Behavior problems

[Guest guest]

I don't know why I'm asking this, or if it has anything at all to do with

health. Just desperate I guess. 's been acting like a BEAST for days. At

first I thought it was the " independent 3s " kicking in, but it's getting

worse. She's doing the typical " I do it by myself " and that kind of insistent

stuff, but she's also being sort of violent. Like she'll hurt you on purpose.

Pull your hair, jump on you, kick out at you (acting like it's playful) with

this grin on her face like she's enjoying herself! Two days ago she helped

herself to something in the fridge, which she was told not to, and when I

took it away she stabbed me in the back with a fork. Can you believe that?

Thank goodness I had on two shirts, it didn't break the skin (just my heart).

I feel like I handle things pretty well, I've read all the right ways to

respond to things, I've practically memorized " What to Expect the Toddler

Years " , so it's not like I'm just winging it.

And we're supposed to move back to the condo sometime soon. Wait till that

stress kicks in. I really can't think of anything too major going on right

now to cause this...

Any ideas or help?

Mother of the Sesame Street Slasher

(mom to , age: almost 3 -- Polysaccharide antibody def)

[Guest guest]

Hi ,

It's nice to see that you can keep your sense of humor through a difficult

time. Does take Prednisone for any reason? Prednisone can cause

aggressive and unusual behavior. Or could it be possible that she has a sinus

infection? As my son started getting older, his sinus infections produced

belligerent behavior. I refer to it as SINUS INFECTION BEHAVIOR. I think he

is so uncomfortable (not to mention sleep deprived) when he is infected that

he acts out. He is definitely not himself. Has showed any signs of

possible infection?

Sandi--Mom to , age 8. Suspected IgA def., Tetrology of Falot, chronic

sinusitis, chronic ear infections (with tubes), severe allergies. Nine

surgeries, one pending.

[Guest guest]

I want to get back with you later. I am at the office and quite busy right now.

Lucas is so like that I think we are a couple of years ahead of you and

can probably be of some help. Hang in there. BARBIE

[Guest guest]

How did you respond when she poked you in the back? Did you act

shocked, hurt, angry, what? Sometimes kids this age are looking for a

particular response.

Maybe it's time to teach her some responsibility for her actions. For

example, show her it hurts you when she does something (tears are ok)

and then, let's say she kicked you, have her hold an ice pack on YOUR

ouchies. Explain that it hurt and that she needs to make it all better.

You'd be amazed at how much compassion she will learn from this.

That's just one idea. Being a Head Start teacher for 3-5 year olds has

taught me a lot. As far as independant, well it's time. Let her do as

much as possible but realize it will take twice as long. Dressing

herself, setting the table, cleaning up toys, even some simple household

chores are all good for her. Try it and be patient.

Kim, mom to Linz and Graham

[Guest guest]

--,

Does he have this problem every morning or just when its time for

school? Does he like school? Is there a natural incentive you can

use to get the clothes on? My son had a thing with socks and shoes,

so we told him if he did this, then he would be able to go to the

store and buy something. So there was a connection between putting

shoes on in order to go outside(what we all do prior to going out,

and is a natural reward). We were able to carry this over to times

when the end result was going to the store to buy something. He got

used to putting the socks and shoes on.

Thea

- In autism@y..., " butterfli472 " <butterfli472@h...>

wrote:

> Just as in the name of this group, we have behavior problems. The

> problem is getting dressed in the morning. It turns into an all

out

> fight resulting in tantrum, crying, and self abuse. We have tried

> changing the time of getting dressed from last thing before

school,

> to first when he wakes up, to inbetween. Tried no tv until he

gets

> dressed to watching tv while he gets dressed. Tried time out

until

> he gets dressed to yelling until he does it. Have tried about

three

> different reward charts to try to encourage him to put the darn

> clothes on, but doesn't work. His desire is to play and watch tv,

> then gets dressed when he wants to. He wakes at 6:30am and we

leave

> for school at 8am. Our counselor, who is of NO help with

anything,

> said our methods have not worked, so we must try something

> different. I told her the ONLY thing I have not done was to slap

him

> around in order to make him comply. Obviously, that is not

something

> I plan to do, but I am at witts end. He is verbal and clothes are

> clothes he always wears, nothing new. It almost seems like he is

> just plain lazy. Since the world we live in does not accept

nudity

> in schools, any ideas how to help?

>

> frustrated mom to Damin 9, PDD-NOS, GAD, probable FG Syndrome

[Guest guest]

,

This sounds so familiar! is exactly the same way. He is such a

pain to get up and going in the mornings. We have been fighting this

battle forever, but it has been horrible since he started school last

year. I've had the most luck with these techniques.

First, I decided that if he didn't want to dress for school, he could

go in his underwear. Well, he tried to call my bluff until I was

walking out the door. You never saw a kid get dressed so fast! This

worked for about six months, until it got warm out. Then, we figured

out that(and this is terrible but it works) if we messed up his

beanie babies, he would jump out of bed like a shot. Granted he was

upset and angry, but when we promised not to move his beanies if he

would get up and dress for school, he became more agreeable to

dressing. has to fix his beanies every morning and every night

and everytime in between if he sees they are even slightly moved (I

can't tell, but he always knows). It is working, for now.

We also use a pictureboard schedule for him with every activity of

the day on it and a time next to it for when the activity is to

happen. I started using this about a month ago. I made it out of

cardboard and set it up to hold the day of the week and twelve

activities for the day. I also made digital style time cards for

every hour and half hour so he could match the time to our microwave

clock. I made picture cards for everything I could think of

(examples: take meds, eat breakfast, feed the dog, going to cub

scouts, eat dinner)and laminated them and the board. Then I put

velcro on the board and cards so that they can be changed daily.

removes a card each time he completes an activity.This picture

board schedule has really helped in improving 's behavior at

home. He still has meltdowns, but they are not as often. He still

dawdles, but now, I can point to his board and say, " There will be no

TV tonight if you can't move along " and then I pull off the picture

of the TV. This visual re-enforcement really works for him.

We also allow zero TV or trucks (favorite toy)in the mornings until

he is completely dressed, has eaten breakfast, taken his meds, and

fed the dog.

Now, if I could just get him to stop spinning for hours and hitting

himself in the head when he is wound up or frustrated.....

Vicci, mom to ADHD/ODD,DSI,OCD,PDD

> Just as in the name of this group, we have behavior problems. The

> problem is getting dressed in the morning. It turns into an all

out

> fight resulting in tantrum, crying, and self abuse. We have tried

> changing the time of getting dressed from last thing before school,

> to first when he wakes up, to inbetween. Tried no tv until he gets

> dressed to watching tv while he gets dressed. Tried time out until

> he gets dressed to yelling until he does it. Have tried about

three

> different reward charts to try to encourage him to put the darn

> clothes on, but doesn't work. His desire is to play and watch tv,

> then gets dressed when he wants to. He wakes at 6:30am and we leave

> for school at 8am. Our counselor, who is of NO help with anything,

> said our methods have not worked, so we must try something

> different. I told her the ONLY thing I have not done was to slap

him

> around in order to make him comply. Obviously, that is not

something

> I plan to do, but I am at witts end. He is verbal and clothes are

> clothes he always wears, nothing new. It almost seems like he is

> just plain lazy. Since the world we live in does not accept nudity

> in schools, any ideas how to help?

>

> frustrated mom to Damin 9, PDD-NOS, GAD, probable FG Syndrome

[Guest guest]

>Just as in the name of this group, we have behavior problems. The

>problem is getting dressed in the morning. It turns into an all

>

,

I know of a mom who has an arrangement with the school and she just

plain does not go through all that in the morning, and they get to

school as soon as she can get her child there. I'm guessing this removes

alot of the parent's stress and the child's reactions to parental

stress. When you think about some of the things you can get in an IEP,

this makes sense.

I wonder if this arrangement is similar to the antidote to escape

behavior I use. It is scary, but the only thing that works w/my autistic

guys when they take off w/no sense of danger, etc., is to sit down right

where I am, or otherwise act like I could care less what they do.

I will tell you right now that using any form of physical punishment

will probably start you on a road that will have to get worse if this

form is going to keep helping. So, I personally made a decision not to

start, no matter how bad things get!

Good luck,

mom of twins w/autism

>

>

>

>

[Guest guest]

This would not work with Evan. He could care less if we were not chasing

him. It just gives him a bigger head start.!

In His Love,

Betty

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall, Omega 3's

Evan - 8 yo nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Tegretol, Adderall Omega 3's

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

----- Original Message -----

From: " Pabst " <julie@...>

> I wonder if this arrangement is similar to the antidote to escape

> behavior I use. It is scary, but the only thing that works w/my autistic

> guys when they take off w/no sense of danger, etc., is to sit down right

> where I am, or otherwise act like I could care less what they do.

[Guest guest]

-I always told everyone in my house, if you run after he will

run faster. So, now we let him go and he looks back to see if we are

coming.

Thea

-- In autism@y..., " Betty " <banthony@c...> wrote:

> This would not work with Evan. He could care less if we were not

chasing

> him. It just gives him a bigger head start.!

> In His Love,

> Betty

> grandma and guardian to

> - 11 yo-- Bipolar/ADHD on Depakote, Adderall, Omega 3's

> Evan - 8 yo nonverbal autism on 3 mg Risperdal

> - 6 - Bipolar/ADHD/RAD/PTSD on Tegretol, Adderall Omega 3's

> mother to , their mom - Bipolar/ADHD on Topamax

> wife to Bob too many meds to remember

>

>

> ----- Original Message -----

> From: " Pabst " <julie@n...>

>

> > I wonder if this arrangement is similar to the antidote to escape

> > behavior I use. It is scary, but the only thing that works w/my

autistic

> > guys when they take off w/no sense of danger, etc., is to sit

down right

> > where I am, or otherwise act like I could care less what they do.

[Guest guest]

His dressing problem is every day. Weekends, holidays, everything.

He likes school ok. Doesn't love it, doesn't hate it. We have tried

insentives like toys and money. His mood regulates how he will

respond. Just to make me look like I am nuts, this morning, he got

up, asked for his clothes and got dressed by himself. Absolutely no

prompting. I made it a big point to give lots of positive

reinforcement on a job well done. He got a bonus point on his chart

for getting dressed. His mood was fantastic today! I am just so

baffled about him. If the mood is ok and receptive, he will do what

is asked. If he is cranky or irritable, which is most times, forget

it. He will tune out and not do anything, include eat.

I do like the idea of letting him go to school in pj's if he won't

get dressed. I will give that a shot next time!

Just cuious, how do you tell the difference between a child who is

bipolar, and a child that has various moods throughout the day?

thanks for advice,

-mom to Damin 9 PDD-NOS, GAD, probable FG Syndrome

> > This would not work with Evan. He could care less if we were not

> chasing

> > him. It just gives him a bigger head start.!

> > In His Love,

> > Betty

> > grandma and guardian to

> > - 11 yo-- Bipolar/ADHD on Depakote, Adderall, Omega 3's

> > Evan - 8 yo nonverbal autism on 3 mg Risperdal

> > - 6 - Bipolar/ADHD/RAD/PTSD on Tegretol, Adderall Omega 3's

> > mother to , their mom - Bipolar/ADHD on Topamax

> > wife to Bob too many meds to remember

> >

> >

> > ----- Original Message -----

> > From: " Pabst " <julie@n...>

> >

> > > I wonder if this arrangement is similar to the antidote to

escape

> > > behavior I use. It is scary, but the only thing that works w/my

> autistic

> > > guys when they take off w/no sense of danger, etc., is to sit

> down right

> > > where I am, or otherwise act like I could care less what they

do.

[Guest guest]

Kim,

What assessment was done other than the ?

The history of the youngster would suggest he might have serious

problems with attachment. I have worked with quite a few kids with

attachment disorder. The impulsive nature of these kids is not

necessarily ADD. They do not respond to relationships, and are often

times hypervigilant. This constant scanning of the environment can

look very much like the inattention you would see in ADD but its roots

are very different.

I would always start with a thorough diagnostic assessment and history

with a child like this. I would suggest having the parents fill out

Amens ADD subtype checklist and do some comparison between that

and the eeg assessment. I would also suggest a trauma history

checklist or an attachment checklist such as the RAD-Q.

I have had most success training these kids with Roshi, placements and

protocol based on assessment. In most of the cases I have done the

bulk of training at F7 F8 two channel (Roshi). Sebern Fisher has done

a lot of writing on NFB and attachment. She has a very specific

protocol she uses. Perhaps someone on the list has the specifics of

that protocol. I would not, however, use that protocol unless you were

very certain that RAD a problem.

On Nov 30, 2005, at 7:32 AM, EEG Neurofeedback wrote:

> HI GROUP,

> I've finally stumbled on a very interesting child, been working with

> this 10 year old boy that was adopted around 5, in and out of foster

> care before that time, has had neurofeedback in the past with another

> neuro tech, didn't do much good at the time,  did the TOVA test showed

> ADHD, started with c4-p4 2-13 6-9 14-30 I did 20 session then did

> another tova, this time it showed up as ADD, then started  frontal

> training 2-13 reward 5.5-8.5  14-30 there again 20 sessions did fine, 

> did another tova showed quarter 2 are not within normal limits and are

> suggestive of impulsivity (disinhibition) and / or behavior problems.

> Well we know he has behavior problems (bad) at home and in school, has

> anyone every had a child like this before and if so how did you handle

> it or better yet trained them. I still feel its frontal lobe problems.

> Any info would be great!

> Kim

>

>

>

[Guest guest]

What does the assessment show?

~

behavior problems

HI GROUP,

I've finally stumbled on a very interesting child, been working with this 10 year old boy that was adopted around 5, in and out of foster care before that time, has had neurofeedback in the past with another neuro tech, didn't do much good at the time, did the TOVA test showed ADHD, started with c4-p4 2-13 6-9 14-30 I did 20 session then did another tova, this time it showed up as ADD, then started frontal training 2-13 reward 5.5-8.5 14-30 there again 20 sessions did fine, did another tova showed quarter 2 are not within normal limits and are suggestive of impulsivity (disinhibition) and / or behavior problems. Well we know he has behavior problems (bad) at home and in school, has anyone every had a child like this before and if so how did you handle it or better yet trained them. I still feel its frontal lobe problems.

Any info would be great!

Kim

[Guest guest]

..Brennan had put on a big t-shirt(he is 3) and put

> a big bouncy ball in the front and one in the back. then he stood in

> the living room falling forward and backward BOUNCE BOUNCE BOUNCE and

> she was like, he has been doing this for HOURS!! I laughed and told

> her THAT is why he didnt go to the concert LOL!!!

,

I have never needed a laugh more than I did tonight, and that made me

laugh out loud. Thank you.

Ana 13 mo, IgG def, FTT, atopic, reflux?? and ???

[Guest guest]

..Brennan had put on a big t-shirt(he is 3) and put

> a big bouncy ball in the front and one in the back. then he stood in

> the living room falling forward and backward BOUNCE BOUNCE BOUNCE and

> she was like, he has been doing this for HOURS!! I laughed and told

> her THAT is why he didnt go to the concert LOL!!!

,

I have never needed a laugh more than I did tonight, and that made me

laugh out loud. Thank you.

Ana 13 mo, IgG def, FTT, atopic, reflux?? and ???

[Guest guest]

Isabelle has had JRA since the age of 2 so it was hard to tell

whether it was the disease/meds or the " terrible twos " that was

causing so many melt-downs. She is now 4 yrs. old and still cries

easily, freaks out over not having her socks on right at times even,

lol! I don't know really if the MTX can make a child have bigger

mood swings but I'll bet they do feel more tired than most children

in general and that can cause crying spells and crankiness.

I'll bet your daughter is feeling anger that she just doesn't know

what to do with. I know adults go through the same thing when

accepting a dx chronic disease. It's such a terribly out-of-contol

feeling and maybe your daughter has " a wisdom beyond her years " that

makes her keenly aware of what is happening to her. I would imagine

that time to come to an acceptance will bring about positive changes

in her behavior eventually. Try as much as you can to stay tough and

not let her get away with bad behavior at home (something all of us

moms can fall into the trap when we have children that are dealing

with disease and particularly when the disease is painful).

I really wish that there was a support group for our children that

meets monthly at the least for get togethers. I think having friends

that are dealing with JRA is a good way to feel not so alone in this

world. It can feel isolating as a parent even so I'll bet it's a

huge toll on our children. Maybe I should ask my rheumy if a group

support exhists in our area...???

Your a good mom and don't forget this. This too shall pass....

Hugs, Hadley (Isabelle, 4 yrs. , n 15 yrs, Katharine 13 yrs.,

and 20 mos.)

>

> my oldest is having a very hard time right now with being different

> because she can't do everything her friends do. it has gotten so

bad

> that she is now acting up at school and the teachers have sent her

to

> the counseler. she has become hostile towards me and her dad, i

guess

> because we are the ones tell her no. other times the littlest thing

> will set her off and she will just start crying. this is the

worst!!! i

> feel like i'm losing my little girl, she is usually very

respectful,

> sweet and fun loving. but now she is closed off. she won't talk to

me

> and if she does it is one or two word answers. we use to not beable

to

> get her to stop talking. the nurse at her school seems to think

that it

> is because of the mtx she is on. i don't know because it isn't a

listed

> side effect. she is only six i didn't expect this kind of behavior

> until she was a teen.

> does anyone have any suggestions or have dealt with the same type

of

> behavior?

> we are so scared!!

>

> nicki

>

[Guest guest]

Nicki,

My daughter is 9, and had some problems at the beginning of the school year. We had just moved to the area, and she had to start a new school. She didn't want to tell anyone about her JRA, and wanted it on the down low. However, people looked at her funny, when it was circle time on the floor, and she had to sit on a chair....but still, she didn't want to tell anyone. It was just a secret between us and the teacher at the time. Kids were teasing her and stuff as well, but she didn't act up like you are saying your daughter is doing......She wasn't able to do everything that other kid did at recess and p.e. and such. I had her go and talk to the counselor as well, but still much hadn't changed. I finally asked the teacher if the nurse could go into their class and talk about jra to the other kids,

and other diseases that kids might have. She went on to talk about germs and washing your hands and such....which is good, since the med's suppress their immune system and they get sick often. I think it really made the kids open their eyes to kids with disablities. Not only kids with jra, but when you are at the mall, and see a kid in a wheelchair and stuff......that was our coming out, as I call it.....and the kids finally understood some of what she is going through, and why she has to be so different and they were ok with it. It was a few months after that, that we found out she had a 1 inch leg difference. I told her it is ok, no one has to know that you have to wear special shoe inserts and stuff...but she just thought it was the coolest thing. She ran up to the kids at the bus stop saying hey......my right leg is 1 inch longer then my left...isn't that cool!!!!

I agree with Hadley, don't let her get away with it at home otherwise she will think it is ok to continue. Maybe take her out for an ice cream, the two of you and have a little one on one talk and try and see what is bothering her. Maybe she will open up to you. i will keep your family in my thoughts and prayers, as you get through this difficult time. Just stay strong!

Helen

Re: behavior problems

Isabelle has had JRA since the age of 2 so it was hard to tell whether it was the disease/meds or the "terrible twos" that was causing so many melt-downs. She is now 4 yrs. old and still cries easily, freaks out over not having her socks on right at times even, lol! I don't know really if the MTX can make a child have bigger mood swings but I'll bet they do feel more tired than most children in general and that can cause crying spells and crankiness. I'll bet your daughter is feeling anger that she just doesn't know what to do with. I know adults go through the same thing when accepting a dx chronic disease. It's such a terribly out-of-contol feeling and maybe your daughter has "a wisdom beyond her years" that makes her keenly aware of what is happening to her. I would imagine that time to come to an acceptance will bring about positive changes in her behavior eventually. Try as much as you can

to stay tough and not let her get away with bad behavior at home (something all of us moms can fall into the trap when we have children that are dealing with disease and particularly when the disease is painful). I really wish that there was a support group for our children that meets monthly at the least for get togethers. I think having friends that are dealing with JRA is a good way to feel not so alone in this world. It can feel isolating as a parent even so I'll bet it's a huge toll on our children. Maybe I should ask my rheumy if a group support exhists in our area...??? Your a good mom and don't forget this. This too shall pass....Hugs, Hadley (Isabelle, 4 yrs. , n 15 yrs, Katharine 13 yrs., and 20 mos.) >> my oldest is having a very hard time right now with being different > because she can't do everything her friends do. it has gotten so bad > that she is now acting up at school and the teachers have sent her to > the counseler. she has become hostile towards me and her dad, i guess > because we are the ones tell her no. other times the littlest thing > will set her off and she will just start crying. this is the worst!!! i > feel like i'm losing my little girl, she is usually very respectful, > sweet and fun loving. but now she is closed off. she won't talk to me > and if she does it is one or two word answers. we use to not beable to > get her to stop talking. the nurse at her school seems to think that it > is because of the mtx she is on. i don't know because it isn't a

listed > side effect. she is only six i didn't expect this kind of behavior > until she was a teen. > does anyone have any suggestions or have dealt with the same type of > behavior? > we are so scared!!> > nicki>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hello- Kids are complex.... and many times fight the people closest to them because they don't know how else to handle it. When I used tgo go to the JA camp and also run the group for teens with JA.... there were a lto of parents who had kids of different ages that were having a lto of emotional difficulties. Most of them were tied back to anger issues related to being 'different' and the disease. Sometimes teasing, loosing friends and other issues still related to the disease.

I remember one girl in particular with systemic JRA. She was 8 and was really rebellious as her parents called her. She would not comply well with PT and could hardly walk. They didn't allow her to go to Disneytland because of this behavior for her birthday and that punished her brother too so they were upset.

I asked them had anything happend before the change and at one point they talked about her being on Enbrel and how well she had done and than when the company hadn't produced enough... she had to come off for awhile. Had a terrible flare up. She was back on it again.

Anyways, it was SOOOO clear to me that the girl was ANGRY because she had had nearly no pain and very few JRA symptoms and than they all came back once this drug was gone. It's kinda shocking. like what... it's all dependent on a drug and it can be taken from me!!

She was a very smart little girl and that just added to it. I spent a lot of time with her at camp that week and she was having a hard time. She was a bit sassy... very funny though. Her parents could not see the connection between the disease and the med and her behavior. IT was clear as night and day to me and I had hoped that maybe they would see it. I talked to our peds rheumy about it with the hoppes that maybe she could say something ot maybe the social worker could talk to them about it because it was obvious that they were mad and punishing her more ofr this behavior but not realizing that she was angry and hurt with the disease. And not that it makes her acting out right but it helped to understand why it existed.

I personally thought it was rather harsh that since the girl hadnt been doing her PT faithfully and couldnt really walk well that they refused to let her use a wheelchair and wouldn't let her go to disneyland as a result of this but they saw it as hewr being stubborn.

Anyways, I do agree with others about taking some special time for trying to talk and/or spend special time together. I'm a major believer in therapy/counseling so I always say it's not a bad idea to get a consultation with a therapist especialy if you can find someone that works with kids that have chronic illness in particular.

I know I went through some stuff like this myself and my school counselor had been very concerned. I wouldn't open up to ANYONE and I was mad. The problem was that I felt lied to by my health proffessionals so I didnt trust them... and I guess I was at that age. I was very non-compliant and just difficult. My rheumatologist got a psychologist to talk to me during one of my appointments which annoyed me the More... lol. The thing that solved a lot for me was actually attending Juvenile Arthritis Camp. That was REALLY helpful and theraputic for me. I met others like me.. got to see the reality of the situation from people with it.... it was just great. Buyt thats me...

Anyways.. just my 2-3 cents...

Issadora

On Wed, May 7, 2008 at 8:40 AM, nicolestiltner <nicolestiltner@...> wrote:

my oldest is having a very hard time right now with being different because she can't do everything her friends do. it has gotten so bad that she is now acting up at school and the teachers have sent her to

the counseler. she has become hostile towards me and her dad, i guess because we are the ones tell her no. other times the littlest thing will set her off and she will just start crying. this is the worst!!! i

feel like i'm losing my little girl, she is usually very respectful, sweet and fun loving. but now she is closed off. she won't talk to me and if she does it is one or two word answers. we use to not beable to

get her to stop talking. the nurse at her school seems to think that it is because of the mtx she is on. i don't know because it isn't a listed side effect. she is only six i didn't expect this kind of behavior

until she was a teen. does anyone have any suggestions or have dealt with the same type of behavior? we are so scared!!nicki -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

[Guest guest]

where are these ja camps. it sounds just like what she needs. she is

having problems with bullies and her friends don't want to play with

her because she can't run and jump and do everything they do. she

needs to see that she and her sister aren't alone.

thanks

nicki

>

> > my oldest is having a very hard time right now with being

different

> > because she can't do everything her friends do. it has gotten so

bad

> > that she is now acting up at school and the teachers have sent

her to

> > the counseler. she has become hostile towards me and her dad, i

guess

> > because we are the ones tell her no. other times the littlest

thing

> > will set her off and she will just start crying. this is the

worst!!! i

> > feel like i'm losing my little girl, she is usually very

respectful,

> > sweet and fun loving. but now she is closed off. she won't talk

to me

> > and if she does it is one or two word answers. we use to not

beable to

> > get her to stop talking. the nurse at her school seems to think

that it

> > is because of the mtx she is on. i don't know because it isn't a

listed

> > side effect. she is only six i didn't expect this kind of behavior

> > until she was a teen.

> > does anyone have any suggestions or have dealt with the same type

of

> > behavior?

> > we are so scared!!

> >

> > nicki

> >

> >

> >

>

>

>

> --

> " Life- Like the flutter of wings... feel your hollow wings

rushing... " (AFI-

> Silver and Cold).

>

> my Flight in life is a metamorphosis of growth and this flutter of

wings is

> within me awaiting to find a space to find it's flow...

>

[Guest guest]

I’m not sure where you live, but

many chapters of the Arthritis Foundation run them. In Illinois,

we have Camp JAM run through the local chapter. Go to

www.arthritis.org to find your local

chapter.

There are also camps run through the

Neuman foundation – Hole in the Wall Gang camps in various parts of

the country. They offer certain weeks during the year for kids with chronic

illnesses including jra. Here is the web address www.holeinthewallcamps.org These

are just a few suggestions.

Michele ( 20, spondy)

From: [mailto: ] On Behalf Of nicolestiltner

Sent: Thursday, May 08, 2008 11:39

AM

Subject: Re: behavior

problems

where are these ja camps. it sounds just like what she

needs. she is

having problems with bullies and her friends don't want to play with

her because she can't run and jump and do everything they do. she

needs to see that she and her sister aren't alone.

thanks

nicki

>

> > my oldest is having a very hard time right now with being

different

> > because she can't do everything her friends do. it has gotten so

bad

> > that she is now acting up at school and the teachers have sent

her to

> > the counseler. she has become hostile towards me and her dad, i

guess

> > because we are the ones tell her no. other times the littlest

thing

> > will set her off and she will just start crying. this is the

worst!!! i

> > feel like i'm losing my little girl, she is usually very

respectful,

> > sweet and fun loving. but now she is closed off. she won't talk

to me

> > and if she does it is one or two word answers. we use to not

beable to

> > get her to stop talking. the nurse at her school seems to think

that it

> > is because of the mtx she is on. i don't know because it isn't a

listed

> > side effect. she is only six i didn't expect this kind of behavior

> > until she was a teen.

> > does anyone have any suggestions or have dealt with the same type

of

> > behavior?

> > we are so scared!!

> >

> > nicki

> >

> >

> >

>

>

>

> --

> " Life- Like the flutter of wings... feel your hollow wings

rushing... " (AFI-

> Silver and Cold).

>

> my Flight in life is a metamorphosis of growth and this flutter of

wings is

> within me awaiting to find a space to find it's flow...

>

[Guest guest]

The hole in the wall gang camp looks fabulous!!

There are a few camps that accept kids with various health issues/disabilities and several chapters of the AF have JA camps as Michele said. hope one is near! Another great thing.. while not the same as camp is attending the AJAO- American Juvneile Arthritis Org. conferences because their are lots of kids there going through the same things and it also is a place to feel not so alone. I have enjoyed attending these conferences almost as much as JA camp.

Issadora

On Thu, May 8, 2008 at 10:06 AM, Tepper, Michele <MTepper@...> wrote:

I'm not sure where you live, but many chapters of the Arthritis Foundation run them. In Illinois, we have Camp JAM run through the local chapter. Go to www.arthritis.org to find your local chapter.

There are also camps run through the Neuman foundation – Hole in the Wall Gang camps in various parts of the country. They offer certain weeks during the year for kids with chronic illnesses including jra. Here is the web address www.holeinthewallcamps.org These are just a few suggestions.

Michele ( 20, spondy)

From: [mailto: ] On Behalf Of nicolestiltner

Sent: Thursday, May 08, 2008 11:39 AM

Subject: Re: behavior problems

where are these ja camps. it sounds just like what she needs. she is having problems with bullies and her friends don't want to play with

her because she can't run and jump and do everything they do. she needs to see that she and her sister aren't alone.thanksnicki> > > my oldest is having a very hard time right now with being

different> > because she can't do everything her friends do. it has gotten so bad> > that she is now acting up at school and the teachers have sent her to> > the counseler. she has become hostile towards me and her dad, i

guess> > because we are the ones tell her no. other times the littlest thing> > will set her off and she will just start crying. this is the worst!!! i> > feel like i'm losing my little girl, she is usually very

respectful,> > sweet and fun loving. but now she is closed off. she won't talk to me> > and if she does it is one or two word answers. we use to not beable to> > get her to stop talking. the nurse at her school seems to think

that it> > is because of the mtx she is on. i don't know because it isn't a listed> > side effect. she is only six i didn't expect this kind of behavior> > until she was a teen.

> > does anyone have any suggestions or have dealt with the same type of> > behavior?> > we are so scared!!> >> > nicki> >> > > >>

> > > -- > " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI-> Silver and Cold).> > my Flight in life is a metamorphosis of growth and this flutter of

wings is> within me awaiting to find a space to find it's flow...>

-- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

[Guest guest]

has been to the California Hole In the Wall Gang Camp "Painted Turtle" (family weekend camps for Primary Immune Deficiency and JRA) and even the weekends have made such a huge difference in her outlook and acceptance of her illnesses...the people are beyond fantastic...she is hoping to be selected as an LIT (leader in training) for the arthritis camp this summer. If you are near California/west coast, the website is "thepaintedturtle.org"nancy (amanda, 17, poly, cvid, hashimotos)Issadora <FlyfreeIzzie@...> wrote: The hole in the wall gang camp looks fabulous!! There are a few camps that accept kids with various health issues/disabilities and several chapters of the AF have JA camps as Michele said. hope one is near! Another great thing.. while not the same as camp is attending the AJAO- American Juvneile Arthritis Org. conferences because their are lots of kids there going through the same things and it also is a place to feel not so alone. I have enjoyed attending these conferences almost as much as JA camp. Issadora On Thu, May 8, 2008 at 10:06 AM, Tepper, Michele <MTepperftportfolios> wrote: I'm not sure where you live, but many chapters of the Arthritis Foundation run them. In Illinois, we have Camp JAM run through the local chapter. Go to www.arthritis.org to find your local chapter. There are also camps run through the Neuman foundation – Hole in the Wall Gang camps in various parts of the country. They offer certain weeks during the year for kids with chronic illnesses including jra. Here is the web address www.holeinthewallcamps.org These are just a few suggestions. Michele ( 20, spondy) From: [mailto: ] On Behalf Of

nicolestiltner Sent: Thursday, May 08, 2008 11:39 AM Subject: Re: behavior problems where are these ja camps. it sounds just like what she needs. she is having problems with bullies and her friends don't want to play with her because she can't run and jump and do everything they do. she needs to see that she and her sister aren't alone.thanksnicki> > > my oldest is having a very hard time right now with being different> > because she can't do everything her friends do. it has gotten so bad> > that she is now acting up at school and the teachers have sent her to> > the counseler. she has become hostile towards me and her dad, i guess> > because we are the ones tell her no. other times the littlest thing> > will set her off and she will just start crying. this is the worst!!! i> > feel like i'm losing my little girl, she is usually very

respectful,> > sweet and fun loving. but now she is closed off. she won't talk to me> > and if she does it is one or two word answers. we use to not beable to> > get her to stop talking. the nurse at her school seems to think that it> > is because of the mtx she is on. i don't know because it isn't a listed> > side effect. she is only six i didn't expect this kind of behavior> > until she was a teen. > > does anyone have any suggestions or have dealt with the same type of> > behavior?> > we are so scared!!> >> > nicki> >> > > >> > > > -- > "Life- Like the flutter of wings... feel your hollow wings rushing..." (AFI-> Silver and Cold).> > my Flight in life is a metamorphosis of growth and this flutter of wings is> within me awaiting to find a

space to find it's flow...> -- "Life- Like the flutter of wings... feel your hollow wings rushing..." (AFI- Silver and Cold). my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi Nicki,

I'm so sorry to hear of your little ones frustrations and anger. My

isn't even two yet, but I can see her frustration many times. I

hope a JRA camp is near you guys. I bet your girls would love that!

Everyone I talked to with children and teens a bit older than my

daughter had great things to say about the experience. Have you looked

into maybe going to the JRA Conference this year in Cali? It's called

Cruisin for a Cure in 2008. It sounds like a blast....we'll be saving

up for next year .

Best wishes

Lani and (poly)-- In , " nicolestiltner "

<nicolestiltner@...> wrote:

>

> my oldest is having a very hard time right now with being different

> because she can't do everything her friends do. it has gotten so bad

> that she is now acting up at school and the teachers have sent her to

> the counseler. she has become hostile towards me and her dad, i guess

> because we are the ones tell her no. other times the littlest thing

> will set her off and she will just start crying. this is the worst!!! i

> feel like i'm losing my little girl, she is usually very respectful,

> sweet and fun loving. but now she is closed off. she won't talk to me

> and if she does it is one or two word answers. we use to not beable to

> get her to stop talking. the nurse at her school seems to think that it

> is because of the mtx she is on. i don't know because it isn't a listed

> side effect. she is only six i didn't expect this kind of behavior

> until she was a teen.

> does anyone have any suggestions or have dealt with the same type of

> behavior?

> we are so scared!!

>

> nicki

>

[Guest guest]

i've looked into the jra camps and unfortunately she is not old

enough for the ones that are close to us. we are unable to go to the

cali confrence this year but we are already planning on going next

year. i did find the victory junction gang camp in nc has family

weekends in the spring and fall. at these camps they let the kids

play while the parents attend seminars and family counsleing

sessions. we are planning on going this fall or at very least next

spring.

thanks for all the support it is really helpful during this stressful

time.

nicki

> >

> > my oldest is having a very hard time right now with being

different

> > because she can't do everything her friends do. it has gotten so

bad

> > that she is now acting up at school and the teachers have sent

her to

> > the counseler. she has become hostile towards me and her dad, i

guess

> > because we are the ones tell her no. other times the littlest

thing

> > will set her off and she will just start crying. this is the

worst!!! i

> > feel like i'm losing my little girl, she is usually very

respectful,

> > sweet and fun loving. but now she is closed off. she won't talk

to me

> > and if she does it is one or two word answers. we use to not

beable to

> > get her to stop talking. the nurse at her school seems to think

that it

> > is because of the mtx she is on. i don't know because it isn't a

listed

> > side effect. she is only six i didn't expect this kind of

behavior

> > until she was a teen.

> > does anyone have any suggestions or have dealt with the same type

of

> > behavior?

> > we are so scared!!

> >

> > nicki

> >

>

[Guest guest]

Hello everyone,

I was wondering if anyone has experienced behavioral problems with their child

after stopping valtrex? My daughter recently had her first appt. with

Dr.Goldberg. He took her off valtrex to start her on Famvere. She has been

getting very agressive and having more tantrums then usual. It worries me

because she has become violent towards her 3 year old sister when she is in one

of her rages.

When we saw doctor Goldberg I mentioned to him that she had been regressing now

for several weeks. She just turned 5 but as Dr. G mentioned she is at a 3 year

old level. If anyone has any suggestions on how to deal with her

agression/behavior can you please advise.

As for many of you, this has been a very difficult thing for me to deal with and

I Just don't know how to handle her tantrums anymore as I myself have gotten hit

by her when she is going through them. So again any suggestions would be GREATLY

appreciated. Thanks, May

[Guest guest]

Hi My son is also experiencing big behavior issues. He has been on valtrex for 2

months and we just got the rx for diflucan. I think he has severe yeast issues

and that is why he's been so extreme lately.

My question, is it ok to give liquid non-compounded fluconazole? When I called

CVS and asked for the ingredients, I was concerned about aluminum and wanted to

make sure there were no metals, she claimed there weren't any. However she

listed titanium dioxide or sulfide and i said to her isn't titanium a metal? She

said oh yes but it's perfectly safe in this form. I haven't given it to Jake

yet. Should I get this compounded? & nbsp; What is the better way to give this

medication to our kids?

Vicki

& gt; Hello everyone,

& gt; I was wondering if anyone has experienced behavioral problems with

& gt; their child after stopping valtrex? My daughter recently had her

& gt; first appt. with Dr.Goldberg. He took her off valtrex to start her

& gt; on Famvere. She has been getting very agressive and having more

& gt; tantrums then usual. It worries me because she has become violent

& gt; towards her 3 year old sister when she is in one of her rages.

& gt;

& gt; When we saw doctor Goldberg I mentioned to him that she had been

& gt; regressing now for several weeks. She just turned 5 but as Dr. G

& gt; mentioned she is at a 3 year old level. If anyone has any

& gt; suggestions on how to deal with her agression/behavior can you

& gt; please advise.

& gt;

& gt; As for many of you, this has been a very difficult thing for me to

& gt; deal with and I Just don't know how to handle her tantrums anymore

& gt; as I myself have gotten hit by her when she is going through them.

& gt; So again any suggestions would be GREATLY appreciated. Thanks, May

& gt;

& gt;