OCD?

[CactusPair]

My ds has always had ocd tendencies (since birth, no joke), but his thoughts are now out of control. He's almost 13. His ocd thoughts terrify him and he's absolutely miserable.

 

We started therapy this week with someone who specializes in ped psych and cognitive behavior therapy.

 

Can you say a little bit about your experience with therapy and any meds. that may have helped?

 

How have you helped your child, especially in the adolescent years?

 

I'm pretty worried.

 

thanks

[AngieW in Texas]

My dd's symptoms started when she was 10yo, but I had no idea it was OCD. I started suspecting OCD-ish tendencies when she was 14yo. She was officially diagnosed just 7 months ago when she went into an OCD crisis.

 

Prozac helped a lot. At first she needed a "booster" medication to get it working. Prozac takes 4-6 weeks to start doing anything and she was in crisis, so they added a booster. That made it effective right away.

 

She is seeing an OCD specialist and that has helped tremendously. She started off seeing the specialist 2x/week, but now she's down to just 1x/week.

 

She also has an anti-anxiety medication (I think it's hydroxizine pamoate) to take as-needed. She's only taken 3 of those pills since she got the prescription 5 months ago. Her psychiatrist had her take it on a day when she didn't need to go anywhere or do anything so she could find out if it was sedating for her. Driving was (and still can be) one of the things that can make her anxiety go through the roof. An anti-anxiety med that makes her unable to drive isn't very helpful if that's what she needs it for. She doesn't feel a sedating effect from the med until 3-4 hours after she takes it.

 

She also has a prescription for Remeron to take as-needed. She was having a lot of sleeping difficulties and this fixed her right up. She only takes it occasionally, maybe 3-5x/month.

 

Her original psychiatrist didn't believe us about OCD at first. After the crisis, we switched over to an Advanced Practice Nurse with prescribing authority. She was MUCH MUCH better than the psychiatrist. She really listened to my dd. She's going away to school next month and has to switch to a psychiatrist near her school. I really hope that psychiatrist is as good as the one she has been seeing this summer.

 

A website that I found extremely helpful was this one:

http://crazymeds.us/pmwiki/pmwiki.php/Main/HomePage

 

Also, find an OCD specialist if you possibly can. It really helps to work with somebody who focuses primarily (or exclusively) on OCD.

[SkateLeft]

Can you say a little bit about your experience with therapy and any meds. that may have helped?

 

My youngest ds has severe OCD and has taken Fluoxetine (Prozac) for about the last four years, apart from the two times we've taken breaks to see what his OCD/anxiety looks like underneath the meds. Without the medication, he washes his hands and brushes his teeth constantly all day long, until his hands and gums are bloody and raw. He can't eat because his list of contaminants is long, convoluted and ever changing. He'll wake up at night and open and close the door over and over and over. He can't go outside because he's convinced there are ant nests everywhere. Oh, and he's convinced that everything is poisoned and will kill him.

 

OCD is absolutely, completely debilitating.

 

Fluoxetine is our magic bullet. It blunts the symptoms, but doesn't completely remove them. The compulsions are still there, but they're controllable. He'll ask me, "Do I have to wash my hands if I do this?" but when I say no, he can let it go.

 

I recently bought, "What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD." It's a workbook, and is over my son's head at the moment, but I think it would work well for a 9-12 year old.

[AngieW in Texas]

My dd had a psychological evaluation on her 18th birthday and I told them about all the things that she and I thought added up to OCD. They said that they wouldn't diagnose her with OCD even though she clearly had OCD-ish tendencies because it wouldn't truly be considered OCD until it took over her life. Then the psychiatrist wouldn't medicate her for it because she wasn't officially diagnosed with it. If he had started medicating her for it then, she might not have gone in to crisis mode. He dismissed everything as being due to Asperger's, which she does definitely have, but Asperger's perseverative behavior is a far cry from OCD.

 

Like your ds, she was washing her hands to the point that they were raw and bleeding and she got to the point that she felt that everything was contaminated.

 

When OCD takes over, it is horrific. The meds got her to a point where she could work on it in OCD therapy. She can do things now that would have completely horrified her even 2 years ago and that was before things got bad. Most her triggers date back to when she was 10yo and I had NO idea at all that she was OCD back then. I didn't suspect it at all until she was a teenager. She covered it up very well.

[SkateLeft]

He dismissed everything as being due to Asperger's, which she does definitely have, but Asperger's perseverative behavior is a far cry from OCD.

 

Thank you for bringing this up! It's been an ongoing thing for us too.

 

We've noticed that because my ds has an ASD diagnosis on his record, we've had a hard time getting psychological services. (We do have behavioral health and psychiatric services.) ASD seems to be an exclusionary condition for a lot of mental health services, because they say the behaviors must just be caused by the ASD.

 

We've spent four years trying to find a psychologist who'll help us deal with the mental health piece. We don't just want to rely on medication to solve the issues, and frankly, I know it can be hard to get teens and young adults to take their medications. As you mentioned, my worry is that if it's not dealt with, we'll end up in a crisis situation at some point, probably as he goes through puberty.

 

We're been told that he's too young, or their practice is full, and we're most commonly told, "He has autism, so he needs to be seen by an autism professional." At the time, ASD was the label that fit his set of symptoms. Now we believe his issues are probably all related to his anxiety disorders.

 

We've been seeing an increase in other anxiety related behaviors (vocal tics and paranoia), so this month his OT went to bat for us with the psychologist at his therapy center, and for the first time we were told that he was too old! Their grant only covers ages 2 - 5. She contacted the psych directly, and he agreed to see our son, so we're hoping we've *finally* found someone.

[Ravin]

My DD8 recently hit the crisis point in her issues, which look to me like OCD, though words resembling an actual diagnosis/label of anything are something her psychiatrist is reluctant to put on a child her age.

 

She was getting more and more stuck in scary, negative, obsessive thoughts, and felt compelled to tell her father or I or both those thoughts, along with memories of things sheMs done or experienced that troubled her. This loop had escalated by last weekend to the point that she couldn't even go down the street to play because she kept having to come back and tell us things.

 

Fortunately we already had the appointment for meds last Monday. Because of DD's young age and family history of bipolar disorder (one of my sisters), the psychiatrist didn't want to start with an antidepressant or antianxiety med, as they can trigger bipolar episodes in children with a predisposition to it. Instead, she prescribed a very low dose of Risperidone, which we started Monday. We're already starting to see improvement.

 

DD is also in counseling, weekly, alternating with an in-home specialist and a visit with her counselor at the clinic, who work together as a team.

[Tiramisu]

My dd had a psychological evaluation on her 18th birthday and I told them about all the things that she and I thought added up to OCD. They said that they wouldn't diagnose her with OCD even though she clearly had OCD-ish tendencies because it wouldn't truly be considered OCD until it took over her life. Then the psychiatrist wouldn't medicate her for it because she wasn't officially diagnosed with it. If he had started medicating her for it then, she might not have gone in to crisis mode. He dismissed everything as being due to Asperger's, which she does definitely have, but Asperger's perseverative behavior is a far cry from OCD.

 

Like your ds, she was washing her hands to the point that they were raw and bleeding and she got to the point that she felt that everything was contaminated.

 

When OCD takes over, it is horrific. The meds got her to a point where she could work on it in OCD therapy. She can do things now that would have completely horrified her even 2 years ago and that was before things got bad. Most her triggers date back to when she was 10yo and I had NO idea at all that she was OCD back then. I didn't suspect it at all until she was a teenager. She covered it up very well.

 

Angie, were the early signs you saw that you didn't know were OCD similiar to Ravin's dd's in her post below?

[AngieW in Texas]

For my dd, the first sign was at 10yo and I didn't recognize it.

 

She was freaked out about going to sleep because she was terrified that she would wake up bald. I had no idea where that idea came from. The most recent American Girl magazine had an article about Locks of Love, so I thought that might be it, but it wasn't. It turned out that she had seen a movie called "The Peanut Butter Solution" while at a sleepover the night before and in it, the kid wakes up bald in the morning and then is relentlessly teased and tortured by the other kids. She has this fear of waking up bald for several weeks, but I assumed that it was just a freaky movie that she couldn't get out of her head.

 

Then she started avoiding peanut butter. Reeses had been her favorite candy and she loved to have cheese&peanut butter crackers for a snack on parkdays. After this, she wouldn't eat them anymore. I thought she just didn't like peanut butter. I didn't connect it to the movie at all. The movie was in the summer, so we didn't have parkdays for several weeks afterwards and I didn't notice the connection. She never ate anything with peanuts or peanut butter again.

 

A couple of years later, she saw Johnny Depp's Charlie and the Chocolate Factory. Seeing the movie apparently contaminated her clothes so that she could never wear that particular outfit again. Then she couldn't handle hearing even the names of any of the candies that were on the movie.

 

Shrek also caused problems for her along with Flat Stanley and anything else where there was a transformation of a person against that person's will.

 

Again, I didn't know why she HATED these movies/books. I just knew that she didn't like them. I had no idea that OCD was the issue.

 

In high school, she started obsessing about her weight. She was really into the Cathy comic strip, so I ended up banning her from the comic strip. She was weighing herself 5-6x/day and freaking out any time her weight went up. She has never been even close to overweight. She didn't have an eating disorder. She just obsessed about the number on the scale.

 

Later in high school, she started to freak out about packages that contained items that contained peanuts or peanut butter touching packages of food that she was expected to eat. When she realized that her raisins had been in the same grocery bag that the bag of reeses was in, she completely lost it. Being in the same grocery bag had contaminated her raisins with peanuts and that meant that if she ate the raisins, she would go bald and everybody would chase her down the street calling her names and throwing things at her like in the movie.

 

She periodically had issues with hand-washing, but nothing like what she had after she went into crisis mode in January.

 

She still won't eat anything with peanuts or peanut butter, but she has actually put peanut butter on her skin and danced around the room while holding a jar of Skippy peanut butter (the brand that was in the movie) on her head. She has also eaten mini oreos that touched a napkin right next to peanut butter.

 

Without meds, she wouldn't have been able to do the exposure and response prevention therapy.

[CactusPair]

Thanks for sharing your experiences. OCD is starting to take over my son's life. I can see the stress in his face and he's come to me clenching his teeth, shaking, eyes almost rolling back in his head, and crying.

 

He has always been "quirky" and very well may have an ASD. But he's been happy and content for years. His demeanor is changing because he's so miserable and he's confessed that he feels very, very bad about himself.

 

I don't know how to help him with his self-esteem issues that are stemming from the OCD. Any suggestions that I can implement ***now*** are greatly appreciated!!!

 

Meds. seem like they are warranted in my unprofessional opinion, but we'll have to wait until the therapist meets with him a few more times.

 

The torment in his eyes is heartbreaking;I just want to help him and don't know how!

 

thanks very much for all the guidance and feedback. It helps to know we're not in this alone.

[Wendi]

:grouphug:

 

I have OCD, and ds does, too, although his is interwoven with Asperger's and ADHD.

 

For me, Paxil has been wonderful. I've taken it for over ten years now.

 

My ds started out on Zoloft (made him feel terrible), then Prozac (seemed to help but ultimately we decided it wasn't working well enough), and now is on Paxil. He's done some counseling, but we haven't found the right fit yet.

 

:grouphug: I hope your son is feeling better soon. I know how horrific OCD can be.

 

Wendi