Re: Any UK children with OCD?

[Guest guest]

Hi there,

Just have a quick minute, but googled OCD uk and pulled up -

www.ocduk.org, and www.ocdkids.org

There are several books for kids that you can find listed on the

ocfoundation.org website. One that is popular is " What to do when your brain

gets stuck " . It has a workbook component to it, so you could use this at home.

" Repetitive Rhonda " is one that is pitched towards younger kids.

The ocfoundation.org website has a list of psychologists who treat OCD, they

might have someone in the UK wherever you are. They are not recommended, just

listed, so you have to check them out to be sure their expertise.

Have to go, will write more later.

Warmly,

Barb

Canada

>

> Hi

>

> My daughter had a sudden onset of OCD earlier this year age just 4. I

immediately recognised it as OCD when she was kissing spindles, objects, which

quickly descended into total chaos and our lives were turned upside down.

>

> Most of the help I can find is from US parents which has been most useful. In

the UK kids are not prescribed drugs till age 16 and I am being told my daughter

now 5 is too young for CBT. We see a counsellor once a month who I have to

convince my daughter has OCD and not behavioural issues. Our lives are so

difficult and there does not seem to be any help over here.

>

> I am prepared to pay privately but cannot find anyone to help. OCD is either

very rare at this age or just not recognised here. Is there anyone from the UK

that can help.

>

> Also does anyone have any tips on how you get round explaining to other

parents. I don't want my daughter to be treated differently or bullied later in

life. However I am constantly embarassed at parties, when collecting from a

friends house for her extreme behaviour and temper which to anyone else looks as

if I am not parenting properly and have a naughty daughter.

>

> Any tips for how you manage in a social situation? If I reprimand my daughter

she goes absolutely wild.

>

> I also have a son who is 7 and am terrified that this is genetic (My sis in

law has a very mild ocd compared to this!) and he may develop it too.

>

> Any help would be most appreciated.

>

[Guest guest]

hi there

ma son has ocd and i live in the uk too. he is 13 and ma life is turned upside

dowen too. in front of the other people it looks like ur daughter is naghty and

has got behavioural problems but its not that its the ocd that does make her

behave like that. ma son was in hospital for 2 months because of the chaos and

him going wild. ocd is such a bizarre medical condition but there is hope. its

is curable but it depends how the child reackts to the therapy....ma one is not

responding to the therapy....the help that you can get is either to go for

private therapy or go to the gp and he will make a referal to the CAHMS local

clinic...i wish you all the like but its not easy but you have to know that you

are not alone...i havent told any of his friends or their parents cos i dont

want him to get bullied and my family or my relatives they know but there is no

point, they dont understand it...they think that he is naughty so there is no

point even worrieng about that....keep next to u only the people that understand

you and are supportive to you...cos i know how much you are going thruogh and u

dont need other people to tell u how to discipline or educate ur daughter...get

help as soon as you can...go and push ur gp to make a referal asap....and be

patience...i know how hard it is and how awful it is...im living with it

everyday....but we have to be stroong and whats best for our children...and yeah

for sure our life is turned upside down...but we have to be strong for our

children....i wish you and ur daughter all the luck and i hope you get the help

she needs as soon as possible...write to me if you need more information...

all the best

ida

To:

From: babysleepshop@...

Date: Tue, 23 Nov 2010 16:31:56 +0000

Subject: Any UK children with OCD?

Hi

My daughter had a sudden onset of OCD earlier this year age just 4. I

immediately recognised it as OCD when she was kissing spindles, objects, which

quickly descended into total chaos and our lives were turned upside down.

Most of the help I can find is from US parents which has been most useful. In

the UK kids are not prescribed drugs till age 16 and I am being told my daughter

now 5 is too young for CBT. We see a counsellor once a month who I have to

convince my daughter has OCD and not behavioural issues. Our lives are so

difficult and there does not seem to be any help over here.

I am prepared to pay privately but cannot find anyone to help. OCD is either

very rare at this age or just not recognised here. Is there anyone from the UK

that can help.

Also does anyone have any tips on how you get round explaining to other parents.

I don't want my daughter to be treated differently or bullied later in life.

However I am constantly embarassed at parties, when collecting from a friends

house for her extreme behaviour and temper which to anyone else looks as if I am

not parenting properly and have a naughty daughter.

Any tips for how you manage in a social situation? If I reprimand my daughter

she goes absolutely wild.

I also have a son who is 7 and am terrified that this is genetic (My sis in law

has a very mild ocd compared to this!) and he may develop it too.

Any help would be most appreciated.

[Guest guest]

> To:

> From: alidalush@...

> Date: Wed, 24 Nov 2010 09:22:56 +0000

> Subject: RE: Any UK children with OCD?

>

>

> hi there

> ma son has ocd and i live in the uk too. he is 13 and ma life is turned upside

dowen too. in front of the other people it looks like ur daughter is naghty and

has got behavioural problems but its not that its the ocd that does make her

behave like that. ma son was in hospital for 2 months because of the chaos and

him going wild. ocd is such a bizarre medical condition but there is hope. its

is curable but it depends how the child reackts to the therapy....ma one is not

responding to the therapy....the help that you can get is either to go for

private therapy or go to the gp and he will make a referal to the CAHMS local

clinic...i wish you all the like but its not easy but you have to know that you

are not alone...i havent told any of his friends or their parents cos i dont

want him to get bullied and my family or my relatives they know but there is no

point, they dont understand it...they think that he is naughty so there is no

point even worrieng about that....keep next to u only the people that understand

you and are supportive to you...cos i know how much you are going thruogh and u

dont need other people to tell u how to discipline or educate ur daughter...get

help as soon as you can...go and push ur gp to make a referal asap....and be

patience...i know how hard it is and how awful it is...im living with it

everyday....but we have to be stroong and whats best for our children...and yeah

for sure our life is turned upside down...but we have to be strong for our

children....i wish you and ur daughter all the luck and i hope you get the help

she needs as soon as possible...write to me if you need more information...

>

> all the best

> ida

>

>

>

> To:

> From: babysleepshop@...

> Date: Tue, 23 Nov 2010 16:31:56 +0000

> Subject: Any UK children with OCD?

>

>

>

>

>

>

> Hi

>

> My daughter had a sudden onset of OCD earlier this year age just 4. I

immediately recognised it as OCD when she was kissing spindles, objects, which

quickly descended into total chaos and our lives were turned upside down.

>

> Most of the help I can find is from US parents which has been most useful. In

the UK kids are not prescribed drugs till age 16 and I am being told my daughter

now 5 is too young for CBT. We see a counsellor once a month who I have to

convince my daughter has OCD and not behavioural issues. Our lives are so

difficult and there does not seem to be any help over here.

>

> I am prepared to pay privately but cannot find anyone to help. OCD is either

very rare at this age or just not recognised here. Is there anyone from the UK

that can help.

>

> Also does anyone have any tips on how you get round explaining to other

parents. I don't want my daughter to be treated differently or bullied later in

life. However I am constantly embarassed at parties, when collecting from a

friends house for her extreme behaviour and temper which to anyone else looks as

if I am not parenting properly and have a naughty daughter.

>

> Any tips for how you manage in a social situation? If I reprimand my daughter

she goes absolutely wild.

>

> I also have a son who is 7 and am terrified that this is genetic (My sis in

law has a very mild ocd compared to this!) and he may develop it too.

>

> Any help would be most appreciated.

>

>

>

>

>

>

[Guest guest]

Hi there,

You mentioned the sudden onset. I don't see it in any of the replies you've

gotten so far: but has anyone mentioned PANDAS or PITAND OCD to you. Sudden

onset is one of the key diagnostic criteria. PANDAS is when a strep infection

causes an autoimmune reaction where antibodies mistakenly attack the brain,

cause swelling in the basal ganglia and results in either OCD and/or Tics plus

some combination of other symptoms, including:

ADHD like behavior

Emotional lability (mood swings/rages/depression)

Sleep disturbances

Urinary issues (i.e. daytime frequency/night time bed wetting)

Deterioration in fine motor skills (such as handwriting)

Deterioration in math skills

There are more...just can't think off the top of my head, since I am about to

start work and only have a few minutes...

PITAND is similar to PANDAS, but an infection other than strep (such as

mycoplasma pneumonia, Lyme Disease, Lupus, etc) is the trigger.

You may want to take some time to review the information at

www.pandasresourcenetwork.org. There is a very helpful FAQ there.

www.webpediatrics.com is the website of one of the top PANDAS docs here in the

US. It is also very informative

There is also a PANDAS/PITAND support group in the " forums " section at

www.latitudes.org. Most of the people on that board already know their children

have PANDAS, so it can look pretty technical, but if you just say you are new

and have questions as you try to figure things out, many will reply.

There are no true tests to diagnose PANDAS - it's a clinical diagnosis based on

symptoms and health history. But one way to start is to have your child tested

for strep: start with a rapid throat culture, if that's negative, have them

culture it in a lab; if that's negative, do a blood test for ASP and Anti DNaseB

strep titers.

I've got to run. Please feel free to email me privately or post any questions.

Kara

>

> Hi

>

> My daughter had a sudden onset of OCD earlier this year age just 4. I

immediately recognised it as OCD when she was kissing spindles, objects, which

quickly descended into total chaos and our lives were turned upside down.

>

> Most of the help I can find is from US parents which has been most useful. In

the UK kids are not prescribed drugs till age 16 and I am being told my daughter

now 5 is too young for CBT. We see a counsellor once a month who I have to

convince my daughter has OCD and not behavioural issues. Our lives are so

difficult and there does not seem to be any help over here.

>

> I am prepared to pay privately but cannot find anyone to help. OCD is either

very rare at this age or just not recognised here. Is there anyone from the UK

that can help.

>

> Also does anyone have any tips on how you get round explaining to other

parents. I don't want my daughter to be treated differently or bullied later in

life. However I am constantly embarassed at parties, when collecting from a

friends house for her extreme behaviour and temper which to anyone else looks as

if I am not parenting properly and have a naughty daughter.

>

> Any tips for how you manage in a social situation? If I reprimand my daughter

she goes absolutely wild.

>

> I also have a son who is 7 and am terrified that this is genetic (My sis in

law has a very mild ocd compared to this!) and he may develop it too.

>

> Any help would be most appreciated.

>

[Guest guest]

Hi Ida,

Not sure if this is your first time posting, but just wanted to say welcome.

Sounds like you are challenged with a teen coping with OCD. We found the teen

part really influenced the willingness to get on board with the ERP therapy.

Just to encourage you, it gets better the older they get!! Ours is 19 now, the

OCD started at 15, and by 17 he decided he wanted his life back and really

started fighting the OCD.

Can I ask you what CAHMS stands for? What are the wait times like to get into a

clinic or for private therapy. I am in Canada and private is pretty quick,

about 4-6weeks, through the hospital system it's 4-8months.

Warmly,

Barb

>

>

> hi there

> ma son has ocd and i live in the uk too. he is 13 and ma life is turned upside

dowen too. in front of the other people it looks like ur daughter is naghty and

has got behavioural problems but its not that its the ocd that does make her

behave like that. ma son was in hospital for 2 months because of the chaos and

him going wild. ocd is such a bizarre medical condition but there is hope. its

is curable but it depends how the child reackts to the therapy....ma one is not

responding to the therapy....the help that you can get is either to go for

private therapy or go to the gp and he will make a referal to the CAHMS local

clinic...i wish you all the like but its not easy but you have to know that you

are not alone...i havent told any of his friends or their parents cos i dont

want him to get bullied and my family or my relatives they know but there is no

point, they dont understand it...they think that he is naughty so there is no

point even worrieng about that....keep next to u only the people that understand

you and are supportive to you...cos i know how much you are going thruogh and u

dont need other people to tell u how to discipline or educate ur daughter...get

help as soon as you can...go and push ur gp to make a referal asap....and be

patience...i know how hard it is and how awful it is...im living with it

everyday....but we have to be stroong and whats best for our children...and yeah

for sure our life is turned upside down...but we have to be strong for our

children....i wish you and ur daughter all the luck and i hope you get the help

she needs as soon as possible...write to me if you need more information...

>

> all the best

> ida

>

>

>

[Guest guest]

Hi, welcome!

I wasn't able to find a therapist for my son when his OCD began. What I

basically did was just read, learn about OCD and therapy, and we worked on our

own.

Your daughter might enjoy some good children books on OCD. The book " Kissing

Doorknobs " came to mind since you mentioned her kissing things. But there are

other great books for children too.

Therapy will work for children her age. Seems your therapist isn't experienced

with OCD! So you may, while you search for help, just have to do as we did,

work on behaviors on your own at getting her to " boss back " OCD.

Social situations - So does she not try to " hide " her OCD around others? Still

kissing things, or are people triggering some of her other OCD problems while

she's visiting?

I have 2 other sons, but no OCD there. Though they (and me too) have our

" quirks " , nothing has developed for us into the *disorder* that my OCD son has.

He just got the full force of it! And even my sons " quirks " have changed over

the years, stopped, etc.

This group was such a help (and still is) to get support and ideas on how to

approach things with my son. Hopefully it will be for you too until you can

find someone experienced to help do therapy with your daughter.

single mom, 3 sons

, 21, with OCD, Aspergers, dysgraphia

>

> Hi

>

> My daughter had a sudden onset of OCD earlier this year age just 4. I

immediately recognised it as OCD when she was kissing spindles, objects, which

quickly descended into total chaos and our lives were turned upside down.

>

> Most of the help I can find is from US parents which has been most useful. In

the UK kids are not prescribed drugs till age 16 and I am being told my daughter

now 5 is too young for CBT. We see a counsellor once a month who I have to

convince my daughter has OCD and not behavioural issues. Our lives are so

difficult and there does not seem to be any help over here.

[Guest guest]

Hi Ida/Barbs

Camhs is the child and adolescent mental health service in the UK. We are now

within the system and see a family therapist once a month. We find it so

frustrating. They don't want to diagnose as my daughter is only 5 and treat it

like a behavioural issue and are very reactive. They don't seem to have the

experience or knowledge. Nobody knew what Pandas was when I asked. At present,

its not helpful. We have battled to get to see a pyschiatrist to discuss this

in the near future.

Thankfully I have been reading and have managed to make OCD 'grump' the bully

and we now crush and stamp on him. My daughter has stopped all her rituals

except when we have a spike. We are now dealing with the temper, abuse, social

issues, dressing, eating, going to bed etc, which is draining.

My husband is really low and worn out now, as am I most of the time. I am

terrified of the future and where my daughter will end up and what we are going

to have to face as she gets older.

I hope you son makes improvements, its so hard with a 5 year old, I can imagine

the stress it must be with a teen.

Thanks for all the leads, I will follow them up.

I would be interested in hearing from any parents that have had a young child

with OCD that has got better, or positive stories and tips.

Thanks

J

> >

> >

> > hi there

> > ma son has ocd and i live in the uk too. he is 13 and ma life is turned

upside dowen too. in front of the other people it looks like ur daughter is

naghty and has got behavioural problems but its not that its the ocd that does

make her behave like that. ma son was in hospital for 2 months because of the

chaos and him going wild. ocd is such a bizarre medical condition but there is

hope. its is curable but it depends how the child reackts to the therapy....ma

one is not responding to the therapy....the help that you can get is either to

go for private therapy or go to the gp and he will make a referal to the CAHMS

local clinic...i wish you all the like but its not easy but you have to know

that you are not alone...i havent told any of his friends or their parents cos i

dont want him to get bullied and my family or my relatives they know but there

is no point, they dont understand it...they think that he is naughty so there is

no point even worrieng about that....keep next to u only the people that

understand you and are supportive to you...cos i know how much you are going

thruogh and u dont need other people to tell u how to discipline or educate ur

daughter...get help as soon as you can...go and push ur gp to make a referal

asap....and be patience...i know how hard it is and how awful it is...im living

with it everyday....but we have to be stroong and whats best for our

children...and yeah for sure our life is turned upside down...but we have to be

strong for our children....i wish you and ur daughter all the luck and i hope

you get the help she needs as soon as possible...write to me if you need more

information...

> >

> > all the best

> > ida

> >

> >

> >

>

[Guest guest]

Hi again,

Just wanted to mention a book that might be helpful for handling the outbursts

that can come along with OCD. " The Explosive Child " is really good for younger

kids, and has strategies for coping in situations.

Also, re CBT, it CAN be done with young children, you just need to find someone

who can do it. Start searching for child specialists for other brain based

issues in general, and asking for names and something might turn up. If you can

find a psychiatrist/psychologist who works with children at all, there has to be

someone somewhere and one name can sometimes lead to another.

Another option is doing therapy by skype. If you go to ocfoundation.org website

they have names listed there. Not sure how well that would work with such a

young child, but maybe you could talk with them?

Two people you can email directly are - Dr.Jenike - jenike@... (top

international psychiatrist for OCD), and Dr. Penzel - penzel85@...

(psychologist who has treated hundreds of patients with OCD). Both of these

doctors are responsive and very caring and may well have some ideas.

Lastly, you can post a question to any of the doctors on this website, you will

find names and their expertise on the homepage of this site.

Keep posting your questions and concerns, there are many here who might have

some ideas for you. You might make a post " 4yr old with OCD - Help! " or help

with CBT, or something like that.

Warmly,

Barb

>

> Hi

>

> My daughter had a sudden onset of OCD earlier this year age just 4. I

immediately recognised it as OCD when she was kissing spindles, objects, which

quickly descended into total chaos and our lives were turned upside down.

>

> Most of the help I can find is from US parents which has been most useful. In

the UK kids are not prescribed drugs till age 16 and I am being told my daughter

now 5 is too young for CBT. We see a counsellor once a month who I have to

convince my daughter has OCD and not behavioural issues. Our lives are so

difficult and there does not seem to be any help over here.

>

> I am prepared to pay privately but cannot find anyone to help. OCD is either

very rare at this age or just not recognised here. Is there anyone from the UK

that can help.

>

> Also does anyone have any tips on how you get round explaining to other

parents. I don't want my daughter to be treated differently or bullied later in

life. However I am constantly embarassed at parties, when collecting from a

friends house for her extreme behaviour and temper which to anyone else looks as

if I am not parenting properly and have a naughty daughter.

>

> Any tips for how you manage in a social situation? If I reprimand my daughter

she goes absolutely wild.

>

> I also have a son who is 7 and am terrified that this is genetic (My sis in

law has a very mild ocd compared to this!) and he may develop it too.

>

> Any help would be most appreciated.

>