Cognitive Behavioral Therapy for OCD ~ Pls share experiences

hi Laura!

I’m sorry to hear this has come up ! I did some research in this area when my son started having tics 2 years ago b/c tourettes and OCD are related. I found a web site I found helpful.

http://brain.hastypastry.net/forums/forumdisplay.php?s=f138b60a40e9fef6c8fe369a3dcd7441&f=253

Alot of parents on this site talk about alternative therapies including vitamin supplements to treat the symptoms of tourettes and OCD. We also put our son in psychotherapy (but not CBT) to address some of his obsessional traits.

I do know one family who’s child has severe OCD and they have found CBT to be very helpful. I think its a well documented way of treating OCD.

I’d also look into PANDAS which is the tic disorder that erupts suddenly after exposure to strep. I *think* strep can be a trigger for OCD symptoms too, and since you said it came on abruptly its worth looking into. Our neurologist said he routinely prescribes antiobiotics when kids have a sudden onset of these disorders.

Keep us posted!!

Hi Karen,

Thanks for sharing that information. I do suspect my son may have PANDAS because the severe symptoms started following strep. He had a sore throat and illness around his birthday (late May). Although strep wasn’t confirmed at that time, he was put on antibiotics for possible sinus infection the first week in June. In late June early July symptoms started up. We began Lexapro and symptoms only climbed quickly— in like a one week period! And I do remember the day it started!!!

Since then life has been pretty insane. My son even had some “tic-like” behavior. Finally, a few weeks ago, I had some blood work done on my son and asked to check ASO-titer (which checks for strep antibodies). The result was abnormally high levels. This doesn’t confirm PANDAS, but it does seem suspicious. I brought the pediatrician information about PANDAS and she gave us a prescription for Amoxicialln (10 days). I do think it has helped quite a bit, but not entirely. We’re now at the end of our 10 days and I’m not quite sure what to do at this point. I guess if he starts to get worse we’ll have a better idea that maybe it actually is PANDAS. In the meantime CBT makes a lot of sense. I hope your son is doing well!

Laura,

My ds had PANDAS with mostly Tourettes symptoms, but some OCD types behaviors as well (sometimes it’s hard to tell which is which). The good news is that if it’s PANDAS (and a sudden explosion of behaviors whose onset you can pinpoint to the day sure sounds like PANDAS), it’s likely the symptoms will subside within a couple of months. Bad news, is if he gets re-infected with strep, the symptoms will linger much longer. My ds took three years to recover from his fourth infection, which was terribly incapacitating—my ds could not go 20 seconds without ticcing, including in his sleep.

CBT helped enormously. According to his therapist, it works better for OCD than for Tourettes, but he had had some success with PANDAS kids. Ds did CBT for a year—a very long time for this type of therapy, but we did achieve a cure and without medication. Before CBT he took Prozac, with several adverse side effects.

While CBT can be enormously helpful, it definitely is not an easy route. The therapist recommends ways of doing CBT, which mostly you will have to administer. What you have to do can be quite heart wrenching for a mother.

Beyond CBT, after my ds’s fourth infection, I switched pediatricians and the new one put him on antibiotics prophylactically for two years to prevent further strep infections. This is controversial, but those criticizing the practice probably don’t have suffering dc. (I would not have done this for mild symptoms.)

The National Institute of Health has done most of the research on PANDAS. You can find out more from their website. Good luck.

FOr what its worth, we did prophylactic antibiotics for strep throat that we couldn’t clear from my son’s system when he was 5. We ended up removing his tonsils eventually. Interesting though, that he had this persistent strep infection and later tics? Who knows how these infections effect our kids. I wouldn’t hesitate to do a long course of antibiotics if I had a child suffering from PANDAs related tics or OCD.

Mariedc,
Thanks for that information! It’s helpful to know this won’t be easy and it can be heartwrenching. Although, quite honestly, living with these symtpoms is extremely difficult. It affects my family practically all day, every single day.

For awhile I had my son on Lexapro, but it made no difference. My son’s symptoms escalated even while increasing the dosage. So we slowly weaned him off it. I don’t have him on any medication, except for the Amoxicillan which he recently finished. I’m curious to see if symtoms get worse —although I dread the idea as well!

Did your son completely recover with antibiotics, or did they just reduce symptoms? Even though I believe antibiotics helped lessen my son’s symptoms he still has some of the more severe obsessions.

Did you ever have any blood tests to help determine PANDAS (like Dr. Aristo Vojdani’s blood panel?).

Karen,
The idea that a bacteria like strep could possibly do this to our kids really is mind-boggling. I think the lesson here is to treat strep pretty aggressively so something like this doesn’t have a chance to happen. Although I believe I read something about a genetic marker that makes only a certain population of children vulnerable to this. Not every child is at risk for this.

Laura,

The antibiotics did not cure the OCD. The reason he went on them was to stave off future strep infections. If he had had another one, we were pretty much looking at him facing ever stronger and longer lasting attacks of OCD.

I would attribute the cure to a combination of time and the CBT. The doctors were generally pretty encouraging that Pandas tends to wear off in later adolescence, if it hadn’t become chronic. (Son’s response when I told him this,”But that means I’ll never have enjoyed being a kid.” one more thing in the heart wrenching department.) I am very convinced that his last outbreak (his fourth, with each stronger and more longer laster than the previous) would have persisted far longer than the 3 and a half years it lasted without CBT. Definitely it cured him for that virulent outbreak. But if he had come down with strep again, we would have had to start all over again. That’s where the antibiotics came in.

We had problems with the medication he was given, Prozac. But I felt there was no alternative at the time as we did not know about CBT. I posted a response to Michelle on problems she was having with an OCD child in her class on the teaching Board recently. You can read that to see what I wrote on some of the symptoms. I also posted a bit on CBT.

With regard to the genetic marker, yes that is the working hypothesis. They have noticed that PANDAS tends to run in families susceptible to rheumatic fever, which has been known to be caused by a genetic predisposition since the 1920’s. In a very simplified form, rheumatic fever is caused by strep antibodies attacking the heart, while in Pandas, they attack a part of the brain, probably the basal ganglia. Two years of prophylactic antibiotics is standard care for children who have had rheumatic fever because of the danger of a new attack of antibodies on the heart. There is also some evidence that chicken pox can cause problems. (My ds’s first symptoms came after a bad case of chicken pox. I put it down to kids sometimes doing weird things, in another words totally normal. I had not yet learned to live by the maxim of Moody in Harry Potter: constant vigilance.)

Since your ds’s outbreak is so new, you might consider enrolling him in an NIH study. (You can find out if they are looking for study subjects on the NIH website that deals with Pandas.) They do not accept any dc with a hint of autism or aspergers. We went for the interview, where they diagnosed my son based on the extensive evidence of behaviors immediately following the four outbreaks. No blood testing had been done of course—ds’s pediatrician at the time thought the idea was crazy as was, clearly, my ds.

He was rejected for the study ultimately because they judged his case too chronic. Through all of this, that was my single most depressing day. When I got back from the hospital I simply couldn’t face going back to work. My son was 11 and the NIH was telling me I could expect this to continue indefinitely. I felt there was no way out of the hole. But we persisted with the CBT and by the time he was 12 and a half he had no more overt symptoms. Some small things persisted for a while, but now he is 15 and he is symptom free. He will never be the most flexible guy and occasionally he will get stuck on an idea or way overuse a stock phrase, but this is all manageable.

But I digress. My point was that NIH likes new cases, not chronic ones, for its studies. You can just call them up and they will send you the papers to fill out, which does take a bit of time. But if your ds is selected as a candidate, they will pay for you and your ds to fly to Bethesda MD and stay there to be interviewed. Getting an NIH diagnosis is very helpful. It raises the dx from a mere opinion of the local doctor (whom the schools may suspect will say anything for his/her patients) to an endorsement of a medical disorder from a national governmental organization.

Even though I am from DC where people tend to be very blase about these things, an NIH dx carries weight. This is useful in dealing with the school staff, many of whom will secretly believe that problems of this degree must be induced by bad parenting. Being able to tell them that this is caused by strep (they will remember all the times they and their kids had strep and silently thank God nothing bad happened to them) and verified by the NIH which believes that this is a devastating enough disorder to be spending tax payer’s money on research is very helpful. Also, for you to meet with the teachers fully confident that the disorder is the result of an infectious disease you and your ds had no control over really helps the discussion. Once I got this medical dx, my conversations with the principal and the teachers improved vastly, and to a one, they were very kind and understanding. (This could have happened to their kid!) Plus, they became very cooperative in alerting me to any strep outbreaks in the school, so I could keep my ds away. The further you have to fly, the more impressed they will be.

marie, I just read your post with great interest.

We attribute my son’s neurological issues to the case of neonatal chicken pox he had. (We have no history of learning problems in our family, although we do have some family members with anxiety and some OCD traits. But nothing that is diagnosed or requiring intervention.) He exhibited certain rigid behaviors and maybe a mild transient tic as a toddler. When he was 5 he had chronic strep that we couldn’t clear with an escalating course of antibiotics. He hasn’t had strep since we removed his tonsils, but our neurologist believes in the strep/tic/ocd connection and said if we see another abrupt onset of tics he would treat with antibiotics.

I’ve always felt that my son is somehow neurobiologically sensitive to things that don’t bother other people. Maybe he does have a genetic predisposition that the chicken pox enhanced or triggered. Maybe the chicken pox created something. We don’t really know.

The way he got the chicken pox is a little interesting too. I never had it as a child , nor did my siblings. I contracted it when I was 9 months pregnant and the infectious disease person we saw when I gave birth said your immunities are low when you are that pregnant. I saw my siblings the night I went into labor (we even ate off of each other’s plates!) but they didn’t get it from me that night.

A few years later my brother’s son had the chicken pox vaccine and my brother caught it from him which is NEVER supposed to happen. His doctor found the whole thing so odd it was reported to the NIH.

So the one thing I have learned from this is that immune systems are tricky and these viruses are tricky too.

Karen,
About the chickenpox. When I met with Susan Swedo, the mother of all Pandas research and an incredibly kind person, she said she was very interested in having my ds in the study because of the chicken pox. She said they had noticed that a large number of the patients they were seeing reported either very severe cases of chicken pox (my son’d case; he was practically comatose for ten days) or very severe reactions to the vaccine. She said they suspected that there could be some connection with chickenpox, but everything was very tentative at that point.

I’m going to have to follow this. My son had a very mild case b/c we treated him prophylactically with anti-viral meds once we realized that I had it . But the whole thing was screwy. Thanks for the info.

Laura,
Just looked at the NIH website. Darn, they are recruiting new cases, but you have to live within a 4 hour drive of the NIH. There is a FAQs on the website and it encourages treating the OCD as soon as possible with medication or CBT and cite a study showing the best results with a combination.

Since medication hasn’t helped, it looks like you should be finding yourself a CBT therapist. And from personal experience, I would in any case go for CBT before taking the medication route. Please let me know if you have any questions—I have had six years of experience dealing with this and unintentioanlly made many mistakes along the way.

Marie -

I have a question for you regarding CBT vs. regular therapy for a child like mine. He doesn’t have OCD, but he can get stuck on a topic, train of thought etc. We think this is what happens when he fails to pay attention in school - he is simply thinking his own thoughts. We’ve avoided medication for ADD for a variety of reasons , including the fact that they could exacerbate the anxiety/obsessional traits we are seeking to minimize.

Would CBT be overkill for something like this?

Marie,
Thank you SO MUCH for that information. And also, checking into the NIH study for me. Quite honestly, my son probably wouldn’t have been accepted. He does have a “hint” of autism even though there’s no firm diagnosis and professional opinion differs tremendously.

You’ve actually met with Susan Swedo!!! How interesting! Fortunately we do have a very good psychologist who specializes in anxiety disorders (a univeristy director/researcher). So I think we’re heading in the right direction. I’m glad to hear CBT and time helped your son. That gives me a lot of hope.

Please tell me. What were your biggest mistakes? I completely understand how easy it is to unintentionally make them. My biggest one so far is supporting avoidance. And that’s almost impossible not to do. This is an amazingly difficult disease. In our case, the fluctuations are like a crazy rollar coaster ride. We just do non-stop breathing exercises (I do these with my son to encourage correct breathing and it’s like I’m preparing for Lamaze!).

My son had the Chicken Pox vaccine when he was an infant. (He was actually the first child in our pediatrician’s office to receive it since it had only just become available). But my daughter had a very severe case of chicken pox (I was pregnant with my son at that time). I don’t remember my son having any difficulty with the vaccine.

Karen,
If you feel your son’s anxiety and obsessions are having an impact on his life, you might want to at least call a few therapists that do CBT and ask further about this. It can’t hurt!

Karen,
I agree with Laura. This sounds perhaps a little too elusive to address with cbt, but I’d certainly contact a therapist or two to see if they could address it.

Laura,
My number one mistake was not going for CBT immediately (didn’t know it existed). Number two was sticking with a pediatrician who simply thought my ds was crazy and who was totally unhelpful for two years after I knew there was a real problem. Number three, and this was actually number one in some ways in terms of dealing with the disorder, was rearranging our household to accommodate ds’s aversions to a number of triggers.

The sight of tissues set off a reaction, so we hid them. Certain words triggered tics so we didn’t say them. This was very major as this included any words that contained the syllables to and do, the long oo sound when preceded by most consonants, the syllable par etc. This was a list of 100 very common words. We arranged the way we said things to avoid using the offending sounds and substituted words like celebration for party. We were speaking in effect a parallel language all the time at home. I stopped taking him to church because the words God, Jesus, and Lord made him tic (Christ for some reason was okay). He would become very angry if we used a word that he knew that we knew triggered tics

He did not become angry at school or elsewhere. Also, because the words were in his dreams, he ticced all night long in his sleep. During the day, just having a thought with one of these words would also trigger tics. I would guess that he did not go more than twenty seconds without ticcing. The tic became so intense in strength that he was breaking open his skin and bleeding. All of this was in addition to a bunch of other tics/OCD behaviors, many of which became transfigured into something less obvious over time. Then there was the skin picking, probably triggered by an adverse reaction to medication.

We had defined normal down very low, way too low actually. This was another big mistake. Each time I’d say, we can learn to live with this new thing; after all we’ve learned to live with all the other things. Just dealing with this everyday became so difficult and high maintenance we cut ourselves off from almost all outside social contact. Another mistake. Ds’s sister didn’t get nearly the amount of attention she needed (although I did faithfully read to her a half hour every night and stuck to this as the bare minimum I wouldn’t go below). On top of this, we were trying to keep ds in passing grade mode at school and deal with with auditory processing disorder. We were overwhelmed and just barely coping for several years. If you find yourself in this position, it’s a mistake.

But ticcing so hard it caused ds to bleed was it for me. That was my rock bottom. I had simply come to something that I just couldn’t learn to live with. That pushed me to look for some other approach and I discovered CBT.

As we were to learn from the cbt therapists, our constant accommodation was about the worst thing we could have done. To overcome the tics (OCD) the child must be constantly exposed to the trigger and learn to suppress the response. This was difficult; going back to speaking normally no matter how angry it made ds. Constant vigilance over emerging tic/OCD behaviors and having no mercy in allowing them to develop. Doing the CBT itself. All very difficult, but the only thing we had to possibly get us out of our three year nightmare with this so we did it religiously. This is one thing I did right.

Marie,

I can definitely understand how easy it is to rearrange your household to accommodate this behavior. I think it’s instinctual! Also, I can relate to bringing down the definition of “normal.” Prior to what I believe may be the onset of PANDAS, my son had some pretty mild obsessions (organization, closet door closed and other doors all-the-way open, sitting in the same chair for meals, etc…. probably the most unusual was making sure the TV, VCR and other electronics were always turned off, but even this wasn’t all the time or constant).

Reading about your experience gives me a lot of hope. It sounds like you’ve dealt with some pretty extreme situations and to hear that your son has recovered from them is really wonderful.

My son’s current obsessions are sounds like breathing, chewing, eating, dishes and silverware (although this last one has started to diminish), people sipping coffee from a sipper cup (this one is just starting up), gum. The eating problem has gotten so bad that my son now checks on us and will come out of his room at night to check if anyone is eating. Sometimes he even tries to see if I have anything in my mouth! He’s also obsessing about urinating (which I’ve read is typical to PANDAS) and is afraid to go for long drives because there might not be a bathroom. Also, he’s developing contamination issues (I’ll put a spoonful of refried beans on the counter and force him to look at it. This is excruciating for him — and this is a kid who months ago could mix food and drink on a plate and make yucky concoctions!!!). Another problem is 3-dimensionality (line of vision). If you are sitting next to him with one knee crossed on the other, or feet on a chair that he can see out of the corner of his eye. The only “tic” my son has exhibited so far was pulling at his tongue, twisting it and sticking it out a lot. He only did this for a few days. But that was kind of scary because he couldn’t stop it.

I think the amoxicialln helped, but at this point our prescription has run out and I have to figure out what to do (convince the doctor to give us another prescription or continue to try and find someone else who may be able to treat it) Maybe a DAN doctor? They are sometimes open to unique situations and treating bacterial/viral issues.

Laura,

One of the things I learned when my son developed tics was how closely related tics and compulsions are. Thinking back I realized my son had a urination “thing” for a while (clearly anxiety, how did we not know this??) and a contamination problem also after 9/11. (If I handed him a bottle of water he HAD to know where it came from and that noone else had already opened it. ) Check out the tourette’s web site I posted. The parents there do a lot with nutrition - which is what we did about the tics. Who knows if the magnesium or just time made his tics wane, but he is 99% tic free right now so I’ll take it.

Karen,

I’d take 99% too! That’s awesome. Do you do magnesium by pill or epsom salt baths? Any other supplements? I do think time can help too.

I think the main thing is when you see OCD behavior starting immediately try to nip it with constant exposure. Of course, that’s much easier said than done! We have a daily “exposure diet!” Lots of fun. :-(

Honestly, I think we got lucky with this one. We did a couple of things - I started him on a organic multivitamin and added magnesium capsules. My husband coincidently had been to an MD who was also into alternative medicine and he “prescribed” magnesium for my husband’s issues (sleep issues, high blood pressure). I’ve always believed my husband’s sleep issues are anxiety related, so it sort of confirmed for me that this was a reasonable approach. Another interesting thing - too much magnesium can cause diarrea, and my son had always been very constipated. So I figured a little magnesium wouldn’t hurt!

When the tics were very bad we cut out as much processed foods as possible. Right now we have him eating a very mainstream diet, but I do encourage him to avoid caffeine.

I also found that if I scratched his arms and back his tics would subside.

His tics began 2 months after he started at a new school and we moved towns, so we believed stress was a major triggers. By the spring the tics and his stress were leveling off and right now he is in a very good place emotionally. The only time I see tics are when he’s crying (usually in frustration/stress).

We also have seen an amazing reduction in his anxiety and and the obsessive thinking we saw go hand in hand with the anxiety. The right school, good therapy, and maturation seem to be helping alot.

Karen,
I remember when all of that started with your son. Moving and changing schools can be difficult. Does your son swallow the magnesium pills? If so, what brand are they? I bought some and they are just too large. Although I’d like to start epsom salt baths because it’s also effective and less pills to swallow.

I get magnesium capsules which he finds easier to swallow. The brand is Pure, I believe. http://www.naturalgreens.com/ProductDetail.asp?ProdID=227

I had read that magnesium glycinate was a preferred form, and that was exactly what my husband’s doctor also recommended so we ‘ve stuck with it.

But I spoke too soon! This morning, after not seeing any tics for ages, I saw several of the dreaded eye rolling tics. It is exactly (to the date) 2 years from the onset of the tics ( I remember it was the day after veterans day…..) so I’m thinking there is a seasonal element to this for him. Maybe some hayfever or something in the environment triggers something.

Its not bad, but I was just making up my mind to try a medication trial for his attentional issues. The tics make it harder to go that route.

I have only heard good things about CBT for true OCD, so I hope it works for you.

Thanks Karen for the info!

You might want to have your son’s strep titers checked as well (also check for inflammation). Good luck with the tic situation. I personally would probably choose to avoid attentional meds if my child had any history of tics (or at least research it in depth before making any decision).

I’m going to see the neurologist in january. He specializes in children with learning, attention and tics! But we will proceed cautiously. I might want to find it if stimulants help his attention, but then still choose not to medicate while he’s in a special ed. school. Its the mainstreaming that worries. me.

Happy Thanksgiving!

Certainly don’t have any answers on whether or not to use medication but your message reminded me of my son’s description of spanish. He is required to take spanish once a week. His report card included an interim report on specials (they are graded every other marking period because they only meet once a week). His spanish teacher said that he needed to pay more attention in class.

I asked my son about this and he gave me a very eleborate description of all the things he thinks about instead of spanish, telling me that school goes much faster when you think about something else!!! He also told me that spanish is an hour now (in middle school) and it is just too boring to pay attention to for that long!!!

Karen,
Mainstreaming may not be as difficult as you think. I’m sure it will be a big transition, but if your son has good habits in place he should be fine. I’m finding that every year my son seems to do better at school (or maybe it’s that the neurotypical population is just too preoccupied with their social life so my son just appears to be performing and testing better!). There’s still some very big challenges (I don’t think he’ll ever learn how to spell! And the reading is overwhelming), but overall I’m really pleased with his academic progress.

Beth,
Your son’s quite smart to figure that out! Too funny!!!!