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prayeroffaith

Potential Happy Appointment

 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 
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Neuropsychological Report

 Well… I finally have it. In black and white, more clues to Brynnon’s strange mix if woes and problems. 15 Test later we are given a really broad diagnosis of Cognitive Disorder NOS. When you look that up it appears to be a catch all diagnosis that means something is wrong but we just do not have a name for it or we have not identified it yet. He finds significant attention impairment and executive function. The pattern of scores implicates frontal lobes. Processing Speed and attention/concentration are relative weaknesses. His ability to remain attentive over time is impaired, has trouble filtering distraction & directing attention to a specific target. The test results really do give a good picture of what I see and have seen in Brynnon for many years. He actually had the extended seizure that caused some regression just 3 days after the last day he tested for this result. It was advised to continue  where we are and meet again if there is further regression, otherwise it will not benefit Brynnon to complete further testing until around 18 months to assess where he will be at that time and what progress has been made. At least it is more information to bring on Nov. 1st to the Children’s Hospital in New Orleans… Perhaps there we will finally get answers… Prayerfully so…. 
 Tomorrow will be a family BBQ, with cake and ice cream for Brynn and Brett’s birthday. I look forward to a nice relaxing day! Until next time be blessed!! ~Denise
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Wanted…

  A nice peaceful sleep without worry that my little boys may have a severe seizure while sleeping and not wake up… while your at it, how about some assurance that this is not some rare genetic thing that my Brett has too? Yeah, I know big request… How about a device that will sound off before any kind of seizure? Unlikely, I know… Worse part about it all is there are so many parents enduring the same trials. Some so much worse… I just don’t know how to do this one yet. I have overcame so many trials… but this one seems to be taking everything out of me. Maybe it’s the fibro, but I feel like I could sleep all day… I just cannot seem to sleep at night… I have done tons of research… all of which has really not helped much but sure does raise more questions! I will be ordering the pulse oximeter, perhaps this will help and give more peace of mind with Brynn while I figure out what’s going on with Brett… Oct. 8th can’t get here fast enough for Brynnon’s neuropsychologist report… Oct. 18th can’t get here fast enough for Brynn’s Neurologist to explain his 24 hour EEG findings. If all else fails New Orleans on Nov. 1st may have answers… otherwise we will go out of state for answers! I have a feeling we will have to redo the neuropsych testing again, as he has certainly regressed further since his Aug. 25th major seizure…  
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24 HOUR EEG

~All wired up and Awake EEG~

 Brynnon is at the Hospital doing the EEG. I stayed with him until 9PM, then Daddy came and stayed with him overnight. I really hope they will give a better diagnosis with this extended EEG. Prayerfully, we will have a diagnosis and better understanding of Brynnon’s future by the years end. So here are the pictures of the screen shots I took while he was napping this evening… Next appointment is not until Oct. 6th, with the Neuropsychologist for the results of his testing before the last prolonged seizure. I am not even sure if the results count, as he has regressed further. His regression is severe enough for our neighbor to notice. Of course people that do not spend any time with Brynnon would not be able to see it. People seem to notice when they meet him for the first time if they have a conversation with him. I suppose it may be because he is so big. Speaking of big, his weight has jumped again from 118 on Aug. 25th at the emergency room to 124 yesterday at the hospital.  Brian said he did good last night, at least he had a gentle night! ~Denise

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So much improvement!

I must say that anyone who is having problems with a low IQ child in Reading and Spelling… Please get these two products! AVKO Sequencial Spelling ~ Sequential Spelling is AVKO’s premiere seven-level spelling program for the teaching of the patterns of English spelling within seven normal public school years. Sequential Spelling is great for schools as well as homeschoolers. The sequences are not based on grade level curriculum. The sequences are based on building from easy words to advanced words as from all, tall, stall, install, installment, installation. AND Merrill Reading Program ~The Merrill Reading Program provides targeted instruction to help students become successful readers through carefully paced instruction and practice. My low IQ 10 year old was having terrible difficulty in Reading and was very poor in Spelling when we started using these two curriculum back in August. He is now Reading and Spelling! He is Reading on a 1st Grade level and the Spelling is above a 3rd grade level. These two programs go great together, he often Reads and Spells the same words in the same week. I am so impressed with the AVKO Products, I plan to buy more! The Merrill Readers are great, slow paced linguistic readers, taught in the same way. I really believe that the sequencing is the way to teach low IQ, Reading disabled and Learning disabled children. I am so thankful that this is making such a difference in my Son and hope that this information can help another child. ~Denise