Your input on OCD and Zoloft please?

[Guest guest]

Hello all,

I just found this group and subscribed to it.

I was told by my son's ped. neuro a couple of days ago that he may have OCD.

Here is a little background on my son so as to compare notes with other

parents

here who may see a similarity.

My son NetChild is 5 years old. He has delayed language, with receptive a lot

better than expressive. He is beginning to talk more, though mostly it is

making requests in short phrases.

The latest of 3 MRI's we had done showed late myelinization

My son did not talk at all until 2.5 years, and even then we had to actively

teach him. Though he had speech (could babble), he couldn't even imitate

simple

words, struggling quite a lot.

This has gradually improved, and he has made a lot of progress, though we

always worry it is not fast enough.

I think right now our biggest enemies might be his inattention and

obsession/compulsion. He is so inattentive, you can not finish a sentence

before he has started to walk or look away.

He has a need to move his hands constantly, usually holding something in his

left hand and banging it with his right palm, or something in his right hand.

If you ask him for the item he is banging with, he would give it to you, but

then would tap the four fingers on his left hand with his right palm, or his

left thumb with his right palm.

He would stop if you asked him to, but then he would go right back to it a

second later.

It is as if he cannot help himself. He has an inner need to do this. We spent

over 3

years seeing neuros and researching autism, but that is not him.

He is with you 100%, is loving and communicative and responsive.

Today, we visited a ped. neuro (our 6th one) who said OCD probably best

describes my son and she prescribed zoloft.

If anyone would like to share their experiences with this medication, I would

appreciate it.

Also, does any of your kids do things similar to my son.

Thanks again,

NetDad

[Guest guest]

My son's experiences were nothing like those of your son, but OCD has

many variations. My son was slow motor wise, but very early verbally.

We took him to a psychologist at 5 y.o. because of excessive fears. She

was useless and made no diagnosis. Took him to a different psychologist

at 8 y.o. Equally useless and no diagnosis. At 13 y.o. he had a total

meltdown while we were in Europe, so we took him to a psychiatrist when

we returned and got the diagnosis of OCD and ADD. They often go

together.

Never tried Zoloft, but people are very individual in their responses to

medication.

Good luck with your son. Hope you find something that helps.

Judy

intrntdad@... wrote:

>

> From: intrntdad@...

>

> Hello all,

>

> I just found this group and subscribed to it.

>

> I was told by my son's ped. neuro a couple of days ago that he may

> have OCD.

>

> Here is a little background on my son so as to compare notes with

> other

> parents

> here who may see a similarity.

>

> My son NetChild is 5 years old. He has delayed language, with

> receptive a lot

> better than expressive. He is beginning to talk more, though mostly it

> is

> making requests in short phrases.

>

> The latest of 3 MRI's we had done showed late myelinization

>

> My son did not talk at all until 2.5 years, and even then we had to

> actively

> teach him. Though he had speech (could babble), he couldn't even

> imitate

> simple

> words, struggling quite a lot.

>

> This has gradually improved, and he has made a lot of progress, though

> we

> always worry it is not fast enough.

>

> I think right now our biggest enemies might be his inattention and

> obsession/compulsion. He is so inattentive, you can not finish a

> sentence

> before he has started to walk or look away.

>

> He has a need to move his hands constantly, usually holding something

> in his

> left hand and banging it with his right palm, or something in his

> right hand.

> If you ask him for the item he is banging with, he would give it to

> you, but

> then would tap the four fingers on his left hand with his right palm,

> or his

> left thumb with his right palm.

>

> He would stop if you asked him to, but then he would go right back to

> it a

> second later.

>

> It is as if he cannot help himself. He has an inner need to do this.

> We spent

> over 3

> years seeing neuros and researching autism, but that is not him.

>

> He is with you 100%, is loving and communicative and responsive.

>

> Today, we visited a ped. neuro (our 6th one) who said OCD probably

> best

> describes my son and she prescribed zoloft.

>

> If anyone would like to share their experiences with this medication,

> I would

> appreciate it.

>

> Also, does any of your kids do things similar to my son.

>

> Thanks again,

> NetDad

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

>

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

> You may subscribe to the OCD-L by emailing

> listserv@... .

> In the body of your message write:

> subscribe OCD-L your name.

> The Archives and Links List for the OCD and

> Parenting List may be accessed by going to

> / .

> Enter your email address and password.

> Click on the highlighted list name and then click on message archives

> by month or links located in the toolbar.

[Guest guest]

In a message dated 3/13/00 8:26:21 AM Eastern Standard Time,

j.monnens@... writes:

<< What is

your son's reaction when you have him stop the activity?

>>

Jule,

if the activity he was doing was banging a ball for instance, he tries to

charm you into giving him the ball back so he can bang it again. He does this

by coming to you, verbalizing " ball please " , charmigly smiling and hugging,

being playful, and reaching for the ball you are holding away from him and

trying to " steal " it. If you resisted all the way through and you don't give

it to him, he asks for something else, he then finds another thing to ask

for, " put on shoes, Car please " , [Let us put on shoes and go for a ride in

the car], or some other thing or activity. Or, he would find another thing to

bang with until you took that away from him too. One thing he NEVER does,

however, is throw up a tantrum for something he wants. I do not know if that

is what you are thinking about.

If he was " playing " with banging two blocks together, which he knows I do not

like him to do, even before I come into the room where he is, when he hears

my footsteps he throws the blocks away and waits for me as if he wasn't doing

anything bad. He sometimes hides them behind his back if there wasn't enough

time to throw them away, and looks at me with that mischevious smile any five

year old would have on his face.

As far as ASD, I wrote up something starting with this paragraph and upon

reviewing it, was afraid of the possibility of remotely offending you or

someone else with something I said -- especially when we are all only trying

to help each other -- so I saved it somewhere else. Like I said, I have been

reading about it for 3 years and have some thoughts on it. I will see if I

can take time to clearly state my thoughts without emotion and then post it

if I am satisfied with it, which I doubt I will be.

Like you, I too am not entirely convinced that my son's case is OCD, but I am

only trying to look at everything. Interestingly, on the MGH (Harvard

niversity web forum) someone congradulated me on describing OCD very well

with my son. Well...

Thanks again.

NetDad

[Guest guest]

Netdad:

What you are describing may or may not be OCD. Are any of the docs you

have seen specialists in ASDs (autism spectrum disorders) or OCD? What is

your son's reaction when you have him stop the activity?

My 11 yo son was also expressive language delayed. He was dx ADHD in 1st

grade, and developed full-blown OCD in 3rd. Last spring he was diagnosed

with PDD-NOS. He, too, has always been a loving and communicative child.

Children on the spectrum may present in a variety of ways, not just in the

classic sense of autism. And while PDD may be considered something of a

" grabage can " diagnosis, I feel that for my child it ties up all the

oddball problems he has had and makes sense of them -- language delay,

problems with syntax, written expression LD, ADHD, other learning

differences and even the OCD.

I'm not convinced that what you describe is OCD. I'm sure you'll hear from

others on the list that are more knowledgeable -- Kathy and , for

sure. But I would make sure that (even though you have already seen many

docs) that you find one (whether neurologist, child psychiatrist, or

neuropsych) that works with children with ASDs and/or OCD.

Regarding meds -- Zoloft is one of the SSRIs prescribed for OCD. I do not

have experience with that particular one. My son was initially on Luvox,

but it made him aggressive. He is now on a cocktail of Prozac, Risperdal

and Zyprexa.

Welcome to the list.

Jule in Cleveland

[Guest guest]

Dear Jule and all,

All I wanted to say about ASD was that I do not find it a very useful

diagnosis, even if it were true, since the medical community has such a

gloomy prognosis for the kids who are supposed to fall in that category,

irrespective of how well many of the kids do. I find this sad.

I also think the PDD umbrella is getting simply too big and meaningless

including within it people like Albert Einstein and Bill Gates.

Another thing is many doctors may be misusing the PDD label. One of the

neuros we visited, for example, said my son fell in the PDD umbrella, even

though she said his language problem is a result of the delayed myelin. In

other words, she is saying delayed myelin comes under the umbrella of PDD.

I do not know the category my son falls under, even after visiting 6 ped.

neuros, many of them knowledgeable, who are split along the middle whether he

is PDD or not, but I really do not care, even though as a parent, you have a

gut feeling which tells you when your child is not something. I work with him

intensively, and have the highest expectations for him. The sky is the limit

as to what he can achieve.

Thanks to all who responded with the zoloft info also, and if there are

others, i would love to hear from them too.

Thanks again,

NetDad

[Guest guest]

Dear Jule,

I wrote,

<<All I wanted to say about ASD was that I do not find it a very useful

diagnosis, even if it were true, since the medical community has such a

gloomy prognosis for the kids who are supposed to fall in that category,

irrespective of how well many of the kids do. I find this sad.

>>

Any you replied:

<< I don't necessarily disagree with you about the size of the PDD umbrella,

but I heartily disagree with your implication that a diagnosis of PDD is a

gloomy one. >>

That was what I was afraid of. You misunderstood me completely. I did not

imply that the prognosis is gloomy. What I said was I disagree with the

medical community that paints a gloomy picture, inspite of the wonderful

outcome many kids have.

My first instinct was correct. I should have kept my mouth shut.

Sorry to all who took offense.

NetDad

[Guest guest]

Internet Dad:

I don't necessarily disagree with you about the size of the PDD umbrella,

but I heartily disagree with your implication that a diagnosis of PDD is a

gloomy one. Ditto for OCD and all the other labels. I am my son's

staunchest supporter and advocate. He does very well in school and has

overcome obstacles that would have caused other kids to flounder. On this

list is a wonderful group of parents who struggle every day to help their

children reach their potential and who support one another in that goal.

As far as diagnosis goes, I almost don't care what the label is as long as

that label serves the purpose of getting my son the Free and Appropriate

Education to which he is entitled.

Jule in Cleveland

[Guest guest]

HI Netdad:

You bring up an important issue, how we parents feel about the labels that

get attached to our kids. When I first realized Steve has OCD, I was

overwhelmed with a powerful sense of horror and fear, literally I felt as

if aliens had taken over my wonderful child. For a time I could not even

tell my husband and children what was up, I worried about how to break it

to them. I knew nothing about OCD and did not know what to do for my family.

Slowly I would tell them that Steve has OCD and he needs to see a doctor.

Not knowing what that was my family did not share my fear and horror at

first. Little did we know that things were to get a whole lot more

horrible and fearful.

Sometimes I am amazed at the calm acceptance and ease with which I can

think of Steve having OCD, and his other alphabet soup now. Of course

there has been a lot of grieving along the way, a lot of hard work to get

to this place.

We have also had docs who were incredibly negative about his prognosis.

Docs are trained in pathology, not in living with limitations and how

people can soar despite these problems. We have learned not to put too

much stock in the prognoses uttered by some professionals as they have more

often than not, not been helpful indicators of what actually has been

possible.

Steve's psychologist works in a clinic for autistic kids and he has been

very encouraging and helpful (Steve's doc is a specialist in Asperger's).

He is also realistic and supportive. As you can see these labels fit many

different people with different levels of success, happiness and

achievement in life. What has helped me is to adopt the philosophy to

build on strengths not to focus on weaknesses in my child. There is so

much negativity around these kinds of problems that I am sure I can be

accused of being a Pollyanna, but this is what helps me through these

struggles.

Labels help us to get the right kind of help for our kids, they do not do

much to help us parenting our children. Focusing on our child and their

abilities, not on their alphabet soup, is what helps us to become

extraordinary parents of our kids who have special needs.

Steve takes Paxil not Zoloft. My dad who has Alzheimers takes Zoloft and

it really helps with his mood, so if Paxil were to stop working for Steve I

would like him to try Zoloft.

Your son is very lucky to have you working so lovingly with him. Your love

and commitment will help him rise to your expectations. Take care, aloha,

Kathy (H)

kathyh@...

At 04:16 PM 03/13/2000 -0500, you wrote:

>From: intrntdad@...

>

>Dear Jule and all,

>

>All I wanted to say about ASD was that I do not find it a very useful

>diagnosis, even if it were true, since the medical community has such a

>gloomy prognosis for the kids who are supposed to fall in that category,

>irrespective of how well many of the kids do. I find this sad.

>

>I also think the PDD umbrella is getting simply too big and meaningless

>including within it people like Albert Einstein and Bill Gates.

>

>Another thing is many doctors may be misusing the PDD label. One of the

>neuros we visited, for example, said my son fell in the PDD umbrella, even

>though she said his language problem is a result of the delayed myelin. In

>other words, she is saying delayed myelin comes under the umbrella of PDD.

>

>I do not know the category my son falls under, even after visiting 6 ped.

>neuros, many of them knowledgeable, who are split along the middle whether

he

>is PDD or not, but I really do not care, even though as a parent, you have a

>gut feeling which tells you when your child is not something. I work with

him

>intensively, and have the highest expectations for him. The sky is the limit

>as to what he can achieve.

>

>Thanks to all who responded with the zoloft info also, and if there are

>others, i would love to hear from them too.

>

>Thanks again,

>NetDad

[Guest guest]

Hi NetDad, welcome to the list.

> My son NetChild is 5 years old. He has delayed language, with receptive a

lot

> better than expressive. He is beginning to talk more, though mostly it is

> making requests in short phrases.

My daughter experienced an abrupt onset of OCD a month before her fifth

birthday (she's 6 now.) She had precocious language development, both

receptive and expressive. She hit other developmental milestones at the

typical ages.

> The latest of 3 MRI's we had done showed late myelinization

I'm sorry I don't know what this means. My daughter has not been evaluated

by a neurologist.

> I think right now our biggest enemies might be his inattention and

> obsession/compulsion. He is so inattentive, you can not finish a sentence

> before he has started to walk or look away.

My daughter is of course obsessive and compulsive, she also is somewhat

inattentive though this has come on more recently. I have read that OCD and

attention deficit disorder can occur together, and of course a child who is

paying attention to obsessional thoughts can seem " disconnected " and

inattentive.

> He has a need to move his hands constantly, usually holding something in

his

> left hand and banging it with his right palm, or something in his right

hand.

> If you ask him for the item he is banging with, he would give it to you,

but

> then would tap the four fingers on his left hand with his right palm, or

his

> left thumb with his right palm.

> He would stop if you asked him to, but then he would go right back to it a

> second later.

> It is as if he cannot help himself. He has an inner need to do this

My daughter has developed several banging, drumming, tapping and twirling

compulsions or tics. She also can stop when asked to or distracted from it,

but soon is at it again. She often seems unaware she is doing these things

until it's brought to her attention.

> Today, we visited a ped. neuro (our 6th one) who said OCD probably best

> describes my son and she prescribed zoloft.

> If anyone would like to share their experiences with this medication, I

would

> appreciate it.

My daughter has taken Zoloft for several months with few side-effects. It

is somewhat energizing in her, but it seems every child has his/her own

reaction to each of the SSRIs and it's difficult to draw conclusions from

others' experience. I do know generally it's a good idea to start with a

low dose and slowly raise it to a therapeutic level, this minimizes

side-effects (but does require a good deal of patience.)

Hope this helps, good luck to you and your boy.

Kathy R. in Indiana