Wow - It has been a LONG time since I have posted and I have a lot to catch everyone up on. So, sit down and get comfortable as I think this will be a long one to read. :-)
In July we had another 24-hour EEG to see how Joshua was doing as we were seeing seizures at night again. Our Keto team requested that we have the EEG done at Swedish this time instead of Mary Bridge Children's hospital. Our neurologist was okay with that so we went ahead and scheduled it there. Joshua and I had to be there early on a Monday morning so we stayed the night at Mom's house on Sunday night and then went in. Getting Joshua hooked up took about 2 hours and it was not as easy as it had been the last time. He got quite upset several times, but we muddled through and got him hooked up. He had his typical "jerks" during his nap and at night so I marked them in the room and wrote them down on the sheet. My friend Amy (and her daughters) came to visit during the day and my Mom came to visit in the evening. Chip and Cole stayed home and had a "fun" day - they went to Enchanted Village and Wild Waves. The next day the Dr. and the Keto team (nurse and dietitian) came into talk to me about the results. I fully expected them to tell me that Joshua was still having seizures, but to my surprise they told me that Joshua had no seizures on his EEG! He did have two "bursts" of brain activity during the EEG, but they were not correlated to any physical movement so therefore, not a seizure. We got our confirmation that the Keto diet was working! As great of news as this was, it was so far from what we expected that it kind of through us for a loop. We thought he was still having seizures so we had started researching other ideas and had come to the conclusion that we would take Joshua back to MAD (the easier version of the diet) and put him on medical marijuana. We were looking forward to this possible change since the diet is especially hard for him and the rest of our family. At this point Chip and I were often saying we were "done" with the diet. But, with the word that he was seizure free on the diet we decided to stay the course and continue on. It took about a week for us to really get through this thought process as it is a daily battle for us and we are tired.
In late August we moved into our new house. Boy, that was a lot of work and very stressful for the summer. We are now settled, but adding that to our already chaotic life was probably pretty crazy of us. But, it is done and over now! The summer was very stressful with Joshua as his challenging behavior was at an all time high. Additionally, his cheating on the diet escalated extremely high and has not come back down. We LITERALLY cannot take him anywhere there is food as he will cheat. He has gone as far as to pick up chewed gum off of parking lots and eat it, pick up 1/2 eaten ice cream off a park ground and eat it, has dug through a garbage at my friend's house and ate food (we had to promptly leave) and the list goes on. At home, we have gone through several attempts at a locking system in the new house. We currently have our pantry locked with a key and we have to keep that key either on us or locked in the refrigerator because if he locates that key he will go straight to the pantry and eat something. The refrigerator is locked up with a bike lock (it did have two locks on it until he figured out the 2nd lock). The only reason the bike lock works is because it is a combination lock and he doesn't know the combo.
After the chaotic summer we decided we needed help dealing with Joshua's behavior so we started seeing a therapist. She is supposed to be Joshua's therapist, but so far has only met with us. Joshua will come with us to the next appointment. She is helping us with a parenting plan for the behavior, but really has no suggestions on how to help on the diet front which is disappointing. The therapist is okay, but I don't know how much of what she is having us try is going to work for a child that is developmentally delayed, and she has as much said that herself. Frustrating! There is a therapist that we met through our support group that I love as she has had real life experience - her son has autism and is now 21. She truly "gets it" and knows exactly what we are going through. I've met her twice through my support group, but we can't "see" her as where she works only takes Medicaid patients. However, she will be starting her own practice next year around Feb. so I'm going to try to get into see her then and switch therapists.
The boys went back to school in September. Cole to 3rd grade in a new school (because of the move) and Joshua to Developmental Kindergarten. Joshua is in a different school than Cole because Cole's school does not have a Developmental program. Joshua had a rough few days, but has settled into his new school, new class and new teacher. We just had our parent/teacher conference this past week and his teacher was great about explaining everything they are doing in class and working on. The biggest thing they are working on is trying to get the kids to recognize their name and trace the letters in their name. How exciting!
I have saved the best news for last and that is that we are currently weaning off Joshua's last medication. After his excellent EEG in July it was decided by us and his team that we would try weaning him off his last medication (Zonegran). We are weaning VERY slowly which is to go down by 25mg every two weeks. His dose was 150mg twice a day so going down 25mg every two weeks will take us until January 3rd (almost a 6 month wean). It is slower than what we were told to do by his Dr., but the last med wean we had I did the same thing. I have heard a lot of stories from other Doose parents about the difficulties of med weans (breakthrough seizures, drug withdrawals, behavior issues, etc.) so I was not going to take any chances. Also, when we are done with this med his only protection will be the diet which is quite scary in itself (especially with the amount of cheating he does). But, we are rolling the dice and hoping for the best.
We have seen some improvements in Joshua related to his memory and cognitive abilities since we started weaning off his last med. He is much more interactive and engaged with us, is talking a lot more, can express his feelings a lot more and is starting to remember things. He has been coming home from school and singing songs (ABCs, Little Teapot, Months of the Year, etc.) which is just blowing my mind. He is also starting to recognize a couple letters in the alphabet. This is HUGE progress for him! It is exciting to watch him, almost as if he is coming off a "fog" that he has been in for almost two years on drugs. He started medication on Feb. 1st 2012 and we will be coming off all meds 1 month shy of his two year anniversary on the drugs. That will be a great day for us!!! We have to celebrate the little things as BIG things. I was reminded of this in support group this past week when someone said "you have to find something to be positive and hopeful about no matter how bad things seem" and I'm trying to do so. I was also reminded that "there is light at the end of the tunnel, it's just a longer tunnel that most". Very good for me to hear - I love my support group as they truly understand the day to day struggles that others cannot as they don't live it every day.
Joshua still has a lot of challenges when it comes to his behavior, his developmental age and his cognitive abilities and we will deal with those one day at a time. But, for right now we are happy for NO SEIZURES, weaning medications, and improvements in his memory and abilities!
Our next step is to have another 24-hour EEG in mid-late January to see if his EEG is still clear after being off all medications. I'll be a nervous wreck for that one!
