Opsoclonus Myoclonus Syndrome Update
It has been 6 mths since Hunter was diagnosed with Opsoclonus Myoclonus Syndrome. You can read about it here: The Rogue Zebra Has Been Caught and Named It has been a LONG HARD road. I cannot even describe how hard it is to watch him, day in and day out.
Everyday is hard. I cannot even remember what it was like when he was “normal.” Where he was 98% potty trained, speaking well, able to eat, sleep….just being sweet. Now, our days are filled with Parkinson type shaking, slow and methodical speech, hypersomnia or insomnia, not eating well, not drinking well, rages that are beyond a 3 yr old rage. His eyes dancing, falling all the time….I mean it is hard. You can see our videos on YOUTUBE.
We are all tired. Hunter is frustrated. We are, currently, at the hospital getting another round of IViG therapy. It is a 7-10 hour IV push. If we do it too fast, he is throwing up, lethargic, arms/legs hurting, head hurting, and all sorts of fun side effects. When we can stretch it out, some, he has some symptoms but not all of them. He is usually symptomatic for about 7-10 days after treatment. Then we have about 10 days of little symptoms, and then it gears back up before our next treatment. He only has opsoclonus when he is tired…..but within 30 minutes of starting the IV, his eyes started dancing.
Our attending physician (pediatric neurologist), spent a lot of time with us, today and for that, I am grateful. He listened to my fears, we talked things through, he was as encouraging has he can be with me and he is wonderful with Hunter. This disease is 1 in 10 million…………most doctors, nurses, ERs, or pediatric neurologists never see this in their lifetime and there is no cure because we don’t always know the reason for onset. Most times is neuroblastoma that is encapsulated within the chest cavity. It can and is removed but it does not stop the symptoms.
There is a treatment that we are adding. ACTH (a mega type steroid that helps your body to produce the hormone cortisol). It is a beast. Side effects sucks. We will do that in combination with IViG (immunotherapy) and Rituximab (chemo). We start this new drug in January, so we shall see. It is hard to administer (IM shot) and it is hard to get off of. The longer my son has these OMS symptoms, the more it takes affect on his brain and causes permanent damage.
One day, there will be a reason for OMS and there will be a cure….heck, it could be Dr. Sweeney who finds the cure, on Hunter….who knows. I’m thankful for the knowledge of Dr. Wendy Mitchell and her consult with our case….just because she is kind and she has seen a lot of these patients. I’m thankful for our OMO nurse, Kim………., Dr. Sweeney for listening, emailing me back, wanting all information.
God is good….even in times of trials and pain. He is teaching me. He is refining me. He is telling me that I do not control every aspect of life and I cannot control OMS, but He can because He is bigger.
May a cure be found.
Any questions……..please ask!