Joshua had NO energy and didn't do any activities - he hardly even played. His brain was under constant attack and it showed in his behavior, energy level, attitude, desire to do anything "normal", his cognitive abilities, etc. I remember days when he could barely walk he was so unbalanced and I had to walk behind him for fear of falling. I had to hold his shoulders while he used the bathroom or brushed his teeth for fear of a head drop that would send is head shooting downward and hitting anything in front of him. It was an awful way to live. I distinctly remember Mother's Day last year as I spent all morning crying because the boy I once knew was gone and what he had become was a shell of his former self and I felt like I would never get him back. He was sleeping 18 hours a day most days and did nothing. My family came over and all he did was sit with me and watched all the other kids play. That night he refused to take his Depakote because the pharmacy switched manufacturers and he did not like the new taste. So, I had to call his neurologist at home to find out what to do and ended up driving 45 minutes to a pharmacy and paying premium rates as insurance would not cover (they said I already had the meds) and the only one we could get that we thought he would take was ultra expensive. I think I paid $75 for a couple pills. It was a Sunday night and I had to get up and go to work the next day and I think I got home from the pharmacy at 10:00 and if he didn't take the meds I was going to have to take him to the ER to get it through an IV. Luckily he took it when I got home. That was a bad day and one that sticks out clearly in my mind when I think of how far we have come from last year.
We have made it 1 whole year and that feels great! We have made it through every holiday, birthday, party, etc. on the diet and we found a way to make it work. I know we probably have at least 1 (if not 2) more years on the diet, but it makes me feel so much more confident knowing that we have made it through this 1st year and we survived! I am so thankful for this diet and glad I was pushed early on in his diagnosis to do it by other parents. My Mom can attest to the fact that I was SCARED to DEATH to try the diet, but felt that I had to try it for his sake because if there was a way to bring my boy back to us, we were going to do it. And, bring him back it has! We are not all the way there yet, but when I see his big smile now (something we did not see for awhile), I know it is all worth it. His energy level continues to improve and we are amazed at some of the things he can do now that we didn't think was possible last year. He is in swim lessons and most recently joined a soccer team. I cannot tell you the emotions that overcame me watching him run after that soccer ball - AMAZED! I watched and beamed from ear to ear knowing the hell we have been through in the last year and 1/2.
A huge thank-you to my wonderful husband who has fully jumped on board with MAD and Keto and makes way more of Joshua's meals now than I do. I am lucky to have a husband who is on the same page regarding treatment and who is willing to learn how to make the meals and then does it. Joshua is lucky to have such an involved and caring father and I want you to know how much I appreciate you and all you do for Joshua every day.
Let's celebrate! 1 year down and I don't know how many to go, but however many it is it will be easier than the last year as we get more and more comfortable with Keto and learn how to make more meals. Thanks to everyone for all your support as we entered down this path and for no one telling us we were crazy for trying an almost all fat diet for our 4-year old. I've never been so thankful for fat in all my life. LOL!
Keto parents are a special breed and I'm proud to be one of them! Hats off to all the Keto families tonight.
Michelle
