Here are some updates since I last posted.
1) Joshua is completely off Depakote! Last week he had his very last pill and it felt so great to not give it to him anymore. Although getting off Depakote has not made him seizure fee like I hoped, it has given him a lot more clarity and removed some of the drug induced "fog" he was walking around in. We are seeing him do things that he just couldn't do not that long ago. For instance, he looked at a word the other day, pointed and said "that is an O"!! That was thrilling for us because he has not known any of his alphabet since about the time he started having seizures. I can see his wheels starting to turn again, however slow they may be.
2) We have talked to Joshua's neurologist and she is on board with us moving to Keto! She reminded me to be somewhat realistic in that Joshua may not get total seizure and med freedom. I responded that I will let her be realistic since that is her job and that I will be optimistic, enthusiastic and I will make it happen! I like her so much - she has been amazing to us and I am glad she will remain our Dr. even when switching to keto, but she probably thinks I'm a little nuts. :-) I want her to use Joshua as an example some day to all the other parents about what can be done to help our kids. I told her I am determined to get Joshua seizure free and med free and back on track and I won't stop until I do. I probably am nuts, but I choose HOPE because without it, what else do I have? It is not good enough for Joshua to have seizures every day - it is just simply NOT GOOD ENOUGH! I won't settle for anything less than complete seizure freedom and getting my son back from the beast! Ok - I'm teary eyed now so moving on......................
3) I have finally figured out how to use ketocaluclator. For those of you that don't know, ketocaclulator is an online program that calculates the keto (or MAD) diet to your child's specific ratio and nutritional needs. I found this program to be very overwhelming when we first started MAD so I gave up and created my own spreadsheet to help us. The spreadsheet has been working fine and my dietitian was impressed with what I came up with an how we managed the diet. However, knowing that we are going to switch to keto and after getting a better tutorial of it at the keto conference I decided we better give it another "whirl". To my surprise, I find it so much easier to use and it has been a great benefit to us. We are calculating most of Joshua's meals through the ketocalculator now so that we have all of our list of meals in there and ready to go when we start keto. Our ratio is lower than what it will be on keto, but all we will have to do is adjust the meal to get to the higher ratio they put us on and the new dietitian will help us do that and set our meals up correctly. Looking forward to starting keto (although I am still nervous about it) - wish we had a start date.
4) Next set of appointments - We go back to see our current dietitian next Friday (October 12th) for his check-up (we will need to get his blood drawn a few days before so we can have his blood work back in time for the appt.). We then go to Swedish on October 29th for our keto consultation appt. and then we go back to see his neurologist on October 31st (that's right - nothing scarier on Halloween then a visit to your neurologist). He He. Just kidding! Between the keto consultation appt. and neurologist appt. we should know by the end of the month the full plan going forward for starting keto and anything we need to do prior to that. We are not sure if we will need to get a new EEG done prior to keto so we have a good baseline and we may need to change over one of his meds as he is on a liquid that I am sure has sugar in it. I am interested in having another EEG to see if it looks better than the last one (that we had in April), especially regarding his subclinical activity (e.g. seizures that he is having, but that we don't see). I also think it may be a good idea to have a baseline so we can see what affects keto will have on this EEG, but they will need to tell me if we are going to do another one or not.
I feel good that we are moving in a direction and I'm hopeful that keto will bring us the seizure freedom, yet I have been teary eyed a lot yesterday and today thinking about things and I'm not really sure what the trigger is. Maybe it is not just one thing, maybe it is just everything. Like when I look at Joshua and realize what he has lost cognitively and that he is not developmentally where he should be for a 4 and 1/2 year old. And, when he gets sad and upset when he can't have foods that he wants to and he realizes he is "different" than other kids. And, when I check on him first thing every morning I have a panic attack the first few seconds until I realize he is breathing because he is at risk for SUDEP (Sudden Unexplained Death in Epilepsy). And, when I hear any tiny noise or sudden movement from him I go rushing to see if he has had a seizure. And, if he has any sort of accident and hits his head I instantly think it was a drop seizure and my heart drops out of my chest. And, sitting with him night after night after night for months and months counting his seizures and feeling like they will never stop. The nightmares I still have about finding him in his first grand mal seizure and not knowing if he was breathing or not. All the education, medications, sickness, setbacks, side effects, changing schools, doctor appointments, assessments, EEGs, everything! I truly had no idea how much our lives would change - the bottom fell out in January and we didn't even know it. It is hard living with this day in and day out where epilepsy and seizures and diet dominate your every thought and every conversation to the point where you don't even know how to talk about anything else. The impact this is having on Cole who doesn't deserve to feel the way he does, but they are his true feelings and we have to take responsibility for that knowing that we have spent so much time on Joshua our other son feels left out. THAT IS TOUGH! This is all tough and the parents that live it every day know exactly how it feels. I am usually very upbeat, positive, determined, fierce, warrior mama, but today and yesterday I'm feeling a bit different. And, it doesn't make sense because he is doing well, we have a plan and we have HOPE. So, not sure why I am feeling like this - maybe I'm just tired and over thinking things? Maybe I just needed to vent a little? This is hard and we need more awareness and this will drive me to do things to bring more awareness, like becoming a hope mentor. I need to turn the frustration and sadness into action - enough whining. Sorry for the long ranting.
Thanks again for all my supportive friends and family who have been on this journey with us this year. We love you all!
