Monday, September 16, 2013

Where do I even begin??

I started this blog with the intention of blogging frequently. Kreed must have heard this thought I had, thought otherwise and said" Challenge Accepted." And so begins our journey of behavior and medical mystery.

About six months ago Kreed began to have SIB on and off and tantrums on and off. No big deal right? He has autism and is in puberty- to be expected! Then you have a kid that also has epilepsy, hypothroidism, a metabolic disorder (SCAD), immune deficiency and the list goes on. First we assumed the tantrums were related to just autism, his understanding and lack of communication.
Oh and his OCD- have I talked about that? No ? Probably because it was such a nightmare. The kid was obsessed with food places. Five Guys has a checkered print inside the dining area. Kreed could pick out a checkered pattern ANYWHERE and show me that's what he wanted. But it wasn't just that he wanted it. No no no my friend. It's that he wanted it ALL DAY. I went to Five Guys one day many  many times and guess what- he never got tired of it. He didn't even eat the food. He just had to keep going. Eventually nothing was enough for him. It was like everything was stuck in a loop for him. So, we looked into a medication, found one we liked and tried it. For three weeks everything was a miracle. See post below when we were still in our happy place.

Then came our trip to Virginia. My annual trek where he gets to do things he doesn't normally get to do like boating and tubing on the Chesapeake Bridge. And he loves my brothers! Well, then the tantrums came. And not just any tantrum- the let me bite my fingers off, oh you don't like that, then let me bite yours off- kind of tantrum. Gee, Fun. It was horrible. Somehow we got through the week with a few good spots and even flew the kid home on an airplane with little incident. (Yes we conquered the whole "how do you fly a non verbal kid with autism on an airplane" question).

And the tantrums continued. And continued. And got worse. And it felt like every day he gained about fifty pounds of muscles into his tantrums. It was incredible. Crazy.

We looked into everything. Nothing was working, even taking him off the medication- even worse his OCD came back fast and added to the tantrums he was already having.

And when I say tantrum, I don't mean, oh he's yelling and screaming and throwing himself on the ground. No. I mean he would bite his hands until they bled, bash his head either on his knee, the wall, counter of the floor, or he would bite his foot or his knee until bleeding occured. If you tried to stop him then he bit you or hit you or kicked you. And he is sixteen and the strength of fifteen men when he is angry. The new word I will use is rage attack.

Oh and he started to have crying fits. So now we have rage attacks and crying fits in between. We didn't know what the hell was going on. We looked at food (he has a crap ton of food allergies), we looked at medication, we looked at his schedule, we used his device, we looked at his sleep- we looked at everything.

Finally I decided  I could not spend another day in a wrestling match with him- he was bruised and battered and I was bruised and batter. I know people will often put a kid like this in a psych ward to get some meds pumping or whatever, but Kreed is not one of those kids. He could never eat the food there with his allergies. Nor could anyone understand his unique medical needs- the immune defiency and SCAD alone would make it near impossible. Not to mention the fact that I would rather take Kreed to live on a beach in the middle of no where and feast on fish I catch, than put him somewhere that he doesn't understand why his people aren't there and strange people are holding him down. I couldn't do it. Ever. Period. That's my own personal opinion, I know some people aren't as equipped and I can certainly understand. I happen to be lucky and work as a behavior therapist and I think sometimes that gives me a leg up.

So I did the next best thing to a beach hut and took him to the mountains to work out his issues away from all his triggers at the house and area he lives. Packed the boy up, he waved goodbye to his mom and off we went.

Magical things happened. The whole time we were there he had only three rage attacks to note. The rest of the time he was the boy I love so much- happy, smiling, giggling and thrilled to be in the cool weather that he so enjoys. And he loves rivers and mountains. No idea why, but he does. And through all of that, I was able to pinpoint his rage more specifically. He would always do the same exact behaviors before a tantrum- he'd stop moving, close his eyes and basically completely remove himself from what was happening. Then he'd go into a rage.

What does this signal my dear Dr. Watson do you say? That's right- seizures are back! At least this was the premise we began to go off of. When Kreed and I returned to the sweltering heat, we watched more with a keen eye and kept seeing those same behaviors with rages. This helped some. Then it all began to get worse again and I swear the kid even got stronger. And the crying came back too. Everything was there and even worse. So we took him to see his Neurologist.

The thing about seeing a Neurologist is if you are going to describe what is happening with the kid, nothing helps more than the kiddo actually doing exactly what you said. Damned if this kid didn't know what needed to happen! So he was happy, jumpy and so excited to be at the doctor (the kid loves doctors, who knows why). Then about five minutes before she walked in- he withdrew and closed his eyes. She walked in, he barely awknoledged her. She was listening but we could tell she didn't get it. Then I told her this is how he acts before a rage. Five minutes later- let the biting begin- he went full rage mode. So I went full therapist mode and got him all situated to ride out the rage. The doctor sat in wonder. But she got to see it all! So she ordered his seizure meds increased and scheduled an EEG to see how often he might be having seizures and all that good stuff he did ten years ago.

So you think we'd be thrilled out of our minds. Well, then he woke up the next morning and from the moment he woke up he raged. We wondered is it the new dosage, is it the other OCD medication- what the hell!! We tried a few different things and was met with the same result each time- rage and crying.

When you have a medical anomoly like Kreed, you literally have to go through the list to see what is wrong. Finally I decided- hey what about his blood-sugar levels? We looked up signs of low blood sugar and certainly some fit Kreed. So the next day after a rage in the morning I began to feed him literally every hour and a half. He didn't have a tantrum the rest of the day.

The next day I fed him every hour and half to two hours. He didn't have a tantrum all day.

The third day I fed him every hour and a half to two hours. He didn't have a tantrum all day.


I can only see one conclusion personally. So maybe we hit on something. I can't say for certain but that's an awfully big coincidence don't you think? Now he is still withdrawing occassionally but we are still pushing the food and he seems to not rage. I also leave him alone when that's happening- many times I would disturb him during those withdraw periods and he would have rage later- maybe  confusion or disorientation.

Whatever the reason- everything we are doing is now working. Holy cow man. We still can't grasp what he has been going through, but the fact that he has had no rage attacks in three days with what we have been doing makes me breathe a little easier.

Generally I'm one that needs cold hard facts or see data to believe it. But there is also a lot to be said for trial and error. And although we didn't stick him with a glucose meter to see his blood sugar fall (try to explain that to Kreed, no you can't bite yourself, but sure I'll stick you with a pin and draw blood), so instead I have to rely on cause and effect. Push food- no tantrums. Less food- tantrums. There, enough said.

He is still going to have an EEG next month I would guess to see seizure activity. But for the first time in months we are breathing a little easier. Although I still catch myself holding my breath, waiting for the other shoe to drop...the heaviness weighing on my heart has released significantly.

So, this is why my youtube hasn't been update or blog and really only the instagram has.

And this is what's happening in Kreed's World currently. Perhaps a little light finally showing through the dark.

From this:

 To this:

I'll take it.