RE: Tantrums ( Kim, Tim, Pam, Anyone)

[Guest guest]

Jeanie,

First off, I feel your frustration as well as Mackenzie's. The behavioral

part is the hardest and just when you think things are in control-BAM they are

not. Like Debbie said I think the medications can play a key role and

unfortunately they sometimes are not the answer. Wouldn't it be so easy if

they

were. (Matt too at times) can be pretty explosive and have periods of

real rage. We are actually weaning him off of Prozac for the first time in 2

years and he recently came off the Depakote only being on it for 6 months.

We have tried other things, but we have decided to clean him out and start

over. I am not sure what the next step is with medication, but I know he needs

to be on something. I wish I had answers for you, but I can tell you that

change in the routine is a big factor too. When things are not structured the

Murray house seems to fall apart, the problem is life cannot always be

structured. It is like watching those Nanny 911 shows and how they make things

seem so perfect with a schedule-come on, at least in my everyday life that just

cannot happen!!!

I think working with school, a neurologist/psychologist and yourselves you

just have to keeping trying different things. Hang in there...I try to tell

myself that these are phases and they shall pass. I guess the problem

sometimes if I am being honest is how long can I last. I tend to get so

frustrated

myself and angry at times. I know the behaviors are not the children's

fault, but it is tiring and I am usually exhausted 24/7!!! Again, take a deep

breathe and sometimes just walking away and allowing them to have the tantrum

is

the best thing. We have pretty much cleared out 's room except for his

bed and if he needs to have a meltdown at least it is a safe environment were

he cannot get hurt.

Good luck.

Murray

mom to twin Chargers and (8 yrs. old) and wife to Jay

[Guest guest]

Kim , Tim, Pam , anyone,

I'm reading back over your post concerning temper tantrums. We need help!

MacKenzie is having a hell of a month. I realize that with Christmas coming,

change of schedules, etc, she would be having a rough time, but things are

getting out of control. I would describe her actions more of a complete and

utter lack of control that quickly builds to a rage. She growls and screams

for hours at a time. Her arms are black and blue from pounding walls,

tables, etc.

We have ruled out any obvious hidden pains and her communication is good

enough that I think she could tell us if something was hurting. I'm starting

to believe that she is profoundly neurologically impaired. She's maxed out

on Prozac and Risperdal; and I'm maxed out on Effexor and Amitriptyline. We

really can't continue to live this way. my boys leave the house and return

with her in a rage.

I'm starting to become worried about my behaviour. I grabbed her by the

shoulders and shook her this morning. I think it shocked her enough to bring

her around, but it's obviously not the answer.

Help

Jeanie

mom to MacKenzie 7 CHARGE, Tyler 14 & Zachary 11

[Guest guest]

Jeanie, I feel your pain, things have been like that here as well. not so

much rage , but hitting brothers, the mouth going off at brothers and smart

mouth to me. not doing what he's asked throwing the biggest whining fits

ever--crying for no reason. sometimes it's from lack of sleep, others who

knows?

he's not on meds, but I'm ready to try some....thank goodness mine are

working. and don't feel bad last night I had to shake tim to get his

attention. yelling and threatening did no good. and all over going to the

bathroom!!! he had to go, but was afraid the light was off, liam went and

checked it was on--still wouldn't go in, was about to pee his pants. and it

was DAYLIGHT for crying out loud!!!! we have a sensor light so it goes on

automatiically.

would write more but need to get him to the dentist--should be fun--haha.

good luck.

Re: Tantrums ( Kim, Tim, Pam, Anyone)

> Kim , Tim, Pam , anyone,

> I'm reading back over your post concerning temper tantrums. We need help!

> MacKenzie is having a hell of a month. I realize that with Christmas

> coming,

> change of schedules, etc, she would be having a rough time, but things are

> getting out of control. I would describe her actions more of a complete

> and

> utter lack of control that quickly builds to a rage. She growls and

> screams

> for hours at a time. Her arms are black and blue from pounding walls,

> tables, etc.

>

> We have ruled out any obvious hidden pains and her communication is good

> enough that I think she could tell us if something was hurting. I'm

> starting

> to believe that she is profoundly neurologically impaired. She's maxed out

> on Prozac and Risperdal; and I'm maxed out on Effexor and Amitriptyline.

> We

> really can't continue to live this way. my boys leave the house and return

> with her in a rage.

>

> I'm starting to become worried about my behaviour. I grabbed her by the

> shoulders and shook her this morning. I think it shocked her enough to

> bring

> her around, but it's obviously not the answer.

>

> Help

> Jeanie

> mom to MacKenzie 7 CHARGE, Tyler 14 & Zachary 11

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Jeanie-

I don't have answers, but wanted to offer a hug and support. As a mom, I

can imagine the desperate feeling when you can't understand, let alone help,

your child. Then to see yourself acting out in frustration... Haven't we

all " lost it " at some point with our kids and handled a situation in a way

that we later regret?? (Gee, I hope it's a universal thing, or else I

really am a bad parent...) Anyway, you've got older kids so you surely you

know that feeling. But I imagine that this is different because you are

desperate and frustrated with a different kind of behavior. When we " lose

it " in the face of typical kid stuff, we know we can handle it better next

time, we have lots of friends and family who can share and understand our

frustration. But with this behavior of Mackenzie's - there aren't many

people who are sharing your experience. And it's not just a " kid thing "

that she'll outgrow or that we expect to manage in our parenting. It's

totally outside our realm of expectation and understanding. For her sake

and yours, I hope you find an answer that gives her back her self-control.

I hope peace finds you this holiday...

Michele W

Aubrie's mom

[Guest guest]

Jeanie,

Jeanie,

I feel for you deeply. I am no doctor, only a parent, but got

over-activated on the Prozac, to the point of uncontrollable rage. He

couldn't be on it. It could be a reaction to the medications.

We are now working with a neuro-psychiatrist who is baffled by my kid and

how he reacts to the medications. Right now he is only on Depakote and

Wellbutrin. The Wellbutrin works well. We also have a behavioralist from

Kennedy Krieger who is working with us in regards to schedules etc. and we

use a Token Board now (she comes to my house). The meds alone don't work

for us.

Debbie Matasker

Re: Tantrums ( Kim, Tim, Pam, Anyone)

Kim , Tim, Pam , anyone,

I'm reading back over your post concerning temper tantrums. We need help!

MacKenzie is having a hell of a month. I realize that with Christmas coming,

change of schedules, etc, she would be having a rough time, but things are

getting out of control. I would describe her actions more of a complete and

utter lack of control that quickly builds to a rage. She growls and screams

for hours at a time. Her arms are black and blue from pounding walls,

tables, etc.

We have ruled out any obvious hidden pains and her communication is good

enough that I think she could tell us if something was hurting. I'm starting

to believe that she is profoundly neurologically impaired. She's maxed out

on Prozac and Risperdal; and I'm maxed out on Effexor and Amitriptyline. We

really can't continue to live this way. my boys leave the house and return

with her in a rage.

I'm starting to become worried about my behaviour. I grabbed her by the

shoulders and shook her this morning. I think it shocked her enough to bring

her around, but it's obviously not the answer.

Help

Jeanie

mom to MacKenzie 7 CHARGE, Tyler 14 & Zachary 11

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Jeanie,

I wish I had an easy answer for you. I can only repeat that it is my belief

that whatever is happening is DRIVEN from inside of her and is beyond her

ability to self-regulate, talk about, explain or change. She has used all

of her coping skills.

I remember you saying awhile ago, that breakfast at your house (ours too)

was like a scene from the miracle worker. At first I pictured the taking

food from the plates. Now I am picturing Helen tantruming.

It makes me long to understand what changes inside that leads to such

obvious distress. For me it must have to do with neurochemistry, but I want

to know what leads to the change. In the Miracle Worker it came down to

structure, language, and relationship, but Mac has those things. It is

something else!

My concern about medication for Dylan has always been that his " condition "

does not stay the same, but the medications do. For example, Tyler has

Inattentive ADD. It may be impacted by lack of sleep, poor diet, and so on,

but overall the core symptoms of ADD remain. When he takes his meds, the

change in function is noticeable. When he doesn't take his meds, it is

obvious. For Dylan, sometimes he is wild, sometimes, he is under-active,

sometimes he is just right. My fear has always been for him that if his

neurochemistry fluctuates for whatever CHARGE reason, how can the

medications stay effective? Doctors have told me, I just don't understand

how the meds work and they are right, but it still does not seem logical to

me, which is why I tried to avoid meds for him when he was at his " worst " .

I am still not convinced he won't ever need them for something, but I do

think it will need more monitoring than Tyler's.

I have also seen and heard of numerous people having major reactions when

they get too much serotonin and also of one child who became violent and

suicidal on risperdal. We try the meds, but we can't really measure how

much is needed on a daily basis.

I guess my instinct is just that, for whatever reason she does need to have

her meds weaned and readjusted. That does nothing to help you in the here

and now of how to cope and make it through the day and that process, I wish

it did.

I also know when Dylan was at his " worst " , I was not emotionally at my best

either. I felt so powerless about it all, and as much as my husband

reassured me that it was just a phase, I had no conviction that it wasn't

going to lead to a worse phase. And I was painfully aware of how much it

was limiting his function in the world, when I knew there was so much there.

The dreams I had for his future died in that phase and I felt powerless at

doing anything to help change the course to get it back on track.

I work for a developmental psychologist and he taught me marvelous things

for staying calm while Tyler raged or Dylan was frantic, so I did not add

fuel to the fire, but inside I was still desperate to help them learn to

regulate them selves and the emotional aftermath always stayed with me far

longer than it did them. Then I also know with Tyler that sometimes he did

need something to change his state, to snap him out of it, to break his

brain out of that pattern. The problem was how to do that in a way that was

not harmful to him. Unfortunately it usually was a 6'5 " father with a very

measured voice (that said I am calm now, but I am barely controlling it and

I can squash you like a bug if you push it any farther) and hands gripping

him that snapped him out of it. It wasn't really about power it was about

putting up boundaries to help him to contain it when they were too big for

either Tyler or I.

I don't know if any of these thoughts help you cope with your emotions

through this and I do hope you get some help from the docs soon. I can only

think how totally awful it must feel to her, you, and her brothers.

Hugs, and more hugs to you.

Kim

> Kim , Tim, Pam , anyone,

> I'm reading back over your post concerning temper tantrums. We need help!

> MacKenzie is having a hell of a month. I realize that with Christmas coming,

> change of schedules, etc, she would be having a rough time, but things are

> getting out of control. I would describe her actions more of a complete and

> utter lack of control that quickly builds to a rage. She growls and screams

> for hours at a time. Her arms are black and blue from pounding walls,

> tables, etc.

>

> We have ruled out any obvious hidden pains and her communication is good

> enough that I think she could tell us if something was hurting. I'm starting

> to believe that she is profoundly neurologically impaired. She's maxed out

> on Prozac and Risperdal; and I'm maxed out on Effexor and Amitriptyline. We

> really can't continue to live this way. my boys leave the house and return

> with her in a rage.

>

> I'm starting to become worried about my behaviour. I grabbed her by the

> shoulders and shook her this morning. I think it shocked her enough to bring

> her around, but it's obviously not the answer.

>

> Help

> Jeanie

> mom to MacKenzie 7 CHARGE, Tyler 14 & Zachary 11

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Hello Jeanie,

I am so sorry that I have not responded sooner--I have had only moments to

comment in short spurts.

I have read the posts related to this one and I am not sure I have a whole lot

more to add. We have surely seen this same kind of behavior in our kids at

school and as you say, it seems as though it comes from out of the blue and

there is no relief. As you say, Makenzie has the language to say if something

is wrong, but this is something she cannot verbalize so the thought that it is

neurological in nature is something I think is true. Kim has responded

brilliantly (of course!) about the neuro foundations and how they impact overall

(sensory issues, for example). And Makenzie is a good example of someone who

has the language but can't put words to it--she can't explain it either but, boy

is she showing you something terrible is off!.

With our kids, and as others commented so succinctly, behavior plans (structure)

with medication back up is the beginning of some semblance of order--within the

child and within your home. Relaxation techniques (Bonnie has commented about

this), SMI techniques (dark, quiet room, weighted blankets, deep pressure) are

things we use at school, along with a very clear schedule of events and

contingencies for change in the schedule.

Because I am coming late to this discussion, I can only hope I have added

somehow. I am also sending this to Dr. Veronika and to Laurie Denno for their

thoughts.

And have things calmed down any? I can imagine Christmas is a big trigger with

many things being different and the upcoming school vacation (ours has begun

already). Do you think she is at all stressed with the idea of vacation and not

knowing what is going to happen to her during her days? As with many things

with our kids, things that we crave (like a vacation) are stress triggers for

them.

I'll stop here, but will you keep us posted? I know you are headed for a med

review and hopefully that will be enlightening. I wonder if the doc. will

prescribe something else--I am assuming OCD/anxiety are the focus of her meds.

pam

[Guest guest]

Pam,

Great post. I haven't had much time and have been reading just a little. I

have to add that Patty used to be unable to talk about it. Now she can. Not

when she is in the midst of it, her spinning, but when she is calm. And you

are so right, Christmas is one of those times during the year when it gets

harder. Schedules are off, there are tons of visual changes, the environment

changes, people change, music change, parties to attend.........

By the way, thank you for meeting with Kasee and Patty. She was here to see

the stress on a person with CHARGE and I think she got the max. We kept it as

real as possible. Having the ride be messed up and then having it not come

and get them is just one minor struggle. Thanks for your help on that one too.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Bonnie,

I will get back to you about the visit--was on the whole, great. I think that

Kasee did see some things that people read about, but when you see it in

action--Lightening bolt moment!!

more later.

pam