Re: Re: New to this and OCD

July 28, 2010

Thanks BJ - he was diagnosed with Tourettes, but never went on any meds as the

tics were not bad.Â I know OCD can go along with it, and the doctor told me

that the Tenex should also help with his Anxieties as well.Â I am still

skeptical and since this is the first medication he is taking, I tought I would

see how it works out.

I want to get him into CBT - but having a hard time finding someone local, who

does not have a months long waiting list.Â We live close to Yale and the clinic

there is great but does not take insurance and is very expensive.Â So, I am

still looking and searching and left message with both therapistsÂ the Neuro

suggested - one is on vacation and the other has not called back as of yet.

Subject: Re: New to this and OCD

To:

Date: Wednesday, July 28, 2010, 10:07 AM

Â

Welcome to the group.

I believe Tenex is for Tourettes, rather than OCD. OCD is typically treated

with SSRI antidepressants, to help stop the thoughts.

Unless they have PANDAS, then you are talking about antibiotics. You say he was

treated before. Are his current symptoms new? Was he recently exposed to

strep?

Tourettes and OCD can go hand in hand. They often exist together. Also, other

anxiety disorders can exist with OCD, since it is in itself an anxiety disorder.

Our son suffers from OCD, GAD, has had panic attacks, and also has one phobia we

know of.

Has your son done any type of therapy? CBT/ERP is the recommended therapy,

whether you are dealing with PANDAS or regular OCD.

BJ

>

> Hi there - my son is 9 and was diagnosed with Tourettes last year. The tics

were not bad and they were really the only symptoms at the time, other than some

minor problems at school.

>

> A few weeks ago, he told me about some bad thoughts he was having and saying

swear words in his head. He was also thinking about knives and stabbing the

cat, and me and someone else.

>

> Of course it really freaked me out, but I tried my best to reassure him that

he would never do these things and they were just scary thoughts.

>

> He has also developed fears of thunderstorms and bees and wasps. The fears

are much worse than ever.

>

> I feel like he has had some OCD tendencies all his life, but again, nothing

major.

>

> We went back to the Neurologist last week and he prescribed Tenex for him

which he started this morning for the first time.

>

> I know it takes a while to kick in, but today the bad thoughts were worse than

ever and he almost wanted to act on them. I think that scared me more than

anything else.

>

> I know from reading a lot on the computer and discussing these thoughts with

others, that he does not really want to hurt anyone, these are just thoughts.

>

> Again, I try to reassure him as much as possible and I am looking into

treatment from a specialist, but I don't know how soon I can get him in to see

anyone.

>

> Unfortunately, I also have issues with my husband and he is very hard to talk

to - especially about things like this. So I have very little support, if any,

at home. I have not even told him the really bad parts or that he is on

medication as of yet.

>

> Anyway, I am hoping that by coming here I can get some answers and some help.

Has anyone had experience with Tenex and OCD? I am trying really hard to relax

him, any other suggestions?

>

> Thanks so much

>

July 28, 2010

Thanks - those are some great ideas, I have read about having him touch

the knife, but I am not sure if he is ready for that yet.Â I don't want to push

him and make it worse.Â My reassurance seems to be helping.Â He hugged me

yesterday and told me I was the best mom in the world.Â That made me feel so

much better, like, hey, I am really helping him Â He has so much going on in

his little head, that I know he has a hard time sorting it all out.Â I am kind

of glad that this is happening over the summer, so we can get a feel for what

works before he goes back to school.

The swear words seem to have almost gone away from what I can tell,Â He told me

he did not think of them once yesterday.Â But, I will keep in mind what you

said about the song - that is actually something I had thought of before.Â It

makes me feel better knowing he is not alone, and I want to tell him that there

are others out there with the same problems so he can feel better.

Thanks again and I really appreciate your advice

Subject: Re: New to this and OCD

To:

Date: Wednesday, July 28, 2010, 12:44 PM

Â

Hi, welcome! So sorry your son is having such terrible thoughts, I'm

sure it upsets him, and you too of course!

I think others have replied about treatment but wanted to throw a few thoughts

out to you.

There are several ways to work on thoughts, you may have read some already.

Until you can find a therapist, you can try to figure out what might work best

for your son.

I was thinking about the swear words -- he's thinking them and feeling anxiety,

etc., for doing that. One way you might work on that is to have him say some;

say them until it doesn't bother him anymore. Hard one in a way, we don't want

them to go around using these words around just anybody, any place, etc., so

still have to guide them (we don't use those words or whatever). But get to the

point that he knows OCD is making him think them, realize it's OCD and don't

feel bad for it, shrug it off...it's just that bossy old OCD making him and

that's what OCD does.... I have a " bit " of a problem that way (but don't

really consider myself to have OCD, the disorder, as it's never been out of

control, etc. And I just know those thoughts will come and am able to

acknowledge them and shrug off (not that I don't sort of " cringe " sometimes at

some of them).

Now - that said about me, I have a son who has bad thoughts, some of them

cursing. And what works for me doesn't work for him. And in my example of

having your son maybe say the words, and so on, no way my own son will do that.

But taking the " power or control " away from OCD, not getting upset/anxious,

helps - just have to figure out a way that will work for your child to get to

that point....

With knives and thoughts -- exposure can be related to the knives. If they are

avoiding them, having them stand in the doorway of the kitchen (if they were

afraid to enter it), having them near a knife, having them touch one, having

them hold one while near you, having them touch you/object they fear/have

thoughts of stabbing....

Just some quick thoughts, I know we've had others here with this same type

behaviors, they hopefully can tell you what worked for their child or what the

therapists suggested.

Even making it a bit " fun " can help, make up a song with swear words to sing....

single mom, 3 sons

, 21, with OCD, Aspergers, dysgraphia

>

> Hi there - my son is 9 and was diagnosed with Tourettes last year. The tics

were not bad and they were really the only symptoms at the time, other than some

minor problems at school.

>

> A few weeks ago, he told me about some bad thoughts he was having

July 29, 2010

Thanks Kara - I am calling him today.Â I hope there is not a long waiting list

and they take my son's insurance.Â He sounds like a great doctor.Â I have

never heard of that study.Â I will look into it.Â With my father in the

medical field, I hope he can guide me as well.Â He is actually an

immunologist.Â He is not directly involved in any of this, but still will be a

great help to me I am sure.

Subject: Re: New to this and OCD

To:

Date: Thursday, July 29, 2010, 7:17 AM

Â

- We travel 4 hours to see Dr. Bouboulis in CT. You have one of the

experts right there in your back yard! Please make an appointment. My guess,

based on the fact that there is strep in your child's history, is that he will

absolutely pursue it further and do an immune workup to see if there are other

autoimmune issues.

The other thing...have you considered participating in the Cunnigham Study?

Having results from that can also be very helpful in determining a path to

follow.

Kara

>

> I only have a second as I am tired and leaving for CT in the morning. She had

HORRIBLE OCD (mostly reassurance questions and thinking she was doing something

weird and repeating things, like walking steps and brushing teeth, and touching

things a number of times) And this fall after 3 years of OCD she developed

vocal and motor tics. The IVIG (intravenous immunoglobulin) gives her good

antibodies to help her fight strep and it also sort of resets the immune system

to make normal antibodies instead of the bad ones (autoimmune process, own

antibodies attack your brain). You can read more about it on webpediatrics.com

It is also a significant anti-inflammatory, which helps kids with this condition

as inflammation in the brain is part of the problem. Dr. Bouboulis in Darien CT

is my night in shining armor. Got to run, please read more about it on that web

site or www.pandasresourcenetwork.org Never give up!

>

> From: [mailto: ]

On Behalf Of Analiese Yakubik

> Sent: Wednesday, July 28, 2010 1:35 PM

> To:

> Subject: RE: New to this and OCD

>

> Hi - what is IVIG? What symptoms did your daughter have that have been

helped with this treatment - I am really curious now as I am in CT and can get

to Darien with no problem. I appreciate your help.

>

> Thanks

>

July 29, 2010

Thanks again Kara, I will check out the websites for sure.

Subject: Re: New to this and OCD

To:

Date: Thursday, July 29, 2010, 9:21 AM

Â

HI ,

Look under the " research programs " on this link

http://www.pandasresourcenetwork.org/

There is a summary there of what Dr. Cunningham does. To participate you do just

send her an email and give some background about your child. They will send a

kit for you to have your child's blood drawn at a local lab. You then ship it

back immediately (do the draw on a Monday or Tuesday so it gets there before

Friday). It takes a few weeks to get the results back. If you can have those

results before your appointment with Dr. B, it would be ideal.

The Cunningham test is taken very seriously by PANDAS experts, including Dr. B.

Unfortunately it is still in the study phase and is no longer funded by a grant.

So the cost can be prohibitive for some ($400). But personally, it was the best

$400 we ever spent. It helped us make a decision at a time when we were really

struggling about which path to follow: genetic OCD and SSRIs or PANDAS OCD and

antibiotics.

You said your father is a doctor. Dr. Bouboulis is also an immunologist. Maybe

you should bring him with you to the appointment! I'm sure he'd be an asset to

have there. You both may also want to look at the research studies section on

the website above (under the " about " section. It links to multiple studies that

have been done on PANDAS.

Good luck! Let me know if I can help in any other way.

Kara

>

> >

>

> > I only have a second as I am tired and leaving for CT in the morning. She

had HORRIBLE OCD (mostly reassurance questions and thinking she was doing

something weird and repeating things, like walking steps and brushing teeth, and

touching things a number of times) And this fall after 3 years of OCD she

developed vocal and motor tics. The IVIG (intravenous immunoglobulin) gives her

good antibodies to help her fight strep and it also sort of resets the immune

system to make normal antibodies instead of the bad ones (autoimmune process,

own antibodies attack your brain). You can read more about it on

webpediatrics.com It is also a significant anti-inflammatory, which helps kids

with this condition as inflammation in the brain is part of the problem. Dr.

Bouboulis in Darien CT is my night in shining armor. Got to run, please read

more about it on that web site or www.pandasresourcenetwork.org Never give up!

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > From:

[mailto: ] On Behalf Of Analiese Yakubik

>

> > Sent: Wednesday, July 28, 2010 1:35 PM

>

> > To:

>

> > Subject: RE: New to this and OCD

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > Hi - what is IVIG? What symptoms did your daughter have that have

been helped with this treatment - I am really curious now as I am in CT and can

get to Darien with no problem. I appreciate your help.

>

> >

>

> > Thanks

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

July 29, 2010

I am looking for some advice also related to my son's thoughts.Â They seem to

be triggered when I get angry with him.Â Just this morning, he kept asking me

to do something and I was working on something and asked him to wait, but he

kept it up, so I kind of snapped at him.Â Immediately, he told me he had a bad

thought of hurting me.Â I know he does not like when I get mad, but I can't

help it sometimes.

Any thoughts on this?Â I told him it was OK and I know he won't hurt me, and he

seemed to be OK in a few minutes, but if this is a trigger, what can I do to

help him?

Thanks