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Post by Chris on Jun 10, 2012 21:17:23 GMT -5
Sarah started having some significant behavior issues a couple of years ago. Last summer we started her on Intuniv and got immediate results. I thought it was a miracle cure but then her behavior took a nose dive in December. She hits, screams, kicks, scratches and/or poops in her pants. Recently she has started to her herself when she has a meltdown. They aren't daily or even weekly but when she has one it can be very scary. She had one in April when we were at an Easter egg hunt and I thought we were going to have to call an ambulance. I mean really scary.  I forgot to add that she is 10 and will be 11 in September. I am sure hormones has something to do with the moodiness but I am at a loss of what to do for her. I would love any words of wisdom. Chris |
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Post by Emilysmom on Jun 11, 2012 22:16:18 GMT -5
Chris,
I wish I had some advice for you. I know it has to be heartbreaking for you. One of the hardest things I have dealt with related to Down syndrome has always been the fact that Emily has been unable to verbalize how she feels about things. That makes it so hard to know what could be causing health related issues and emotional issues too!
If only Sarah could tell you what's going on in her mind when these episodes happen!
I will ask Laurasnowbird if she knows anyone in Michigan who might be helpful. She is a great resource.
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Post by Chris on Jun 12, 2012 20:53:49 GMT -5
Thanks, Susan. Her speech is so very delayed and I know she gets frustrated because she can't express her feelings. Chris |
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Post by mg12061 on Jun 14, 2012 8:31:18 GMT -5
We've really just noticed that this kind of behavior from Kathleen is always related to pain exhaustion and or her period which started for her before she turned 11. She's 15 now and will finaly let us know she doesn't feel well. We've since found out the pain is from GI issues that we're still working on figuring out. She'll ask for a warm towel or hot bath to help, or I'll ask her if she needs tylenol and she'll say yes if she doesn't feel good. She's especially worse when her period is aobut to start. Looking back there were cylical symptoms before it even started.
Mary Grace
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Post by Chris too on Jun 14, 2012 12:05:21 GMT -5
Are you keeping a log of her diet and activities prior to these episodes? It could be very helpful in finding triggers. You might want to write down the story of the day - everything that went on from waking up to the episode. It is possible that you will find common warning signs at least, and be able to get her into a safe environment before the meltdown, or even take action like putting on a weighted vest, or a white-noise machine, or something that might short-circuit the event. Take note on the frequency so that you'll know to be extra observant around the times that are most likely for recurrance.
And (((hugs))) it sounds just heartbreaking </3
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Post by Renee' on Jun 15, 2012 7:01:47 GMT -5
Chris
Lauren is 13 and we too had her on Intuniv for a while. Then she became anti social, abusive and just mean, especially toward me.
We took her off a few months ago and what a change. She is our old Lauren. Even her teacher said she was back. I would never tell you to do what we did which was just do it ourselves but talk to your doctor. It seems the older she gets the better she is about controlling her behavior. She isn't perfect but I can handle her. Good luck to you.
Renee
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Post by Jackie on Jun 17, 2012 10:43:29 GMT -5
I would never pretend to suggest that this is a cure all...but this book www.woodbinehouse.com/main.asp_Q_product_id_E_1-890627-65-8_A_.asp has answered so many of my questions on mental health and behaviors. It has often led me to an understanding of WHY certain behaviors persist and some of the ups and downs we have experienced with Emily. It is such a user friendly book and you don't have to read it chapter by chapter to find help. I also recently ordered the new guide to good health book for DS www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-89-8_A_.asp and found they were sort of companion books. Neither of these books tell you just how to cure anything step by step but they give you leads of what to do next and an understanding of why something is happening. We have recently had to go through some bad things with Emily which I can't discuss right now...but they have helped me tremendously with many things. I think they belong on the bookshelf of every parent with a child or adult with DS. They are designed to help parents of people with DS who are older pre teens and on up. |
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Post by Chris on Jun 19, 2012 9:13:38 GMT -5
Thank you for your responses. Jackie, I will order those books. I have even asked my husband if he thought Sarah had a mental illness. She is always telling herself she is bad. I just read about gluten intolerance and behavior. Now I am wondering if that is it. She doesn't have celiac disease but we have never tried to eliminate gluten from her diet. We tried taking away dairy and saw no change. Just thinking......... Chris |
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Post by mg12061 on Jun 23, 2012 6:03:39 GMT -5
When was she tested? It should be redone periodically. There are also flase negative results often. Kathleen's behavior as I said was directly related to how she felt/feels going through all the GI issues she's having.
Mary Grace
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Post by steffnliv on Jun 23, 2012 9:18:46 GMT -5
Hmmm also wondering if hormones are coming into play? Olivia got her period at 12 and lemme tell u i am now just being able to detect a few days b4 her period. Shes freaking ridiculous. We talked about it but then started to tell her dad and bro that she was being mean cause of her period. oyyyyyy.... i was trying to teach her how to control her emotions but lmao i just cant for about 3 days.We like to call the child who comes to visit a few days a month as "bolivia," Her name is Olivia. AND she gets soo mad when I say ur evil twin BOLIVIA is here. I want my Olivia back. And then she will stomp her feet cross her arms hands on her hips( i like to call it her hands on her imagination) and say I AM NOT BOLIVIA!!!! kinda backfires on me but occasionally I can get a laugh out of her. I am trying to show her how to manage her emotions normally she will listen but oyyyyy.... Not sure what to tell you but would love to hear others responses.
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Post by Pat on Jun 29, 2012 6:32:39 GMT -5
You could try calcium & magnesium. They make it in a drink mix for those who don"t do pills.
I knew a lady that had PMS, trust me she didn't need to tell you it was that time of the month. A friend gave her Ca/Mg she took it all month...what a difference!!
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Post by steffnliv on Jul 1, 2012 2:25:40 GMT -5
sheesh we will start on the calcium and magnesium NOW cause she will have a hole month almost to get it in her system before BOLIVIA arrives. Thanks Pat
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Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
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