Got a call from Brynnon’s Neuro today. He said Brynnon’s MRI appears normal, but that just means that there is no obvious malformation. He says he still believes that Brynnon’s Developmental Problems and Epilepsy are the effects of a malformation and a problem with the wiring in his brain. His EEG was a mess, still very abnormal and of the three complete seizures he had while hooked up two had no outward signs that could be seen and one just had signs in his right arm. He said if I can show him regression we will look into other metabolic or genetic causes, but for now his diagnosis is still Malformation and he considers him to be Refractory. He cautioned me when I said that the new medicine is really stopping the complex partial seizures. He said although we hope that he will continue to respond with the new medication, we cannot let our guard down as children like Brynn tend to “Honeymoon when a new drug is introduced and then loose control again.” I asked him about the Klonopin loosing effect and he said with him being on it for almost 3 months it’s normal to loose control. I told him that Brynnon has had trouble going to sleep over the past few weeks and he said it’s not the new medicine interacting, it’s lost effect. He is not ready to remove it because it may be a crucial part to his recent seizure control, we will talk about removing it later. So he called in a new RX for him to take before bed that will help him sleep as sleep is a crucial part of maintaining seizure control. So we will get that filled tomorrow… I am a little apprehensive about adding yet another prescription to Brynnon’s brain, but I do realize that it is necessary and who knows it may be the key to complete control and prayerfully forward progression in his learning and cognitive function. I will be contacting the public school for speech/language therapy after the New Year.
So… onward we go… this sure is one bumpy ride and frankly I am not liking much about the trip… except the people in the car, I am so greatly blessed to have them! We will let the windows down and enjoy the cool breeze blowing through our hair a while, knowing that Abba is still in control…
We are still waiting for the Video EEG/MRI results from 11/28. I would like to think no news is good news, but the only good news they can give me at this point would be they found a switch to stop the Epilepsy and flipping it will also reverse any damage, causing his Cognitive function to be normal. It would be great to not have to explain that my Son has a Cognitive Disorder and testing proves this originated in the Frontal Lobe of his brain. Yeah, people have a hard time comprehending that just because a child can have a conversation with you doesn’t mean they do not have a disability. I guess it will forever be a problem for my Son because you think he looks and talks normal? Oh well… Believe it or not I really do not care what people think, I am just afraid that they will do more hard than good in acting like there is not a problem. After the New Year I will have to go to the Public School and figure out what services Brynn Qualifies for. His IEP is full of Therapy that would help him develop life skills and become the best he can be. I certainly cannot provide all his needs.
I got the answer from OCDD today. I initially went thinking they will say he qualifies for Special Education Programs and maybe some Therapy. I didn’t expect them to say that he qualifies for services. I didn’t realize how shocked I would feel to see in black and white the the State has defined my child as Developmentally Disabled. Even when you know something, think you are prepared… it just seems to hit you when you see it on paper, from the people who know what they are talking about. So me being the OCD research read everything in one day type…
“Developmental disabilities are birth defects that cause lifelong problems with how a body part or system works. They include
- Nervous system disabilities affecting how the brain, spinal cord and nervous system function. They cause mental retardation, including Down syndrome and fragile X syndrome. They also cause learning and behavioral disorders, such as autism
- Sensory-related disabilities, which can cause vision, hearing and sight problems
- Metabolic disorders such as phenylketonuria, which affect how your body processes the materials it needs to function
- Degenerative disorders such as Rett syndrome, which might only become apparent when children are older and can cause physical and mental problems
Most developmental disabilities have no cure, but you can often treat the symptoms. Physical, speech and occupational therapy might help. Special education classes and psychological counseling can also help.”
So… this is where we are… not sure where we are going but apparently we are going this way… Hopefully it will not be too late in the week before we get the Neurologist results…
|Brynn after Pneumonia and too many seizures…|
|Abigail to make you smile… Works for me, without fail… 🙂|