DownSyn Forum

Catty

I am trying to figure out if my daughters behaviour for her age is normal,or if she has ADHD,and ODD. I know that alot of her behaviours are Down's related,but i am now thinking that it may be more and she needs meds. She goes 24 hours non stop,even when she is over tired, she can't stop and then she has full blown out tantrum.She defies every task given to her,gets upset if we say no to something,and gets aggressive torwards others. She punches her siblings at meal times,and starts an arguement for no reason.She can not watch a full movie, and demands to go out all of the time.She has started this about a year ago but the beheviours are escalating.It effects our household and marriage,because it's constant argueing. Anyone experience this,what is the answer?

SherryinWI · Posted: May 25 2010, 11:19 AM Post subject:

I would have to say you should have her evaluated. How is she at school? To have a clinic ADHD diagnosis it has to effect both home and school. I am not versed in ADHD with children with Down syndrome but I am sure it would depend on where she is at developmentally. Medication and behavior intervention sound like they are greatly needed. I am so sorry this is so disruptive for your family but it is not your fault or your childs. Time to take action!

I think attention span varies with each child. Nate at age 5 can sit through a 2 hour plus movie! He has very very long attention span. I think it is much longer than what his siblings attention span was at a similiar age. Nate can stay on task for a long long time...especially when he is interested. He does have lots of experience waiting for his siblings and just hanging out with me and attending meetings and lunch dates, etc...

Here are some resources.

http://www.ds-health.com/add.htm

http://www.ndsccenter.org/resources/faq.php

http://www.ndss.org/index.php?option=com_content&view=article&id=69&Itemid=90&limitstart=2

_________________
Sherry
Evan 12, Olivia 11, and Nate 8*

Hosted on Fotki

EAS1971 · Posted: May 25 2010, 1:14 PM Post subject:

What started about a year ago? The aggression and/or the hyper behavior?? ADHD wouldn't start at 8 years old. You would have been seeing sings on that long before. However, aggression starting at 8 could be 1) hormones 2) some change in her life that is upsetting...change in routine or loss of someone close or a move or 3) her way of trying to tell you something.

I'd first try to figure out when each behavior started and what was going on in her life at those times and take it from there.

My son has ADHD and that was obvious to us from the time he was an infant (and before.)

I'm not sure about ODD...not sure when that usually manifests itself. That might be something to look into.

Best of luck to you!!!!

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

lespring · Posted: May 25 2010, 1:21 PM Post subject:

At a very minimum, you need behavior intervention services. You need to learn to deal with the various behaviors appropriately, and to do that, an FBA (Functional Behavior Assessment) needs to be done. This tells you the functions the behavior serves. Is it frustration? Is it attention seeking? Is it inability to initiate conversation? Is it because she doesn't like people in her space? Stuff like that. Once you understand the function of the behaviors, then you can start addressing them.

My guess is the behaviors are escalating because she's hitting puberty. Angela, difficult to begin with (including physical and verbal aggression) out of control in the last 6 months or so before she got her period. Teenagers are difficult under the best of circumstances. Add cognitive delays and communication problems to the mix, and difficult is an understatement!

Once you have an FBA done, then it might be time to try meds. I agree her activity level sounds pretty high (sounds like where Angela's is WITH meds! LOL) Sometimes if you can find a medication that helps with the activity level and impulse control, behavior management is much easier to work through.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

SherryinWI · Posted: May 25 2010, 1:51 PM Post subject:

I completely forgot about puberty....YIKES....I am sure this is the reason. I know my almost 9 year old so called neurotypical daughter can be more difficult at times but she has been that difficult baby, and difficulty toddler, then my high spirited child. I cannot imagine how she could be if communication was an issue for her. She has AD(h)D Inattentive type. We are not medicating her but trying to work with executive functioning skills.

I am sure it is the HORMONES!!! I am betting she is not trying to be deffiant.

_________________
Sherry
Evan 12, Olivia 11, and Nate 8*

Hosted on Fotki

Catty · Posted: May 25 2010, 2:23 PM Post subject:

The thing is, is that she seems fine at school with the occasional behaviour issues,like testing, non compliance,but as soon as she sees me she turns into a completely different child.I read up on ODD and she fits it to a T. I do agree hormones have started kicking in,but she is exhausting to handle. She wants to run all of the time where as before she could manage an activity or a movie.\i am not sure she has full blown ADD,but there are new,more aggressive behaviours for sure,and completely demanding and screams alot.I sjould add,she has a major attidude and swears when angry!

lespring · Posted: May 25 2010, 3:18 PM Post subject:

Well, I don't know that I'd call it ODD if she's not doing it at school.

I know all about the swearing. Rolling Eyes

Angela knows all the words, and uses them in the right context most of the time! Sometimes she just spews them out, in no particular order, just to tick me off when she's really mad. UGH! For awhile we were trying to stop it, which would just feed the behavior more and she'd keep going. Now we ignore it. (VERY difficult to do!!!) Most of the time this works to at least stop the behavior quickly. Doesn't PREVENT it, but it does stop it. The behavior specialists have been working with her on different things she can say, and doing lots of role playing when it's NOT the heat of the moment. It's helping! That's the key for Angela. We can't try to teach her anything in the heat of the moment. We have to do it at a separate time when she's in a good mood. Then later when the situation comes up, we can bring our our cue cards and use THOSE as a reminder instead of us saying, "Remember...." because again, it just increases her anger level.

If she's not doing this stuff at school, then it really sounds like attention seeking behavior, and she's succeeding. The vast majority of Angela's behavior is attention seeking. Maybe if you can give some specific examples (you can pm them to me if you want, or post them here for others to benefit from, it's up to you.) I can give you ideas that we've tried, or that our behavior team has suggested. Even if something didn't work for us, it might work for you.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Catty · Posted: May 25 2010, 3:42 PM Post subject:

After school,she sees me and immediately starts up i don't want to walk home...screaming,i have her wagon,finally convince her to go home,then we get in the door,and full blown anger outburst...throws evey shoe around the house everywhere,clears the kitchen table cloth throws every placemat on the floor,screams and ends up on the floor.I am ignoring this and walk away.....then she starts i want snack.............i give her veggies,proceeds to dump it all on the floor and says no i want chips.I ignore it then walk away.I give her 10 minutes comes up to me and says "mommy i miss you lots" and smiles.I read her agenda and says had a great day learning how to spell several words,worked hard. Then she has another melt down and says i poop in my underwear..sure enough there was a huge stain that caused an irritation. Gave schiool special wipes to deal with this. Then settles down to eat snack after cleaning up. We are on the waiting list for behaviour therapy. Have been waiting for 3 months.I think i will pm you specifics lespring.This is just an example,of a situation.

lespring · Posted: May 25 2010, 4:18 PM Post subject:

Hmmm

Ok, so transitions are clearly difficult for her, even if she wants to participate in the activity. Like going home. What if, you said before school in the morning, "Today when I pick you up, would you like to ride in the wagon or help pull it?" (if it was Angela, she would choose pulling it.)

Or you could get to school and say, "Oh wow, that backpack looks heavy! Lets put it in the wagon and you can pull it!" (Angela would be all over this, cuz she loves having a job! LOL)

Ahead of time, clear out an area the fridge that is "her" area. A small basket might work for this. Her snacks are there, and she can choose anything from the basket. Make sure there is a good variety of things. (for Angela, we might be able to put several things in there, but she would also eat them ALL so I'd have to be careful to only put in an amount that if she DID eat it all, it would be fine.) Maybe a couple zip locks with a small amount of crackers, or veggies, fruit slices or whatever in each one?

Then when you pick her up from school, as you're walking home, you could say, "Guess what I did today!" and let her guess a couple of things. Then say, "I put something very special for you in the fridge. I can't wait to show you when we get home." (for Angela, she'd be DYING to get home to see the special surprise. LOL)

When you get there, show her the basket, maybe take it out of the fridge and say, "This is YOUR basket, with YOUR snacks in here. See? It goes right here in the fridge. You can choose anything out of this basket. See? (Now model opening the fridge, talk out loud through your decision making process, then take your chosen snack and close the fridge.) So go ahead and choose what you want."

NOW WALK OUT OF THE KITCHEN and let her do it herself! My guess is she'll be all over the whole choosing for herself business AND feeling like she has control over the situation.

We waited for a long time for behavioral services to start too. Wow, I think it was close to 5 or 6 months!

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Catty · Posted: May 25 2010, 5:16 PM Post subject:

A few more examples. Dinner time,demands who is to sit next to her,then changes her mind, then begins stabbing sibling with utensils,we take them away,then she dumps her food onto the table,which then turns into a screaming match, yells and screams..............arghhh,dinner now turns into a fiasco...then we finally settle down half way through dinner stops and says i done, going swimming now. I try to change her mind, she proceeds to put on her bathing suit and screams by the door until i am ready to take her............it goes on and on....i am tired.Just a sample of my evenings. Constant battle...we need help!

Tigger · Posted: May 26 2010, 12:50 AM Post subject:

We call Talitha 'the small tyrant' because her behaviour and needs tend to drive much of what happens around here. She is hyperactive and can be incredibly stubborn. Of course anything we are experiencing is minimal compared to dealing with a nearly 10 year old but we are having to work on her behaviours now - transitions etc - or I can see major problems in the future (Talitha is 4.5). At least she is still small enough to physically pick up and restrain but it won't be long before I can't do it.

My heart goes out to you because I am getting some sense of how incredibly difficult each day is for you. (we need a *hugs* emoticon). I find that giving Talitha a job to do that she feels is valid (she can sniff out a pretend job immediately) and does help with transitions to and from the car and other situations. Mind you, once she considers something to be 'her job' there is no way she will tolerate anyone else doing it.

Talitha is on clonidine and melatonin otherwise she does not sleep - or sleeps badly for 3 or 4 hours and then is rabid for the rest of the day.
Since we had her T&A done her behaviour improved because she was sleeping better (she has sleep apnoea).

Puberty is a big thing and I am really not looking forward to it with Talitha. Girls generally start being feral around 9 or 10 (sometimes earlier) and it can go on for quite a while.

I hope you can get some help soon. It sounds like you are at the end of yourself Sad

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

Catty · Posted: May 26 2010, 7:03 AM Post subject:

Well you see this behaviour is so new to us. She has always been stubborn but generally sweet,kind,and manageable.Lately she is turning into a real handful,that is sooo determined to get what she wants,and uses bullying to get it,as well as screaming,and aggression.It must be puberty. She goes from being happy one minute to a angry,furious, and demanding the next.Our check up at the Down Syndrome clinic is coming up so i will be mentioning all of these new behaviours,as well as getting blood work done for thyroid etc.I wish there was one day that was not a struggle. I know what it's like Tigger to have a child that will determine the days outcome, I feel for my other children as they go through alot having a child with DS. We love her to death but it is hard.

SWoody · Posted: May 26 2010, 10:54 PM Post subject:

She sounds a lot like my Allison who does have ODD and ADHD and who is also 9.5 years old! Everything is a battle with her and constant whining! Her problems are both at home AND at school. Let me know what you find out. We are using meds, a psychiatrist, a behavior therapist, and she will be doing an ABA program this summer.

_________________
Sue, Ally's mom (10/6/00 DS), and Aidan's mom (2/24/06)

Catty · Posted: May 27 2010, 5:51 AM Post subject:

So did Allison begin these behaviour issues at around 7 years old? When did she get diagnosed with ODD and ADHD? Was she worse at home or at school? I agree everything is a constant battl,my husband and i were just saying that it would be nice if there was one day that she would co operate or not put up a fight for everything.I want to correct these issues before they get out of hand. The wait list here for therapy is soo long. I will update as soon as i know...also did meds help at all?

Catty · Posted: June 11 2010, 8:43 AM Post subject:

Hi lespring,

I sent you a pm with some examples of Kat's behaviour almost 2 weeks ago,and i assume that you Idid recieve them. Not sure if i did something wrong when i sent it,or you changed you address,just wondereing.I have not got a response yet..hope to hear from you soon.

SWoody · Posted: June 13 2010, 9:58 PM Post subject:

Sorry Catty! I didn't see your post until just today!!!! Sooooo sorry! Allison has always been a 'high maintenance' child. We did learn early on that she had some pretty good sensory issues going on. However, Allison has always wanted to be very independent. If she thinks it's her idea she is more cooperative. If she would just suddenly get up and walk off, or if she would touch something she shouldn't, and we tell her no -- that makes her want to do it all the more. Which usually leads to the whining, stop-drop-and-flop, or yelling. She fits the characteristics of ODD to a "T" also. She has had ADHD for quite a while. She has no impulse control. She wants to do what she wants to do and what we want doesn't matter. It's like a challenge or a game to her! It's almost like she enjoys making things difficult. She was diagnosed with ODD officially around age 7. We tried behavior modification and positive reinforcement and all of those things. Finally, we decided it was time for the meds. We started Risperdal at a very low dose at first and within days she was a completely different child! She was happy again and was fun to be around. She still had issues with impulsiveness, so we added tenex. She did quite well for a good while and then she would start to act out again. Over time we went as far as we could go on the Risperdal, up to the max dosage she could take. We have tried many additional medicines but have not found the perfect combo yet. Right now we weaned her off of pretty much everything but the Risperdal (which is at 1.5 mL twice daily now - we've been higher). She's holding at the Risperdal and the nasonex spray for now. She also started taking an ABA program this year over the summer. She seems to be doing better. Whatever they are doing seems to be helping. I do believe that somewhere underneath all of this, hormones may be starting to come into play too. This week she is away at summer camp for the first time so this will be interesting! Sorry this turned into such a "novella"!

_________________
Sue, Ally's mom (10/6/00 DS), and Aidan's mom (2/24/06)

SWoody · Posted: June 13 2010, 10:01 PM Post subject:

Oh, and P.S. -- she was diagnosed with ADHD and ODD right around the same time, even though she exhibited behaviors long before we got the official diagnoses. We spent a lot of time eliminating all medical reasons for her behaviors until we finally came down to the medicine.

_________________
Sue, Ally's mom (10/6/00 DS), and Aidan's mom (2/24/06)

LinMac · Posted: June 14 2010, 3:24 AM Post subject:

Thanks for sharing Catty and Sue and Leah.
I have no advice Catty but am reading with interest.
Your problem today may very well be mine in a few years time!
I appreciate you sharing your experiences.
Hoping you get some positive input.....

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

Catty · Posted: June 14 2010, 11:53 AM Post subject:

Wow, Allison and Kat, sound like twins, all of the behaviours that Allison demonstrates are the ones that Kat has. We have our appointment on Thurs..hurray finally get to talk to her doctor about her behaviours,i will keep you posted.

Catty · Posted: June 17 2010, 5:35 PM Post subject:

Well, we had our appointment today,and the doctor will have to test for ADHD,and ODD,but can't really decide if the behaviours are attention seeking,or controlling or an actual diagnosis of one of the above. For now she perscribed Risperadol for 2 months to try and see if there is a difference, Then re evalutate in 2 months. However after reading the side effects i get nervous about them. I am not sure if i will give it to her or not. I would rather have a diagnosed reason. She did suggest private behavioural therapy,because the hospital one is too long of a wait list. I will have to think about it. Any reactions to Risperadol to think about?

Catty · Posted: June 23 2010, 5:49 AM Post subject:

I got the school to fll out thier portion of the ADHD/ODD form, and sure enough she seems to be having all of the same issues at school as well. Once i fill out my portion and submit the forms then we can get an official diagnosis. Sounds like she may very well have ADHD/ODD, with impulsive behaviours,and aggression,both at home and at school. Finally, starting to put the pieces together!

lespring · Posted: June 23 2010, 10:19 AM Post subject:

Well, the only way to know about her reactions to the Risperdal side effects is to try it. EVERY drug has horrible side effects listed, and yes, it is a VERY DIFFICULT decision to make. NOBODY here will judge you for making whatever decision you do, weather you choose to use medication or not. WE are not walking in your shoes (though many of us have walked in very similar shoes. Wink

)

For us, Risperdal was our saving grace! Angela has been on it for 5 years now, and it combined with other meds has been amazing. And, maybe someday we'll be able to take her off most of them (not her seizure meds though, which also act as behavioral meds.) For us, the deciding factor was that she was UNMANAGABLE and was destroying the house, and the ENTIRE HOUSE revolved around managing her behavior. That wasn't healthy for the rest of the family.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Catty · Posted: June 23 2010, 10:41 AM Post subject:

Thanks lespring.....you have been very helpful...i completly understand your reasons for the meds...i am at that point as well,live with sanity or insanity. I am headed in the right direction!