Re: Help - I am going to lose it!!!!!!!!!!!!!!

July 8, 2008

I feel your pain! Not sleeping and getting hit by your own child is doubly

painful.

A few things come to mind: Does she have an ear infection? Have you tried

Benedryl for sleep? Is she constipated? or gassy? How often do you need to

vent the feeding tube? Remeron( mirtazapine) is another med for both the

aggression and for sleeping issues. note this med has NOT been cleared for

children (most meds aren't cause kids are not study participants) but I have

used it with kids as young as 5yo.

On Tue, Jul 8, 2008 at 11:04 AM, Van Straaten <

ali_van_straaten@...> wrote:

> I'm not sure if anyone has any suggestions but regardless I need to vent

> especially to people that have some understanding of what I am talking

> about. My daughter Amy (4 yo, DS, ASD) is going to make me lose it soon.

> Since she has been out of school (she was in preschool 3 mornings a week),

> her head banging, hitting, pinching and hair pulling (the later three are

> all to me and her siblings not hereself) have been out of control. I feel

> like an abused mother with bruises all over me. I cannot give her the one on

> one time she is used to as I also have 2 younger children (3 & 1) but I have

> been trying my hardest. She will not self play so when I do sit down and try

> and engage her in an activity she is constantly hitting and pinching me.

> Then, if I am not giving her the attention she needs then she is banging her

> head on the wall or the floor. It is driving me nuts. I am trying to be

> patient and understanding with her but I am lacking sleep right now too and

> with this

> heat I really have no patience!! Then last night she was yawning and

> banging her head at 6:30 so I put her to bed, she continued to get out of

> bed and bang her head on the door until I came upstairs. I would bring her

> down and she would keep pinching me and banging her head so then I would

> take her back upstairs. This continued on until 9:00 when she finally fell

> asleep. Then at 1:30 am she started banging her head again. She did this for

> an hour before she settled back down again. This is very unlike her. She is

> usually really good at going to sleep and then staying asleep (although she

> does have possible sleep apnea??). I have read some posting that say their

> children on are risperidine (not sure of spelling sorry) but she can not

> take this as she already tried it and had seizures while on it. Are there

> any other meds that anyone has had success with for reducing agression

> (without making them a zombie)?

>

> Anyway, I just needed to vent. Her agression is really starting to bother

> me and I don't know how I am going to do a whole summer of this. She is at

> the respite house today here in Stratford and has a worker for 10 hours a

> week but that doesn't seem to be enough. I am having a hard time finding

> someone to help me who is able to feed her (she has a feeding tube) and my

> in-laws are useless as far as helping me goes!!!

>

> Hope everyone else is having a better summer then me!!!!

>

> Ali

>

> ---------------------------------

> Be smarter than spam. See how smart SpamGuard is at giving junk email the

> boot with the All-new Yahoo! Mail

>

July 8, 2008

Dear Ali,

Oh my gosh! Can I ever relate! It's not exactly the same as with

but there are sure some similarities! Going off the usual routine is SO

hard for our kids! One thing I tried re: the head banging was to get a

bike helmet and put it on whenever she would start that behavior.

She hated the helmet and really it took 2 times of putting that helmet

on and she stopped. She still hits herself but that isn't as intense as

the head banging on the walls and tile floors. I know this wouldn't

work for everyone but it was cheap and worth a try.

What I think with is her behaviors generally stem from anxiety or

feeling out of control - and change always brings this on, so you might

ask your doctor about trying an anti-anxiety med or low does of blood

pressure med as they use both of these for anxiety disorders. was

on ativan (didn't make her a zombie but wasn't as effective as we would

have liked) for quite a while and it helped, but wasn't the total

answer. Her new doc is trying Tenex (blood pressure med) at 1mg (very

low dose - not effective for bp but helps with anxiety) and she seems

happier without being zonked. We are also trying Revia for

self-injurious behaviors, its for kids who get a " high " from hitting.

So far its helping but we've only been using it for a week and it takes

a couple of weeks to get the full effect. We also might have to

increase the dose so we are not Revia pros by any means.

I hope this gives you something to go to your doctor with. I know it

can be VERY hard to find a psychiatrist who knows what to do with our

kids! We finally found a guy who specializes in special needs kids and

of course he isn't covered by insurance (he's out-of-network so we have

to spend an additional $6000.00 per year to meet where they will pay for

him) but at least he knows what he's doing!

BTW - also has a feeding tube, and as sweet and loving as they are

her grandparents are completely incapable of helping with her! Luckily

they can help with the other kids when I have to take to an

appointment - that kind of thing - but even that is very limited. I

don't know where you are but we have a program here in CA that gives us

a nurse because of 's feeding tube and mental retardation. It is

through regional center and is called a Medicaid Waiver Program

(Medi-Cal here but still medicaid for other states). We have a nurse

for her 39 hours per week, then we get the respite on top of that which

we use to complete a 40 hour week and for my husband and I to

occasionally get a day together. The nurse goes to 's school and

feeds here there and then meets us at home when the bus comes. She

works 10-6, M-F. I would actually use a nurse less, let the school do

the feedings, but its hard to get a nurse to work less than full time.

Like anyone else, they want benefits and all that so we compromise.

Good luck, know you are not alone!

(s' mom, 9,DS, ASD)

>

> I'm not sure if anyone has any suggestions but regardless I need to

vent especially to people that have some understanding of what I am

talking about. My daughter Amy (4 yo, DS, ASD) is going to make me lose

it soon. Since she has been out of school (she was in preschool 3

mornings a week), her head banging, hitting, pinching and hair pulling

(the later three are all to me and her siblings not hereself) have been

out of control. I feel like an abused mother with bruises all over me. I

cannot give her the one on one time she is used to as I also have 2

younger children (3 & 1) but I have been trying my hardest. She will not

self play so when I do sit down and try and engage her in an activity

she is constantly hitting and pinching me. Then, if I am not giving her

the attention she needs then she is banging her head on the wall or the

floor. It is driving me nuts. I am trying to be patient and

understanding with her but I am lacking sleep right now too and with

this

> heat I really have no patience!! Then last night she was yawning and

banging her head at 6:30 so I put her to bed, she continued to get out

of bed and bang her head on the door until I came upstairs. I would

bring her down and she would keep pinching me and banging her head so

then I would take her back upstairs. This continued on until 9:00 when

she finally fell asleep. Then at 1:30 am she started banging her head

again. She did this for an hour before she settled back down again. This

is very unlike her. She is usually really good at going to sleep and

then staying asleep (although she does have possible sleep apnea??). I

have read some posting that say their children on are risperidine (not

sure of spelling sorry) but she can not take this as she already tried

it and had seizures while on it. Are there any other meds that anyone

has had success with for reducing agression (without making them a

zombie)?

>

> Anyway, I just needed to vent. Her agression is really starting to

bother me and I don't know how I am going to do a whole summer of this.

She is at the respite house today here in Stratford and has a worker for

10 hours a week but that doesn't seem to be enough. I am having a hard

time finding someone to help me who is able to feed her (she has a

feeding tube) and my in-laws are useless as far as helping me goes!!!

>

> Hope everyone else is having a better summer then me!!!!

>

> Ali

>

> ---------------------------------

> Be smarter than spam. See how smart SpamGuard is at giving junk email

the boot with the All-new Yahoo! Mail

>

July 8, 2008

Ali,

My heart goes out to you, and I've definitely felt some of your pain -

literally! I've recently thought that my 4 year old () may need some

medicine for aggression too, so at this point I can't recommend anything.

Years ago used to drive me crazy by pinching the back of my legs.

Especially if I was at the kitchen sink. At a behavior meeting they said she

was doing it for attention. It didn't only happen at the sink. It would happen

if I was right in front of her playing with her. At some point she went from

pinching to the hair pulling - mostly mine. This went on for over a year. She

had basically stopped pulling my hair, and then we adopted her sister. We got

home 2 days before her first birthday, and started up the hair

pulling again, but with then more malice this time around.

's teacher thinks that the hair pulling is a sensory issue for .

I'm not sure if it's sensory or not, but I think a lot of it stems from

jealousy. I am happy to say (knock on wood) that is doing it less

frequently lately. She's having more " nice hands " moments with . However,

she is starting to cry off & on again some days. I think that it's sensory

combined with not being able to talk (communicate) her feelings very well. This

along with the eating issues have me in tears/depressed a lot...

I really feel for you having 2 younger children to protect, in addition to

yourself. These past 8 months there have been MANY times when I wished we

hadn't adopted . I didn't know it was going to be this rough.

started ESY yesterday, so for the month of July her & won't have too much

time together on weekdays. I'm hoping will appreciate more when

they are together.

I pray things get better for you & your family really soon.

Nina

Help - I am going to lose it!!!!!!!!!!!!!!

I'm not sure if anyone has any suggestions but regardless I need to vent

especially to people that have some understanding of what I am talking about. My

daughter Amy (4 yo, DS, ASD) is going to make me lose it soon. Since she has

been out of school (she was in preschool 3 mornings a week), her head banging,

hitting, pinching and hair pulling (the later three are all to me and her

siblings not hereself) have been out of control. I feel like an abused mother

with bruises all over me. I cannot give her the one on one time she is used to

as I also have 2 younger children (3 & 1) but I have been trying my hardest. She

will not self play so when I do sit down and try and engage her in an activity

she is constantly hitting and pinching me. Then, if I am not giving her the

attention she needs then she is banging her head on the wall or the floor. It is

driving me nuts. I am trying to be patient and understanding with her but I am

lacking sleep right now too and with this

heat I really have no patience!! Then last night she was yawning and banging

her head at 6:30 so I put her to bed, she continued to get out of bed and bang

her head on the door until I came upstairs. I would bring her down and she would

keep pinching me and banging her head so then I would take her back upstairs.

This continued on until 9:00 when she finally fell asleep. Then at 1:30 am she

started banging her head again. She did this for an hour before she settled back

down again. This is very unlike her. She is usually really good at going to

sleep and then staying asleep (although she does have possible sleep apnea??). I

have read some posting that say their children on are risperidine (not sure of

spelling sorry) but she can not take this as she already tried it and had

seizures while on it. Are there any other meds that anyone has had success with

for reducing agression (without making them a zombie)?

Anyway, I just needed to vent. Her agression is really starting to bother me

and I don't know how I am going to do a whole summer of this. She is at the

respite house today here in Stratford and has a worker for 10 hours a week but

that doesn't seem to be enough. I am having a hard time finding someone to help

me who is able to feed her (she has a feeding tube) and my in-laws are useless

as far as helping me goes!!!

Hope everyone else is having a better summer then me!!!!

Ali

---------------------------------

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot

with the All-new Yahoo! Mail

July 8, 2008

Headbanding does get on your nerves. I know my son does this and

screaming a high pitched scream. My son took resiperidal and it

worked great for 2 years and it stopped working even though we

increase it.My son tends to get more self injurious when he is

sick.He once broke his own nose because he could not tell me he had a

sinus infection.Have you though about Amy not feeling well?Does it

seem like she is more self injurious than usual? What does you

husband do or say about the head banging? My son has not been well

and although he sleeps through the night usually for the past 2

nights he has been awake almost the whole night. I know from my

experience that if you do not get enough sleep your patience is on

short wire.First of all try to figure out what happened prior to her

headbanging that might have upset her.Analize before the head banging

and after the head banging.My son will get upset if something changes

on TV and he did not want it to change.Like someone is singing and

the singing stops. I had my son his communication book and I ask him

what he wants.If it I can fix the problem within reason like a drink

or a snack I will do so but if he wants to go shopping I have to come

up with an alternative.Does get get ot or pt? ASk about them showing

you how to do a sensory diet on her. Cyndi B

>

> I'm not sure if anyone has any suggestions but regardless I need to

vent especially to people that have some understanding of what I am

talking about. My daughter Amy (4 yo, DS, ASD) is going to make me

lose it soon. Since she has been out of school (she was in preschool

3 mornings a week), her head banging, hitting, pinching and hair

pulling (the later three are all to me and her siblings not hereself)

have been out of control. I feel like an abused mother with bruises

all over me. I cannot give her the one on one time she is used to as

I also have 2 younger children (3 & 1) but I have been trying my

hardest. She will not self play so when I do sit down and try and

engage her in an activity she is constantly hitting and pinching me.

Then, if I am not giving her the attention she needs then she is

banging her head on the wall or the floor. It is driving me nuts. I

am trying to be patient and understanding with her but I am lacking

sleep right now too and with this

> heat I really have no patience!! Then last night she was yawning

and banging her head at 6:30 so I put her to bed, she continued to

get out of bed and bang her head on the door until I came upstairs.

I would bring her down and she would keep pinching me and banging her

head so then I would take her back upstairs. This continued on until

9:00 when she finally fell asleep. Then at 1:30 am she started

banging her head again. She did this for an hour before she settled

back down again. This is very unlike her. She is usually really

good at going to sleep and then staying asleep (although she does

have possible sleep apnea??). I have read some posting that say

their children on are risperidine (not sure of spelling sorry) but

she can not take this as she already tried it and had seizures while

on it. Are there any other meds that anyone has had success with for

reducing agression (without making them a zombie)?

>

> Anyway, I just needed to vent. Her agression is really starting

to bother me and I don't know how I am going to do a whole summer of

this. She is at the respite house today here in Stratford and has a

worker for 10 hours a week but that doesn't seem to be enough. I am

having a hard time finding someone to help me who is able to feed her

(she has a feeding tube) and my in-laws are useless as far as helping

me goes!!!

>

> Hope everyone else is having a better summer then me!!!!

>

> Ali

>

> ---------------------------------

> Be smarter than spam. See how smart SpamGuard is at giving junk

email the boot with the All-new Yahoo! Mail

>

July 8, 2008

She has never had any issues with her ears so I never thought of that. I have

not tried benedryl at all. I will check with my pharmacist to make sure it

doesn't interact with any of the meds she is already on. She is often gasey and

I notice her stomach is distended so I do try venting her quite often but

nothing ever comes out. We are seeing her GI on Thursday as she has been having

ongoing stomach issues.

thanks for your words of wisdom and I will mention that med to her dev ped

next time we go.

Ali

Sara Cohen wrote:

I feel your pain! Not sleeping and getting hit by your own child is

doubly