DownSyn Forum

[Amy Jensen]

It's been a while since I've been here, but I am reading posts and seeing familiar names...It's very nice! My daughter, Jane, is now 11 (in 2 days), and has very challenging behavioral issues. She has always had behavior problems-escaping, doing unsafe things, getting too physical with classmates and teachers etc. She is no longer in the public school system because she was hitting, kicking, even punching staff and they were just not equipped to deal with this. She now is in a school for kids with ID, many of whom have challenging behaviors, and I believe this is truly where she should be. She has friends who are her peers and the staff is excellent and highly trained to deal with any behavior issues. She has been restrained and secluded multiple times this year for her own safety and the safety of students and staff. Each week, we get at least one report, sometimes several, of her hitting kicking, throwing objects in people's faces etc. Despite a functional behavioral analysis and a behavior plan and awesome teachers with consistent consequences, she is not improving. We see a child psych and she is on 30ml of prozac which seems to do nothing. I know it sounds like she is a monster...she really is a hilarious, smart, sweet kid who absolutely can't control herself at times and it doesn't seem like anything triggers it. SO- my question is...have any of you tried other meds for this and were you successful? Sadly, her behavior limits her from leading a fuller life and it limits our family as well. We don't go to many soccer games, movies, parties with her any more. It's just too hard and we're tired! Any information would be most appreciated! Sorry for such a long post!
Amy

[Annieo]

Hi Amy!!!! There's still a PM in my outbox that I sent to you after the last convention. I'm still waiting for a response--LOL!!! (I'm not really sure what the message is about anymore!)

I'm sorry to hear Jane is having such challenging behavior problems. I know Leah has dealt with some difficult stuff with Angela. I'll let her know you posted.

I hope you're doing well!!! Not sure when I'll make it to another convention. I think I realized after the last one that I was really only going for the party of it all. I spent a ton of money on stuff to help John and haven't used any of it. (Bad parent! Very bad parent!)

_________________


Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

[Amy Jensen]

Hey Annie!
I have to check that Pm box Yes- My Jane definitely gives us a run for our money and we have tried every behavior modification/positive behavioral supports/token economies, etc...all the expert's faves, you name it! She really is impulsive and doesn't seem to care about the consequences or the rewards at certain moments. As we head towards puberty, I really feel like we need to get this under control. I am up for any suggestions!
How's your big brood?
I am a little" conventioned out" myself these days. The best part was seeing people like you and getting a chance to hang out face to face.
I am going right now to check my PM box!
Amy

_________________
Amy
Mom to Gigi(15), Charlie(12) and Janie(11-Ds), and Pia( 7)

[lespring]

For several years we were doing FBA's, intensive behavior plans, had an in-home behavior therapist coming twice a week, etc. and nothing was working. WE were learning lots, but nothing was changing for Angela. I kept saying that her behavior didn't seem to serve any purpose. When the FBA's were done they kept coming back with the same thing: yes, there was definite function for some of her behaviors (avoidance, frustration, etc.) but the really aggressive stuff - like when she crossed the entire classroom to latch onto a kid's hair and bring her to the ground - didn't seem to serve any purpose.

In my mind, when the behavior serves no purpose, there is something medical going on. I questioned seizures several times, EEG's were done but nothing turned up. I wasn't convinced.

Then one day she started waking up in the middle of the night with HORRIBLE headaches, causing her to writhe and scream while she held her head. After a couple weeks of several incidents like this I called our pediatrician who threw a fit that I hadn't called sooner. I didn't know these were symptoms of three potential things, one of them being nocturnal seizures. That got us back into the neurologist, and that day while we were in his exam room, Angela came flying across the room at me in attack mode.

"THAT is a seizure" was the first thing out of the neuro's mouth. Simple partial seizures often manifest with sudden, unprovoked aggression. Angela can kind of talk through hers but she doesn't make sense. Her eyes are kind of glassy also. We KNOW what Angela's seizures look like, and they're well controlled with meds right now, but when she has one we don't usually know what we're seeing until afterward when we're like, "Umm..think that was a seizure."

The meds Angela takes, Topomax, is also used to treat migraines. Her neuro said this same behavior can also be caused by migraines in kids but the good thing is the medication works for both, so if we try it and it works, then we know it's one of those two problems.

Simple partial seizures RARELY show up on EEG's. I don't know how many EEG's Angela has had but the've never shown up. However, when she has breakthrough seizures two days in a row we adjust her meds and all is well in our world again.

Angela's seizures were diagnosed at the end of a school year, and by the time the year ended she hadn't been on the meds enough for the seizures to be well controlled. The next fall when she went back to school (30 lbs lighter AND seizure free) her teacher could hardly believe she was the same kid. She went from needing a 1:1 person right next to her all day at school to moving about the building completely independently, going back to mainstream classes, and generally being a pretty pleasant kid!

So, my point in all this is not to diagnose Jane with seizures! But you have done all the right things to address the behavior, it's time to rule out a medical reason for it. Usually behavior is communication, but that is only true if it's "behavior" and not a manifestation of a neurological disorder, such as seizures, migraines, etc.

_________________
~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)

[Amy Jensen]

Thanks Leah and good to hear from you! I never thought about a medical basis for this behavior, but I certainly will talk to her pediatrician about it. The reason I think it's not medical is because she has pretty much been this way-impulsive, oppositional forever! As I said, we have been thru MANY behavior plans with all the bells and whistles and yet her negative behaviors persist. My fear is that she is getting bigger and stronger and at some point will go thru puberty-yikes! I want her to be able to participate in activities within the community, but she hasn't been able to because of her behavior. She absolutely would need a one on one aide and the right person-anyone too warm and she will walk all over them! We have a shrink appt. soon, too and I will ask him about other meds. I don't love the idea of putting her on meds, but if they can help her to be more appropriate and less impulsive, then I will do it.

_________________
Amy
Mom to Gigi(15), Charlie(12) and Janie(11-Ds), and Pia( 7)

[lespring]

Angela is extremely impulsive. Always has been. These seizures were always there, they just weren't diagnosed until she was in 7th grade. She takes several different meds:

Guanfacine (for ADHD)
Topomax (seizures)
Risperidal (anti-pscychotic that helps with mood swings, aggression, some of her stimming)
Clonidine (sleeping)

Most of these meds Angela started on when she was 9. At that time I was really scared what was going to happen as she got bigger and stronger. And I was right. At 15 she's not fun when she gets in a mood...like yesterday. She's 100 lbs now and hard to move when she doesn't want to. But, when we started on the meds I knew there was no way we'd be able to manage her when she was bigger. We started the risperidal first, and within 48 hours she was a totally different child. That actually happened during our trip to the Atlanta convention all those years ago. Still, things weren't perfect, far from it in fact.

When we had her transition from elementary to middle school, her new teacher attended the meeting. She went back to her middle school staff and said, "We have some MAJOR training to do!" When I visited her classroom that spring, I got really worried. "This area is too small, there is no room for kids to get out of Angela's reach." The movable walls were then moved and the entire room reconfigured. The staff went through intensive training how to (and how NOT to) manage Angela's behaviors. From 3rd through 7th grade she only went to school 1/2 days because she couldn't handle an entire day. They'd spend the entire afternoon just trying to keep everyone else safe. It was at the end of her 7th grade year that we figured out the seizures. Her behavior took a 180.

She's a freshman now. She's in several mainstream classes, very involved in sports, and is "trying to get a boyfriend" now. We still have our days, (like yesterday when I had to move the boys out of her reach) but they are few and far between. I can honestly say, life is good. If it wasn't, we wouldn't have even considered adopting the two new little guys we have!

_________________
~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)

[burnsun]

Eliza did exactly that and Prozac did nothing for her (first choic from docs)..... risperidone andintunive did...... but that is our case..... we had to make the call that gave us a little (ok a lot ) weight gain but I got my little girl back and with consisten behavior issues combined with intuniv have made her much easier to eliminate these issues.

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!




wife to the best & greatest guy Eric



http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

[Tom]

Monster? No way! She sounds like Mikey. .

I would recomend taking her to see Dr. Capone at the Kennedy Krieger Institute in Baltimore. Sounds like she could use a complete medical work up.

Mikey has gone through different medications. Risperdal is a good one for him. He is also on an anti-seizure medication.

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

[Amy Jensen]

Thanks for the help. I just saw the last 2 posts...for some reason I am not being alerted when someone replies. So it seems that risperadol is used to help even out moods, which would be great, but what about the side effects? They scare me. Have any of your kids experienced bad side effects?

_________________
Amy
Mom to Gigi(15), Charlie(12) and Janie(11-Ds), and Pia( 7)

[burnsun]

Devon had none and no weight gain...... and then
Eliza had weight gain.... a lot...... and both started at same amount.....

We monitor the kids for their sugars...... no issues...... we would like to use it with Colin but he has type one diabetes and endocrine said NOPE......

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!




wife to the best & greatest guy Eric



http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

[Amy Jensen]

Thanks Jane. I will talk to the psychiatrist about it at our next appt.

_________________
Amy
Mom to Gigi(15), Charlie(12) and Janie(11-Ds), and Pia( 7)

[burnsun]

and all mine are on a very low dosage..... and Eliza's weight gain is not huge..... but it was huge for her..... about 15 -20 lbs....she had been underweight..... she is now over weight but still on 65% on DS charts.....

she takes .5 mg 2 x day she is 7 and Devon is at 1 mg 2 x day he is 11 they are both considered low doses at this point

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!




wife to the best & greatest guy Eric



http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

[Tom]

We never had a problem with side effects. It stopped working for awhile and he was on something else for over a year but then we went back and it was working again. I think Leah had said that she saw tiredness has a side effect.

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

[sarah's mommy]

My daughter will be 11 in September. About two years ago she developed some behavior problems. Mostly, she was being aggressive with other children. She also started screaming much of the time. FBA shows there is no rhyme or reason when she gets aggressive. I have noticed that she is grouchy much of the time. We started her on Intuniv last August and saw a huge improvement in her behavior. I thought it was the miracle cure but it's effectiveness seems to wear off the longer she takes it. We have increased the dosage twice already. I just wish we could get our happy little girl back.

_________________
Wife to Sam
Mommy to Alyssa (5-18-90) and
Sarah (9-10-01) Ds
Gigi to Lillianna (6-7-11)

[Amy]

Austin is on risperadol .75ml once a day. It's highly affective at school but he still has a one on one aide. He did gain weight but not too much. He's also on celexa. That helps with the OCD behavior, the risperadol helps with the aggressive behavior. I think too it could be hormonal for Sarah. A lot of the girls with DS start with puberty early. So far, with 5 girls, I haven't found a drug to help with that one.
But i think the riperadol would help with her aggressive behavior. A visit or consultation with Dr. Capone would be awesome.
Let us know how things work out!

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS