I guess it is kind of sad when a doctors office calls and you get excited. Brynnon's appointment is one week away on Nov. 1st. I assumed because they could not call to make an appointment for him when they received the referral that they would be horrible to deal with. I had planned on going in, talking to the doctor and him repeating test or maybe requesting test results from his current Neuro then we would see him again in a month, or six... Nope not this Doctor... His office actually called today to say that my Son has an appointment with them in a week and Dr. D. would like to know what the appointment is for... Oh Wow, really... He wants to know about my Brynnon? So I tell her that Brynnon was recently diagnosed with Cognitive Disorder NOS and that his current Neuro keeps saying it is Rolandic and his symptoms do not fit Rolandic and well we want a second opinion. Oh, well in that case Dr. D. will want to see all of his records... Wow, I am just amazed that this Doctor has this kind of staff, a busy hospital like Children's and they actually have enough insight to actually request his records BEFORE we get there? I am really impressed, his current Neuro didn't even read the 24 hour Video EEG before we asked about it at the appointment to get the results a month later. I actually feel good about this even if we end up not liking him or choosing a 3rd opinion... at least I can respect a practice that actually wants to accomplish something instead of wasting my precious Son's time. With his cognitive function seeming to loose ground, time is not something I feel we have to waste... It's nice to have that bit of positive amongst the negative that keeps popping up all over the place.
Brynnon broke his pulse oximeter, so I have to replace it again... I am seeing a decline yet again, mainly in behavior, self control... and cognitive function. I had a hard time keeping it together when he asked me today how many quarters were in a dollar. He was having such difficulty figuring out how many quarters he needed to buy a .69 beef stick. I do not think they are .69 to begin with, but it took a bit longer than usual for him to "get it," and it was heartbreaking because he has always been good with money. He wouldn't have had to ask that question before he went to sleep on August 24th... Which breaks my heart even more because this was after the Neuropsychological evaluation that gave the already devastating results, and that was probably his "normal" no one has yet explained to me if this is his new normal or if he will recover?
I will say though that the Klonopin at night certainly does make him sleep better... Still saw a few tonic looking seizures this week and some myoclonic seizures, but he does seem to sleep so much better!! You would think that the better/harder sleep the Klonopin is giving that he would have improved mood. Oddly enough it almost looks like the same pattern of aggression is returning like we saw with the Trileptol. Prayerfully it is just an adjustment thing and next week will be better!!
Will be going to the Pediatrician with Brett soon too, to get his EEG ordered. I really think he may just have seizures... Myoclonic & Complex Partial at night and very few partials during the day also. Prayerfully, it is not the same thing as Brynnon...
~Denise
Brynnon broke his pulse oximeter, so I have to replace it again... I am seeing a decline yet again, mainly in behavior, self control... and cognitive function. I had a hard time keeping it together when he asked me today how many quarters were in a dollar. He was having such difficulty figuring out how many quarters he needed to buy a .69 beef stick. I do not think they are .69 to begin with, but it took a bit longer than usual for him to "get it," and it was heartbreaking because he has always been good with money. He wouldn't have had to ask that question before he went to sleep on August 24th... Which breaks my heart even more because this was after the Neuropsychological evaluation that gave the already devastating results, and that was probably his "normal" no one has yet explained to me if this is his new normal or if he will recover?
I will say though that the Klonopin at night certainly does make him sleep better... Still saw a few tonic looking seizures this week and some myoclonic seizures, but he does seem to sleep so much better!! You would think that the better/harder sleep the Klonopin is giving that he would have improved mood. Oddly enough it almost looks like the same pattern of aggression is returning like we saw with the Trileptol. Prayerfully it is just an adjustment thing and next week will be better!!
Will be going to the Pediatrician with Brett soon too, to get his EEG ordered. I really think he may just have seizures... Myoclonic & Complex Partial at night and very few partials during the day also. Prayerfully, it is not the same thing as Brynnon...
~Denise
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