25 February 2015

A New Diagnosis... Rolling with the punches

For quite some time we had been concerned with Bryce’s tone. The scissoring of his legs was the worst we had seen it and his tone had been extremely high. Back when we went through SDR, the operation was to address the spasticity in his legs. The operation did eliminate the spasticity and he was able to have full range of motion in his ankles. However as he recovered and grew stronger it became very apparent that his tone was still a big part of the problem. SDR doesn’t solve for the tone, but other operations could. We have had several discussions on surgeries to address and hopefully manage his tone. Recently we opted to go ahead and begin Botox injections again so that Bryce could get more immediate relief while we discuss the next steps.

In late January we had met with his CP doctor for the injections and to discuss what those next steps should be. They sent in a Child Life Specialist to entertain Bryce during the appointment and to also help keep him as calm as possible during the injections. As they usually do they asked what Bryce loves so they could bring in the IPad and show him his favorite cartoon or play a game. We told her his love of sports and that he would be most happy with that. This decision ended up being key for that appointment. Bryce gets very excited when he watches any games so this gave the doctors an opportunity to see Bryce when he was excited (since most times he is NOT very happy to be there). When they witnessed Bryce and how his body responded when he got excited the atmosphere in that room changed. It became very obvious to them that this was dystonia.
Dystonia is a movement disorder that causes a person’s muscles to contract uncontrollably. Over time the contraction can cause the body part that is affected to twist involuntarily and can result in contractures and abnormal postures.

The symptoms of dystonia can range from mild to severe in nature. So the reaction of Bryce’s body when he is excited is the brain sending the response to certain areas of his body. Bryce when watching sports will point his toes and scissor his legs. His arms get tight and go straight out (like Batman arms). He also has times where he will turn his head a bit and grind his teeth. All of these responses are a result of the message from his brain to these muscles. All along we believed it was just his excitement and his tone kicking in which it was. However, I never considered this as being something bigger and more concerning.

There are several other symptoms of dystonia that Bryce has that we were unaware would be related. When he eats he lets his head fall back and we constantly have to adjust his head position when eating. Some days he will keep his head turned to one side and we have to move the chair sideways so that we can get to his mouth. They also asked if Bryce keeps his arms bent and I explained that he did when we would try and change his shirt but definitely when we were putting on his winter coat (which is a very difficult thing to do). The more we looked into the more things became clear. We knew that things had changed but had honestly thought these changes were a result of him growing. Hearing this news was pretty devastating even though I really can’t say that it was completely shocking.

Why so devastating? The diagnosis of Cerebral Palsy was tough but we also knew that it wasn’t a progressive disorder. We knew that over time we would have to manage his tone but I honestly always believed that once we made it through all these phases of growth that we would be able to better manage his tone so that he could at least be comfortable. Dystonia is a completely different ball game. Most times it is a progressive disorder and (as the doctor told us) it is extremely difficult to manage. It never goes away and it can change over time. Some people deteriorate and can lose abilities. For example, someone that could once eat may need a feeding tube placed.

We discussed several different treatment options and we discussed that every person is different so the right treatment for Bryce will be trial and error. Everyone did agree that we needed to address this now because of the impact that it is having on bone development and so forth. There had been a dramatic change in his right hip from August to January alone…nearing but not quite at the point of needing hip surgery…. yet. So we started a plan to gradually bring on board medication(s) and we have also scheduled phenol blocks that can be injected into very specific nerves. Then we will see how things are at that point before determining next steps. Best case scenario – these things alone will be management enough (at least for now).

For a few days I had to exercise my right to be upset, mad and to kick yell and scream. It’s hard when you can’t find a release – when you are so mad and upset that you have no idea how to let it go. How can you keep spinning the positive when you keep getting punched in the gut? So as much as I wanted to throw my hand’s up and let the entire world know how unfair this is to my sweet sweet boy – I just tuck those feelings away again. We will deal with this and find the best way to manage it knowing now what we are up against.

The phenol blocks have been scheduled for early tomorrow morning. We are to arrive at 6AM and the OR is scheduled for 7:45AM. We should see an immediate change when he wakes up (Botox takes a week or two before any change could be seen). If all goes well we should be able to come home tomorrow. For a few days it may be hard for Bryce to adjust and he could seem a little “floppy” but hopefully this works and will last as long as possible before he needs it again. It is temporary but unlike Botox that lasted maybe 3 months for Bryce – this “could” last up to 10 months for him. I hope and pray that it will last that long for him but with it being his first time we won't really know. I am praying for positive results and a prolonging of a much larger surgery.

21 January 2015

Giving Voice

When the boys were younger we were very focused on helping Bryce overcome some of his physical limitations. We knew that he couldn’t sit unassisted, crawl, much less walk. At such a young age he had a very busy schedule full of therapy and specialist appointments. We were doing all that we could to give him every opportunity to overcome some of the many barriers that he faced. It wasn’t until their second year of preschool that we needed to start also focusing on his communication. Sure, we knew that he wasn’t talking but at home we could easily communicate with Bryce. We knew what his different signs were for when he was hungry or thirsty. We knew if he was happy or sad and usually we would know exactly what he was wanting. It isn’t until you realize that the rest of the world might not know those signs that it really started hitting home. Then your thoughts take you to other places…. Bryce is excellent with his head shakes for “No” and “Yes” but I am not always sure the choices we gave him were what he would have chosen to “pick” from. So the year before they were to begin Kindergarten we started the process of trialing communication devices that would work for him. If you have ever met Bryce you would know that he is a bright boy, but even we didn’t know how much he knew. Did he know all his letters? Numbers? We really couldn’t answer that with certainty.

Many devices require use of a hand or finger to make selections for communication. Bryce has little use of his right hand as it stays fisted most of the time. He is a definite lefty but he cannot use his fingers to make precise selections on a device. We heard about a relatively new method of communication that allows a person to make selections on their eye gaze. So all therapists were on board and it was very clear that this would be the best device to start with. The initial evaluation and Bryce’s first time using the device was AMAZING. I wrote a post shortly after on that experience. If you missed it click here. He went through several more working sessions in order to document for insurance that he was successful using the device. Let’s just say that the battle of getting this device covered by insurance has been one of the longest most painful experiences yet. I won’t taint this exciting news by going into the very long process. BUT….Finally last Friday, January 16th, we received approval for Bryce’s communication device. It is so hard to believe that 18 months of trialing the device, receiving many denials, requiring more and more information… Bryce will FINALLY have his very own way of communicating.

The device (Tobii Eye Gaze I15) will calibrate to Bryce’s eyes and he will be able to operate it much like we use a mouse to operate a computer. The amazing thing about this device is that it will mature with him. The software will require updates so that the programs that Bryce will be using will grow right along with him. The device will give Bryce the ability to make choices, express his needs/wants and let us know about his days. It will even allow for him to use synthesized/digitized speech that will “say” what he chooses. You can even select a voice that is age appropriate that can also adjust as he gets older. Eventually he will be able to send emails and text messages and access the Internet. It can even turn channels on the TV, operate a DVD player, turn on lights and open doors! There is a built in camera that would allow him to take pictures and post images. He can do homework or classroom tasks and print them right in the classroom. I am simply amazed and so thankful that we live in a time that such technology exists!

As you might imagine it will take some time for Bryce to build up endurance to use the device for long periods. He will have to train his eyes and strengthen them in order to be able to use it for long periods of time. We just click a finger or type a key to make our selection… sometimes without needing to look at what key we are selecting. Bryce will have to “gaze” at each selection in order for the software to identify what he is choosing. Matt and I will also have a lot of learning to do and will need to participate in some training as well. But it is so exciting to open this door for Bryce! I am so excited that we will be able to communicate with Bryce in a way that he can let us know what he is thinking, how his day at school went, who his new friend is and so on. It will take time and very small steps – but it will be so worth the wait!

Just because a person can’t speak doesn’t mean they have nothing to say.