Yet another question about behavior

[edugator]

I saw a new behavior this week that has me kind of worried. On 3 different days James has gotten exteremly angry about something (hard to always tell about what ) and he started screaming- his face turned purple, his arms shook, his head shook, spit ran from his mouth and he was truly unrecognizeable. Pure rage was in his eyes. He tried each time to strike out at me with his forearm. I have NEVER seen him so upset before, and believe me, he has had some doozie tantrums. But, this was like something else. Like I said, rage. It was scary. I had to actually put him in a restraining hold three times- I was afraid he was going to hurt himself or his younger siblings. At one point, he was thrashing about on the floor and hit the side of his head and cheek on the open edge of the door and has a nasty bruise. I was very worried about him- and still am.

We go to the developmental ped. on Tuesday- which just happens to be his next appt. I am curious to see what they say.

Has anyone seen anything similar in your little guys? We are continuing to plug along using restrained time out (booster seat in middle of room), ignoring, and lime juice for screeching/screaming/spitting for consequences. For reinforcement, we use whatever he seems to want at that moment- sometimes it's our attention, sometimes sibs attention, a toy, access to a different location (we have baby gates everywhere for his, the baby's and the puppy's safety),etc.... He is hard to pin down reinforcers and consequences for- and even harder for behavioral antecedents.

Anyway, let me know if you've seen something similar...we are open to suggestions!

[ALLISA]

Lime Juice That begs some elaboration !!

Erin used to have some doozie tantrums.....set off by stimulus that I wasn't even aware was upsetting to her....the doorbell, cell phone ring tones.....really "odd" things.....

She would typically bang her head, do other self injurious behavior, scream and cry.....and try to bite my fingers.

For her, a restraining hold would have been the worse thing....she would fight against it, which would rev up her anger and make the cycle continue.

She needed help to break her cycle of tantrum.....her brain was "stuck" in that mode and couldn't "just get over it".

I had to take her from the room to somewhere quiet .....at home it was our bathroom.....I would massage her arms and hands until she could regroup. NO talking to her at all.....she needed QUIET....the extra words were too stimulating as well......

Now.....if she gets worked up ( and it is VERY rare )....she actually sticks her arms and hands out to me....to let me know she needs help and I massage them immediately.

It was frightening to see her so out of control....but learning how to handle and cope made me feel very empowered.

[Chris too]

One of my kids (Katie - no Ds) had "demonic" episodes when she was about 2 - I had to "lay on her" to calm her & like Allisa, not talk at all. Quite room, on the bed, laying large portions of me on her to both hold her down & apply pressure to every limb. I think it was a sudden & severe need for propriaceptive input. She is still very excitable, but has tools (weighted blanket, quiet closet of her choosing, relaxation techniques, and prayer) for managing her "wig-out" sessions.
Let us know what the doc says about it so that we can all learn. I'll say a prayer for you meanwhile.
Chin up, this too shall pass.

[edugator]

Lime juice... James likes to imitate sounds and sometimes this gets out of control. It was suggested to us by a beh. spec. to try an edible of some kind that he doesn't like to try and curb this. Hence, a drop of lime juice. Often just seeing the bottle makes him think twice about screeching or yelling.

Thanks for both of your responses. Yes, quiet, soft touches and pressure are all things that we have done in the past, and will continue to do. Restraining actually calms him too...kind of like a colicy baby being wrapped in a tight swaddle.

I will let you know what the doc says. In the past respirdol (SP?) has been suggested and we have opted to try beh. mod. and other things (straterra and tenex). I think it may be time to explore other options.

Have a great week.

[liasmom]

We tried Risperdal on Lia and it did nothing. A friends child with a different trisomy tried it and it has been a miracle. I'd say try it and if you dont like it tell the dr and end it.
Lia was real dopey acting and ate and that is about it. Lost her total personality- Id rather have her bad and there than good and not there Nancy

[ALLISA]

Erin has been on RIsperdal for 18 months.....for us.....it WAS a miracle.....almost from day ONE !! She has the added bonus of PDD NOS ( Autistic dx).....Meidcations of any type are a HUGE decision and I took a LONG time making mine, until I knew I had exhausted every other option. I have to say....she seems happier to me that she can calm down and not be out of control all the time. A friend commented to me that "imagine how exhausted SHE must be from herself" and that had never really occured to me before....I knew I was exhausted trying to keep up with her....but never thought that perhaps SHE too was equally exhausted yet unable to stop.

[sd112170]

God bless you all. I will pray for you. I do hope John will be able to cope. I really don't know what to expect at this point.

Hugs to you !!

[edugator]

Allisa and Nancy- thank you so much for your information. We go to the doc tomorrow. He had a HORRIBLE day at school today and an equally rough evening at home. I just want my son to be happy. With meds, without meds, I just want him happy.

[Radonna]

Allisa your post really made me stop and think. Kaden is a handful. He never stops. I never even thought of how exahusted he must be.

[CC]

From one that can so relate I just wanted to say HUGS and let you know I have been there too. Chris is 15 now and OMG so much different (for the better with behaviors) as he has matured

Chris too has the dual dx of DS and ASD along with OCD and has been on meds for the past few years now which helped lots but due to things going on we now have him off the meds.

Its never an easy decision but when they are needed they truly can benefit the child.

Best of Luck at the Docs tomorrow.

CC ~

[edugator]

Here is another thing that makes you go hmmmm... Allisa's point about the kids being exhausted by constantly 'going'... that describes James to a T, but he has a terrible time getting/staying asleep. Do you all see the same thing?

[eas1971]

My son Oliver, 4, is a handful (to put it mildly.) Actually, it has gotten better in the last year or so after we've made some diet and behavior modification changes.

Oliver doesn't have a diagnosis yet, but he'll likely get a diagnosis in the coming years. We just don't know if the diagnosis will be ADHD or Sensory Processing Disorder or PDD-NOS.

Anyway, I just wanted to comment on Oliver wearing us out AND wearing HIMSELF out!!!!!! When he's in one of his moments, or having one of his bad days, he simply cannot control himself. You can see it in his eyes and hear it in his breathing. I feel so terrible for him!!!! That's the worst part for me. You can actually see how he simply cannot stop moving, cannot stop himself from whatever it is that he's doing. He's so out of control. It breaks my heart!

But, Oliver is a good sleeper. Always has been. He's restless in the sense that he tosses and turns (that has improved since T&A surgery) but he willingly goes to bed and easily gets to sleep and gets a good amount of sleep every night.

[edugator]

Well, we went to the doc today. We have decided to add risperdal to his treatment. They are starting him on 1/4 of a tablet and we will gradually increase as needed. We are also switching his straterra to the morning. So, I guess we will wait and see how this is going to go. I am hoping for a day now and then where he is just a happy kid who plays with his siblings and friends in the neighborhood and who doesn't make everything from eating to bath time to bed time a monsterous fight.

Keep your fingers crossed.

[damarasmom]

I sure hope this change in meds works for him. It sure does sound like you have your hands full and I can only imagine how difficult it is for you all!
I will keep you all in my thoughts while you go through these changes. Here's to better days and nights to come soon!!!!

[edugator]

Thanks for the support and encouragement! I don't post that often because I feel like I rarely have anything positive to add and I don't want to be a negative nellie all the time! Hopefully with the changes we are trying things will begin to improve- and maybe I will get some much needed physical and emotional and perk up!

Have a great week everyone!