Today is Purple Day! The Global Day of Epilepsy Awareness. When we got back from Emmett’s audiology appointment yesterday a friend of mine messaged me on facebook and sent me a screen shot of a donation she had just made in Emmett’s name for Purple Day. It completely took me by surprise and made me all sorts of teary! Thank you again so much, Christine, for your generous donation! We have so many friends and family that show their support and love and it really means so much to us.
Here are some statistics (that shocked me) about epilepsy:
– Approximately 1 in 26 people will develop epilepsy at some point in their lifetime.
– At least 1 in every 10 people will have one seizure in their lifetime.
– There are approximately 65 million people around the world living with epilepsy.
– There are more than 300,000 Canadians living with epilepsy.
– There are approximately 2.2 million Americans living with epilepsy.
– Epilepsy is NOT contagious. Epilepsy is NOT a disease. Epilepsy is NOT a psychological disorder.
– There is currently no “cure” for epilepsy. However, for 10-15% of people with epilepsy, the surgical removal of the seizure focus – the part of brain where the person’s seizures start – can eliminate all seizure activity. For more than half of people with epilepsy, medication will control their seizures. Additionally, some children will outgrow their epilepsy and some adults may have a spontaneous remission.
And it doesn’t end there. With epilepsy can also come SUDEP, sudden unexpected death in epilepsy. SUDEP is estimated to account for up to 18% of all deaths in patients with epilepsy. There is no known cause so there is no way of knowing if an individual may be predisposed to SUDEP. Purple Day put together this tribute to those that have lost their lives to SUDEP.
“The precise mechanism, or cause, of death is, as yet, not understood. Most sudden deaths of people with epilepsy are unwitnessed and this makes it difficult to determine what, exactly, occurs in the last moments of life. By definition, the post mortem does not reveal a cause of death suggesting that the terminal event is due to disturbance of function, not structure. Most frequently, but not always, there is evidence for seizure activity prior to death and recent studies strongly support a close relationship between seizure episodes (especially generalized convulsions) and SUDEP.
The factors most consistently identified in case studies include those which are deemed unmodifiable, such as early onset of epilepsy and young adult age, and those which are deemed modifiable with the potential to lower SUDEP risk. These include, but are not limited to, frequent generalized tonic-clonic seizures, poor compliance with the anti-epileptic drug (AED) regime and the number of different types of AEDs used.”
In short, epilepsy really f’ing sucks.
With Emmett sometimes it seems that anything and everything can trigger his seizures. Other days there’s no rhyme or reason behind them. We still don’t know what the root of the cause is. Which, as I’ve said many times before, can be really frustrating. The main reason why we want to know what’s behind the monstrous seizures is so we can better care for him now and in the future and know what we may be up against. But if we never find out, then so be it. It definitely won’t change the way we love him. He’s the strongest little dude that I know and I’m proud of him more and more everyday.
And now on to happier things!
Yesterday it was daddy’s birthday! He turned 31-derful and I helped Emmett create a masterpiece for him!
Before the birthday art-fest Emmett had an audiology appointment. The audiologist was AWESOME. I told her about Emmett’s seizures and his visual impairment and she was very attentive and considerate of Emmett. She asked if Emmett was usually bothered by people touching him. I told her that sometimes if he’s not expecting it, it can startle him and it may trigger a seizure. She talked very softly to him and told him what she was going to do before she did it. If she placed an earplug in his ear she would gently touch his ear first and say, “I’m going to put a little earplug in your ear now” and she rubbed his forehead where the stickies were going to go before she placed them. This usually never happens when we have appointments. Usually the doctors and technicians are in a rush and just do their thing and I have to either tell them to tone it down a bit or I explain everything to Emmett as they work on him. It was REALLY great that she was so aware, I wish all appointments would be like that.
He had a few tests done. She looked into his ears first and then put an earplug that had a camera on it and took photos inside of each ear. Everything looked great! She then put a soft plug in his ear and did a tympanometry test which tests how the eardrum moves and it checks for fluid behind the ear. She said that test was really great and everything was normal. We then headed into another room for the ABR (Auditory Brainstem Response) test which would check him for auditory neuropathy. This is a disorder where sound enters the ear normally but the transmission of signals from the inner ear to the brain is impaired. Much like how his visual impairment is. His eyes are completely healthy but it’s the connection between his eyes and brain that is impaired. The test monitors brain wave activity in response to sound using electrodes that were placed on his forehead and behind his ears. A small (and very sensitive) microphone was then inserted into his ear to monitor sounds made by the outer hair cells. She wasn’t able to get a reading with this test, though. Even though he was very still in his stroller she said the computer was picking up tense muscles in his neck. It’s a very sensitive test and the person has to be completely relaxed or asleep for the results to be accurate. We’ll have to go back in a few months time to try this one again. Lastly, she tested his response to sound in a soundproof booth. He sat (and by sat I mean squirmed, rocked, arched forward and backward like the Wildman that he is!) on my lap and she asked me what he would do if he heard sounds. I told her he’d most likely stop moving and be still for a few seconds, and that’s just what he did! There was a speaker to our left and one to our right, so she’d switch it up with her voice and random sounds. One sound in particular, similar to ocean waves, really caught his attention. He stopped moving right away and turned his head to the left where the sound was coming from, so this was great! He responded well to her voice, too. He didn’t respond as well when she spoke more softly through the speaker until she made a faster noise like “babababa” and then that got his attention. Overall, he did great and was responding to sounds really well! Hopefully we’ll have better luck next time with the ABR test.
This was during the ABR test. He looks pretty bummed out but that’s mainly because the appointment was running into his nap time. I assure you, he perked right up once I got him out of his stroller and into the soundbooth. 🙂
We still haven’t heard back from the neurologist on his MRI results, so it looks like today will be the day that I start making some calls!
And now I must go find some purple shirts for us to wear!