Tuesday, June 16, 2009

Regarding my last post...

I didn't realize how awful it sounded until afterwards...

I'm not giving up on finding our miracle drug...

And, surprisingly, I'm not that gloomy either -even though I came across that way. Up and down is pretty typical for us. Kind of sucks to say...but, hey, that's life these days.

Just not impressed with our current treatments.

I was telling our social worker earlier today that I don't know what's seizure disorder related or what's med related as far as delays and personality goes...He's a stumbly wumbly mess right now. His interactive and chipper moments are getting fewer and shorter.

He's been walking for about 8 months now...but you'd almost swear he just started by the way he flops around. Yeah, he tries to run at times -which is awesome! But, that usually ends with him in a heap on the floor. There have always been balance issues.

He almost can't even stand up straight at times, and it seems to just keep getting worse.

Like, the more meds, the more wobbly he gets. Every AED has it's side effects, and I'm willing to cope with that.


100+ seizures a day doesn't seem to be an indication of a med doing it's job. So, what am I really doing for him?

As much as I'd love to see him off all meds, that's seems highly unlikely given the amount of seizures he has. But, could it be feasible to taper them slowly one at a time just to see if they're even working? What's the point of keeping him maxed out if they're not?

It's been so long since he's been med free. I just really really REALLY want to see who he is these days without the side effects...and more specifically...what the side effects are exactly.

Is he less interactive because he's drowsy from meds? Or, is it a developmental delay due to IS? Is he wobbly because of all the meds...or is a balance issue as a result of the seizure disorder?

I know our epi is aiming to do the same...I mean, find one that works and get him off the rest.

What's the plan if we don't?

I'm just getting anxious about our visit coming up in July. Ready to sit down and discuss our options again. Get a new plan. One that seems more realistic.

Oh, and the pain thing?

It was definitely unsettling for me...and I hate to say that it helped to know he's not the only one that's had that type of reaction. It's not like he never shows pain though...just, not as I'd expect. He'll cry when he trips and falls sometimes...or lands on a hard toy. But, overall...I don't think he reacts to pain accordingly. Taste too. Anyone know much about hyposensitivity? I've looked into that before...But one thing that stopped me. He's extremely sensitive to getting his arms rubbed. It's almost like he craves that type of stimulation. If anyone can shed some light on this...I'd appreciate it!


Sophie's Story by Elaine said...

Holli...I can't tell you how many times I read your posts and I feel like I am writing it myself. When I first took Sophie off meds, I didn't feel like I was giving up. It was when I realized it had been almost 4 months that she was med-free that I felt like I should do something new. It was great to get a baseline of what her seizures were like without meds, how her development was and what her personality was like. It was wonderful being med-free but 4 months was enough time to figure out what I needed to figure out and I started feeling guilty.

Sophie will eat ANYTHING almost. Great eater even when she was on the keto diet.

Sophie loves to get her arms and legs lightly scratched. She will pull my hand to whatever body part she wants scratched and move it up and down to let me know she wants it done. It is very calming to her. In fact, now that I think about it, I think it is a particular arm and leg...her left side maybe. I'll have to pay attention over the next couple of days.

By the way, you did NOT sound awful in your last post...just real. The ups and downs are hard to deal with especially when it occurs on a daily basis.

JSmith5780 said...

He's extremely sensitive to getting his arms rubbed
Similar concept, Austin liked to rub a mole on my neck. I realize it was a soothing thing for him, but it drove me nuts. He did finally outgrow it.

Hang in there. Definitely ask to wean some meds.

blogzilly said...

Yeah I don't think you sounded awful in your last post AT ALL. A med wean, like Sophie says, is not a bad idea, particularly if you have no baseline and the meds aren't working.

Regarding the taste thing. Do you think he is sensitive to too much flavor or not enough? One thing I have noticed in most people's stories is sensory perceptions and how they are affected, one way or the other.

I see this in Bennett a LOT.

It's almost like he needs more in the way of power in the sensory input to break through the scattered electrical mess going on in his head. So he responds to pressure, like being held tightly, more than lightly. He responds to food that has more spice or flavor, than plain foods. He responds to lighter sounds compared to softer sounds unless I am in his ear whispering and he responds a lot to that, since it is direct sensory input and a whisper in an ear can sound very loud if delivered a certain way.

Anyway, that's my theory anyway, that some kids need that elevated sensory stimulation in order to sort of beat back the electrical stuff.

Like if I want to get Bennett to verbalize more, and I pick him up and swing him around in my arms, get his world super active, he starts to talk. It's weird.

And as far feeling like shit, just feel that way when you want to and express it. You from Texas originally? As a person who lived there four years I can say that the women there can curse up a storm. Not NEARLY like the women in Savannah, another southern town I lived for four years, but still, they can get it going too.

Just let it all out! :)

My take is that there are not good days and bad days anymore for us, we are still sort of in the middle section of this IS crap although you are farther along (though I have a theory on that too I should tell you but I am already writing a friggin' novel here). But for us in the middle it's sort of like good moments and bad moments throughout a day that is just there, not definable as good or bad overall.

baby trevor's mommy said...

Okay...so maybe to people outside IS-ville you sounded down. But it seems like to all of us...you were just being very realistic. We live there too! And totally get it!

And it's good to put it out there...and get some input from others to draw from!



Holli said...

Elaine -Thank you. That's the reassurance I needed. And I see where you're coming from. That's exactly my thoughts. I just didn't want anyone to think I am anti-meds...but i think our current meds have run their course. I wonder if I'm getting ahead of myself, wanting to do this prematurely. Then I think, why not? They're not working anyway. Take him off, wait, start something new. Makes sense.

Jen -It only takes a light tickle on his arms. He's always holding them up for me to rub them. That's kind of why I stopped looking into possible hyposensitivity. But the high pain tolerance and bland taste buds still make me wonder.

Ken -Austin eats anything and everything. I even gave him a sour pickle once...and nothing. I was cringing just by the smell of it.

I definitely think sensory perception plays a big role in Austin's development. You know how babies tend to mouthe everything because that's where their most sensitive nerve fibers are at first? Well, Austin is still doing that. BIG TIME. Like the nerve fibers in his hands have still not developed well. And as a result, I believe that has a lot to do with the way he functions (or doesn't function) objects.

We've introduced a sensory tactile program in Austin's therapy. Our OT says that's a big issue for him. It's a HUGE deal when he can function a hand held toy without putting it in his mouth first.

By the way...yes, I'm a Texan through and through. And believe me, I can certainly let it out -and I do!! Just ask my hubsband!! LOL

Danielle -Thanks! I just didn't realize that it sounded like I was having a horrible day. I really wasn't! It was actually fairly decent! Just the usual bumps in the road.

blogzilly said...

Yeah I am going to be having more talk with his OT tomorrow about Proprioception. Yay, new word.

Texas was great, except the weather. I hate the heat. I lived in the Dallas area.