RE: Re: Can OCD symptoms come and go?

[Guest guest]

Our daughter (in retrospect) showed signs of ocd when she was in

preschool. For a few years in school we always joked about her being " an over

achiever " and wrote it off as that. It was not until middle school that we

truly realized it was much more.

Trying to make a long story short - my dd went on meds for about a year,

managed to control the OCD on her own (a dream come true) and has been

med-free ever since. She is now starting her 2nd year of college. We are

beyond grateful. I think about the folks on this board every day. I still

receive posts and now & then reply. Good luck to you & your family.

LT

In a message dated 8/11/2010 9:27:15 P.M. Eastern Daylight Time,

anadesigns@... writes:

Thanks so much for the reply. I also think I saw signs of OCD in my son

was he was very young. And I also thought it was nothing to be too

concerned about. They kind of got better as he got older. But, these are

definitely all new symptoms. I decided to increase his meds just a bit, but

actually to where the doctor wants him to be. I had kept it lower thinking he

was doing better.

Then, he told me tonight that he had been having the bad thoughts all

along but did not tell me. He said he was not scared to tell me, he was not

sure why. But I am not sure he is communicating his thoughts to me

accurately which is part of the problem. He has a hard time with that.

In any case, I hope we can get some answers and I will keep you posted

Thanks again

> >

> > I am trying to keep track of my son's behaviors since he started on

Tenex about 2 weeks ago. I have posted before, but will try to give you a

very brief history so it is not too long of a post.

> >

> > He was diagnosed with TS last year and did not take any meds. The

tics came and went and would get worse during stressful or exciting times.

> >

> > About a month ago, he started to show signs of what I consider to be

OCD related. He has always been a little OCD - but nothing to be concerned

about.

> >

> > This started with him having bad thoughts - thinking bad words and

thinking about hurting our cat, or me or a friend with a knife. He also

started obsessing about thunderstorms and was extremely anxious anytime there

was a threat of one and especially when we got one. He still is like that.

> >

> > This really freaked me out and luckily we had an appt. already

scheduled with the Neurologist. Anyway, we decided to put him on Tenex which

is

supposed to help with the tics and anxiety even though the tics are not bad.

> >

> > Anyway, it seemed to be working and he was doing well, not mentioning

any bad thoughts until this morning. But what I noticed is that he just

went through or is going through a growth spurt. He eats more, sleeps less,

gets more irritable, etc. Along with the growth spurts his symptoms seem

to also get worse, including now, the bad thoughts.

> >

> > Has anyone experienced this before?

> >

> > We are going to a specialist on Monday to talk about the possibility

of Pandas, as past blood work has shown a strep infection and high numbers.

> >

> > Well, it turned out to be a long post anyway - sorry

> >

> > Thanks

> >

> >

> >

>

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Links

[Guest guest]

That's interesting, . He would definitely throw those tantrums when really

young. It was like he was possessed. It would last usually 30 minutes until he

was really crying. Once we heard the different cry, we knew he was over it.

Things are really starting to make sense. Thanks! Now won't I feel silly if

he's diagnosed with something else? I really do believe it's OCD, though.

Steffanie

To:

From: lmatheos@...

Date: Thu, 12 Aug 2010 12:11:13 +0000

Subject: Re: Can OCD symptoms come and go?

When my son was pre-school age, we had what we called " aha " periods. He'd get

super anxious, manic, OCDish, rages at the smallest frustration (hour long

meltdowns, not a toddler tantrum) and once we saw an eye-blinking tic that

lasted for 3 days then went away. Shortly after, he'd reach a milestone - being

able to dress himself, zipper his coat, etc. and life would be calm and good

again.

Doctors, teachers - just shrugged. They'd never heard of all these behaviors

just coming and going. I now understand that there are diseases that wax and

wane and then there are diseases that go into remission and exacerbation. As

mentioned, a wax/wane is like an undulation - things can be better or

worse, but the OCD is generally always there at some recognizable level. Maybe

more manageable, more easily pushed away, but there.

In a remission/exacerbation situation, the pattern is called saw-toothed. It's a

sudden, dramatic spike upward, then a gradual decline. Then it might be

completely gone. No signs of it whatsoever. In my understanding, this is due to

medical conditions, not traditional OCD or traditional TS.

In my son's case, he was eventually diagnosed with Pandas. In his toddler years,

we couldn't see any outward signs of infection. But in retrospect, it was

probably there, maybe an ear infection. Maybe sinus. In Pandas kids, you

sometimes see an initial improvement with an SSRI or dopamine-agonist like

Tenex. Then that improvement often goes away in a short period of time.

My son suffered immensely with tics and I struggled a great deal with accepting

a TS/OCD diagnosis. Medical treatments have helped a great deal. If you'd like

to know more about our particulars, please feel free to email me (there's an

email option next to any member's name when we post). You can also learn more

about Pandas at www.pandaresourcenetwork.org, www.webpediatrics.com or the

support group www.latitudes.org under forums/pandas.

Please keep us updated,

[Guest guest]

I didn't think that at all, . I'm swimming aimlessly in this murky sea

right now, so it's great to hear input from others and to know that we're not

alone. I'm anti medication, but if it can help him live without all this agony,

then I have to consider all options. My husband just says, " Let's medicate

him. " He makes me so angry. He has no desire to understand what's going on and

just wants to mask it. Why don't some people understand that you can put a

bandaid on the cut, but unless you treat the deep infection, the cut will never

heal? My husband is a computer guy, I am the human services person, so we think

very differently. This is really tearing apart our marriage. I just want to

get on the road to improvement before it destroys our family. I can be thankful

we've made it this far after going through the cancer. I do believe in the

right therapy. Again, the meds are the bandaid (that is very necessary in many

cases.) I think the therapy treats the underlying infection--with a lot of

problems, not just OCD. Ugh, onward with this ever so difficult journey!

Steffanie

To:

From: lmatheos@...

Date: Thu, 12 Aug 2010 13:36:53 +0000

Subject: Re: Can OCD symptoms come and go?

Please don't misunderstand. I'm not trying to diagnose or make you feel silly

for pursuing OCD treatments.

In our case, there's a medical condition behind it. OCD is one component of my

sons' disease. His Pandas OCD is exactly the same as traditional OCD (he's had

hoarding, feels right, symmetry, tapping, counting, checking). But in our case,

medical treatments combined with ERP and CBT have been key to improvements. The

medical side removed the " possessed " aspect (we used to call it Blair

Syndrome before we knew it was Pandas).

Certainly pursue OCD treatments, especially CBT and ERP. You know your child

best. Trust your gut.

Best of luck,

[Guest guest]

This is very encouraging, LT.

Steffanie

To:

From: jtlt@...

Date: Wed, 11 Aug 2010 23:16:40 -0400

Subject: Re: Re: Can OCD symptoms come and go?

Our daughter (in retrospect) showed signs of ocd when she was in

preschool. For a few years in school we always joked about her being " an over

achiever " and wrote it off as that. It was not until middle school that we

truly realized it was much more.

Trying to make a long story short - my dd went on meds for about a year,

managed to control the OCD on her own (a dream come true) and has been

med-free ever since. She is now starting her 2nd year of college. We are

beyond grateful. I think about the folks on this board every day. I still

receive posts and now & then reply. Good luck to you & your family.

LT

In a message dated 8/11/2010 9:27:15 P.M. Eastern Daylight Time,

anadesigns@... writes:

Thanks so much for the reply. I also think I saw signs of OCD in my son

was he was very young. And I also thought it was nothing to be too

concerned about. They kind of got better as he got older. But, these are

definitely all new symptoms. I decided to increase his meds just a bit, but

actually to where the doctor wants him to be. I had kept it lower thinking he

was doing better.

Then, he told me tonight that he had been having the bad thoughts all

along but did not tell me. He said he was not scared to tell me, he was not

sure why. But I am not sure he is communicating his thoughts to me

accurately which is part of the problem. He has a hard time with that.

In any case, I hope we can get some answers and I will keep you posted

Thanks again

> >

> > I am trying to keep track of my son's behaviors since he started on

Tenex about 2 weeks ago. I have posted before, but will try to give you a

very brief history so it is not too long of a post.

> >

> > He was diagnosed with TS last year and did not take any meds. The

tics came and went and would get worse during stressful or exciting times.

> >

> > About a month ago, he started to show signs of what I consider to be

OCD related. He has always been a little OCD - but nothing to be concerned

about.

> >

> > This started with him having bad thoughts - thinking bad words and

thinking about hurting our cat, or me or a friend with a knife. He also

started obsessing about thunderstorms and was extremely anxious anytime there

was a threat of one and especially when we got one. He still is like that.

> >

> > This really freaked me out and luckily we had an appt. already

scheduled with the Neurologist. Anyway, we decided to put him on Tenex which is

supposed to help with the tics and anxiety even though the tics are not bad.

> >

> > Anyway, it seemed to be working and he was doing well, not mentioning

any bad thoughts until this morning. But what I noticed is that he just

went through or is going through a growth spurt. He eats more, sleeps less,

gets more irritable, etc. Along with the growth spurts his symptoms seem

to also get worse, including now, the bad thoughts.

> >

> > Has anyone experienced this before?

> >

> > We are going to a specialist on Monday to talk about the possibility

of Pandas, as past blood work has shown a strep infection and high numbers.

> >

> > Well, it turned out to be a long post anyway - sorry

> >

> > Thanks

> >

> >

> >

>

------------------------------------

Our list archives feature may be accessed at:

http://health.groups.yahoo.com/group// by scrolling down to the

archives calendar .

Our links may be accessed at

http://health.groups.yahoo.com/group//links . Our files may be

accessed at

http://health.groups.yahoo.com/group//files .

Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ),

Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), and Dan Geller, M.D.

( http://www.massgeneral.org/doctors/doctor.aspx?ID=18068 ). You may ask a

question of any of these mental health professionals by inserting the words

" Ask Dr.(insert name) " in the subject line of a post to the list. Our

list moderators are Castle, Judy Chabot, BJ Closner, and Barb

Nesrallah. You may contact the moderators at

-owner

.. OCDKidsLoop membership may be accessed at

http://health.groups.yahoo.com/group/ocdkidsloop/ . Our group and related groups

are listed at

http://health.groups.yahoo.com/group/ocdsupportgroups/links . IOCDF treatment

providers list may be viewed at

http://www.ocfoundation.info/treatment-providers-list.php .

NLM-NIH Drug Information Portal may be viewed at

http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp?APPLICATION_NAME=drugp

ortal . IOCDF recommended reading list may be accessed at

http://www.ocfoundation.org/Books.aspx . IOCDF glossary of terms may be accessed

at

http://www.ocfoundation.org/glossary.aspx . IOCDF membership link may be

accessed at http://www.ocfoundation.net/membership/ . Drugs.com pill

identification wizard may be accessed at http://www.drugs.com/imprints.php .

Mayo

Clinic Drug and Herb Index may be accessed at

http://www.mayoclinic.com/health/drug-information/DrugHerbIndex .Yahoo! Groups

Links

[Guest guest]

I agree with you, Heidi. My counselor told me yesterday that sometimes they

need the medication so that the therapy can work. She said that if he does need

meds, then mabye we will see that his counseling can be more effective. It made

sense, and this point, we're desperate to help him.

Steffanie

To:

From: hdvoigt@...

Date: Thu, 12 Aug 2010 14:08:05 +0000

Subject: Re: Can OCD symptoms come and go?

Hi Steffanie,

I know what you are saying about the medication. I ended up deciding to put my

son on medication when it became clear that his OCD was impacting his (and mine

too quite frankly) life to the point that he could NOT even access the therapy

people were attempting to offer him. He is still struggling significantly but

has just worked his was up to the bottom of the " therapeutic " dose recommended

for OCD. I do second guess my decision when I read about the side effects, but

his psychiatrist is VERY nice about explaining ALL questions to me. She has been

seeing him weekly, because she agreed to do med management AND ERP/CBT therapy

with him, which RARELY happens. Because it is a teaching hospital or something,

and because he is so young with OCD and there aren't many kids in VT with it,

she got special permission to do both. Regardless, she is great! So I have to

trust that when she says the timing of his struggles don't coincide with the

increases he has had, and it is more likely he doesn't have enough meds, and

that she pushed him too hard too fast in the ERP therapy... and then he went to

home to be confronted with those exact same limits. That is what she thinks

happened. But I still worry about the meds, but hope she is right. SO if you

have a doctor you trust, and you feel that it is in fact impacting his ability

to function on a regular basis, and will impact his ability to access the

therapy it might be worth thinking about. I am not ordinarily a medication

person either, but I do think there is a time and a place for it.

Heidi

[Guest guest]

, thanks for that. Wouldn't that be wonderful? I remain hopeful but

realistic.

Steffanie

To:

From: paul.jackson@...

Date: Tue, 24 Aug 2010 20:54:08 +0200

Subject: Re: Can OCD symptoms come and go?

Steffanie,

I've only just read your post from Aug 12, hence this late reply.

I read somewhere that medication and OCD is like using crutches after

breaking a leg. You need them in the beginning, but when the leg begins

repairing, you can get rid of the crutches.

Best of luck

[Guest guest]

, I can only speak for myself. I now know I had OCD as a child/teen. It

could be debilitating at times. I had horrible tummy troubles as a result of it

and still struggle with IBS and anxiety now. Somehow I managed to control it

and not let it be seen outwardly--aside from the tummy aches. I avoided so many

social activities because of it. I don't know how I overcame it. Was it

maturity? Was it having more serious life things to think about? I don't know,

but it seemed to improve dramatically after I had children. Knock on wood, it

hasn't reappeared badly. I still touch my fingers in certain sequences and like

the sides of my body to be " even " , but I do pretty well. I also take an

antidepressant and have for years. I don't know if that's it or what it is.

But the reason I ramble is to tell you that I somehow managed to overcome it and

be functional. I no longer allow it to stop me from living.

Steffanie

To:

From: paul.jackson@...

Date: Tue, 24 Aug 2010 21:06:55 +0200

Subject: Re: Can OCD symptoms come and go?

Hi again,

I'm way behind the curve at the moment, but someone wrote (I think it was

) that their daughter " managed to control the OCD on her own " .

I would love to hear more about this, since our daughter has not taken well

to therapy but is, after a period of downtime, getting on with her life.

However, I'm afraid that if we don't help her now to learn how to control

the OCD, it might rear its ugly head again later in life. Any thoughts?

[Guest guest]

I think I said at one time that I managed to control my OCD on my own. I don't

know how, but I think I didn't have a choice. My parents were abusive and not

interested in all at helping me. I hid the anxiety and had horrible

gastrointestinal problems. I can see now that the anxiety was exhibiting that

way. At the time, I was told it was " all in my head. " It was! I was a very

self-conscious kid, so I suppose I hid the things. Most of my compulsions were

things I would say to myself, so no one knew aside from the stomach aches. My

son's is all outwardly, and I know enough that he needs help. I wouldn't want

him to suffer the way I did.

Steffanie

To:

From: pamlatz7@...

Date: Sun, 29 Aug 2010 22:01:24 +0000

Subject: Re: Can OCD symptoms come and go?

This sounds all to familiar to me and yet so mind boggling. My son is not on

meds but Wow what a roller coaster of a ride.!! It seems to come and go or at

least it looks that way. He's good at masking it. I want to hear more about this

from others.

Thanks

Pam L.

>

> Hi again,

>

>

>

> I'm way behind the curve at the moment, but someone wrote (I think it was

> ) that their daughter " managed to control the OCD on her own " .

>

>

>

> I would love to hear more about this, since our daughter has not taken well

> to therapy but is, after a period of downtime, getting on with her life.

>

>

>

> However, I'm afraid that if we don't help her now to learn how to control

> the OCD, it might rear its ugly head again later in life. Any thoughts?

>

>

>

>