Having a Tough Time

[sueb]

Hi Everyone:
We're in the midst of reducing Milly's risperidone and, boy, it's been a bit rough since the last cutback (she's now down to just .5 mg in the evening).
she communicates her frustration/anger by screaming and that has escalated big-time; on a scale of 1-5, she's at 6! and has lost the ability to calm herself down. She's also much more sensitive to transitions, general anxiety level is up, increased teeth-grinding.
On the positive side, she's been losing weight, e.g. lost 2 inches on her hips, and looks much slimmer.
anyway, we''re seeing the psychiatrist tomorrow am, I'm very concerned about the reduction in her quality of life, just pains me too much to see her so upset. I'll keep you posted as to what the doc suggests. He may add a small dose of clonazepam to help her anxiety level.

[wrblack]

That does sound a bit wearing, would think on Milly as well as on you. I'd consider talking to doctors about just what medications at what dosage are appropriate. Sometimes medication is a good thing.
Guess Milly is a bit old for picking up and just cuddling. That often works well with my still fairly little guy, age 9 but only 50 lbs.. Are there other things that might help Milly calm down, music, videos, toys? Has she ever tried a chew tube? Might help with the screaming and the teeth grinding.
Good luck. -- Bob

[Googsmom aka Jennifer]

{{{{HUGS}}}}}}

[sueb]

Thanks so much Bob and Jennifer for your support; you're right, medication certainly has its uses; I try to always "quality of life" as my benchmark - my girl's happiness is my bottom line. We have used music, toys, sensory items to calm Milly down, but these are not working when she escalates so high. What's a "chew tube"? I'd be interested to have a look at one.

[wrblack]

Maybe I should have written chewy tube. I think there's a variety of them, but here's a couple of links,

www.chewytubes.com/chewytubes/index.htm

www.amazon.com/Chewable-Necklace-and-Bracelet-Green/dp/B001G2LAJG/ref=pd_sbs_hpc_3

And I think I remember Dr. Capone saying something about making your own by cutting medical tubing. But we never really tried any of this sort of thing. Charlie is more of a licker, taster than a chewer. -- Bob

[sd112170]

Hugs!!! Prayer from GA!

[momofrussell]

Aw I am very sorry things are frustrating right now Maybe the docs will have a different idea and/or meds..... hang in there.....

A.

[lorraine]

I'm sorry things are hard for Milly and you at the moment, I don't have any advice I'm afraid, but I really hope that the doctors can get the meds balance right.

Take care

Lorraine

[CC]

OMG how I can relate Christopher is 16 and has been on meds for his OCD but in the last months we have weened (sp?) him off them and just trying Behavior Management. No easy task for sure BUT he has lost over 10 pounds ;D

I too am so much for quality of life and on the fence with this everyday but we take it one day at a time, some days much harder then others....

Just wanted to say I get what you are saying HUGS

CC ~

[Radonna]

Sue, my son is 15 with Ds/Autism. He isn't able to be medicated. I can totally sympathize with the screaming and some of the stuff you describe. I pretty much try to prevent Kaden from ever reaching that point. I have found that many times when Kaden melts down the screaming and hitting himself (biting, head banging) is when I am in a hurry and have ignored all his signs.
I can kind of predict when he has had enough and sometimes just a weighted blanket and a dark room and giving him his "chain" which is plastic safety chain he dangles will work. I sometimes have to let everything else go which isn't always easy but it's easier in the long run. I don't know if Milly is like Kaden but once he gets going it is almost impossible to calm him down.

I am really interested in checking out the link that wrblack posted for the chew tubes. I use to fight the self stim so much because if he was stimming he wasn't paying attention at school or to what I was trying to get him to do but the older he gets the more I think that stimming is my friend.
Big Hugs to you and to Milly!

[CC]

"Sue, my son is 15 with Ds/Autism. He isn't able to be medicated."

Hey Radonna, not that I am in any way pushing meds BUT why is Kaden not able to be medicated? Hope its OK for me to ask, just wondering?

CC ~