Sunday, August 15, 2010


With all of the hospital stays we've had this summer, it's caused Max's doctors to put their heads together once more on our enigma of a boy, and try to figure out what's been going on.

Health wise, he's doing really great. His metabolic levels are some of the best we've seen. His EEG shows improvement. He's gained weight, and kept it on despite going down on calories. He's sleeping well. Yet...he's had more hospitalizations in the past 3 months than he has in the previous two years.

What they have come up with, including us into the conversations for info and feedback, is that they think we may be dealing with some anxiety issues. A-W-E-S-O-M-E. One more thing to add to his list. I've not been thrilled about the idea...I mean really, doesn't he have enough diagnosis? Don't we give him enough medicine, and monitor him for enough things?

But, it really does make sense. We started to put the pieces together when it seemed over the past several years, anytime Steve was out of town a lot, or a lot of changes going on in our house, or we were highly stressed, he would have issues. Sometimes it would be not sleeping. Sometimes it would mean vomiting spells. Sometimes it would mean seizures. Sometimes it's severe constipation.

And every time the situation would pass, he would be fine, as if nothing were wrong. So, while it makes sense, I'm still wishing it not to be. I mean...I really love Max's personality. He's hilarious. He's sweet. He sings all the time. He talks and talks and talks. I don't want to put him on a medication that has the potential to change him.

But, I really really really don't like him to be in the hospital. Especially for reasons that we could control, to avoid being in the hospital. We have a plan right now to give him some medicine on the bad days. Like today. He's had seizures every night for a week. Steve was out of town most of last week. He's been constipated too...Max - not Steve. It's all starting to add up with the fussiness, and fitfulness, and grumping and griping.

Today, the only place he's been happy is in his bed. But, he's still a bit frantic. This is the sort of day that we can tell...we're going to be up all night with him...or he's going to work himself into a vomiting spell...or we'll definitely see seizures tonight. So, I take a deep breath in, and finally agree to the medicine to chill him out. works...kindof.

It chills him waaaaay out. His eyes are little slits which he looks through and he still continues to talk. But he's slower...he's groovy man. He's altered. And I'm reminded that we just have so little control over all things Max. We have to make the decisions, do we have him be who he is, who we know him as, and have him in a frantic, anxious state. Or, do we dope him up and hope it reboots his system to get him back to his baseline, all while he fights the medicine and it's effects. Neither seem like the best choice.

But, they are the choices we have, and we'll continue to make the best decisions we can, with the information and help his doctors can give us. And hope we all sleep this off tonight...and have a much better day tomorrow.


Leanne said...

Does the medicine work on a spot basis? Meaning, is it effective for days like today when he needs to be unplugged from his anxiety so the rest of his system can soothe itself or does he have to be on the medicine continuously to build up to effectiveness?

I guess, because what Max has been doing sounds EXACTLY like life with John (albeit 1,000 times easier than you guys have it), if you can let him be groovy man when he needs to be without making him groovy all of the time/for the rest of his life, I'd say go for it.

I know you guys love his personality just as it is, but maybe HE doesn't like it, especially when he's anxious.

I keep flashing to the Johnny Jump Up I had for John when he was little. Even though he loved jumping and jumping and would laugh and grin and be adorable,after a while, he'd not be able to handle it yet couldn't stop himself. He would get to the point where having fun wasn't fun at all.

At that point, I'd have to stop him, and he'd just collapse, even though he didn't like being stopped at first.

Maybe that's what Max needs, too? A way to stop or slow down because he's unable to regulate it himself?

I don't know. It's just so hard and I know the dilemma you guys face. I say keep talking it out and see what there is to see.


Deana said...

Hi Leanne,

Yes, for now, it's just the ativan to chill him out. And it seems to work...but if we're seeing him need it on a regular basis, we'll have to go to an anti-anxiety medicine. That's the part I'm not wanting.

You are spot on about him getting himself worked up and just can't stop...which is why we give him the meds.

He's our little dopey guy tonight. But, he's calmed down. And that's the important part.

Leanne said...

I might ask about something like that for J, too. I hope the ativan will do the trick for Max and you won't have to add another prescription.

Deana said...

It's the same "emergency" medicine we have to use for seizures. It has several uses, and on the pamphlet, it specifically calls out anxiety.

Unknown said...

This sounds tough, hang in there. I can totally see why you don't want to see your sweet boy change, but it sounds like on those tough days he is already "changed" if that makes sense. Stress is stressful, poor Max.

Amanda Jaksha said...

I had a hard time taking this leap but do not know what I would do with out it now. Hugs!

Deana said...

The part about him being non-verbal makes it extra he just he being he he upset/stressed/sad?

I struggle with knowing is it the right time to medicate...and's always difficult to accept that he has yet one. more. thing. going on. The ativan on Sunday helped him a lot. He hasn't had any seizures since Sunday morning...which is always a great thing.

We're to watch and make sure that he doesn't need the ativan regularly. If he does, we'll start on another medicine, so we can keep ativan for emergencies.