Brynn had two Complex Partial Seizures followed by a Tonic Clonic on Wednesday. On Thursday, thanks to the camera recording it, I found a portion around 4 am where his right root twitched for 14 minutes followed by a full body convulsion. I found several more that I had no idea he even had over the first three nights. His Neurologist increased the Zonegran by 50 mgs. to 250. The Depakene is still at 625 mgs. twice daily. He also increased the availability of the Klonopin for him and said to give him one if he has more than one seizure in an hour or if I see any signs of clustering. We dropped the Trazadone back down to 100 mgs. on our own, as Brynn was getting tired without it again. We will see if the Zonegran increase makes it necessary to increase it to two again. Hopefully, we will gain better control again. We go back to Children’s on March 9, so we are getting close. Feels like it has been forever since the last week in November when he went for his testing. Expecting to talk more this time as we know a lot more about the seizures and have videos to show also. We bought the camera system that is able to record on demand or all night. It works great to record all the night activity. I found a 15 minute seizure I had no idea he had on it. He said he was sleepy that day, I didn’t watch it until that night, so I had no idea that his tiredness was seizure related. He is showing interest in Reading again! It is hard to Read with him, knowing that he is doing his absolute best and struggling. He is still using the Merrill Reading Program. He is Reading with the Dig In Reader again. It is a great program for him, from the very beginning of his Home School Journey when we did SOW (Student Of the Word) he has used it. We have tried so many other programs and always come back to Merrill Readers! Merrill strengthens the decoding skills as it builds confidence while using high frequency words in the text. It also has the sequential properties to it that Brynn has always done well with, just like the AVKO Sequential Spelling.  Here is a sample story from the Merrill Reading Program Book B Dig In.

Sid and the Van

I am Sid.
I can fix a van.

The van had a bad fan.
The fan hit the van.
I can tap a pin into the fan.

I see bits on the fan.
With a rag, I got rid of the bits.

I did fix the van.   

I have always been impressed with Brynnon’s ability to pick up on sequential information. I had no idea why, and still do not completely understand it, but it works for him and that is all that matters! AVKO Sequential Spelling has taken him so far in Spelling… I wish he could Read the words he Spells. The brain is a complex and amazing organ. The only answer I have as to why he can Spell a word and not Read it is his wires are missing. His cognitive disability makes it impossible to make that connection. I learned the most from this video I found on you tube while researching Fragile X. It is 80 minutes long and I have watched it a few times. I think about this video all the time as I teach Brynn. What was so frustrating to me before, now makes sense!     

Emerging research on overlapping patterns of cognitive function in fragile x, Turner, and chromosome 22q11.2 deletion syndromes and their implications for intervention. Series: “M.I.N.D. Institute Lecture Series on Neurodevelopmental Disorders” [Health and Medicine] [Show ID: 20284]

Brett is doing wonderful with his Reading. He read Fox on Stage by James Marshall this week. He is enjoying Reading more with each new story. I am using AVKO Sequential Spelling with him as well. I think it’s a great program for anyone!  Brett has taken a fondness to Brandon’s Electric Guitar. He is spending a lot of time with it lately. 

Brett (7)

  It breaks my heart for Brynn to see him advance, knowing that he is being left behind. Brynn had a really hard time when he heard Brett read and realized that he couldn’t read the same stories. I explained that some people are just better at some things than others. Brett cannot take apart a Television and Brynn can.  🙂 This seemed to make him feel better and I have seen a greater confidence in Brynn as he works on his Reading too.  

 Abigail is up to 23 pounds, not bad from 4.11 at birth. She is getting so big… She is counting everything and singing… Such a happy little girl. What a blessing she has been!  She is pretty active and is in the habit of staying up way too late with me watching Brynn… If she sees Brynn move on the monitor she will say uh oh Brynn okay. Children learn so much, even when we think we are not teaching them! 

Brandon (16) and Abigail (20 months)
Brynnon (12)

 

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A Smile as Big as the Moon…

Finally got to discuss the movie with Brynn, “A Smile as Big as the Moon.” I watched it first to make sure it was something I thought Brynn should watch.  Brynn, Brett and their friend that stayed last weekend watched it Saturday night. Brynn has not been to public school yet, so I found the movie to be a good way to show him both sides of what he could possibly face. He has known for some time it’s harder for him to learn. He has heard the Doctors say cognitive disorder, intellectual disability, regression, slow, special needs… but in general he has been blessed and never really been made fun of. He has been embarrassed but not made fun of by other children. Due to the extended seizures we have had to reteach much of what was taught and I realize that he really needs therapies that I just cannot provide him. It is very frustrating to teach him and watch that spark when he “gets” it and watch that spark fade away with a cluster of seizures or worse an extended one. So with this in mind I watched the movie and let them watch. I observed the reactions to the different aspects of it. Sunday evening after the company left, I asked Brynn what he thought about the movie. He responded by saying “I don’t want to be special.” Of course I asked him why? He said “Because special kids get made fun of and I don’t want to be made fun of.” Fair enough… I asked Brynn which child in the movie he thought was more like him… He identified himself with the Down Syndrome child because he was funny and liked to hug. He also identified himself with the Autistic child because he was “big.” I explained that when he goes to the public school he will not stay the whole day, but will go for therapies like speech and language. So yesterday I got my brain all prepared and made the call. I had already spoken with a Lawyer and verified that Brynnon does qualify for services in LA a few weeks ago. So, I spoke to a school counselor, the Special Education Department and the woman that does the Home Bound services… The conclusion… They have never, nor do they intend to service a “Home Schooled” child. Well… Thank you for the reminder why we should all avoid the Public School like the plague… Still considering calling a Civil Rights or Disability Attorney, as under the law he does qualify as we registered under the Private School option in the State… However, at this point I think the risk to his self confidence outweigh the benefits he would receive from getting services through the Public School.
  I didn’t say it because I was scared to… but Brynnon went 8 days recently seizure free! Yeah, silly I know but it seemed like every time I would proclaim 3 days no seizures another would come that night or the next. So 8 days is his new record, since his last extended tonic clonic! The month of January brought 19 seizures that I logged. I logged the ones we saw, except for the really tiny ones that are so quick they are easily missed anyway. I would definitely say he has reached a new improved “normal” concerning his seizures. He is making progress again in his AVKO Sequential Spelling as well as his Time4Learning.com work. The iPad has helped him to have fun and learn at the same time. Hard as I try to get him to have fun with other learning programs, he will spend hours working the puzzles on his iPad. Didn’t take long to figure out that he needed some modifications made to his iPad. You tube was disabled, I disabled the browser and added Mobicip for safe internet browsing. Added parental controls and a password too. No sense handing the world wide web to a 12 year old disabled or not! 🙂 
 Brett is still having those “events” and the plan is still to ask Brynnon’s Neurologist what he would recommend I do next. I think most people would get that you cannot diagnose seizures that happen while sleeping, until you do an EEG while sleeping. Makes perfect sense to me, but the Pediatrician… Not so much! Oh well, we needed to see more Pediatricians anyway… There are so many more left near this town.
 Time marches on and usually brings lots of changes with it. Expecting this year to bring many changes, all for the good. I am pretty excited about the prospects for a better life actually… I want us all one day to smile as big as the moon! Speaking of time, I started writing this blog Monday… it’s now Friday… so I suppose I will go ahead and publish it!  
Have a Great Weekend Y’all!! Till next time here are some pics of the boys enjoying putting the new bunk bed set up…
~Denise 

 New Camera system with night vision! 🙂 See Abigail climbing into Brett’s bottom bunk? LOL


Brett’s normal results….

Brett’s doing  great in Home School. He is Reading really well, it’s amazing how much he has progressed just over the last few weeks. I think he may have been holding back, knowing he was passing Brynnon up. They had company come over for the whole weekend to play and stay the night. It was great for Brynn and Brett to have so much fun playing and being boys.  Brynn has been more tired than usual this past week. I started logging every tonic, tonic clonic or partial seizure 30+ seconds I see on his iPad. He had 19 in 30 days. The Zonegran has made an impact on lessoning them… how long they last and improving or eliminating the postictal period too. His Neurologist mentioned when I reported the last increase in seizures that we still had room to go up on the Zonegran. Think I will put a call in if he continues this trend as it seems like an awfully short “honeymoon phase” with this new medicine.
I spent a lot of time over the last several days reflecting on our past, present and future. Much of my thoughts drift to MS and what was. Amazingly, in MS we had the love and support of so many people who were not family. They took the place of family each one in a very special loving way. Here we have more family, but we have failed to really establish long term constant relationships. So at a point in our journey where we need the most love, support and help… we are alone with the exception of very few. We have wonderful Cajun neighbors, one whom the children affectionately call Gan Gan. She has done so much for us and been so supportive. I pray that our Father will bless her for being such a blessing in our lives. Unfortunately, I have had a family member say about Brynn… “I have talked to him and seen him and there is nothing wrong that that boy” among other things that just are not worth repeating. I have had to fight every step of the way, and finally get some answers, only to realize that it doesn’t matter. People have these preconceived ideas about what intellectual disability looks like and obviously Brynn does not fit. I have always avoided asking for help and never expected it. It does not sting any less to see that most people not only will not help in any way, but cause drama to induce more stress. None of us deserved what the last several years have given us, much less people kicking us around while we are already suffering.  Speaking of being kicked around… To that person who sits contemplating and joking about how to hurt us, gossips & creates drama for fun… You better pray and pray hard… because my Father, the Creator of the universe knows and sees all, He does not sleep.

So… I got Brett’s results, his 30 minute awake EEG was normal. Pediatrician said she will not order anymore test. I said but he did not fall asleep and a EEG can not be considered complete without sleep. She said it does not matter, maybe he is faking. Faking? Yes, she says she had an 8 year old Niece who faked seizures… I said it happens while he is sleeping. How can you fake a seizure out of a dead sleep? She says, yeah about that… No one has seizures only while sleeping. I said Brynn did, in the first two years there were ONLY seizures while sleeping… then he started having them while awake. Brynnon had the same events as Brett is having for years while sleeping, before and after his first known Tonic Clonic. The doctors I asked said it was night terrors. She said Brynn is different. I said, so basically your telling me that I am supposed to watch this happen until, God forbid, he has a potentially dangerous tonic clonic. She said I am sorry there is nothing else that can be done… Medicaid is not going to pay for another test. I said Medicaid? I don’t have Medicaid, I have private insurance. Well they will not cover another test either. There is nothing to be done and no reason to investigate this further. Hmmm… Is it really different because Brynnon is Developmentally Disabled? How does his Cognitive Disorder mean that he is so abnormal that it is accepted that he had his in sleep only initially, but Brett cannot because he is normal functioning? What good is a 30 minute awake EEG on a child that has suspected seizures while sleeping anyway? Brett is normal functioning, he is reading on level and obviously is not having any cognitive effects. I will continue to watch Brett and ask Brynn’s Neurologist at Children’s about it in March when we go back to talk about more options for Brynn.  Seems nothing can be easy… but that’s okay, the longer it takes and the harder you work for it… the more you appreciate it anyway!!! ~Denise