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Hi Amber,

Welcome to the group!

Has he ever tried Tilade or Intal?

Has he ever tried a few weeks of no dairy or wheat?

Alana

>

> Hello all, my name is Amber, I am momma to Noah, Gracie, Emma and

> Caleb. The first three have asthma to some degree. Emma only in

> reaction to allergens such as hay. Gracie, we just recently adopted

> and are just getting started on this path. She has many congenital

> anomalies, including a major heart defect. Noah, is who brought me

> here. He is 7 yr soon to be 8, he is extremely active and has

always

> been our smallest child. Although he had the largest birth wt. soon

> after he seemed to thin out an stay that way. He was diagnosed with

> asthma at the age of 4, starting with an Albuterol inhaler, which

> brought no relief. Over the last couple of years we feel like we

have

> lived at the Pediatricians office. They switched him to a daily

> inhaler, Flovent and Xopenex Q 4 PRN. In the past year he had

> bacterial pneumonia twice and after the second bout we were

referred

> to a ped pulm. He was sweat tested for Cystic Fibrosis, results

were

> border line. He was DNA tested almost 3 weeks ago and the results

are

> not yet in. He was also allergy tested and we have made changes in

> our home to accomodate those. He has been put on quite a few

meds. :

> Symbicort, Singulair, Clarinex, Prevacid, and Xopenex. He also has

an

> emergency inhaler, which does not offer much relief. I'm a bit

> concerned. Even after starting these meds he is having " flare ups "

> monthly. Is it typical to take some time to get the

right " cocktail "

> of meds to make a difference. He also has nasal polyps, any of your

> thoughts would be much appreciated. Thanks! amber

>

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I also wonder is he taking cromolyn nasal spray.

Alana

>

>

> Hi Amber,

>

>

> Welcome to the group!

>

>

> Has he ever tried Tilade or Intal?

>

> Has he ever tried a few weeks of no dairy or wheat?

>

>

>

> Alana

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Guest guest

-He has not tried the meds, he does not eat dairy as he is

intolerant, I've not with held wheat.

>

>

> Hi Amber,

>

>

> Welcome to the group!

>

>

> Has he ever tried Tilade or Intal?

>

> Has he ever tried a few weeks of no dairy or wheat?

>

>

>

> Alana

>

>

>

>

>

>

>

>

>

> >

> > Hello all, my name is Amber, I am momma to Noah, Gracie, Emma and

> > Caleb. The first three have asthma to some degree. Emma only in

> > reaction to allergens such as hay. Gracie, we just recently

adopted

> > and are just getting started on this path. She has many

congenital

> > anomalies, including a major heart defect. Noah, is who brought

me

> > here. He is 7 yr soon to be 8, he is extremely active and has

> always

> > been our smallest child. Although he had the largest birth wt.

soon

> > after he seemed to thin out an stay that way. He was diagnosed

with

> > asthma at the age of 4, starting with an Albuterol inhaler, which

> > brought no relief. Over the last couple of years we feel like we

> have

> > lived at the Pediatricians office. They switched him to a daily

> > inhaler, Flovent and Xopenex Q 4 PRN. In the past year he had

> > bacterial pneumonia twice and after the second bout we were

> referred

> > to a ped pulm. He was sweat tested for Cystic Fibrosis, results

> were

> > border line. He was DNA tested almost 3 weeks ago and the results

> are

> > not yet in. He was also allergy tested and we have made changes

in

> > our home to accomodate those. He has been put on quite a few

> meds. :

> > Symbicort, Singulair, Clarinex, Prevacid, and Xopenex. He also

has

> an

> > emergency inhaler, which does not offer much relief. I'm a bit

> > concerned. Even after starting these meds he is having " flare

ups "

> > monthly. Is it typical to take some time to get the

> right " cocktail "

> > of meds to make a difference. He also has nasal polyps, any of

your

> > thoughts would be much appreciated. Thanks! amber

> >

>

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Guest guest

Hi Amber,

Welcome to the group! It sounds like you have a very full plate with

your children's health issues. My three kids and I all have asthma and

allergies, . One has pretty bad asthma, chronic sinusitis, GERD, and

some immune issues, and the other two fortunately have very mild asthma.

One also has a severe peanut allergy and they all have pollen allergies.

We have struggled to find the best treatment to keep the sick one doing

his best. It has taken lots of persistence with doctors, medications,

and tests.

It sounds like you are doing all the right things as you complete tests

and try to find what will help your son. Getting back the test results

for the cystic fibrosis should be helpful, because if he does have it,

the doctors can change his treatment plan to include medicine for that.

Typically, cystic fibrosis patients have very thick sticky mucous and

lots of respiratory infections and also need some enzymes to help digest

their food.

It does take some time to work out the right medication combo. The

doctors also have to search for things that might make the asthma more

difficult to treat, such as acid reflux, sinus infections, immune

problems, allergies, etc. It sounds like they are doing so, and

hopefully you will have more answers soon. It definitely helps to see

specialists when the asthma is difficult to treat.

It looks like he is on most of the standard meds, but you might try

different antihistamines and experiment to see if another is more

helpful than the Clarinex in controlling his allergies (like Zyrtec,

Xyzal, Allegra, etc), in addition to all the necessary allergy-proofing

at home. Also, I did not see Nasonex listed. It is a nasal steroid

spray that can be used to help shrink nasal polyps, so you might ask the

doctor about it. Polyps are common in cystic fibrosis patients and also

in people with aspirin allergy (called triad asthma-aspirin allergy,

nasal polyps and asthma). Polyps are somewhat unusual in children so

young, but are common in children with cystic fibrosis, so that may have

pointed the doctors to look hard to see if your son has it. You might

also see if the doctors have ruled out any immune issues. We discovered

that was a complicating factor in my son's case that had not occured to

his regular doctor, until an asthma specialist figured it out.

I hope you are able to find answers for your son and send you good

wishes as you take care of all other kids too! (And yourself!) We are

all here with support and sympathy as you deal with it all.

Best wishes,

>

> Hello all, my name is Amber, I am momma to Noah, Gracie, Emma and

> Caleb. The first three have asthma to some degree. Emma only in

> reaction to allergens such as hay. Gracie, we just recently adopted

> and are just getting started on this path. She has many congenital

> anomalies, including a major heart defect. Noah, is who brought me

> here. He is 7 yr soon to be 8, he is extremely active and has always

> been our smallest child. Although he had the largest birth wt. soon

> after he seemed to thin out an stay that way. He was diagnosed with

> asthma at the age of 4, starting with an Albuterol inhaler, which

> brought no relief. Over the last couple of years we feel like we have

> lived at the Pediatricians office. They switched him to a daily

> inhaler, Flovent and Xopenex Q 4 PRN. In the past year he had

> bacterial pneumonia twice and after the second bout we were referred

> to a ped pulm. He was sweat tested for Cystic Fibrosis, results were

> border line. He was DNA tested almost 3 weeks ago and the results are

> not yet in. He was also allergy tested and we have made changes in

> our home to accomodate those. He has been put on quite a few meds. :

> Symbicort, Singulair, Clarinex, Prevacid, and Xopenex. He also has an

> emergency inhaler, which does not offer much relief. I'm a bit

> concerned. Even after starting these meds he is having " flare ups "

> monthly. Is it typical to take some time to get the right " cocktail "

> of meds to make a difference. He also has nasal polyps, any of your

> thoughts would be much appreciated. Thanks! amber

>

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Guest guest

Hi Amber and welcome to the group! Does your dr have Noah on a

nebulizer or inhalers only? IMO, nebulized breathing treatments work

far better than inhalers. My middle son was on Intal (Cromolyn

Sodium) inhalations through a nebulizer for several years and had

very good luck with it. We would also do the Xopenex or Albuterol

via the neb and have more relief than with the inhaler, even with the

spacer.

I think Singulair is a really good drug, especially for children. If

Noah has lots of congestion and mucuous, you might talk to the dr

about switching to Claritin-D or Zyrtec-D, they have a decongestant

in them, while Clarinex or just plain Zyrtec don't. I'm not sure if

they've approved Advair for children, but that might be one to talk

about too. Advair is basically the Flovent (inhaled steroid) with

Serevent (long-acting bronchodilator). Sometimes, the Serevent can

help you get through those long nights without so many breathing

treatments.

Another thing the docs don't always remember to tell you is that if

you take a breathing treatment or inhaler and 10-15 minutes later

you're (or he's) not getting any relief, you can and should most

likely take it again. Sometimes our airways are so closed off the

medicine just can't get in and another treatment is needed after the

1st one opens those airways a little.

I made lists of lots of questions to ask about my asthma and my

children's asthma. I would also call them all hours of the day and

night if I was (or am) unsure of something.

Good luck to you and your little one!

Kathleen - Oregon, USA

>

> Hello all, my name is Amber, I am momma to Noah, Gracie, Emma and

> Caleb. The first three have asthma to some degree. Emma only in

> reaction to allergens such as hay. Gracie, we just recently adopted

> and are just getting started on this path. She has many congenital

> anomalies, including a major heart defect. Noah, is who brought me

> here. He is 7 yr soon to be 8, he is extremely active and has

always

> been our smallest child. Although he had the largest birth wt. soon

> after he seemed to thin out an stay that way. He was diagnosed with

> asthma at the age of 4, starting with an Albuterol inhaler, which

> brought no relief. Over the last couple of years we feel like we

have

> lived at the Pediatricians office. They switched him to a daily

> inhaler, Flovent and Xopenex Q 4 PRN. In the past year he had

> bacterial pneumonia twice and after the second bout we were

referred

> to a ped pulm. He was sweat tested for Cystic Fibrosis, results

were

> border line. He was DNA tested almost 3 weeks ago and the results

are

> not yet in. He was also allergy tested and we have made changes in

> our home to accomodate those. He has been put on quite a few

meds. :

> Symbicort, Singulair, Clarinex, Prevacid, and Xopenex. He also has

an

> emergency inhaler, which does not offer much relief. I'm a bit

> concerned. Even after starting these meds he is having " flare ups "

> monthly. Is it typical to take some time to get the

right " cocktail "

> of meds to make a difference. He also has nasal polyps, any of your

> thoughts would be much appreciated. Thanks! amber

>

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Guest guest

,

Thank you very much for your feedback! I think that every once in a

while fear creeps in, and maybe I wanted to know that I'm not alone in

my quest. Good suggestions for the pul. to get answered.

amber

>

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Guest guest

Thank you for your thoughts/ info. He does do the Xopenex in the neb.

We have been told to do a second immediately-if needed.

I am struggling with all the meds. I just feel like we are guessing

and pumping them in. I like the thought of switching the clarinex,

you're the second to mention it. They do make advair for kids, I had

a foster child on that one last year. Symbicort in kids is a little

less heard of, I think..... Not sure how I feel about that either.

Lots to think about and good suggestions for the doc. Thanks again,

amber

>

> Hi Amber and welcome to the group! Does your dr have Noah on a

> nebulizer or inhalers only? IMO, nebulized breathing treatments

work

> far better than inhalers. My middle son was on Intal (Cromolyn

> Sodium) inhalations through a nebulizer for several years and had

> very good luck with it. We would also do the Xopenex or Albuterol

> via the neb and have more relief than with the inhaler, even with

the

> spacer.

>

> I think Singulair is a really good drug, especially for children.

If

> Noah has lots of congestion and mucuous, you might talk to the dr

> about switching to Claritin-D or Zyrtec-D, they have a decongestant

> in them, while Clarinex or just plain Zyrtec don't. I'm not sure

if

> they've approved Advair for children, but that might be one to talk

> about too. Advair is basically the Flovent (inhaled steroid) with

> Serevent (long-acting bronchodilator). Sometimes, the Serevent can

> help you get through those long nights without so many breathing

> treatments.

>

> Another thing the docs don't always remember to tell you is that if

> you take a breathing treatment or inhaler and 10-15 minutes later

> you're (or he's) not getting any relief, you can and should most

> likely take it again. Sometimes our airways are so closed off the

> medicine just can't get in and another treatment is needed after

the

> 1st one opens those airways a little.

>

> I made lists of lots of questions to ask about my asthma and my

> children's asthma. I would also call them all hours of the day and

> night if I was (or am) unsure of something.

>

> Good luck to you and your little one!

> Kathleen - Oregon, USA

>

>

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  • 3 years later...

Welcome Dawn.  I cannot imagine a teacher speaking that way to a child!!!  How

awful!  I can certainly understand your choice to HS after that!  WOW.  That

is sad.  I am glad things are going well for your son at home.

My name is Sharon.  My husband and I have 3 children - 21yr ds, 10 yr dd, and 8

yr dd.  Our 10 yr old is the one with OCD.  She was dx (OCD and anxiety)

around 4 yrs old.  At that time, germs were her biggest issues.  She had

gotten so she would wake up during the night, wash her hands, then walk back to

her bed holding her hands out in front of her (like a surgeon), so as not to

touch anything, then would lay back down in bed with her hands still held up. 

She was in therapy for awhile and that went great.  OCD and anxiety took a back

seat for awhile and she did great - still always had little " quirks " , though. 

Then she was 5 and was supposed to start kindergarten.   She had so much

anxiety and her OCD had gotten bad again, we chose to wait a year for school. 

She never said she didnt want to go to school, but the anxiety was awful.  When

we told her we were going to wait (4 days before school was to start), you could

visually see the

anxiety leave her body and see the relief.  It was 100% the right choice.  

Since then, OCD/anxiety come and go.  Kindergarten started out tough, but she

had a great teacher to help her through it.  Things went great for awhile,

still having a few quirks here and there.  Last spring she hit her all time low

and started having panic attacks - even in school.  We tried a new therapist,

who did not work out, then found a great new therapist this summer.  She

improved a lot this summer (she took horseback riding lessons and this made huge

improvements for her).  Of course a lot of anxiety before school started again,

and a little the first week.  But she is doing great now - most of the time. 

Fingers crossed for a good year.  If not, we have a lot of things in place to

help her through it.  The older she gets, the better handle she has on it all.

Sharon

________________________________

To:

Sent: Thursday, September 15, 2011 7:15 AM

Subject: Introduction

 

Hi Everyone,

My name is Dawn. I have a wonderful husband and an only child who is 12

years old with high functioning autism. His OCD involves having bad thoughts

and thinking he's done something or said something bad. A couple of years

ago, he had what was labeled generalized anxiety disorder. After two years

with an overcritical special ed teacher in Lifeskills, he has OCD. I was

after her the whole time to stop being so critical because of his anxiety

but as usual teachers don't listen to me and my child ends up suffering. I

decided to homeschool my child this year after his last year teacher told

him that he was going to be made fun of at Jr. High. She also told him his

next teacher would be ten times harder than she is and he would wish her

back. Needless to say, homeschooling has been a major blessing for both of

us. I've seen so many improvements and the greatest one is that I have a

child who enjoys life again. Do I have regrets in not homeschooling

sooner...some. But I wasn't ready then, and I wanted to get him through

elementary school. Life is good now and I hope with " gentle teaching " I

will be able to reduce and maybe even eliminate OCD in my child's life.

Thanks.

Dawn

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Welcome to the group, Dawn.

Homeschooling was a huge blessing for us too. I'm glad that is working so well

for you.

Our son has OCD and GAD, also. I sometimes suspect there is some mild Aspergers

going on too. It can be hard to sort it out sometimes. He's 19 and going to

college now, so our homeschooling days are over.

Glad you found us and are here.

BJ

>

> Hi Everyone,

>

> My name is Dawn. I have a wonderful husband and an only child who is 12

> years old with high functioning autism. His OCD involves having bad thoughts

> and thinking he's done something or said something bad. A couple of years

> ago, he had what was labeled generalized anxiety disorder. After two years

> with an overcritical special ed teacher in Lifeskills, he has OCD. I was

> after her the whole time to stop being so critical because of his anxiety

> but as usual teachers don't listen to me and my child ends up suffering. I

> decided to homeschool my child this year after his last year teacher told

> him that he was going to be made fun of at Jr. High. She also told him his

> next teacher would be ten times harder than she is and he would wish her

> back. Needless to say, homeschooling has been a major blessing for both of

> us. I've seen so many improvements and the greatest one is that I have a

> child who enjoys life again. Do I have regrets in not homeschooling

> sooner...some. But I wasn't ready then, and I wanted to get him through

> elementary school. Life is good now and I hope with " gentle teaching " I

> will be able to reduce and maybe even eliminate OCD in my child's life.

>

> Thanks.

>

> Dawn

>

>

>

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Hi Dawn, welcome! Wow, hated to read all that about his previous teachers, glad

you are able to homeschool and that he's enjoying that!

My son, 22, has OCD and Aspergers/HFA. Have to say, middle school is tough with

peers. His OCD started in 6th grade and so made him even more " odd " to peers.

His Aspergers had the social issues anyway, not fitting in, just not " typical "

conversation of peers, etc. High school was actually much better, guess the

kids matured!

My son presently has the scrupulosity type of OCD with bad thoughts. When it

first began it was more physical stuff, compulsions, rituals. Said he had to do

them so nothing bad would happen to him. Also had to get a " just right " feeling

when doing them. Was easier for him to see the earlier stuff as OCD than it is

the thoughts.

Glad you found our group!

>

> Hi Everyone,

>

> My name is Dawn. I have a wonderful husband and an only child who is 12

> years old with high functioning autism. His OCD involves having bad thoughts

> and thinking he's done something or said something bad. A couple of years

> ago, he had what was labeled generalized anxiety disorder. After two years

> with an overcritical special ed teacher in Lifeskills, he has OCD. I was

> after her the whole time to stop being so critical because of his anxiety

> but as usual teachers don't listen to me and my child ends up suffering. I

> decided to homeschool my child this year after his last year teacher told

> him that he was going to be made fun of at Jr. High. She also told him his

> next teacher would be ten times harder than she is and he would wish her

> back. Needless to say, homeschooling has been a major blessing for both of

> us. I've seen so many improvements and the greatest one is that I have a

> child who enjoys life again. Do I have regrets in not homeschooling

> sooner...some. But I wasn't ready then, and I wanted to get him through

> elementary school. Life is good now and I hope with " gentle teaching " I

> will be able to reduce and maybe even eliminate OCD in my child's life.

>

> Thanks.

>

> Dawn

>

>

>

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  • 3 weeks later...

Since you couldn't afford a second opinion, who eventually diagnosed her with

OCD?

Did something traumatic happen in her life for them to consider PTSD?

PTSD is not often confused with OCD. More so, ADD or ADHD is confused with OCD,

since they have trouble focusing due to the OCD going on in their head.

Since she is so young and struggling so much she probably is having separation

anxiety. Often anxiety disorder co-exist and OCD is also an anxiety disorder,

so that is not surprising.

Our son had separation anxiety at that age too. He is now 19, but has also

suffered with GAD (generalized anxiety disorder), panic attacks, and phobias,

along with his OCD.

From your description, it sounds like it was very unprofessional for the person

to have not even listened to your daughter.

Is your daughter exhibiting any other OCD behaviors?

Sorry for all the questions, just trying to get a better picture.

I'm so sorry she, and your family, is having a hard time.

The first line of treatment is the correct therapy. With OCD, that is CBT/ERP

(cognitive behavioral therapy / exposure and response prevention) therapy.

Medication is usually brought in if the OCD is so bad that they cannot do the

therapy. Medication can bring the anxiety level down, making it easier for them

to confront the OCD with therapy.

It sounds like you are very limited for therapists. Have you checked the

ocfoundation.org website to see if you can find a therapist listed there that

might be near you? It can be hard to find someone who takes specific insurance,

but it's worth a try.

Something you can do in the mean time is you can try some workbooks at home, to

see if you can help her get the OCD to a more manageable place.

There is a list of books in our files that you might find helpful, some targeted

for young children. One that we really liked, personally, was Talking Back to

OCD, by March.

There are things you can do with the school situation. Your daughter, with her

diagnosis, can have accommodations, due to OCD being a disability. You might

need to get an IEP or a 504 Program set up to help her there.

We also have information about that in our files. :~)

Here is a short description to help you figure out what you think she might

need.

http://www.apfed.org/downloads/IEP_and_504.pdf

We opted to homeschool and found it to be a real blessing, but I realize it

isn't for everybody. The flexibility worked wonderfully for us, so we could

make our son's treatment our focus, when needed.

Yes, you will need to be your child's advocate. The best thing to do is to

learn as much as you can about OCD and how it is treated successfully, so you

can teach doctors, teachers, etc., because the sad truth is, most of them just

don't understand OCD.

If you can tell us what she is currently struggling with, there are many here

who can offer up some ideas to try to get OCD more under control.

Just a few suggestions to help you see how you can help her fight her OCD. . . .

With the questioning, you can try different things like possibly giving her

coupons to ask questions with, and once she is out of them, she has to stop

asking.

You could turn it into somewhat of a game by having her put one of her question

coupons in a box when she chooses to ask, letting her even help design the

" question box " and coupons.

Or tell her she gets once question, every hour, or every half hour, depending on

how hard it is for her.

If she asks after her coupons are gone, or before the time chosen has passed,

you can answer her by saying " I can't say " .

If you talk to her first, explaining you are going to try to help her to stop

asking so many questions, and make it a thing where you are working together to

" fight the OCD monster " , she will be more likely to accept when you cannot

answer her.

As she accepts it, you can pull back and give her less coupons, or extend her

asking time, until you reach a point that she is able to stop asking.

The thing with OCD is that the more they give in, the more it grows. The more

they fight it, the less power it has and eventually it becomes less bothersome.

With the shoes, you could even try something as simple as marking her shoes with

and R and L, so she can check them rather than asking. . BUT, there is the risk

that OCD will evolve and morph into a " shoe checking " thing. It has that

potential.

Glad you found our group.

BJ

>

> My name is and my six year old daughter was recently diagnosed with

OCD. Her first diagnosis was Post Traumatic Stress Disorder and Separation

Anxiety, I asked for a second opinion because the first evaluation the

interviewer didn't once look at my daughter she stared at the computer screen

and asked question as the computer prompt her this concerned me. Considering my

daughter asked 32 times in the hour and half evaluation if her shoes were on the

right feet. I asked the interviewer after she gave her initial diagnosis, if

she heard my daughter ask me these questions. Her response was NO.

>

> We state insurance and are very limited as to who we can see, basically the

above medical facility was it. I got a second opinion.

>

> My daughter is currently not on any medication, the pediatrician does not feel

comfortable dispensing. We can not afford the second opinion's fees as they are

not covered by our insurance only as a second opinion and they've already done

the evaluation.

>

> We don't have a therapist since our insurance will only pay for the facility

that diagnosed her with Post - Traumatic Stress and Separation Anxiety.

>

> Do these two (Post-traumatic and Separation Anxiety) relate? Is it common for

OCD to be diagnosed as this?

>

> My daughter has just starting having trouble in school. To the point the

school is losing their patience and have recommended we home school her. We

really can't afford this as my husband works nights and I work days. As you can

tell money is tight.

>

> I don't know where to turn. If I am not my child's advocate who will be and

where should I seek help.

>

> Any thoughts?

>

>

>

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BJ:

Her insurance company after months and months of me being a pest finally agreed

to pay for a second opinion with an out of network provider. They only covered

50% and we are doing the cash advance on our paychecks to cover the rest.

The only change that my daughter experienced was me returning to work when she

started kindergarten. This is what the first consult based PTSD on.

Yes, my daughter exhibits other OCD behaviors, frequent hand washing and asking

if her hands are clean, excessive bathroom use, cleanliness issues, perfect

issues, asking the same thing over and over.

Thank you for reading my intro and any help is greatly appreciated, I feel so

alone. The suggests were great and I am currently reviewing the files section

and digesting.

>

>

>

>

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Hi , welcome!

I read BJ gave you a lot of good info.

If your state insurance is anything like our's, then the good thing is that it

does pay for mental health treatment. Sounds like that evaluation was just that

first screening, what with her going through the computer screen questions.

Apparently it doesn't identify OCD very well though. Hopefully with further

visits - they did advise her to come in for outpatient therapy didn't they? -

they will identify the OCD to treat. I would suggest to them that they do the

CYBOCS screening for her. CYBOCS = Children's Yale-Brown Obsessive Compulsive

Scale. Here's a link:

http://www.ocfoundation.org/EO_Measures.aspx

Here's one I googled: http://www.stlocd.org/handouts/CY-BOC-1-6.pdf

The forms can differ from what I've googled on YBOCS and CYBOCS (YBOCS is for

adults)

School - can't believe they suggested homeschooling to you! Is this a public

school?? BJ gave you info about the IEPs and 504 Plans. I would pursue one of

those. In our FILES section, there is information about school issues. Look at

the file about the role of school personnel for OCD. There is also a new book

out that I have skimmed through, its called " Students with OCD, A Handbook for

School Personnel " by Gail (who helps advise our group). It's a good book

for parents too. It's about $20, not bad. But if that is a problem, they may

have a copy at a local bookstore that you can read through there. That's what I

used to do sometimes, go to the bookstore and read through some there instead of

buying.

http://ocdhandbook.com/parents/

Keep us updated on how things are going, feel free to ask any questions. This

group has been my best support over the years and got lots of great ideas on how

to battle OCD from here. My son's began in 6th grade and I joined soon after.

He's 22 now. We had to set up a 504 Plan for him at school to deal with the

problems OCD caused.

single mom, 3 sons

, 22, with OCD, dysgraphia and Aspergers

>

> My name is and my six year old daughter was recently diagnosed with

OCD. Her first diagnosis was Post Traumatic Stress Disorder and Separation

Anxiety, I asked for a second opinion because the first evaluation the

interviewer didn't once look at my daughter she stared at the computer screen

and asked question as the computer prompt her this concerned me. Considering my

daughter asked 32 times in the hour and half evaluation if her shoes were on the

right feet. I asked the interviewer after she gave her initial diagnosis, if

she heard my daughter ask me these questions. Her response was NO.

>

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Sorry it came to that .

The first year our son was in treatment, we had to pay for all of it out of

pocket, because it was out-of-network, and our deductible was HUGE. It was a

huge financial burden, at the time, and we were blessed to have family help us

out, otherwise we couldn't have done it. So, I understand the struggle.

I'm glad it wasn't something worse that caused her to feel traumatized. But, I

still wonder about the PTSD diagnosis. From what you are describing, it sounds

more like OCD. I'm glad you pushed for a second opinion. Getting the right

treatment is important, so you have to have the right diagnosis too.

Everything she is dealing with, our son has also dealt with. You could be

dealing with some " just right " OCD too. That often causes perfectionism in

them. Things need to be " just right " before they can move on to something else.

In fact, our son, now 19, had to lower his medication and it going through the

hand washing thing for the second time in his life. It's a little more

difficult this time, because he is a teen and doesn't listen to me like he did

when he was young.

If you have any questions, please jump right in and post. . .

BJ

>

> BJ:

> Her insurance company after months and months of me being a pest finally

agreed to pay for a second opinion with an out of network provider. They only

covered 50% and we are doing the cash advance on our paychecks to cover the

rest.

>

> The only change that my daughter experienced was me returning to work when she

started kindergarten. This is what the first consult based PTSD on.

>

> Yes, my daughter exhibits other OCD behaviors, frequent hand washing and

asking if her hands are clean, excessive bathroom use, cleanliness issues,

perfect issues, asking the same thing over and over.

>

> Thank you for reading my intro and any help is greatly appreciated, I feel so

alone. The suggests were great and I am currently reviewing the files section

and digesting.

>

>

> >

> >

> >

>

> >

>

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  • 2 months later...

No, I don't get a signal at all. I can always eat something. Very rarely am I

turned off by food. And I am always thinking about what and when to eat next.

Thanks for the advice about the Appetite Adjuster. I will try that.

Have a Good Day.

b.

>

> Welcome!

>

> Do you mean that you don't get any signal--satisfied, full, stuffed?

>

> I was like that--I could feel hunger, but I didn't realize I'd had enough

until I was way over. The Appetite Adjuster download helped a lot.

>

>

>

>

>

> >________________________________

> >

> >To: insideoutweightloss

> >Sent: Saturday, December 31, 2011 5:50 PM

> >Subject: Introduction

> >

> >

> > 

> >Hi

> >I'm 51 and I live in the Chicago area.

> >

> >I've been listening to 's podcasts for 3 years, but not really doing the

work in a lasting way. While I haven't lost weight during this time, I think I

have made mental progress, reducing some negative behaviors and incorporating

some positive behaviors.

> >I was a member of this group about a year ago, but never posted, and

eventually left, still thinking that I could conquer my challenges on my own.

> >My situation is that I eat and rarely feel full or satisfied. I am 30 lbs.

above the mid range of the normal weight for my height. However, I am fit, and I

exercise more often than I don't, because I feel better when I do. I've been

using the Lose It! app for the past month, honestly recording everything I eat

and was surprised at the average number of calories I eat on a daily basis -

Even when I think I'm making better choices at meal times.

> >

> >I preordered the Full-Filled book, but haven't received it yet. I signed up

for the class that starts Jan 9. I'm ready now to make a commitment and to

participate. I'd like to ask this group to please help me and support me in my

journey.

> >

> >Have a Good Day.

> >b.

> >

> >

> >

> >

> >

>

>

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Thanks for the welcome! Hope you are feeling OK.

Due to 's suggestion, I am trying to visualize how a food will affect me

over time. For instance, I now know that if I eat candy, I will get tired and

lose energy within a couple hours after eating it. And, if I eat a lot of sugar

before going to bed, I will not sleep well.

This knowledge has changed my actions some of the time, but not all of the time.

Have a Good Day.

b.

>

> >Hi

> >I'm 51 and I live in the Chicago area.

> >

> >I've been listening to 's podcasts for 3 years, but not really doing the

work in a lasting way. While I haven't lost weight during this time, I think I

have made mental progress, reducing some negative behaviors and incorporating

some positive behaviors.

> >I was a member of this group about a year ago, but never posted, and

eventually left, still thinking that I could conquer my challenges on my own.

> >My situation is that I eat and rarely feel full or satisfied. I am 30 lbs.

above the mid range of the normal weight for my height. However, I am fit, and I

exercise more often than I don't, because I feel better when I do. I've been

using the Lose It! app for the past month, honestly recording everything I eat

and was surprised at the average number of calories I eat on a daily basis -

Even when I think I'm making better choices at meal times.

> >

> >I preordered the Full-Filled book, but haven't received it yet. I signed up

for the class that starts Jan 9. I'm ready now to make a commitment and to

participate. I'd like to ask this group to please help me and support me in my

journey.

> >

> >Have a Good Day.

> >b.

> >

> >

> >

>

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Some of the time is a great start. It can lead to more of the time. And then

most of the time.

Keep up the good work!

>________________________________

>

>To: insideoutweightloss

>Sent: Sunday, January 1, 2012 7:20 PM

>Subject: Re: Introduction

>

>

> 

>Thanks for the welcome! Hope you are feeling OK.

>

>Due to 's suggestion, I am trying to visualize how a food will affect me

over time. For instance, I now know that if I eat candy, I will get tired and

lose energy within a couple hours after eating it. And, if I eat a lot of sugar

before going to bed, I will not sleep well.

>This knowledge has changed my actions some of the time, but not all of the

time.

>

>Have a Good Day.

>b.

>

>-

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Welcome B!

The do-it-myself thinking reminds me of the old me. I'm so glad you are now

reaching out!

I'm also delighted you will be joining us for the full-filled companion class!

That will add structure, support and accountability.

Love,

Sent from my iPad

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I tend to berate myself for the times that I fail and rarely remember to

celebrate the times that I succeed. Iowl is helping me to focus on success,

which seems to give me strength ass I move forward.

The visualization is very helpful. In particular, the prequel.

Psawyer

wrote:

>Some of the time is a great start. It can lead to more of the time. And then

most of the time.

>

>Keep up the good work!

>

>

>

>>________________________________

>>

>>To: insideoutweightloss

>>Sent: Sunday, January 1, 2012 7:20 PM

>>Subject: Re: Introduction

>>

>>

>> 

>>Thanks for the welcome! Hope you are feeling OK.

>>

>>Due to 's suggestion, I am trying to visualize how a food will affect me

over time. For instance, I now know that if I eat candy, I will get tired and

lose energy within a couple hours after eating it. And, if I eat a lot of sugar

before going to bed, I will not sleep well.

>>This knowledge has changed my actions some of the time, but not all of the

time.

>>

>>Have a Good Day.

>>b.

>>

>>-

>

>

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Hi my name is h, and I too just purchased 's book and was so excited

when I received it in the mail! I am 21 and have been listening to her podcasts

for a little of a year now off and on but haven't really put a 100% into it.

This time around I am willing especially with the book to guide me. I signed up

for the Facebook 6 week group I am not sure if that is what everyone is talking

about, but I did not know it included voice chats. Does anyone have more

information on this? I am so glad to be part of a group that is really motivated

to discover lasting change!!

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Welcome, h!

> Hi my name is h, and I too just purchased 's book and was so excited

when I received it in the mail! I am 21 and have been listening to her podcasts

for a little of a year now off and on but haven't really put a 100% into it.

 This time around I am willing especially with the book to guide me. I signed up

for the Facebook 6 week group I am not sure if that is what everyone is talking

about, but I did not know it included voice chats.  Does anyone have more

information on this? I am so glad to be part of a group that is really motivated

to discover lasting change!!

>

>

>

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

>

> Copyright 2005-2007. A. s. All worldwide rights reserved.Yahoo!

Groups Links

>

>

>

--

You can't start the next chapter of your life if you keep re-reading

the last one.

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Welcome, h - Glad you're here!

This is the link to the conference call & class information:

http://www.reneemethod.com/fulfilled

<http://www.reneemethod.com/fulfilled>

b.

>

> Hi my name is h, and I too just purchased 's book and was so

excited when I received it in the mail! I am 21 and have been listening

to her podcasts for a little of a year now off and on but haven't really

put a 100% into it. This time around I am willing especially with the

book to guide me. I signed up for the Facebook 6 week group I am not

sure if that is what everyone is talking about, but I did not know it

included voice chats. Does anyone have more information on this? I am so

glad to be part of a group that is really motivated to discover lasting

change!!

>

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  • 1 month later...

I am in the Indy area. I will be happy to email with you about my daughter's

OCD struggles and triumphs. My email is ascason@...

Amy

Sent from my iPhone

> Hi Everyone,

>

> I am so glad to have found this group. My daughter (who turned 3 in December)

has exhibited compulsive behaviors for probably at least a year (ranging from

rituals such as needing to give hugs, kisses, and repeated patterns of high-5's

before bed or before anyone leaves the house, to needing to undo and redo things

that upset her). Within the last week, this has escalated into violent tantrums.

She is a very verbal and very physically affectionate child, but in these

moments I could not break through to her--could not physically or verbally

comfort her.Until this happened, I had not worried to much about the

compulsions--something I have dealt with myself in a very mild form. The recent

behaviors, though, took us to our pediatrician, who was amazingly generous with

her time, expressed concern, and is working on a referal to a psychiatrist. I'm

feeling a mixture of relief that we were taken seriously and can get help, guilt

that I didn't seek help

> earlier, and fear now that it has suddenly become real.

>

> I'm going to start digging into old group files, but I would love to hear from

others--especially anyone whose child has faced this struggle at so early an

age. I'd also love to hear from anyone who might be in the Indianapolis area or

have knowledge about specialists there. We are in Bloomington, but our

pediatrician thinks we will need to seek someone out at Riley Children's

Hospital because Eleanor is so young. Eleanor is the youngest of my three girls

(the others are 13 and 6), and I would also love to hear about how others have

worked on family dynamics--something we are already struggling with as Eleanor's

behaviors impact the other girls.

>

> Thank you for listening,

>

> Greta

>

>

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I am in the Indy area. I will be happy to email with you about my daughter's

OCD struggles and triumphs. My email is ascason@...

Amy

Sent from my iPhone

> Hi Everyone,

>

> I am so glad to have found this group. My daughter (who turned 3 in December)

has exhibited compulsive behaviors for probably at least a year (ranging from

rituals such as needing to give hugs, kisses, and repeated patterns of high-5's

before bed or before anyone leaves the house, to needing to undo and redo things

that upset her). Within the last week, this has escalated into violent tantrums.

She is a very verbal and very physically affectionate child, but in these

moments I could not break through to her--could not physically or verbally

comfort her.Until this happened, I had not worried to much about the

compulsions--something I have dealt with myself in a very mild form. The recent

behaviors, though, took us to our pediatrician, who was amazingly generous with

her time, expressed concern, and is working on a referal to a psychiatrist. I'm

feeling a mixture of relief that we were taken seriously and can get help, guilt

that I didn't seek help

> earlier, and fear now that it has suddenly become real.

>

> I'm going to start digging into old group files, but I would love to hear from

others--especially anyone whose child has faced this struggle at so early an

age. I'd also love to hear from anyone who might be in the Indianapolis area or

have knowledge about specialists there. We are in Bloomington, but our

pediatrician thinks we will need to seek someone out at Riley Children's

Hospital because Eleanor is so young. Eleanor is the youngest of my three girls

(the others are 13 and 6), and I would also love to hear about how others have

worked on family dynamics--something we are already struggling with as Eleanor's

behaviors impact the other girls.

>

> Thank you for listening,

>

> Greta

>

>

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My son was dx at 3 with first symptoms of anxiety starting at birth and first

clear compulsive symptoms at 9 months in hindsight. My advice is to find an

expert who works with very young children even if it means traveling or doing an

intensive program. When I think of the years we wasted with inferior help, it

breaks my heart. The family dynamics are really hard. My son is the oldest of

3 boys ( now 15,13 and 9) and it has truly caused problems for the others. We

have tried to explain to the kids that it is not him but his disease that is the

problem. YOu might have an easier time since your others are older, but then

again, they may be jealous of the attention she gets since she is the baby. We

have also done family therapy at times. Happy to talk off lie if you would like.

NOt that many people who have dealt with very young children with OCD.

The short version of how to treat though is the same as if they are older

(CBT/ERP) but they have a hard time understanding it. Get some good kids books

about it ( UP and Down the worry hill, What to do when your brain gets stuck,

or even ones that address it obliquely ( the scardy squirrel series, or Harry

and the Terrible whatizt come to mind). Name it as something separate from her,

tell stories about defeating it etc. I would also get a good parent guide to

OCD.

But overall, if you need to totally disrupt your life to find an expert out of

your area, then do it. Better to know what good therapy looks like early and

then deal with inferior local help after then the other way around. Good luck

and hang in there

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