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In a message dated 6/21/01 4:34:06 AM Pacific Daylight Time,

okieleah@... writes:

<< with you

keeping in preschool, it might give her growing time. the

wandering/wetnoodle/dropnflop might decrease... just know you have

support..... take care , leah >>

Cheryl,

How did you manage to keep her in preschool? My district says NO WAY- NO

HOW.

Gail

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Hi Leah,

You make me laugh girl. The wetnoodle/dropnflop/wandering thing is

sooooo true. A decrease would be excellent. Mind you.....it is

nothing like the mushing and throwing poop thing that is currently

happening. That's truely gotta be the first thing to go. Amazing

how she can pick it up, play with it, toss it around, yet gagg and

almost puke over the smell of it.

I cannot imagine an IEP that took 47 hours to put together. You must

be thouroughly exhausted from it all. How many pages long is it???

It is sad to lose team members that have been there awhile, isn't

it. Especially when they are sooooo good with our kids. I hope all

goes well for Ashton's entry next fall. Sounds like alot of new

people involved. That is always so hard to transition through. man,

we will really need to talk to and support each other next fall,

while all of these transitions are happening.

Take care, Cheryl

>

> cheryl,

> i can understand the tears and the tide... it took over 47 hours to

get

> ashton's iep written and then it took me another two weeks of going

back and

> forth wanting things more clarified. i think your game plan sounds

great to

> me. i kept ashton in preschool an extra year and i am so very glad

i did.

> she likes that type of environment and the ot, st, pt and teacher

seemed to

> really mesh and all be positive team players..... we lost some fo

that going

> to elementary school. but now i think we have a great slp, but her

favorite

> ot is leaving for washington state and her aide quit and she will

have all

> new teachers, the esy staff is new too and then to add in next

year... major

> changes, if esy is a flop, i won't hesitate to pull her out... with

you

> keeping in preschool, it might give her growing time. the

> wandering/wetnoodle/dropnflop might decrease... just know you have

> support..... take care , leah

>

>

> >

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

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Cheryl,

I'll keep all my body parts crossed for you too! LOL Well, as many as this

old body can cross! LOL I suspect Cheryl that it's not only the area you

live in that makes a difference. It's probably more a knowledgeable, hard

working parent that gets things done right. My hat's off to you!

Gail

<< Hi Gail,

I live in BC if that makes a difference. I recently attended a

parent facilitator training workshop through our autism society, and

while sitting at the table, hearing other families stories, I learned

that other districts in our province were doing this when the team

felt it was the best placement. The school is mandated to provide an

educational program so that is a concern initially, but if the team

can see the possiblities of providing it in a different environment,

for the good of the child, doors may open. Ours hasn't been approved

yet, but will likely hear today or very soon. Keeping my fingers,

toes and eyes crossed very tightly.

Cheryl >>

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Cheryl,

I'll keep all my body parts crossed for you too! LOL Well, as many as this

old body can cross! LOL I suspect Cheryl that it's not only the area you

live in that makes a difference. It's probably more a knowledgeable, hard

working parent that gets things done right. My hat's off to you!

Gail

<< Hi Gail,

I live in BC if that makes a difference. I recently attended a

parent facilitator training workshop through our autism society, and

while sitting at the table, hearing other families stories, I learned

that other districts in our province were doing this when the team

felt it was the best placement. The school is mandated to provide an

educational program so that is a concern initially, but if the team

can see the possiblities of providing it in a different environment,

for the good of the child, doors may open. Ours hasn't been approved

yet, but will likely hear today or very soon. Keeping my fingers,

toes and eyes crossed very tightly.

Cheryl >>

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  • 5 months later...

Cheryl,

i did delete it and ran a virus scan when i

finished on the computer last night,nothing came up so

i am clear.going to keep a close eye on things though.

*hugz*

karyn

=====

i wish you mud puddles and dandelions

__________________________________________________

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These viruses scare the heck out of me, they get tricker each time, guess

it's a part of computer life, i'm sure not giving puter up, it's like my

left leg, hahaha it's part of me!!!! ahhhhh, Cheryl

RE: Cheryl

Cheryl,

i did delete it and ran a virus scan when i

finished on the computer last night,nothing came up so

i am clear.going to keep a close eye on things though.

*hugz*

karyn

=====

i wish you mud puddles and dandelions

__________________________________________________

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oh i agree totally Cheryl ! i would go crazier

without my computer.ok i admit it iam an addict hehehe

*hugz*

karyn

=====

i wish you mud puddles and dandelions

__________________________________________________

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  • 1 month later...

In a message dated 1/26/2002 5:53:11 PM Eastern Standard Time,

cmagnussen@... writes:

> My hip is improving nicely, thanks to all my kids helping out so very

> much.

I'm glad your hip is improving and the kids can help you out.

Charlyne

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In a message dated 1/26/2002 5:53:11 PM Eastern Standard Time,

cmagnussen@... writes:

> My hip is improving nicely, thanks to all my kids helping out so very

> much.

I'm glad your hip is improving and the kids can help you out.

Charlyne

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>>but I just wanted to remind you

that our bones are heavier that the average persons. Carrying excess

weight put stress on our bones and caused them to become denser, and

therefore heavier. I wish I had saved the report that one of the

post-ops posted about the study that was done on the weight of bones

that had been subjected to the stress.

Thist explains why you don't LOOK like you weigh 180!

Are you and Rudie coming to the Valentines Party??

Hugs,

Pat Lyle>>>

Pat you sweetie, I wish you had that article. I'd be very interested

in hearing about bone density. I guess that could explain why I am

heavier than I look. Or, maybe I just " wear it well " , hahaha...

I doubt Rudie and I will make it to the Valentine's Party. We are

scheduled to go out of town that weekend with another couple,

furniture shopping. Not sure where we will be but somewhere around

Greensboro. It would be difficult to " cut out " to attend a party.

Besides Rudie is still recovering from the Christmas Party, haha...

He's just not into parties and larger groups of people. He likes

small groups. Thank God he could talk to you at the Christmas party.

I didn't have to worry about him being restless!!!

I'm considering plastic surgery and exploring all options and

checking out what people have to say about their doctors. IF anyone

wants to share their experiences, please email me. I'd love to hear

from you.

Take care,

Cheryl

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You need to contact Breggin, MD -- his website is www.breggin.com. YOu will find his telephone number, etc listed there. He knows all about involuntary intoxication. The problem is that Steve's doctor is a complete dunderhead. He should never have been taken off the Effexor like that, and combining the cold meds, etc. probably catapulted him into serotonin syndrome. I can't believe something like this has happened (what the hell am I saying? I was only seconds from becoming a headline myself when I tried to get off Paxil!!) The other person I would contact is a lawyer named Don Farber. You can get his number and e-mail address off the Breggin site -- look under Paxil Lawsuit. What state are you in? Vickery & Waldner are in Texas and they handle cases like this all the time. This is going ot sound stupid, but HOW did Steve kill this person? You see, there is a pattern to the methods people use to commit these crimes. Wishing you the best of luck.

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You need to contact Breggin, MD -- his website is www.breggin.com. YOu will find his telephone number, etc listed there. He knows all about involuntary intoxication. The problem is that Steve's doctor is a complete dunderhead. He should never have been taken off the Effexor like that, and combining the cold meds, etc. probably catapulted him into serotonin syndrome. I can't believe something like this has happened (what the hell am I saying? I was only seconds from becoming a headline myself when I tried to get off Paxil!!) The other person I would contact is a lawyer named Don Farber. You can get his number and e-mail address off the Breggin site -- look under Paxil Lawsuit. What state are you in? Vickery & Waldner are in Texas and they handle cases like this all the time. This is going ot sound stupid, but HOW did Steve kill this person? You see, there is a pattern to the methods people use to commit these crimes. Wishing you the best of luck.

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This is absolutely amazing. I'll bet there are very few docctors around who even know about this study you just posted. And thank god Cheryl even mentioned the 1/4 Cherokee which got this ball rolling. I hope this information is useful, and even if it isn't, it just shows how tenacious and thorough and what good researchers we all are. Brava, Dawn!!!!

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This is absolutely amazing. I'll bet there are very few docctors around who even know about this study you just posted. And thank god Cheryl even mentioned the 1/4 Cherokee which got this ball rolling. I hope this information is useful, and even if it isn't, it just shows how tenacious and thorough and what good researchers we all are. Brava, Dawn!!!!

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This is absolutely amazing. I'll bet there are very few docctors around who even know about this study you just posted. And thank god Cheryl even mentioned the 1/4 Cherokee which got this ball rolling. I hope this information is useful, and even if it isn't, it just shows how tenacious and thorough and what good researchers we all are. Brava, Dawn!!!!

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This is absolutely amazing. I'll bet there are very few docctors around who even know about this study you just posted. And thank god Cheryl even mentioned the 1/4 Cherokee which got this ball rolling. I hope this information is useful, and even if it isn't, it just shows how tenacious and thorough and what good researchers we all are. Brava, Dawn!!!!

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  • 1 month later...
Guest guest

HI Dawn. If you don't mind, please forward it to him. You are very well

spoken, and I'm not. I will call tomorrow and get Tricia's e-mail address so

we can start e-mailing them directly to her. I pray Mr. IS reading

this stuff, as it is Steve's only hope for freedom, and my kids' only way to

get TRUE justice and closure. We are STILL having a hard time with my ex's

family. They continue to remove the flowers my daughter puts on her dad's

grave. Today, when we went out to put them back (again), we found a very

small vase with my daughter's flowers in it, along with a note that said

" your daddy would like your flowers BETTER, if they are SEPERATED from OURS "

!!! When will these people grow up? She has been through enough.

Love.....Cheryl

>From: " DAWN RIDER " <israelswarrior@...>

>Reply-SSRI medications

>SSRI medications

>Subject: Cheryl

>Date: Wed, 20 Mar 2002 15:12:56 -0700

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

Cheryl,

I would say send him everything and anything that will shed light on the dangers of these drugs. If he doesn't want to use it, he can disregard it. Did you get an E-mail address for Trisha?

Do you want me to forward this on to Mr. , or do you want to do it yourself? Let me know...

The Avenging Angel

Please sign the petitions at:

http://www.petitiononline.com/lilpro

http://www.petitiononline.com/oky71.html

http://www.petitiononline.com/effexor

----Original Message Follows----

From: "Cheryl Graves"

Reply-SSRI medications

SSRI medications

Subject: Re: Prozac (SSRIs), Zolfolt, Luzox, and Similiar Drugs, Vital Information

Date: Wed, 20 Mar 2002 16:25:03 -0500

Send and receive Hotmail on your mobile device: Click Here

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Cheryl

All I can say is "Oh, my God." I can't even imagine how bad that hurt.

I would have passed right out at the sight of it. I'm sitting here wincing

just thinking about it. Are you staying out of work for a while?

RE: Anti-scar salves/allergic reactions/feedback

Shaye,I haven't been keeping up with the list at all lately!! But I just gotstitches over a broken finger, just about tore the end of my finger off atwork with the bone snapping thru the skin, yikes! I just wanted to saythat comfrey heals so well you really don't want to use it on a deep cutwithout some kind of antibiotic added to the salve like tea tree. Theoutside of the cut will heal before the inside and if there is any chanceof infection inside it will get healed over, which isn't good! I also readsomewhere that calendula oil if applied every day AFTER the cut has healed(You have to use the oil at the very least a couple of months - 1 year)will help scars to dissapear. I hope your daughter is feeling better, that must have really smarted!!! Take care,Cheryl> Our Message Board> http://www.voy.com/21568/> > Check out these great Molds!!> http://soapwerks.com/martinworld.htm> > Member Kae's Site... Awesome oil Prices!> http://www.olivetreesoaps.com/> > > > All posts to this list are copyrighted by post author. They may NOT be> forwarded, copied, or used in anyway without the permission of the post> author with the exception of answering posts to this list. Posts are> personal opinions only.> > > >

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  • 4 months later...
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In a message dated 8/8/2002 10:02:31 PM Central Daylight Time,

writes:

<<

Hi , this sounds a bit like a program they have here for kids in

grades 9 to 12. they call it 'work experience' but I think it only

runs for a one term out of the whole school year. I like the idea of

making it part of the reg daily curriculum for kids who need to focus

more on life skills vs academics. I have offered to have some of the

kids from the resource room come out to work at our farm this year.

I can't wait to have them come out to spend time here.

Take care,

Cheryl

mom to Angel and Allie >>

wow, that would be great. would love to go to a farm. We live in

Wisconsin so he sees a lot of them but he has this great desire to go into

barns. Don't quite understand that one.

When I managed a group home the school district used it two days a week to

work on cleaning and cooking. They also used a family home for the same

purpose. The district now rents and apt. for this purpose. They have also

used to for a couple of guys with ds who were working on staying alone

overnight before renting their own apt. together. They got to " live " there

for short periods of time.

Our district also has kids working at a hotel learning to clean hotel rooms.

They also do some work at a few retail stores.

Unfortunately this isn't followed through much once school is no longer

involved.

Karyn

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In a message dated 8/8/2002 10:02:31 PM Central Daylight Time,

writes:

<< Hi Joan,

I like our psychiatrist alot. But he lives in Vancouver and we

reside on the Island. This means we connect for short phone calls

when something comes up, otherwise he sees her every 3 months. Our

local ped is a very good friend of ours and is fab. He phones the

psych to consult with when needed, which is great. But, I am not

sure how much experience the psych has had in both ds-asd or in

dealing with kids who have suffered extreme deprivation and neglect.

Mind you, none of us really know yet what that does to a child's

brain and what the long term effects shall be. Along with the pdd-

nos diagnosis Allie has also been diagnosed with seizure disorder,

tic disorder, adhd, and some attachment issues. I think all of these

other things really complicate it all when you are using

medications. One of the biggest things I have learned from this

experience with medications is that I will ask the psych or ped to

tell me every side effect we may encounter so that we know when we

need to take action promptly. Plus I will be sure that we work out a

better plan to monitor the medication.

Our ped was fab in connecting with dev peds who specialize in the

field of ds-asd when we were working on diagnosing Angel. He did a

lot of research for our team and was great in advocating for autism

funding for Angel.

All in all I think we have a good medical support team. I would love

to hear what Dr.Capone thinks is a good alternative to Risperidone.

That would put me at ease when I consider meds again. Kind of like

having a second opinion.

Thanks and take care, cheryl

mom to Angel and Allie >>

Cheryl,

I certainly can empathize on this one. We adopted . He came to us at 8

1/2. Then he had heart surgery two months late. The neglect and abuse issues

including attachment issues and I believe PTSD are things that no one seemed

to consider. Of course, trying to take all the info and apply it to a kid

with ds and all his medical issues was not something anyone has the

experience to understand. Add to that the fact that he has many autistic

factors (a result of neglect, we don't know).

Your Allie sounds a lot like 's brother. The only thing he doesn't have

is seizures. He isn't with us but rather a friend of mine is adopting him.

We have had a behavioral neuro that has been wonderful about trying new

things but I think we have exhausted her vast knowledge and must move on. I'm

considering working with an attachment therapist but am concerned that they

don't know how to work with a 13 year old with limited speech and

understanding.

OK< now I " m babbling on.

Karyn

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-Hi ,

I am hoping to one day run a group home of some sort here. Think it

is a great place for indiv with special needs to live. Very

therapudic. Neat that you used to run a group home. It's been my

dream for a long time.

Take care,

Cheryl

mom to Angel and Allie

-- In @y..., KVanRyzin@a... wrote:

> In a message dated 8/8/2002 10:02:31 PM Central Daylight Time,

> @y... writes:

>

> <<

> Hi , this sounds a bit like a program they have here for kids

in

> grades 9 to 12. they call it 'work experience' but I think it

only

> runs for a one term out of the whole school year. I like the idea

of

> making it part of the reg daily curriculum for kids who need to

focus

> more on life skills vs academics. I have offered to have some of

the

> kids from the resource room come out to work at our farm this

year.

> I can't wait to have them come out to spend time here.

>

> Take care,

> Cheryl

> mom to Angel and Allie >>

> wow, that would be great. would love to go to a farm. We live

in

> Wisconsin so he sees a lot of them but he has this great desire to

go into

> barns. Don't quite understand that one.

> When I managed a group home the school district used it two days a

week to

> work on cleaning and cooking. They also used a family home for the

same

> purpose. The district now rents and apt. for this purpose. They

have also

> used to for a couple of guys with ds who were working on staying

alone

> overnight before renting their own apt. together. They got

to " live " there

> for short periods of time.

> Our district also has kids working at a hotel learning to clean

hotel rooms.

> They also do some work at a few retail stores.

> Unfortunately this isn't followed through much once school is no

longer

> involved.

>

> Karyn

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Guest guest

Hi ,

Wow, how did end up waiting that long to be adopted? Did you

adopt from the States? It sure does sound like our kids are

alot alike. How old is 's brother who is being adopted? It

sure is incredible to realize the effects neglect can have on a

child. I think the hard part of this is feeling very alone with it

within the medical profession. It is so very new to the medical

community and there is no way of really knowing what has happened to

their brains or what the long term effects may be on their bodies,

their brains and their souls. That is part of the reason we decided

to adopt a child with DS. We knew there was tons of research out

there and lots of supports as well. It has taken us 11 years to

finally have someone say she has ASD. Everyone was telling us to

wait and see as she may just recover totally from everything, etc.

Finally our psychiatrist told us that if she this was solely the

result of the neglect she should have lost most of the autistic

behavior etc, As this was not the case the psych said that it was

obviously a combo of both environmental and biological

circumstances. Thus the diagnosis of ASD. Sure glad to finally have

someone see the light and help us out. I did hire an attachment

therapist for a few sessions. Ended up feeling like she was really

just there for me to cry to, for a rate of $70per hour. Found a

pyschologist that I could do the same with and he was free so

switchws to working with him instead. I took a 4 day workshop on

PTSD and attachment disorders a few years ago. That was of the most

help to me. I do here there is a very good Attachment therapist in

Seattle, Debra Gray. She comes very highly recommended.

Thanks for sharing with us. I was awesome to see your post and see

that you understand this issue so well.

Take care,

Cheryl

mom to Angel and Allie

> Cheryl,

> I certainly can empathize on this one. We adopted . He came to

us at 8

> 1/2. Then he had heart surgery two months late. The neglect and

abuse issues

> including attachment issues and I believe PTSD are things that no

one seemed

> to consider. Of course, trying to take all the info and apply it to

a kid

> with ds and all his medical issues was not something anyone has the

> experience to understand. Add to that the fact that he has many

autistic

> factors (a result of neglect, we don't know).

> Your Allie sounds a lot like 's brother. The only thing he

doesn't have

> is seizures. He isn't with us but rather a friend of mine is

adopting him.

> We have had a behavioral neuro that has been wonderful about trying

new

> things but I think we have exhausted her vast knowledge and must

move on. I'm

> considering working with an attachment therapist but am concerned

that they

> don't know how to work with a 13 year old with limited speech and

> understanding.

> OK< now I " m babbling on.

>

> Karyn

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Guest guest

Hi Margaret,

Know what you mean. I had no probs with the DS diagnosis as we

adopted Angel as a baby and knew it ahead of time. But, the autism

diagnosis was a killer. Cried for a year straight I swear. Very

hard to watch these things occur to your child. A healthy dose of

denial is good sometimes. Allows you to take your time in dealing

with it all.

Cheryl

mom to Angel and Allie

> <<Along with the pdd-nos diagnosis Allie has also been diagnosed

with seizure

> disorder, tic disorder, adhd, and some attachment issues. I think

all of

> these

> other things really complicate it all when you are using

medications. cheryl>

> >

>

> Hi, Everyone.....Cheryl....sorry the Risperdal made the seizures

worse.

> Gareth has also had the 'Tourette's' diagnosis included in his

list of

> 'labels.' For yrs., I refused to accept the autism dx. because the

> Tourette's label was so much easier for me to accept. I had read

up on it

> and they said most kids outgrow it by their late teens. I could

live with

> that. The autism dx. took a while to settle in and

accept.

> Gail & Charlyne.....glad you guys had fun. Take

care,

> Everyone.

> Margaret

>

>

>

>

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Hi Marisa, Was Brook also on meds for the seizures while taking the

risperdal? This may be the difference as Allie doesn't currently

take seizure meds. Everyone was hoping that the partial seizures

might just simmer down as the complex seizures did once we stopped

the risperdone. No such luck. I am wondering if we can use

risperidone again if she is on seizure meds this time? (Joan, what

do you think?) We are going to have to start seizure meds anyway and

we need something that works as good as risperidone for certain.

Allie is also using paxil. She was using it at the same time as the

risperdone as they figured she needed to have both for some reason.

She did use Zoloft before but it didn't help at all. How did Brook

do one these? Thanks for sharing this information with me. It is

great to know that Brook does well on the resperidone along with his

seizure meds. Oh, and yes, I understand water obsessions. Angel

showers so many times a day. If she gets the chance she is in there

stripping naked and stimming in the shower til the hot water tank is

empty, three or four times a day. And then she fills the tub and

plays in it till she gets too cold. We have huge hydro bills. And

the water bill is atrocious! I guess I should be happy that she

can't turn on the bathroom tap by herself as it is too hard to pull

out. Sometimes a little dependancy is a good thing!

Thanks again,

Cheryl, mom to Angel and Allie

> Hi Cheryl,

> Sorry it has taken me a while to get back to you on the

Risperdal

> article. My son Brook also has a seizure disorder and his

neurologist said

> that the Risperdal would be okay to take. I'm really sorry that it

caused

> more seizures for Allie. I read the full article and increased

seizures is

> not mentioned. The observation period was limited to 8 weeks,

however, a

> majority of the children continued to show positive results at 6

months. The

> main adverse events observed in the study were weight gain,

increased

> appetite, fatigue, drowsiness, drooling, tremor, and constipation.

We have

> seen all of these except the tremor. The article doesn't compare

risperidone

> to other meds. What medication does Allie take for her seizures?

Brook is

> currently taking Lamictal, which has been working very well for

him. What

> other meds have you tried to help with the behavior problems? We

tried

> Zoloft and Paxil before trying Risperdal.

> We didn't really need it for serious behavior problems, what we

have is a

> boy with a serious water obsession. It has helped tremendously

with that

> problem which was huge for us. We can now leave the bathroom door

unlocked!!

> Previous to the Risperdal, Brook would be flooding the bathroom at

any and

> every opportunity. I really hope you can find another med that will

help

> Allie with the picking and biting.

> I found this article on Medscape regarding seizures and

anticonvulsants,

> that can cause seizures. I don't know if it will be helpful to

you, but I

> found it interesting. If you aren't a member of Medscape it is

very easy to

> join, just sign up, it's free.

> <A HREF= " http://www.medscape.com/viewarticle/431546_4 " >Click here:

http://www.medscape.com/viewarticle/431546_4</A>

>

> Marisa

> Mom to Miles 15, Brook 12 and Genevieve 4

>

>

>

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