Post MRI & EEG

As an update to Blake’s MRI, he later had a 24 EEG at the hospital. He did so well hooked up to machines and bandages on his head that were recording all of his brain activity! He walked around with a smiley face backpack with wires stuck in them while playing legos and bouncing a ball around the hospital room. He even got a visit from 2 Orlando City soccer players! I was so proud of him for handling it all so well and being such a good sport.

The result of the EEG revealed that Blake is having epileptic seizure activity, not to be confused with full on epileptic seizures.  His episode occurred as he was watching television in the hospital, something we try to limit at home (along with any electronics. He isn’t allowed on an iPad at all.) This is a decision we made a while ago ago after realizing how much any electronics changed his behavior. Electronics and too much TV make him very irritable and moody. (There’s also a lot of research out there stating this happens to most children, although it affects kids like Blake much more.) After speaking to his neurologist and discussing the seizure activity, she said his episode very well could’ve been triggered by a sensory overload with the television, especially since he struggles with sensory input. She said to keep him on the track of limiting any kind of electronics the best we can. I wonder how this will impact him in school when digital learning and curriculum becomes more frequent the older he gets. I do not think the “powers that be” in the state and county level take into account kids who have sensory issues when it comes to all of this required computer work. Just food for thought.

They’re also going to do another in-house EEG in 6 months and another 24 EEG possibly in a year. These two tests will tell us if the seizure activity has turned into full seizures, and if they’re occurring more frequently. He could grow out of them, they could stay the same, or get worse. Only time will tell.

The purpose of the EEG was to find out if his headbanging was due to nighttime seizures, but he had no abnormal brain activity at night while headbanging. The neurologist spoke to me saying that it’s most likely all tied to autism, as this is fairly common with kids on the spectrum. My response was that he ONLY does it at night, to which he replied that that’s just when it’s all manifesting–all the sensory overload, lack of sensory, anxiety, and all other related issues are catching up to him at night and he goes into headbanging mode. I guess that makes sense.

We continue to have his bed lined with comforters and try to stop it when we catch it. He hasn’t done it so bad where it’s scabbed up in a few months, so that’s a positive.

He also had low oxygen levels and an asthma attack episode in the hospital. He was diagnosed with asthma 2 years ago but the hospital sent in a pulminolgoist to speak with us and said we needed him on permanent meds all year long, so they gave a new prescription since we’ve been having recurring breathing issues with him. We’ve had 2 follow ups with the pulminologist since this and we’ve finally gotten his breathing and colds under control after all these years! I guess the trick was to see an asthma specialist instead of just our primary doctor. He’s on a steroid inhaler twice a day, every day, and it’s finally doing the trick. We used to only use that when it was cold season, but the trick is to stay on it as prevention. I’ve brought it up for years with his pediatrician that I thought something more permanent was needed because he would have recurring issues, but was told otherwise.  I’m thankful he had an attack in the hospital when we were there because it’s really helped!

There’s been so much that has taken place since the EEG.

Insurance stopped covering his OT because we were only allowed so many sessions.  We could pay out of pocket, and may go back to them at some point, but for now we’ve taken a break. Plus, insurance doesn’t like to cover anything related to sensory processing disorder.

We also stopped speech therapy for stuttering because he was doing so well.  His stuttering comes in ebbs and flows. We’ve started and stopped several times, and return when it starts getting bad again. The trigger for most who stutter is often anxiousness, and with the new school year starting his stuttering has begun again, though not too severe. We are going to wait it out a few weeks and see how it goes and start therapy again if we don’t need to. Getting insurance to cover that was also an ordeal. They wrote us a letter saying they wouldn’t cover it because it wasn’t a neurological issue like other speech problems, so I had his neurologist write them a note.  Dealing with insurance is ridiculous, I tell you. I’m about ready to start an advocacy group to stand up for these kids and get insurance to start listening to the needs of these babies. We’ve spent a ton of money, and I’d do it again, but it would be nice to have it covered since we pay for insurance every month anyway.

A few months ago we started Blake in counseling to help him manage his emotions. We do what we can at home by talking to him and trying to help, but at some point I realized a professional was needed. He’s sometimes easy to anger, extremely impatient, competitive, hard on himself, and inflexible. She’s working with him to identify it and channel it all a little better. She’s really great, and though she only sees kids who are 6 years and up, she took on Blake because she said she finds him interesting and fascinating, and always feels like she’s not really talking to a 4 year old anyway. Ha.
She’s commented several times on his hyperactivity, which we’ve observed, but OT really did help this a lot, and the more sensory input he has the more controlled his hyperactivity is. I’m not looking for an ADHD diagnosis, because I think his hyperactivity (which is definitely more than an average 4 year old) is secondary and is the effect of the cause–sensory. Either sensory overload, or not enough sensory. Finding the balance is key.

He began VPK last week and the transition has been a bit difficult, and this is when the stuttering began again. One thing he’s struggled with is the table toys they have first thing in the morning. He can’t quite understand why the table toys are different every morning when he walks in, and this really bothers him. He questions everything through the day at school, wanting to know how long each task is going to take, why they’re doing what they’re doing, and what will be done next. Much of this is just getting into the routine of things but for someone who always wants to know what’s next, it’s a struggle when it’s all new.

This is the kid who wants to know every morning when we wake up, “What are we doing today?” if he doesn’t already know. Once you tell him the order you better stick to it, or explain why you’re rearranging it, in which case he’s fine with it, as long as the reasoning makes sense.

But I also do want him to learn flexibility, so we talk a lot through this, but that’s the struggle where I need the counselor’s help.

I never want to change the person that he is, but we could all use a little tweaking to strengthen our weaknesses, and that’s all I want to do with Blake.

The past few weeks he’s been generally irritable, easily agitated, more impatient than normal, and very argumentative. I often feel like I’m arguing with 15 year old. And he even outsmarts me sometimes. This kid should be a lawyer.

We don’t want to take away any diagnosis, but help him to live with it and teach him strategies.  That’s always the goal.

He hasn’t been formally tested with a diagnosis-that happens in November (I had to schedule it practically 6 months out!)
Thankfully, he also attends the school I work at and he’s also going to get tested there coming up. Not sure if this will result in an IEP, because he isn’t academically low. In fact, he’s about a year ahead in Math, but he needs the social and emotional end, and it would be nice if he could also get OT and speech therapy services through our school, but I’m not holding my breath for any of that. It’s extremely hard to qualify for, but if anything we will request a 504 which will allow him some accommodations with requesting he has constant communication and maybe a picture schedule, and allowing him a lot of movement throughout the day.

Though we don’t have the “formal” diagnosis of Asperger’s/ASD, everyone has said it: neurologist, OT, speech therapist, and now the counselor, and countless others. We don’t NEED the diagnosis, but having it will get him services he needs in school to help, which I wouldn’t even consider if I didn’t think it would improve his school experience, and if I didn’t already see the benefits of having these services in place. The struggles at school will only increase the older he gets, so we are trying to be ahead of the game.

I don’t want the “label”, just the services to help him, which you have to have in order to get the services most times.

It is what it is.

He started doing Tae Kwon Do a few months ago! I’m so happy with it and he LOVES it. He’s in a class with kids older than him, because the class with the kids his age wasn’t the best fit for him. The kids were too loud and he complained it hurt his ears. Plus he generally gets along better with younger or older kids anyway. Tae Kwon Do is active, which he needs, and it’s also great for his coordination, which he really struggles with a lot, something else OT helped with. Combinations that require him to do multiple steps, like kicking and punching, are confusing. Though he knows his left from right he has difficulty processing the two. He also cannot do jumping jacks because the scissor motion and using his hands together is hard for him, but we keep practicing and I know he will get there. Coordination can be difficult for any kid with ASD because their neurons are simply connected differently. It isn’t that they can’t do things, it just takes more work. He’s so cute to watch doing his moves!

It is all a journey and I continue to learn so much.

Some days are harder than others. Some days I get so tired of overly communicating with him and explaining everything and I get frustrated. I wish I was perfect for him. But, I’m not. But he’s really a good kid who just needs a little something extra.

In church today the pastor was talking about how in difficult times we must remember that God is writing our perfect story, through all those imperfections. And I love that thought. That God has this beautiful story for Blake. I just know he’s going to change the world, because he’s already changed mine.

I’ve enjoyed talking to other moms going through the same thing, and this blog has helped me to connect with others and point me to some great resources. Sometimes even the hand wave, “hey, I’m over here and going through the same thing” is just enough to push me through.

It’s all about community. I can thank the internet for a lot of that.

Or should I thank Al Gore?