New Member

Report post · December 23, 2003

Hi Missy,

You are right. I can't keep her out of school because of this, but I fear that with her placement (inclusion) any further incidents like we had at school before she left for the holidays, will be a sure way to get her kicked out. I need to work on this before we get back to school.

Thanks for the ideas. I will see what I can find out.

Bj

RE: new member

BJ:

We have poop issues here, too, although not quite to the extent you're seeing.

Have you tried cognitive behavior therapy with your daughter? Are you near any pediatric psychologists who could work with you on this? FBA's at school are usually worthless -- they're afraid to document things for fear they'll be viewed as "mistakes." If you're not satisfied with school's FBA, ask for an IEE. That was very helpful for us.

Your daughter is definitely a candidate for specific social skills training. She's figuring things out on her own (i.e. the throwing up on people), but she needs to be taught more appropriate ways to get someone's attention. We've been through that, too. Our daughter wouldn't express her feelings. When she started saying, "I'm angry," we were all elated and she got the response/recognition she wanted over a situation. After a while, we weren't as animated in our response, so one day she was angry and said she was going to take a knife and cut her big sister (she was about 8 at the time). Well, that got the same reaction from us that she got when she first started saying, "I'm angry." What she wanted was for us to take her seriously and attend to what was making her angry.

Has school collected any ABC data re: the tantrums (antecedent, behavior, consequence)? Does school have behavior specialists on staff? If not, ask them to retain one to help develop a behavior plan to decrease negative behaviors and increase positive behaviors. Keeping her out of school isn't a good idea -- it's denying her educational benefit because school isn't doing their job properly. (I'm a parent advocate -- can you tell?)

I hope this has helped.

Missy

-----Original Message-----From: Bj Artworks [mailto:bjartworks@...] Sent: Friday, December 19, 2003 3:44 AMautism Subject: new member

Hi all,

I found your list a couple days ago, and hope that someone has some ideas for us. I have a 12 yo daughter with autism...some say "moderate", some say "severe". Right now, her behavior is causing problems not only in our home, but school. She has a history of attention-getting behaviors (in an attempt to socialize with others)...including throwing, kicking, slapping and spitting and throwing up at other people to see their reaction or to be able to interact with them (saying "I'm sorry"). We asked for a functional behavioral analysis at school last year, and the result was vague...other than social attention, the only other thing that was consistent was that she "acted out" more at a certain time during the day, resulting in an assumption that she needed extra food (a snack) in the mornings. The addition of a morning snack at school resulted in a reduction of behaviors.

During this past summer, we began putting her on a strict diet...gluten, casein and sugar free...and when going back to school in September, she was fairly calm...no aggression towards other kids...the only thing now was food obsessions. She grabbed other kids food, and then started grabbing stuff off the ground that she found. A DAN Dr. suggested herbal treatment for fungus and cleansing the bowels. She began to have poop accidents at school as the stools began to soften up. A few weeks ago we decided to do some further testing...we decided to test her stools for fungus overgrowth since she tends to have a bloated stomach and constipation most of the time. The guidelines for the Great Plains Lab test stated to take her off any herbal or medication treatments for a week before collecting the stool samples. Finally, last week we were able to collect a sample. In the meantime, she has begun to have screaming tantrums and has begun to pick poop out of herself...and share it with others around her. I have decided to keep her out of school for a while because there was also an incident at school. Even though we have put her back on the herbs to soften the stools, she is still picking herself, and has adopted this new behavior.

I've gone through some of the "positive behavior management techniques" training, and understand that ignoring behaviors is one of the best ways to end or diminish/fade these behaviors...but it is not working well especially since this seems to be the last straw for my husband and older kids. Ok...and I am a bit stressed too.

Anyone else gone through this before? any ideas?

Thanks,

Bj

Report post · December 24, 2003

I'm 22 and from Cali (San Francisco). I don't have SMA but I do have another

form of MD. My screen name is DeTannous if you ever want to chat on AOL.

Deena

P.S. Merry Christmas everyone

Report post · December 24, 2003

Hi Terry,

I´m 26 years old female SMA II and from germany.

Kerstin

Report post · January 21, 2004

He supuesto que eres español por tu nombre. Me llamo y tengo una hija de 19 meses con escoliosis idiopática progresiva. Yo también me he incorporado a esta página hace unos días y ya he puesto algunas fotos de . Yo vivo en Albacete y a la está viendo el Dr. Sánchez Pérez Grueso en la Paz, en Madrid. Espero poder ver alguna foto de tu hijo también, y cuando quieras hablamos.

Un abrazo. -- [juliagon@...] -- ----- Mensaje Original ----- Remitente: "santiamor2002" santiamor2002@... Destinatario: infantile scoliosis treatment Fecha: Miércoles, Enero 21, 2004 4:17pm Asunto: new member Finally, I have found a group that I need. My 23 month baby boy was born with a rare muslce condition called Arthrogryposis. He has weakness throughout his entire body, no muscle mass. We operated on his feet and now will operate on a hernia. He does very well and will be walking in about 8 or 9 months. Two secondary conditions that often accompany Arthrogryposis are hernias and scoliosis. Well, he got them both. The scoliosis is lumbar and is now at 45 degrees. It is progressive. He went from wearing the charleston brace to the boston, which I don´t like it has compressed his ribs horribly and the lung capacity is very limited now. I have been in contact for over a year with the shriners in Utah, they are great. I have read all the stories about the alternative methods available and really would like to get some more advice from everyone out there. I am from Wyoming but now live in Alicante Spain. We travel to the states every summer and am planning on going to the Shriners in July. Any mom or dad out there who can give me some advice or help lead me in the direction I need, I would so appreciate. I am staying strong for Santiago, but my fears run so deep, and I am willing to do whatever is needed for this beautiful boy. Thank you and God bless all of you for creating this great sight.

Report post · March 5, 2004

Hi Tammy,

Thanks for joining the group.

My name is , and I have a 6yr old girl with severe infantile scoliosis. Currently, her curve is approx. 80 degrees.

For the last couple of years we have been using plaster to maintain her. I have a lot of experience with this so whatever questions you have, I hope I or someone else on the group can answer.

The group C.A.S.T. is really growing, and is a wealth of information for parents seeking out the best care for their children.

Where are you located? Can I ask the name of your doc..He/she sounds like they are familiar with progressive scoliosis and casts.

What is the degree of you sons curve(s)?

Have you checked out infantilescoliosis.com in its entirety?

What kind of scoliosis does your son have?

Plaster Casts can correct most non structural curves caught and treated early..They can maintain the curves of severe cases.

Keep those questions coming.

Sincerely,

Report post · March 28, 2004

Welcome Rishi,

Look forward to your contributions.

I also see you carry essential oils.

Do you carry gardenia absolute. If so which one. If not, do you know

anyone that has it where it is not some reconstitued something that is being

passed off as the real thing.

Thanks for your help,

Dorothy

Dorothy McCall, Cert. Aroma.

Kingsbury Fragrances

The Royal York

3955 Bigelow Blvd. Ste. 907

Pittsburgh, PA. 15213

(412) 687-2720

www.kingsburyfragrances.com

>

Report post · March 28, 2004

Just a quick " welcome to the group " !

in WI

new member

> Just a quick hello!

>

> Convert to body for life for 1 month now and already seeing a change!

> angela

>

Report post · March 31, 2004

Well, , welcome to the group. I am the grandmother of an 11 year old severely autistic grandson that I have been working with for 8 years. He is on Geodon, Straterra and Clonidine. He has started into puberty which seems to have created some behavior problems that have caused us to put him on the meds. Tell me how you got your son through puberty and how he is doing and what you are doing for him. This is a very caring group; I hope we can be of some encouragement. Pat K

Report post · March 31, 2004

Well, , welcome to the group. I am the grandmother of an 11 year old severely autistic grandson that I have been working with for 8 years. He is on Geodon, Straterra and Clonidine. He has started into puberty which seems to have created some behavior problems that have caused us to put him on the meds. Tell me how you got your son through puberty and how he is doing and what you are doing for him. This is a very caring group; I hope we can be of some encouragement. Pat K

Report post · April 1, 2004

,

Welcome!!!!!!!!!! I am JJ's mom. JJ is 16 now. Lois

new member

hi! i am a new member. i am the mother of an almost 17 year adolescent with severe autism, mental retardation, seizure disorder, traumatic brain injury from self injurious behaviors, OCD, ADD, anxiety, mood instability and sensory integration dysfunction.

NJ

Report post · April 1, 2004

,

Welcome!!!!!!!!!! I am JJ's mom. JJ is 16 now. Lois

new member

hi! i am a new member. i am the mother of an almost 17 year adolescent with severe autism, mental retardation, seizure disorder, traumatic brain injury from self injurious behaviors, OCD, ADD, anxiety, mood instability and sensory integration dysfunction.

NJ

Report post · April 2, 2004

, Welcome to the list. This is a great bunch of people who will always do their best to help whenever they can, with support or advice.

I have a 10 yo with nonverbal autism--severe to moderate--according to who is doing the talking or testing.

We recently had a bout with Evan's case worker from the Regional Center because she thinks we should put him in a group home. That has been one of our fears from the beginning, that someday but not TODAY we would have to put him someway because we could no longer keep him in safety. I was wondering just how you manage with a 17 yo? Is he a 'runner' and can you take him out into town to the store or restaurant? Evan's most injurious behavior is biting at his hand when he is frustrated. He does not bring blood or break the skin but his fingers are calloused where he is always chewing on them. Oh, Evan is also considered mentally retarded.

BETTY ANN-62 yo, possibly undx'd Bipolar Effexor, Buspar

grandma and guardian toANDREW - 12 yo-- Bipolar/ADHD, HomeschooledAdderall 30 mg, Abilify 20 mg, Zoloft 75 mg, EVAN - 10 yo-- nonverbal autismAbilify 20 mg 1x daily, 25 mg Trazodone, Risperdal 1 mgDAVID 7 yo Bipolar/ADHDAdderall 20 mg daily, 1 mg Risperdal 3 x daily, 50 mg Strattera

and mother to ANDREA -33 yo, their mom -Bipolar/ADHD, Topamax, Tegretol, Singular, Wellbutrin

wife to BOB - 72 yo, a very tired grandpa

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

From: ReRe759@...

hi! i am a new member. i am the mother of an almost 17 year adolescent with severe autism, mental retardation, seizure disorder, traumatic brain injury from self injurious behaviors, OCD, ADD, anxiety, mood instability and sensory integration dysfunction.

NJ

Report post · April 2, 2004

from Dale, Mom to Katy, CVID, age 19

Welcome to all our new members! This group is just a bunch of Moms who

started at the same place you are starting -- scared and not-knowing

which way is up! I remember when they first diagnosed my daughter 7

years ago -- I was thrilled to have a diagnosis because it had taken so

long to get it (2 years), but then everything I read sounded so terrible

and there were so many words in the medical books that I didn't know how

to interpret. I was SOOOO overwhelmed and my mind just automatically

picked up all the terrible things that " could " happen without

understanding what was " rare " and what was to be expected. Yep! Been

there, done that.

So, welcome to the group. The best ways to get answers is to say: " I

don't understand ...... can someone explain it? " and you'll get

Mommies to the rescue! No one on this group has " all " the answers - we

all work together. Some Moms find that they can print out the different

answers they get -- take it to their doctors and then have some real

questions to ask!

So.... yes, immunologlobulin therapy or IgG replacement or IVIG is all

the same thing.

The first thing I would like for all of you to do is to either go online

at www.primaryimmune.org or call 1-800-296-4433 and order free

literature from the Immune Deficiency Foundation to get you started on

your education. You need to ask for: The Family and Patient Handbook,

Our Immune System for kids, Physician's Primer. Also sign up for their

newsletter, register in their registry of new patients, and ask for a

peer contact -- someone you can call and talk to who has a similar

diagnosis in your local area. All of that is perfectly free. Oh, you

can also give them your pediatrician and immunologists name and address

and they will send them all the physians newsletters to keep them

informed of research and progress with PIDs.

I promise you that by participating with this group and letting us help

you figure out all the terminology and what to expect and with the

information from IDF you'll be the one sharing " helpful " information in

no time on this site! May God give you wisdom and courage and hope as

you begin this new journey!

In His service,

Dale Weatherford

Report post · April 3, 2004

Welcome !!!!!!!!!!!! I'm Robin & my daughter Whitney is 9. We live in Ms.

Report post · April 12, 2004

New Member

Hello out there!

We have a 7 year old son! He has not been diagnosed, we are just beginning to suspect that something is "different" and don't know where to begin!! To give a bit of history, Tourette's runs in our family. My mother and sister both have it. My son is not exhibiting any tics at this point, but definitely signs of ocd. Examples are: He has to wear his pants a certain way to cover his shoelaces, he has to put on his gloves before his jacket and make sure the sleeve covers the gloves to a certain point, he is so concerned with his hairdo everymorning and checks himself in the mirror all the times, he has to have his toast a certain way, he is very impulsive and will not take no for an answer, does not sleep well, is always asking a million questions regarding the same topic, and the latest is he is really exhibiting innapropriate behavior and cannot seem to control it. He uses innapropriate language and says "mom, I don't know why I said that". He is also very intense about "sex" and what he is learning. Other parents have called me to tell me about innapropriate behavior during playdates. How does one know what is "normal" behavior and what is NOT? Where do we begin?

Report post · April 12, 2004

Thanks so much for your advice. We live in Amherst, Massachusetts! We'd love to know some names of therapists.

Re: Fw: New Member

Hello "cuchdave.ma",

Welcome to the list. I am the mother of a 7-year-old girl who has OCD and I do recognize many of the things you write about your son from my own child's behavior. You are right that it's not always plain what is normal behavior and what isn't, but OCD compulsions are anxiety-driven which can give a clue. Given the family history and the fact that some of his behavior is causing him problems, an evaluation by a psychiatrist would probably be very helpful at this point. Unfortunately, untreated OCD and TS tend to worsen over time but can be effectively treated with therapy and/or medication.

If you let us know where you live, someone may be able to suggest a good doctor or therapist for you to see.

Kathy R in Indiana

From: cuchdave.ma

-owner

We have a 7 year old son! He has not been diagnosed, we are just beginning to suspect that something is "different" and don't know where to begin!! To give a bit of history, Tourette's runs in our family. My mother and sister both have it. My son is not exhibiting any tics at this point, but definitely signs of ocd. Examples are: He has to wear his pants a certain way to cover his shoelaces, he has to put on his gloves before his jacket and make sure the sleeve covers the gloves to a certain point, he is so concerned with his hairdo everymorning and checks himself in the mirror all the times, he has to have his toast a certain way, he is very impulsive and will not take no for an answer, does not sleep well, is always asking a million questions regarding the same topic, and the latest is he is really exhibiting innapropriate behavior and cannot seem to control it. He uses innapropriate language and says "mom, I don't know why I said that". He is also very intense about "sex" and what he is learning. Other parents have called me to tell me about innapropriate behavior during playdates. How does one know what is "normal" behavior and what is NOT? Where do we begin? You may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD-subscribe . You may access the files, bookmarks, and archives for our list at . Our list advisors are Tamar Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy , and Jackie Stout. Subscription issues or suggestions may be addressed to Louis Harkins, list owner, at harkins@... .

Report post · April 12, 2004

Hi

Sounds like you have quite a challenge on your hands. Is your child living at home? How are YOU doing?

Penny

~Accept what nature provides and celebrate the differences~

April is Autism Awareness Month

Quoted from a person with Aspergers - "We're fine if you put us into the right environment. But when the person and the environment don't match, we seem disabled" - Newsweek, Sept. 8, 2003

-----Original Message-----From: ReRe759@... [mailto:ReRe759@...]Sent: Tuesday, March 30, 2004 10:38 PMautism Subject: new member

hi! i am a new member. i am the mother of an almost 17 year adolescent with severe autism, mental retardation, seizure disorder, traumatic brain injury from self injurious behaviors, OCD, ADD, anxiety, mood instability and sensory integration dysfunction.

NJ

Report post · April 20, 2004

JM:

Welcome!

This is a WONDERFUL group of people, some live BFL and others have

just started. There is so much information, I couldn't possibly put

it into one post. Watch, read and ASK QUESTIONS! That is the best

way to learn all about BFL.

My one recomendation is to stay active in the BFL communities. This

is a life change and living it, reading it and talking about it every

day makes all the difference in the world. I completed my first

challenge in Sept. 2003 with incredible results. At that point, I

figured " I have this handled. " Well, it is so hard to do this alone

and believe me I tried. I am back and more motivated than ever, for

me body for life womens club is my daily kick in the pants.

Congratulations on finishing 6 weeks, stay strong.

Brett in Idaho

> HI EVERYONE.. THIS IS MY FIRST TIME POSTING AND MY FIRST TIME FOR

> BFL.I AM ON MY 6 TH. WEEK..I AM 53 YEARS OLD AND HAVE OVER 100 LBS.

> TO LOOSE..AS OF 3/02/04 I HAVE LOST 20 LBS..ALL OF THIS IS NEW TO

ME

> AND I WAS WONDERING IF THERE IS ANYONE OUT THERE IN BFL LAND WHO

> COULD OFFER ME SOME TIPS..I HAVE BEEN FOLLOWING THE EFL COOK BOOK

> AND I HAVE BEEN READING ALOT ABOUT BFL AND I FEEL LIKE AT TIMES

THAT

> I MAY JUST BE CONFUSING MYSELF..I WANT TO DO THE PROGRAM RIGHT AND

> COMPLETE MY GOAL..

>

> THANKS FOR YOU TIME,

> JM

Report post · June 2, 2004

Welcome to the group!

My name is and I am a SAHM to 6 boys ranging in age from 1 year old to 17 years old.

I have hypothyroidism.mitral valve prolapse,menieres disease,and a few other misc. illnesses.Some still undiagnosed.

I am glad that you joined us! I look forward to getting to know you.

-- new member

Hey all. I've been "lurking" for a bit. I've been reading posts and even responding to some and then realized that I have not introduced myself!

My name is Tabi. I'm 29 and have 3 kiddos; ages 9, 5, and 4. I have fibromyalgia, TMJ, Meniere's, OCD, depression, and an eating disorder. Goodness -- sounds like enough, huh? I try to keep a good sense of humor about me and am slowly realizing my boundaries of what I can and cannot do as well as what I can and cannot eat.

Anyway - just wanted to give a little shout out and introduce me!

Hope everyone has a good day and take good care of yourselves.

Tabi

"Stick to your Commitment" 1Cor 15:58

"Without wavering, let us hold our grip on the hope we profess..." Heb. 10:23.~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

Report post · June 12, 2004

Hi Bonnie and welcome!

Have you discussed the possibility of using Cimitedine with your doctor? It

is thought to be fairly benign and there are a lot of kids on the site who

have had great success with it minimizing or, in some cases, eliminating the

episodes altogether.

Rosemarie

Mom to Danny age 10

Denver, CO

Report post · June 12, 2004

Hi Bonnie and welcome!

Have you discussed the possibility of using Cimitedine with your doctor? It

is thought to be fairly benign and there are a lot of kids on the site who

have had great success with it minimizing or, in some cases, eliminating the

episodes altogether.

Rosemarie

Mom to Danny age 10

Denver, CO

Report post · June 17, 2004

Hi Lori and welcome! I'm new too! Determination is everything! I

use fitday also. It helps keep track of grams and stuff. Is there a

way to make fitday foods publicly viewable?

Sparkles

> Hi everyone,

>

> I just started BFL on Monday. So far so good. I'm cooking a lot

from the EFL cookbook and that has helped me tremendously. Do any of

you post what you eat each day? Sometimes it's helpful for me to see

what others are doing. I track everything in FitDay even though I

know we don't have to count calories or anything. It just keeps me

honest and allows me to see where I may need to tweak some things. I

weighed 207 on Monday and my body fat percentage is either 41.1% or

36% depending on which method was used. So, as you can see...I have

a long way to go. I'm determined though. There are too many things

I want to do and I'm tired of letting my weight get in the way.

>

> Looking forward to getting to know all of you!

>

Report post · June 18, 2004

Hi Sparkles! I know you can make your journal public but I don't think you can

make anything else public. I've been posting what I eat everyday to the lists

and forums I belong to. It keeps me honest. I love to see what other people

are eating too.

Lori

Re: New Member