Sunday, April 24, 2016

Possible Diagnosis and Updates

Kreed has been in the hospital, for the most part since February. He first presented with an inability to walk. Followed by a seizure. Followed by more raging and screaming, no sleeping and a slew of other issues. Kreed's breathing began to be affected and doctor's couldn't figure out why. We finally got a resident to think outside the box and he slowly but surely put together the specialists and got them to talk to each other. Ultimately it was decided Kreed's issues were caused from pain, which we agreed with. He was in immense, unrelenting pain. Kreed has been screaming for months in pain. It's been heart breaking to witness and be a part of. His body is constantly hurting, with activity making it worse and he's going hypoxic as a result.
Neurology came to do a larger work up and determined he most likely has Small Fiber Neuropathy along with his larger neuropathy. The small fiber neuropathy is far more painful and affects so much of the autonomic system. What they don't know is WHY he has small fiber neuropathy. It can be congenital or acquired. If it's acquired and they can find why, he will go back on IVIG. If it's congenital then it means it will continue to progress and he will continue to lose function and we are left with only controlling his symptoms and pain.

At this point in time, pain management is the focus of treatment while they work on finding the cause and can do more targeted treatment. Kreed's pain management is compounded by the vast allergies he has and adverse reactions to many. We have trialed activist for two days and both days he raged in pain. Last night in particular, we let him go around on a scooter and take a walk downstairs. Within 30 minutes of our adventure, he was in horrific pain for the next hour and a half until he got a rescue medication. He finally fell asleep in the early hours of the morning exhausted from pain and activity.
I can write all of the above and not shed a tear. But the reality is our life will never be the same. Kreed's life will never be the same. He could end up in a wheelchair for the majority of the time due to his extreme pain when walking, if they can't control it. They could find the cause and then we will have multiple IV treatments a month and hope it stops the progression. Most agree however, that Kreed's days of carefree hopping are over. We have to be vigilant over his activity levels and always be prepared for pain breakthroughs. Kreed is now a patient of chronic pain. Most normal adults have difficulty with ongoing pain and this has happened to our 18 year old active boy who doesn't understand that activity causes him massive pain. I'm trying to figure out how I can possibly explain this to him. Once he isn't in as much pain, I'm hoping we can resume home schooling and our first subject will be about the body.

Most of all, I told the doctors, we have to save his hands. He cannot lose feelings in his hands because that is how he talks. I will move heaven and earth at that point to make sure he doesn't lose his ability to use his hands to talk. Our life has become a nightmare of hospitals, doctors and pain. Our sweet boy suffers so much and it's not fair. I envisioned an active life with Kreed with many hours of hiking in Colorado and so many other activities.
I will post more later. For now, Kreed has small fiber neruopathy and they are trying to find the cause and decide on a treatment. In the meantime, at this time, Kreed cannot be active without causing himself unrelenting pain. It is unknown how long we will be in the hospital, but I would imagine another week at the minimum.