Friday, March 7, 2014

Kreed's New Diagnosis

Kreed has been faced with many life changing events in the past year. It was about this time exactly last year that we knew something was wrong with Kreed. First it began in January...a slow decent into nonstop obsessions and tantrums. Sometimes it takes a few weeks to really notice the increase. Then one morning I was going to give him his thyroid pills for his hypothyroidism and I happened to set them on the counter instead of putting them in my hand and straight to Kreed. Then my heart stopped- both pills were the same size. In the past, one pill was always larger than the other. Fast forward an hour or two and the pharmacy admitted they had messed up his prescription and he was being doubled dosed on one of the pills and not given the other. Since his pills are compounded, they were both white, but one had always been slightly larger. I didn't notice for three weeks because that size difference doesn't seem like much when they are just in your hand. So at first, we attributed his rages to the mix up in meds and thought within a few months things would be normal.

Fast forward to the summer and his rages were out of control. I talk about this more in Kreed These Days.
By October his rages were completely gone. Replaced with one happy boy who was communicating like crazy. Kreed was active again. Kreed was happy again. We had our boy back! His level of communication was astounding and amazing and we filmed every part of it. We were so thrilled. He may have Addison's, but the medication was doing the trick and everything seemed stable.
Six weeks ago we began to notice Kreed was laying on the ground a lot. Given that Kreed is incredibly hyper- we took notice. Then a few hours at a time became ALL day. We took his blood sugar- normal. In the past that was the only thing I knew that would put him on the ground. Then a few weeks into it, we began to check his pulse- wicked fast. And so began a new kind of hell...watching Kreed lay one the ground uninterested in everything. Sometimes he had trouble breathing. I was finally able to take his pulse regularly and it was sky high. Resting was 115-130. Standing was 130-190. Everything seemed to come crashing down again. He had variable pulse, blood pressure and really spent all day wanting to do nothing.
We even took him to the hospital which is in Sickness and Communication.

Finally we were going to take him for an EMG/Nerve Conduction test. The anesthesiologist walked in and said no way after looking at him for five seconds. She saw his blood pooling, heart rate and blood pressure. Said no way could she put him under for a painful test. She wrote out everything she thought it could be and told us to get into a cardiologist ASAP. And so we did.

And found a fabulous pediatric cardiologist. He checked out his heart with an echo and talked to us for almost two hours. He diagnosed him with Dysautonomia, and more specifically POTS (Postural orthostatic tachycardia syndrome). Which basically means an intolerance to standing up! Here is the specifics:  a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. In addition his blood pressure is unstable and blood pools in his legs and cause swelling.

Finally putting a name to things made treatment options better, but the thought of it all still filled me with sadness. Knowing for a while our very hyper fun loving boy was exhausted and with little interest in activities that would fill him with excitement. Reading others perspectives was also hard because so many are exhausted just by being awake, much like Kreed. He lost a lot of his mobility from so much time on the ground and us unable to get him up to do things because it made his heart work so dang hard. We are now trying to get him moving again, even entered a bike contest to get him a much needed adult tricycle.

But just as his autism diagnosis changed his life, so has this one. Now he has to combat the mere act of standing up without feeling exhausted. Such challenges this boy has to face. Sometimes I think it's not fair. And yet, I still get glimpses of his dimples and pure smiles and adore and love him so much for the brave face he puts on. I can't imagine what it's like to live inside his body AND be nonverbal and unable to tell us how it truly is inside of him. I know he must go mad at times.

We do face this with new resolve and he has already started medication that seems to be making an impact, but he still is not where he once was. I'm sure we all wished in the past that Kreed would be less hyper. Now I take that back. Every word of it and I'm ashamed at myself for everything thinking that...given his now not as hyper state. Sometime I'm angry. Sometimes I'm sad. But now more than ever I'm determined to get him answers. Like what lies at the heart of all of this for him? Is it mitochondrial disorder? Something else in his DNA? One day I know we will find the answers. Until now we are dealt the hand we are and must find new ways to make Kreed feel better.

Raising Kreed is truly a full time job. Maybe some people would be bitter over the fact- you can't just take vacations on a whim, you are limited on the restaurants you can eat at and you can only go out to the places you want when there is respite. There is lost sleep, lost hopes, lost dreams. There's the heart ache that follows every new diagnosis. Heart ache every new symptom that overcomes him. There's fear every test he is put under on what they might find.

But then there are mornings like this
And our life is truly all about Kreed...but I don't think of it like that. I think of the challenges he has to overcome and for the most part he is a pretty damn good kid. He's not aggressive, he doesn't want to hurt others ever. He is sweet. He is kind. He has a lot to say in his head and can't say it. Sometimes I yell at him, sometimes I get angry at the things he does. But it dissipates within minutes often. Some days I might be frustrated for days over his behavior- but it comes from the fear of the unknown rather than he himself. The thing is- I would sacrifice everything for him. Gladly. Without question. He has one hell of a crappy hand in life and for him I find it incredibly unfair. I can talk, I can walk, I can stand without pain. I can write, type and communicate with others with ease. I can be independent and do things for myself. Kreed can do none of these things. He even has to ask someone to make him a meal. When I think of all of that- of course I would do anything for him. No questions asked. If I had the means, I would purchase a house on the beach and let him live the rest of his days out there, feeling the surf run over his body and watch every sunrise and sunset with pure joy. That's what he deserves. To enjoy the things in life that make him happiest because life as a whole is very unhappy for him.

So do I care that life is all about Kreed? No. He didn't have a choice to deal with everything he has. But I have the choice to make his life better. To help him in any way I can and constantly better what he can do. Do everything I can to help him communicate. And give him as much love as I possibly can and give him the things in life that do make him happy.

I'm not thrilled with his new diagnosis and way of being, but I'll be damned sure to get everything he needs to be well and feel better. We always hope for a better life for him, and we do everything possible to make it happen.
And without further is the Sensory Chewelry Giveaway!!! Two people will each receive one piece of kids companion Chewelry from Mayer-Johnson!!!Go check them out No therapy room or school room is complete without items from Mayer Johnson! Kreed has never used their chewelry however, we tried it out...and its the first chewelry he has not completely bitten through. His puppy Finley even stole it and tried to bite it and the puppy barely left teeth indents! Holy cow! It is actually now Kreed's favorite Chewelry. Couldn't believe it. So thrilled though. So bring it on!!
(Results may vary about being a "chick magnet" while wearing one, but it's highly successful for Kreed :))
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