Introduction

[Guest guest]

Hi, Shanna. Welcome to the group. This is a wonderful way to get the

support and understanding you will need for helping your son. I have two

daughters

with OCD-- is ten and was diagnosed at seven. Hannah is twelve and was

diagnosed just over a year ago. My husband is a little behind in his

understanding too--it helps when I am able to give him books and other materials

to

read so he can see that I am not making it up! Good luck with your appointment

and remember, as long as you've got e-mail, you are never alone! Feel free to

vent anytime. Kelley in NV

[Guest guest]

Hi Shanna and welcome to the group. (((Hugs))) I'm sorry you are having to deal

with the diagnosis and treatment of your son by yourself. Around the time of

diagnosis, before treatment has begun has got to be one of the roughest times in

dealing with OCD. Usually the family has been in distress for some time at that

point, yet effective treatment has yet to begin. OCD is a very treatable

disorder, you don't say how it has been affecting your son but better days are

on their way.

I don't know if it will help, but please know that one parent being in denial

longer than the other is a fairly common situation when a child is found to have

OCD. Perhaps your husband has his own struggles with anxiety and finds this

whole business a little too close for comfort? If so, that's also not too

uncommon.

You may find also that various other family members, teachers, friends and so on

may also deny that your child has OCD or any disorder, at least for awhile. I

think often this is due to loving your child and not wanting to believe that

anything may be wrong. You may hear remarks and helpful advice such as your son

just needs a firmer hand and limits, rather than a diagnosis and treatment.

It's true there are helpful, and less helpful ways to parent a child with OCD,

but the disorder cannot be caused by lax parenting or any other parenting style.

It is a biochemical brain disorder.

Has your son been doing Exposure and Response Prevention therapy with the

therapist? This is the one type of therapy (a part of Cognitive Behavior

Therapy) that has been proved effective in reducing and eliminating OCD

symptoms. This type of therapy is the first recommended treatment for children

with OCD. Some kids also take SSRI antidepressants, as my daughter does. The

combo of therapy plus medication is probably the quickest route to relief of OCD

symptoms. Some kids are able to reduce or stop their SSRI following successful

CBT/ERP.

Will your husband consider going with you to the psychiatrist appointment on

Wednesday? Sometimes hearing the facts of the situation from an expert can go a

long way to dispel a parent's denial about their child's symptoms. He would

also be able to ask questions to better understand any treatment that the doctor

suggests for your son. I know my husband was better able to " hear " what the

doctor said over what I was reporting secondhand from assessment and therapy

sessions.

Let us know how things go.

Take care, again welcome,

Kathy R. in Indiana

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

From: speedygoode

Hi,

Mu name is Shanna and my son is 11 years old and is in the process of

being diagnosed with OCD. I feel very alone. My husband is in

denial and so it is creating a lot of stress in our marraige. I've

been taking our son to a therapist for a couple of months now. We

see a psychiatrist on Wed. for an evaluation for medication. I guess

I just wanted to introduce myself and see if I can gain some comfort

by communicating with other parents who are haveing similar struggles.

[Guest guest]

Hi Shanna, welcome!

This is a great group to join, you'll find lots of support and

empathy here! I'm a single mom and had the burden of my now 14.5 yr

old son on me alone so can imagine what it's like with an

unsupportive spouse somewhat.

I have 2 more sons who would impatient with their OCD brother; then

we live with my mother who understands " nothing " about it. SIGH!

Plus, no one, even friends, can truly understand until you've " lived

it. "

Good for you for taking him to a therapist, even with dad in denial.

I'm sure this does place stress on you and your son though. Has dad

showed any interest in learning about OCD? Does he put all

the " problems " (OCD) down to something else?

You don't mention any particular OCD compulsions or obsessions. OCD

is so illogical, some things can be really bizarre while a lot of

people are more familiar with hearing about OCD regarding things like

excessive handwashing or fear of contamination/germs, repeating

things, counting, etc.

My son is now in 9th grade and age 14.5. His OCD hit what

seemed overnight way back at age 11.5 in 6th grade. He has had

compulsions he's had to do to keep something bad from happening to

him and also has to get a " just right " feeling. His OCD has

certainly changed his (and our) lives and affects him at home and at

school. Home is worse for a lot of kids as they can

sometimes " control " it more at school, not wanting others to see,

etc. Then they get home and can suddenly seem a lot worse, just not

holding back any longer; after all, home is a " safe place. "

This group has been the BEST support for me since this all began!

I'm sure you'll find the same true for you. Feel free to ask

questions, vent on those tough days, check out the FILES section for

some info....and have you visited the OCD Foundation website yet at

http://ocfoundation.org as it has lots of info on children and adults

and treatment.

Once my began having compulsions 24/7 in 6th grade and I

began learning more about OCD, I realized that he had always had

some " minor " OCD behaviors/compulsions, they just suddenly seemed to

turn extreme! Have you yet found this to be the case with your son?

- single mom, 3 sons; , 14.5 with OCD, dysgraphia and

HFA/Aspergers; -twin, typical but a handful; Randall 18, typical

but also 2 hands full! - hmmmm....they sometimes make OCD seem EASY

now that I think about it! -

> Hi,

> Mu name is Shanna and my son is 11 years old and is in the process

of

> being diagnosed with OCD. I feel very alone. My husband is in

> denial and so it is creating a lot of stress in our marraige. I've

> been taking our son to a therapist for a couple of months now. We

> see a psychiatrist on Wed. for an evaluation for medication. I

guess

> I just wanted to introduce myself and see if I can gain some

comfort

> by communicating with other parents who are haveing similar

struggles.

[Guest guest]

HI Shanna:

Welcome to the list! Hugs to you!

My husband and I also experienced marital and family stress when

learning how to deal with OCD in the family. I was not very

understanding of his denial and initial refusal to recognize the need to

get competent help for our son. When I attended a course for families

with mentally ill members put on by NAMI, I learned about this common

situation, everyone has a different timetable when it comes to this.

Then I started to appreciate that my dh was doing his very best to cope

at a tough time. I felt sorry for being so impatient with his slowness

(at that time) in coming to terms with the problem.

What helped was to go to the OC Foundation annual conference where he

learned about OCD from the experts. He even met another parent in his

profession and they could talk about that and OCD!

What kind of therapy has your son been receiving? Our son is doing very

well now after CBT and is on Effexor XR for his depression. It is

amazing what effective treatment can do to give us back our children

from the cruel grip of OCD. It can take some time and the effort can be

great, however the results are wonderful. Please keep posting about

your son's progress. Take care, aloha, Kathy (h)

kathy.hi@...

Introduction

Hi,

Mu name is Shanna and my son is 11 years old and is in the process of

being diagnosed with OCD. I feel very alone. My husband is in

denial and so it is creating a lot of stress in our marraige. I've

been taking our son to a therapist for a couple of months now. We

see a psychiatrist on Wed. for an evaluation for medication. I guess

I just wanted to introduce myself and see if I can gain some comfort

by communicating with other parents who are haveing similar struggles.

[Guest guest]

Hi ,

Welcome. I'm glad people are starting to use MB12 for respitory issues, sore

throats, etc.

I observe the same thing. A lessening of symptoms in just minutes. It's really

wonderful

for that.

There is an lyme-autism group that has a bright moderator who is very focused on

lyme.

It's http://health.groups.yahoo.com/group/lyme-autism/

Lyme is something that often requires long term antibiotics and it's important

to get up to

speed because our kids don't do well on certain antibiotics. You may want to

spend some

time in that group as well.

I personally would think about getting on Valtrex for at least 30 days and get

the healing

regression out of the way before the courses of antibiotics (in theroy) because

I think the

immune system will be in better shape after the Valtrex if works like we have

seen here in

the group. That's just a quick opinion. Talk to your doctor about this of

course.

Welcome and keep us posted.

- Stan

>

> Hi Stan and listmates,

>

> I've made a couple of posts I think but have not made an introduction. So

here goes.

My name is and I am the mother of six children and grandmother to one

beautiful

little girl. My oldest child, age 25, (mother of said granddaughter) is deaf,

the other

children are all hearing and my youngest child (son) age 5, is diagnosed

autistic and

recently tested positive to Lyme. We have been following the DAN! protocol

since

was 2 1/2 and have been gf/cf/sf/cf since then. takes all the usual

recommended

DAN! supplement including Mb12. We've also been chelating for a year, first with

TD-

DMPS then TD-DMSA. We've used the Mb12 shots for over 2 years now and have

seen

fabulous results with them. Prior to interventions my son was non-verbal, didn't

point,

limited fleeting eye contact but was very connected specifically to me, his

source of food

(nursed for 4 years).

>

> After starting Mb12 we saw first babbling then increased attempts at words to

today

when he is almost conversant. We've never had a really hard time with my son

taking the

shots. At first we had to hold him down but now he actually asks for them. He

knows

when day 3 comes around and says " I need a shot! " We asked our DAN! for the

MB12

nasal spray RX and were the first in his practice to get it. My son hates the

spray, I think it

is a sensory thing. He much prefers the shots, in fact has actually articulated

this to me..

" no spray, shot instead " I have seen improvements with the spray though in his

language.

Slightly more complex sentences and I think eye contact looks better.

>

> I tried the Mb12 on my 7 year old NT daughter who has been fighting a viral

respiratory

thing, mostly a nasty cough and within minutes of the nasal spray her coughing

disappears. She loves the spray. She says it makes her feel great.

>

> I tried it on myself, and I feel fantastic on it. I have more energy, have

clearer thinking

and just feel 'better'.

>

> I'm pretty sure all of my kids and myself could benefit from the Valtrex. We

all have the

soft signs and some of the hard signs too. That is my next thing to try.

>

> My son is also on the TD-LDN at full dose and that has been fabulous for him.

We've

seen big improvements on that.

>

>

>

> Defeat Autism Now!

> There is hope: www.generationrescue.org

>

[Guest guest]

pat, i know where you are at im that way with my son 14,who as autism the worse kind ocd,seizures mood swings and bad tantrums we are at the point of putting him somewhere cause we dont know what else to do for him.he want to cut a mole off of him the hospital didnt help us the could keep him because of other people but we have to deal with it we are scared of him and what he may do to himself as others and we dont know what to do.

Subject: IntroductionTo: AutismBehaviorProblems Date: Wednesday, August 13, 2008, 5:14 PM

Sorry this is so long.......Hi, My name is Pat..And from PA...I am themother of 8 children..3 of which are stepchildren. .I have a 13 yr oldthat was first diagnosed at the age of 4...At that time, theydiagnosed her with AD/HD, ODD, and OCD..over the years it has gottenworse..At about the age of 7, she had to be placed in Hershey MedicalCenter here in PA..There she was for 2 weeks and they seemed to gether meds figured out..But last May, she had to be placed again..Thistime in Kingston Child's Unit..She got so bad she was threatening tokill herself.I did research and discovered that she could also haveAsperger's Syndrome..So she was tested and diagnosed..There was somethings she talked about there but I didnt' know before then..So shespent a month there, they started new medicines on her and she camehome to return to the partials program for schooling..It has been ayear and things are going back to

what they was before..I am scaredfor her b/c I dont' know what else to do..They have just done anothercomplete Pyschological on her today at school and will hopefully knowthe results soon..The said we will see how she is in a month.. Fornow, she will return to the program, then we will discuss if she canbe mainstreamed. .. or as her counselor said, or sent to a more extremeprogram..She is my baby..I never had to go through this with any of myother children...I am scared and I don't know what to do..I dont' wantthem to place her, but at this point, I dont 'know what to do to helpher...Noone I know is dealing with this with their child..Alot of hermental has to do with is from a high lead level when she was little..Ijoined this group to hopefully find some sense of not being alone...Ithank you for allowing me...PAT

[Guest guest]

Hi Pat!

You mentioned a high lead level...was she ever chelated for this?

Heidi

-------------- Original message ----------------------

> Sorry this is so long.......Hi, My name is Pat..And from PA...I am the

> mother of 8 children..3 of which are stepchildren..I have a 13 yr old

> that was first diagnosed at the age of 4...At that time, they

> diagnosed her with AD/HD, ODD, and OCD..over the years it has gotten

> worse..At about the age of 7, she had to be placed in Hershey Medical

> Center here in PA..There she was for 2 weeks and they seemed to get

> her meds figured out..But last May, she had to be placed again..This

> time in Kingston Child's Unit..She got so bad she was threatening to

> kill herself.I did research and discovered that she could also have

> Asperger's Syndrome..So she was tested and diagnosed..There was some

> things she talked about there but I didnt' know before then..So she

> spent a month there, they started new medicines on her and she came

> home to return to the partials program for schooling..It has been a

> year and things are going back to what they was before..I am scared

> for her b/c I dont' know what else to do..They have just done another

> complete Pyschological on her today at school and will hopefully know

> the results soon..The said we will see how she is in a month.. For

> now, she will return to the program, then we will discuss if she can

> be mainstreamed... or as her counselor said, or sent to a more extreme

> program..She is my baby..I never had to go through this with any of my

> other children...I am scared and I don't know what to do..I dont' want

> them to place her, but at this point, I dont 'know what to do to help

> her...Noone I know is dealing with this with their child..Alot of her

> mental has to do with is from a high lead level when she was little..I

> joined this group to hopefully find some sense of not being alone...I

> thank you for allowing me...PAT

>

>

Sorry this is so long.......Hi, My name is Pat..And from PA...I am the

mother of 8 children..3 of which are stepchildren..I have a 13 yr old

that was first diagnosed at the age of 4...At that time, they

diagnosed her with AD/HD, ODD, and OCD..over the years it has gotten

worse..At about the age of 7, she had to be placed in Hershey Medical

Center here in PA..There she was for 2 weeks and they seemed to get

her meds figured out..But last May, she had to be placed again..This

time in Kingston Child's Unit..She got so bad she was threatening to

kill herself.I did research and discovered that she could also have

Asperger's Syndrome..So she was tested and diagnosed..There was some

things she talked about there but I didnt' know before then..So she

spent a month there, they started new medicines on her and she came

home to return to the partials program for schooling..It has been a

year and things are going back to what they was before..I am scared

for her b/c I dont' know what else to do..They have just done another

complete Pyschological on her today at school and will hopefully know

the results soon..The said we will see how she is in a month.. For

now, she will return to the program, then we will discuss if she can

be mainstreamed... or as her counselor said, or sent to a more extreme

program..She is my baby..I never had to go through this with any of my

other children...I am scared and I don't know what to do..I dont' want

them to place her, but at this point, I dont 'know what to do to help

her...Noone I know is dealing with this with their child..Alot of her

mental has to do with is from a high lead level when she was little..I

joined this group to hopefully find some sense of not being alone...I

thank you for allowing me...PAT

[Guest guest]

Hi Pat,I also have 8 children. My now 16 year old son was diagnosed

failure to thrive and developed a seizure disorder by 2yrs. He had

poor muscle tone also. The original thought by Dr.s was lead. He was

later diagnosed by a team of Dr.s as having alternating hemiplegia.

Much later, our neurologist diagnosed autism and then aspergers. He

went through a nuero- mental breakdown at 10yrs. He had a really

difficult time around age 13. He became distraught and suicidal. He

was placed in a juvinelle detention center for 30 days for his own

safety. It was a very emotional time for me. I felt

happy,sad,guilty,mad and hopeless. It had alot to do with his meds.

We made alot of trips to crisis centers and hospitals and there was

talk of him staying in house at a mental hospital. Its always a

really scarry thought, to have him placed or not. In conclusion the

meds got figured out and eventually things became do-able for him to

stay home. Alternating Hemiplegia had caused alot of his depression

symptoms and personality changes. It was hard to diagnose.

Mainstreaming is always a challenge. Anxiety tends to increase the

OCD and melt downs. We all need a panic button. We had a home

visiting counselor/therapist a few times a week. I felt better having

someone to " hear my struggle " . There will be many confusing times as

we learn to navigate the system and spectrum. I am right there with

you. My heart felt warmth goes out to you.

Tishanne

- In AutismBehaviorProblems ,

" queenscorpionbitch " wrote:

>

> Sorry this is so long.......Hi, My name is Pat..And from PA...I am

the

> mother of 8 children..3 of which are stepchildren..I have a 13 yr

old

> that was first diagnosed at the age of 4...At that time, they

> diagnosed her with AD/HD, ODD, and OCD..over the years it has gotten

> worse..At about the age of 7, she had to be placed in Hershey

Medical

> Center here in PA..There she was for 2 weeks and they seemed to get

> her meds figured out..But last May, she had to be placed again..This

> time in Kingston Child's Unit..She got so bad she was threatening to

> kill herself.I did research and discovered that she could also have

> Asperger's Syndrome..So she was tested and diagnosed..There was some

> things she talked about there but I didnt' know before then..So she

> spent a month there, they started new medicines on her and she came

> home to return to the partials program for schooling..It has been a

> year and things are going back to what they was before..I am scared

> for her b/c I dont' know what else to do..They have just done

another

> complete Pyschological on her today at school and will hopefully

know

> the results soon..The said we will see how she is in a month.. For

> now, she will return to the program, then we will discuss if she can

> be mainstreamed... or as her counselor said, or sent to a more

extreme

> program..She is my baby..I never had to go through this with any of

my

> other children...I am scared and I don't know what to do..I dont'

want

> them to place her, but at this point, I dont 'know what to do to

help

> her...Noone I know is dealing with this with their child..Alot of

her

> mental has to do with is from a high lead level when she was

little..I

> joined this group to hopefully find some sense of not being

alone...I

> thank you for allowing me...PAT

>

[Guest guest]

Hi Pat,

Know that you're not alone. Many of us are in your situation. I probably could have written almost the same extact email. We struggle some day's all day, and then other day's, it' ** almost feels normal.

I'm also in PA, in Macungie. If you need to talk, vent, etc one on one, don't hesitate to email me.

My youngest is 10 with Asperger's, IED, ODD, ADHD, TS, etc etc, we call it the Alphabet Soup syndrome

Our older boys are 27 ande 28, the 27 yr old also had ADHD, and Severe Tourette's, so this is our 2nd time down the hard road. But it hasn't made it any easier because each of these kids issues are so unique to handle

Sorry this is so long.......Hi, My name is Pat..And from PA...I am themother of 8 children..3 of which are stepchildren..I have a 13 yr oldthat was first diagnosed at the age of 4...At that time, theydiagnosed her with AD/HD, ODD, and OCD..over the years it has gottenworse..At about the age of 7, she had to be placed in Hershey MedicalCenter here in PA..There she was for 2 weeks and they seemed to gether meds figured out..But last May, she had to be placed again..Thistime in Kingston Child's Unit..She got so bad she was threatening tokill herself.I did research and discovered that she could also haveAsperger's Syndrome..So she was tested and diagnosed..There was somethings she talked about there but I didnt' know before then..So shespent a month there, they started new medicines on her and she camehome to return to the partials program for schooling..It has been ayear and things are going back to what they was before..I am scaredfor her b/c I dont' know what else to do..They have just done anothercomplete Pyschological on her today at school and will hopefully knowthe results soon..The said we will see how she is in a month.. Fornow, she will return to the program, then we will discuss if she canbe mainstreamed... or as her counselor said, or sent to a more extremeprogram..She is my baby..I never had to go through this with any of myother children...I am scared and I don't know what to do..I dont' wantthem to place her, but at this point, I dont 'know what to do to helpher...Noone I know is dealing with this with their child..Alot of hermental has to do with is from a high lead level when she was little..Ijoined this group to hopefully find some sense of not being alone...Ithank you for allowing me...PAT------------------------------------

[Guest guest]

pat, i know where you are at im that way with my son 14,who as autism the worse kind ocd,seizures mood swings and bad tantrums we are at the point of putting him somewhere cause we dont know what else to do for him.he want to cut a mole off of him the hospital didnt help us the could keep him because of other people but we have to deal with it we are scared of him and what he may do to himself as others and we dont know what to do.

Subject: IntroductionTo: AutismBehaviorProblems Date: Wednesday, August 13, 2008, 5:14 PM

Sorry this is so long.......Hi, My name is Pat..And from PA...I am themother of 8 children..3 of which are stepchildren. .I have a 13 yr oldthat was first diagnosed at the age of 4...At that time, theydiagnosed her with AD/HD, ODD, and OCD..over the years it has gottenworse..At about the age of 7, she had to be placed in Hershey MedicalCenter here in PA..There she was for 2 weeks and they seemed to gether meds figured out..But last May, she had to be placed again..Thistime in Kingston Child's Unit..She got so bad she was threatening tokill herself.I did research and discovered that she could also haveAsperger's Syndrome..So she was tested and diagnosed..There was somethings she talked about there but I didnt' know before then..So shespent a month there, they started new medicines on her and she camehome to return to the partials program for schooling..It has been ayear and things are going back to

what they was before..I am scaredfor her b/c I dont' know what else to do..They have just done anothercomplete Pyschological on her today at school and will hopefully knowthe results soon..The said we will see how she is in a month.. Fornow, she will return to the program, then we will discuss if she canbe mainstreamed. .. or as her counselor said, or sent to a more extremeprogram..She is my baby..I never had to go through this with any of myother children...I am scared and I don't know what to do..I dont' wantthem to place her, but at this point, I dont 'know what to do to helpher...Noone I know is dealing with this with their child..Alot of hermental has to do with is from a high lead level when she was little..Ijoined this group to hopefully find some sense of not being alone...Ithank you for allowing me...PAT

[Guest guest]

Hi and welcome to our group. you will really like it here. Everyone is so helpful. My name is Stacie and I live in IL. I am married to Jim and have 3 kids. Lexie will be 13 on the 15th of Nov., is 10 and has a tic disorder and she was just diagnosed with high functioning Autism and sensory integration in May. My son is 5 and he has a seizure disorder, Autism, sensory integration, visual processing, which he now has glasses for, and we are getting his hearing tested on the 11th, because we believe he has auditory processing as well. He is untestable to do a regular hearing test on him. Anyhow, I know what you mean about stress. It has been very hard for me lately. Especially in the last 4 weeks with things going on and even now, things are going on, like the teacher not getting back to me when I call, email, write letters in our notebook etc. I am talking about s teacher. He is in an Autism K class. I know what you mean and we are all here to support you and one another. Welcome to the group. I am glad you joined.

Stacie

Hello to everyone!

I just sent a message into the group and realized that no one has any clue who I am. LOL I have only just joined the group.

My name is and I live here in the UK with my husband (11 year anniversary just the other day). We have two children, Lizzy (4) and (6). is autistic and things have been really stressful lately. I'm sure that people in this group know what it's like so I don't assume that I am any worse off than anyone else. It just happened that it was a very bad week last week and I felt like it would be helpful to talk to others who are in the same boat.

Thanks for having me in your group.

Cheers,

Steph

P.S. Forgot to say that I am 41. Aaaaargh!!!!

Plan your next getaway with AOL Travel. Check out Today's Hot 5 Travel Deals!

[Guest guest]

...welcome, welcome. So pleased you are here.

Blessings....

e

--------------------------------------------------------------------------------To: AutismBehaviorProblems Sent: Thursday, October 30, 2008 1:46:31 PMSubject: Introduction

Hello, to everyone! I just sent a message into the group and realized that no one has any clue who I am. LOL I have only just joined the group. My name is and I live here in the UK with my husband (11 year anniversary just the other day). We have two children, Lizzy (4) and (6). is autistic and things have been really stressful lately. I'm sure that people in this group know what it's, like so I don't assume that I am any worse off than anyone else. It just happened that it was a very bad week last week, and I felt like it would be helpful to talk to others who are in the same boat. Thanks for having me in your group. Cheers, Steph P.S. Forgot to say that I am 41. Aaaaargh!!!!

[Guest guest]

Hi ,welcome. Thanks so much for your care and concern. Its

nice to know I am not alone. I am fighting the school to continue

homeschooling. Life is so much better,calmer at home without the

stress of school on my child. I wish we had autism services here and

in our schools. My child was mainstreamed with an iep.

Hugs and best wishes,

Tishanne

>

>

>

>

>

> Hello to everyone!

>

> I just sent a message into the group and realized that no one has

any clue

> who I am. LOL I have only just joined the group.

>

> My name is and I live here in the UK with my husband (11

year

> anniversary just the other day). We have two children, Lizzy (4)

and

> (6). is autistic and things have been really stressful

lately. I'm

> sure that people in this group know what it's like so I don't

assume that I

> am any worse off than anyone else. It just happened that it was a

very bad

> week last week and I felt like it would be helpful to talk to

others who are

> in the same boat.

>

> Thanks for having me in your group.

>

> Cheers,

>

> Steph

>

> P.S. Forgot to say that I am 41. Aaaaargh!!!!

>

[Guest guest]

Hi Steph - nice to meet you, where abouts in the UK are u? I'm in Hampshire.

Introduction

Hello to everyone!

I just sent a message into the group and realized that no one has any clue who I am. LOL I have only just joined the group.

My name is and I live here in the UK with my husband (11 year anniversary just the other day). We have two children, Lizzy (4) and (6). is autistic and things have been really stressful lately. I'm sure that people in this group know what it's like so I don't assume that I am any worse off than anyone else. It just happened that it was a very bad week last week and I felt like it would be helpful to talk to others who are in the same boat.

Thanks for having me in your group.

Cheers,

Steph

P.S. Forgot to say that I am 41. Aaaaargh!!!!

[Guest guest]

-- Re: Introduction

Hi Steph - nice to meet you, where abouts in the UK are u? I'm in Hampshire.

Introduction

Hello to everyone!

I just sent a message into the group and realized that no one has any clue who I am. LOL I have only just joined the group.

My name is and I live here in the UK with my husband (11 year anniversary just the other day). We have two children, Lizzy (4) and (6). is autistic and things have been really stressful lately. I'm sure that people in this group know what it's like so I don't assume that I am any worse off than anyone else. It just happened that it was a very bad week last week and I felt like it would be helpful to talk to others who are in the same boat.

Thanks for having me in your group.

Cheers,

Steph

P.S. Forgot to say that I am 41. Aaaaargh!!!!

[Guest guest]

Hi ,

I'm in Shropshire, not too far from the Welsh border. )

Steph

-- Re: Introduction

Hi Steph - nice to meet you, where abouts in the UK are u? I'm in Hampshire.

Introduction

Hello to everyone!

I just sent a message into the group and realized that no one has any clue who I am. LOL I have only just joined the group.

My name is and I live here in the UK with my husband (11 year anniversary just the other day). We have two children, Lizzy (4) and (6). is autistic and things have been really stressful lately. I'm sure that people in this group know what it's like so I don't assume that I am any worse off than anyone else. It just happened that it was a very bad week last week and I felt like it would be helpful to talk to others who are in the same boat.

Thanks for having me in your group.

Cheers,

Steph

P.S. Forgot to say that I am 41. Aaaaargh!!!!

[Guest guest]

Thanks, e. It's nice to be chatting with other people in the same boat. )

Steph

-- Introduction

Hello, to everyone! I just sent a message into the group and realized that no one has any clue who I am. LOL I have only just joined the group. My name is and I live here in the UK with my husband (11 year anniversary just the other day). We have two children, Lizzy (4) and (6). is autistic and things have been really stressful lately. I'm sure that people in this group know what it's, like so I don't assume that I am any worse off than anyone else. It just happened that it was a very bad week last week, and I felt like it would be helpful to talk to others who are in the same boat. Thanks for having me in your group. Cheers, Steph P.S. Forgot to say that I am 41. Aaaaargh!!!!

[Guest guest]

Thanks, Stacie! It's so nice to meet you. Sounds like you really have your hands full. In a way, I feel lucky because when my son achieves something, it is never taken for granted. It's just so exciting to see his progress even if it isn't always in leaps and bounds. I would imagine that outside of the stress, you probably also take great joy in those achievements.

Hugs,

Steph

-- Re: Introduction

Hi and welcome to our group. you will really like it here. Everyone is so helpful. My name is Stacie and I live in IL. I am married to Jim and have 3 kids. Lexie will be 13 on the 15th of Nov., is 10 and has a tic disorder and she was just diagnosed with high functioning Autism and sensory integration in May. My son is 5 and he has a seizure disorder, Autism, sensory integration, visual processing, which he now has glasses for, and we are getting his hearing tested on the 11th, because we believe he has auditory processing as well. He is untestable to do a regular hearing test on him. Anyhow, I know what you mean about stress. It has been very hard for me lately. Especially in the last 4 weeks with things going on and even now, things are going on, like the teacher not getting back to me when I call, email, write letters in our notebook etc. I am talking about s teacher. He is in an Autism K class. I know what you mean and we are all here to support you and one another. Welcome to the group. I am glad you joined.

Stacie

Hello to everyone!

I just sent a message into the group and realized that no one has any clue who I am. LOL I have only just joined the group.

My name is and I live here in the UK with my husband (11 year anniversary just the other day). We have two children, Lizzy (4) and (6). is autistic and things have been really stressful lately. I'm sure that people in this group know what it's like so I don't assume that I am any worse off than anyone else. It just happened that it was a very bad week last week and I felt like it would be helpful to talk to others who are in the same boat.

Thanks for having me in your group.

Cheers,

Steph

P.S. Forgot to say that I am 41. Aaaaargh!!!!

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[Guest guest]

Hi everyone! I am a new member to this group and wanted to introduce myself.

My name is Amy and I have 3 sons. Marley (5 yrs.) is my oldest, Brodie (3.5

yrs.) is my middle guy, and Cale (20 mos.) is my youngest. Matt is my wonderful

DH. We live in a suburb outside of Chicago.

Last week Cale woke with a croupy cough and wheezing. As the day progressed so

did his symptoms. After a terrible nap I headed to the Immediate Care Unit with

Cale. In order to rule out pneumonia, he was given a chest x-ray. I knew we

were heading towards a problem when the radiology tech asked if I had ever been

told that Cale had a S-shaped spine. Obviously we had not. I knew S-shaped

spine meant scoliosis, but was more focused on the issue at hand, to get Cale

breathing better. In an effort to get Cale's breathing under control, we were

transported to the ER. After a night in the PICU and finally giving him a

steroid for croup, he was able to breathe easier.

It was then that the doctors came to discuss scoliosis with us. The hospital

preformed a spine x-ray to confirm scoliosis. We don't know much more than that

right now. We are scheduled to see our pediatric orthopedic surgeon on June 1st

to learn more about what type of scoliosis Cale has. I have also submitted the

application to Shriners of Chicago after reading many of your stories (THANK YOU

).

As for some background on us...Cale was a full term, healthy 9 lb 2 oz big boy.

He has been a healthy baby, but looking back there are a few signs that now make

us wonder where the scoliosis originated. During my pregnancy I had to have a

level 2 u/s because they said they couldn't see the spine. The level 2 u/s, we

were told, was normal. We aren't sure whether that is a coincidence, a factor

indicating his position in the womb could be causal, or a sign of possible

congenital scoliosis. In addition, when Cale started walking we alerted his

pediatrician to his odd gait and that his right foot turned out more than

normal. His ped. felt it was within normal limits. He has experienced pain in

both hips and his shoulder. In fact we had x-rays of both areas taken and those

also appeared to be normal. I am anxious for an official diagnosis of the type

of scoliosis and a plan in place. The not knowing and wondering is very hard.

Any advice for the novice on this journey? Anything you wish you would have

known when you started out? I look forward to getting to know all of you and

thank you in advance for all the support I know you will provide.

Amy

[Guest guest]

AmyWelcome, you are not alone and have to the right place. First things first:-Do you know the COBB angle or RVAD angle of the curvature. If not any good orthopedist can measure those. If they don't know what an RVAD angle is, walk out. They don't enough.-You must get an MRI ASAP to rule out a tethered spinal cord. This could be causing the scoliosis and it must be surgically untethered before any EDF casting could take place.  If it is tethered the scoliosis could resolve on it's own.-Your son is already 20 months old, so if it is IDIOPATHIC you need to get him into a EDF cast from a Mehta trained doc ASAP.  Shriner's Chicago is one of these hospitals, and a good place to do it, but you will need to be politely pushy to get him a casting date because under 24

months old is when the child's spine does most of it's growing, which you'll want to harness. If it's congenital there are other options (mostly involving surgery) and you should contact Hyatt at www.infantilescoliosis.org for advice.Those are the major things you'll want to do. Again, if it's idiopathic, casting is the most successful non-surgical option, as it can actually CORRECT the curvature rather than just hold it as braces do.  I'm sure others will offer advice too. We were exactly where you are in January and our son is in 2nd cast and doing great.Best of luck,Nick (father of Bexon, 23 months old in 2nd cast from SLC)From: a_abrew

Subject: IntroductionTo: infantile_scoliosis Date: Saturday, May 23, 2009, 2:53 PM

Hi everyone! I am a new member to this group and wanted to introduce myself. My name is Amy and I have 3 sons. Marley (5 yrs.) is my oldest, Brodie (3.5 yrs.) is my middle guy, and Cale (20 mos.) is my youngest. Matt is my wonderful DH. We live in a suburb outside of Chicago.

Last week Cale woke with a croupy cough and wheezing. As the day progressed so did his symptoms. After a terrible nap I headed to the Immediate Care Unit with Cale. In order to rule out pneumonia, he was given a chest x-ray. I knew we were heading towards a problem when the radiology tech asked if I had ever been told that Cale had a S-shaped spine. Obviously we had not. I knew S-shaped spine meant scoliosis, but was more focused on the issue at hand, to get Cale breathing better. In an effort to get Cale's breathing under control, we were transported to the ER. After a night in the PICU and finally giving him a steroid for croup, he was able to breathe easier.

It was then that the doctors came to discuss scoliosis with us. The hospital preformed a spine x-ray to confirm scoliosis. We don't know much more than that right now. We are scheduled to see our pediatric orthopedic surgeon on June 1st to learn more about what type of scoliosis Cale has. I have also submitted the application to Shriners of Chicago after reading many of your stories (THANK YOU ).

As for some background on us...Cale was a full term, healthy 9 lb 2 oz big boy. He has been a healthy baby, but looking back there are a few signs that now make us wonder where the scoliosis originated. During my pregnancy I had to have a level 2 u/s because they said they couldn't see the spine. The level 2 u/s, we were told, was normal. We aren't sure whether that is a coincidence, a factor indicating his position in the womb could be causal, or a sign of possible congenital scoliosis. In addition, when Cale started walking we alerted his pediatrician to his odd gait and that his right foot turned out more than normal. His ped. felt it was within normal limits. He has experienced pain in both hips and his shoulder. In fact we had x-rays of both areas taken and those also appeared to be normal. I am anxious for an official diagnosis of the type of scoliosis and a plan in place. The not knowing and wondering is very hard.

Any advice for the novice on this journey? Anything you wish you would have known when you started out? I look forward to getting to know all of you and thank you in advance for all the support I know you will provide.

Amy