So this is France?

12715553_10208265896782337_2488624869664445143_nI am a Home School Mom. It shouldn’t have come as such a surprise, I knew, I guess I just refused to admit it. I knew how terribly Brynn still struggles to read at a second-grade level. I knew too that Brett still struggles to work on the level he mastered 5 years ago. Somehow, it did come as a shock and caused great sadness to read in black and white that I have two children who are now diagnosed as being “Moderately Intellectually Disabled.” Perhaps deep down brynnbrett1inside I had hoped that the testing would provide clues to reach them, I hoped that I was missing. Surely there was something that would magically make what is taught stick in the brain for later use.
When your children are little and you wonder what they will be when they grow up. As a Mom, you see qualities in each of your children that make them unique and special in their own way. I can still see those qualities in Brynn and Brett, I still momma2think Brynn would make a great, fix it all mechanic and Brett would surely be a wonderful, caring and compassionate doctor. You have all these hopes and dreams of your children’s future and you want them to achieve great things. You hope that they will have even more happiness than you have and if at all possible that they will grow into successful and God fearing people, with a great deal of moral responsibility and grace that they will accomplish many great things.

Have you ever read “Welcome to Holland?”
12782539_10208366778464316_129385383_n I feel like I embraced Holland, which in our case is Epilepsy. I learned all I could about it and I learned to appreciate our family life in Holland. I joined all the groups, found others like us. I advocated I researched thousands of hours and I read more than the tour guides most refer to as physicians likely do about how we ended up here on the genetic map. I made the best out of Holland and did my very best to help all the other parents who ended up in Holland unexpectedly like we did. Now I have been told that I am not really in Holland, I am in France as we are not just dealing with epilepsy, it is moderate intellectual disability as well.  I knew Brynn had been diagnosed with Cognitive Disorder 12722143_10208366778544318_679468329_nNOS and Cognitive Disability, but I assumed that when his seizures were better controlled that it was likely that his cognitive difficulties would be better. His seizures are so much better controlled than they were 5 years ago when he completed his first neuropsychological evaluation. He has been on the same medication for over two years with no adjustments at all, so this is truly who Brynn is and where he likely will stay for life. Never in a million years would I have been prepared for his full-scale IQ to be 17 points lower. We saw an immediate 3-year regression with his second status Tonic Clonic seizure. It took a few years to even get almost back to where he was and he was already behind in all areas. I can only presume that this is what caused the IQ 12782387_10208366778664321_1202466114_nlevel to drop, I have written before about brain damage from seizures.  I couldn’t have imagined that Brett’s scores across the board would be so low either. Both boys score highest in Verbal Intelligence which I have read is usually the case in Moderate disability. I suppose this is a blessing, as they are both able to speak and understand a broad variety of words. So, I guess I need to explore all I can now about France. We will have to find more tour guides, join more groups and find out all we can about this place that we have been placed. I have to wonder, if it would have made a difference had someone told us when they were born that this journey would be different.
About the Seizures
Brett’s seizures still remain pretty intractable. He is having more big seizure free days since increasing two of his medications. Still having a multitude of seizures weekly. His frustration is evident, especially when he falls or has the seizure clusters. He is still having intermittent weakness in his legs and has not received the appointment for PT to see what the problem is with his ankles yet. Brynn is, for the most part, staying at a 1-2 seizure a week trend. He has gotten pretty good at knowing when he has had a seizure nocturnally, even without bed wetting, he can feel the effects and has no problem expressing me how he feels.

 

 

We moved to a New blog site…

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There are a few of you who follow this blog of my sporadic at best ramblings who are not involved in social media, so sorry for the long span without an update. There are a few people that say things like “Your so strong.” I hate that because I am not at all strong. Without God’s grace and help, I would have never been strong enough to get through the stress and trauma I have seen in my life and surely this epilepsy monster would have put me over the top. I have likely done more research than the six neurologist, too many pediatricians, Psychologist, blog9Neuropsychologist, two epileptologist’s and the geneticist combined trying to figure my boys condition and cause of it, what we are dealing with and how to help them. I have still not given up, like everything else in my life I am geared to over obsess over problems until I to let it go because I start to loose my mind or until I reach the answer, whichever comes first.
Unless you have a child with intractable refractory epilepsy it’s
impossible to comprehend the roller coaster that we live on. Every day, blog17you wake up and brace for the unknown. Seizures seem to constantly change and evolve either for the better or worse, but nothing stays the same long. We have been blessed to see weeks without a single seizure and we have struggled when we watched the twinkle in their eyes disappear as seizures took over and stole their precious memories, learning, endurance, laughter and fight away. At least, that is how our journey has been. Plans? We don’t often get to make plans. It is much easier to live spur of the moment. We have left seizure clinic in a wheelchair half the times we have been to see the blog16neuro and once in an ambulance for status just getting a seat belt in the wheelchair.
I have forgotten to bring shoes to the ER, forgotten what medications they take, even given the wrong age and date of birth to paramedics. I am lucky I remember my own name in an
emergency. I have zero sense of direction, and just so you know, I couldn’t find my own home without a GPS if I go too far from home! I am far from being smart, I know all you e-moms think I am. Trust me, I have read thousands of studies and blog224articles about epilepsy, regions of the brain, genes, seizure types and anything else I can get my eyes on. The better I understand things the better I deal with them. Regardless of the situation, I am not the “take two of these and call the doctor if you have a problem” kind of gal. Nah, I gotta know what to call this thing we are treating, research all I can about it, know what caused it and the name and every detail about that drug the Dr. just wrote on his script pad before I put in down any one’s throat! Epilepsy has been my weakness, I don’t know why it’s happening blog13and in spite of the years of research. I still don’t know how to fix it or even what caused it. Brett’s journey has been much worse than Brynn’s. He has has spent months of sleeping 16-19 hours a day and even on good days he sleeps 12-14. His seizure counts in the last six months average 3 a day. He has a large variety: Tonic Clonic, Atonic, Complex Partial and Simple Partial/Aura’s. We still do not count any seizures that are shorter than a minute, unless they come in a cluster and count that as one. When his seizure counts were lowest, his quality of life poorer. Seizure counts blog10higher and he lost endurance, balance, cognitive function and his laughter disappeared. Since his ammonia level and platelet level scare, we never have been able to find balance again. We lowered Depakote and saw an increase, went back up added Carnitine to try to help his ammonia level stay down that helped until a few weeks later he crashed again. We added Onfi, and I assumed that he would do well on it since Brynn has and hopefully get off one or more of the other meds. That didn’t happen. What a mess! His ammonia went back up and platelets blog5down, so we weaned Depakote. All this while Brynn started having an increase of nocturnal seizures, the Tonics came back as did the myoclonic jerks. Saw a new neurologist who is a lot like the old one the boys favorite (Dr. D). He’s almost 3 hours away, but smart and no BS kind of guy. He increased both their VNS magnet settings and put them on rapid cycling.
  He also increased Brett’s Onfi and Vimpat to see a small break and watch the counts rise again.  We decided to keep things as they are with blog19Brynn, offsetting any meds may cause him to go back to where he was. It’s likely best to just stay where we are and appreciate where he is, less is best! He has stayed on the same doses of Fycompa, Vimpat and Onfi for two years now. Brynn has maintained his 40+ pound weight loss well. His confidence is up and he is staying active happily living back in the country again. He is 16 now, so we are awaiting his new IQ test results to have him placed in a transition program that will lead to special job training.  Brett started the testing as well, but could not blog20complete the time needed due to seizures on 3 visits that stopped the testing, so we decided to wait until he is more stable.
We all really like the new house and have been doing a lot of projects around with the really huge Hickory tree we had to have cut down! We are still heartbroken over the horrible service dog experience. Brett has been affected in many ways. Just the mention of Blue can throw him into a seizure. We adopted two dogs to try to help (Flash and Daisy) and while they are fun, they still do not make up for the loss of blog6Blue due to her unstable temperament and aggressive tendency towards men. We put a complaint in with the BBB Here:
http://www.bbb.org/atlanta/business-reviews/guard-dogs/guardian-of-the-night-k9-in-locust-grove-ga-27470394/complaints
Unfortunately the trainer didn’t even respond and has not contacted blog2us since the end of July. We have had to give up on the service dog completely. Honestly, I don’t think Brett could handle the process again and I have doubts that he could bond with another dog like he did with Blue again. It’s a really horrible thing to have gone through, but we will do all we can to make sure this does not happen to anyone else. $5,800 is a lot of money to watch turn into nothing and there isn’t much you can do about it except sue, and loose better than half the money in attorney fees anyway. The Service Dog industry needs to be regulated and laws blog4need to be made to make these deceptive “Trainers” accountable for what they are doing to families. It should be illegal for anyone who has not been through training and received certification to sell a service dog. We are not the only ones, I have been contacted by so many people who have had failed service dogs. I just wish they would have contacted us before I signed that contract! When you have done all you can do just stand and wait… We have gotten this far with God, and with Him all things are possible!  While we are waiting we are getting things done! blog21Brian brought home a huge 8 foot table from work, we used the wood and made a wheelchair ramp out of it! Brett has used a loaner chair from Easter Seals for some time now. The Pediatrician said he needed a better fit, since the loaner was a bit bit, and the Physical Therapist agreed and ordered a really nice NXT Generation Tilt in Space wheel chair for him. One need down at a time!

 

~Denise