emotional

Hi, I have one daughter with ADHD and one with OCD. Has your doctor ruled out PANDAS as a cause for the OCD? We went to the Yale Child Care Study Center because our child is only 4 and has OCD. One thing they told me is that they never put young children on medication but rather the child receives Cognitive Behavioral Therapy. We have been successful with this. We now have a psychologist that lives rather close to us that specializes in OCD (it took a lot of searching). Yale was great but too far from our home and not covered by our insurance.

You may have tried all this and ended up on medication but it did surprise me that you even found someone willing to Rx medication to someone so young. We were strongly discouraged from using meds because a child is thought to be young enough to learn the coping skills that adults are more resistant to.

Maybe you can help me with something. How is the school handling the OCD? I’m a little nervous about Kindergarden because school transitions are thought to stir up the OCD.

Terry

Thanks for you reply Terry

We have never explored OCD in the manner you have suggested other to put him on Celexa for a short period. I will do further investigation. Can you help me though, I am not familiar with PANDAS. What is this other than a cute cuddly animal?

As far as your question is concerned, I can’t help you very much. The school hasn’t delt with his OCD symptoms very much at all. It took them long enough to deal with his ADHD symptoms. When he was in kindergarden the only complain we heard from the teacher was that he wouldn’t stay in the circle during circle time which at the time we thought what is the big deal about that.

Chris

Hi, Terry

My older child has Anxity Disorder and OCD. The OCD did become more pronouced when he moved into middle school. The school has never addressed the OCD, perhaps because his is not disruptive (for the most part).

Barb

PANDAS - Pediatric Autoimmune Neuropychiatric Disorders Associated with Strep. This is the first autoimmune form of OCD to be discovered. Your doctor can do a Anti-Strep antibody titer to see if your child has had a Strep infection. What happens is certain kids have OCD bouts after Strep infections and there is a medical treatment for it. ADHD does have a co-morbidity with OCD though so it seems perfectly logical that some of our kids with ADHD will also have OCD.

The book most often recommended to me is “Freeing you child from Obsessive Compulsive Disorder” by Tamar E Chansky, Ph.D. Basically it teaches the child how to boss away the obsessive thoughts. For example, we call Ryan’s obsessive thoughts “Mr. Worry thought”. Some kids call it a “monster” but I think that is too frightening for a small child to think she has a monster in her brain running around. We think of the thoughts as pests. For example, if Ryan has an urge to wash her hands she tells Mr. Worry Thought to “go back to the trash can in her brain and stay there”. She also has the urge to empty her bladder a lot so when she says she has to “go to the bathroom”, I’ll ask her if it is the “Real Thing” or is it “Mr. Worry” and she’ll think about it and decide. If she goes to the bathroom and nothing comes out then Mr. Worry gets a point. If a lot comes out then she gets a point. If a little comes out then they both get a point. At the end of the day we see who won. That competition trick we got from the OCD specialist.

We just had several months of remission and now are dealing with it again. I am fairly certain that it is autoimmune in her case but the treatment is the same until they know more. The good thing is that now we know how to fight back and even if she goes on medication some day, the techniques that she learns to fight back with will still be helpful.

Hope this helps, Terry

I forgot to mention that I think that we have an autoimmune form of OCD because my daughter has Rheumatoid arthritis and the two consitions wax and wane together. The psychologist at Yale was also wondering about a connection. When she has a virus her OCD also gets worse for some reason.

This post is the closest that I have gotten to finding support from other parents. Does anyone know of an OCD message board for parents or just in general. The Obsessive Compulsive Foundation appears to me to me more into fund-raising than providing support and that is not a bad thing but it doesn’t help me.

I appologize to anyone who finds it offensive to post here about this condition.

Please don’t apologize for posting. This board is intended for parents seeking help and support. If you get a good thing going -better for everyone. At the very least I will learn something new. I remember more discussion here about strep several years ago.

I found your explanation of your cognitive coaching very helpful. I seen many references to it but wasn’t really very sure about. I would like to hear more about the therapy and the techniques if you want to share

Cheers

Part of the therapy is just understanding that you are not crazy. There are many ways to explain the condition to a child. We just let her know that everyone has strange thoughts but the thoughts are sent to the “garbage” area in our brain and they stay there generally. In her case, the “pesky thoughts” keeps coming out of the trash can and she needs to send them back. The more often she sends them back, the more likely it will be that they will stop coming back to annoy her.

You have to give the child the power to fight back. You can’t lock an OCD child out of the bathroom for example if she is determined to wash her hands. That will cause hysteria. You can slow the child down and say, “now think, is this Mr. Worry Thought again?” If the child can’t resist washing her hands you try to get the child to at least win a little bit. You may say, “what about not using soap?” or “How about a real quick rinse” or in the worst case “How about not so much soap this time.”

Another technique involves pushing yourself beyond the limits at times when you are strong. Lets say you have a fear of germs again. Sitting on the toilet at Wal-Mart without a toilet paper barrier would be going above and beyond what a normal person could tolerate. That it suppose to make you more resilient the next time a bout of OCD happens. Obviously, you don’t make a child do this sort of thing. The child has to agree and you can’t ask a child to do something that you yourself would not be willing to do. Some people with OCD fear dirt so the emersion therapy would be to stick their hands in mud and play with it.

If you have any specific questions I would be happy to share. Hope this helps someone.

Terry

Sounds a little like Dr. Amen’s ‘ANT’s- Automatic Negative Thoughts. They teach kids to recognize them and deal with them. I wish my daughter could sort through her thoughts and look at them in terms of genuine judgement or just an auto-negative.

So much to learn….

I wonder if a new thread is in order.

TerryB,

Has your daughter had antibiotic therapy? Just read an article on medscape that said antibiotics will reduce OCD symptoms in PANDAS.

If she had PANDAS they would give her antibiotics if there was any active infection. If there was no current infection but she tested positive for anti-strep antibodies (recent infection) then there is this blood-cleaning procedure available to I think it get rid of the anti-strep antibodies. I might be a little off on that but it is not an option for us since Ryan does not have PANDAS. However, you question is still relevant because you have to wonder if perhaps another germ could be the source of the problem and maybe it is subclinical, that is, too mild to detect. Know one knows the answer to this question and it is really hard to get doctors to do anything that is not in agreement with the established norms among doctors. If I happened to be an M.D. myself, I would be tempted to try a round of antibiotics. I would also be tempted to try some of the new anti-inflammatory meds. But I’m not an M.D. and perhaps that is a good thing considering my desperation to try things that sound reasonable but are perhaps experimental!!

Seriously, thanks for your concern. For anyone who is interested, I did find an adult OCD forum at healthboards.com. Honestly, it is a little frightening to read how miserable these people are. I sure hope that my daughter has a better understanding of her condition than some of the folks posting.

This is for mmm: You mentioned your daughter’s thoughts. There is a form of OCD that involved intrusive thoughts that are negative. For example, a new Mom could keep having thoughts about her killing her child even though she has never done anything violent before. It all defies logic and reality. The new Mom would never hurt her child. The strange thing is that the person usually knows that the thoughts are not logical but it keeps coming back. If your daughter comes to you with strange confessions of things she’s thinking of doing that are not in character for her then you need to take it seriously.

Terry

Hi Terry:

This year I have learned a lot about ADHD and co-morbid disorders, through my hubby who is doing coursework on LD’s at SFU here in Vancouver. Our son was dx as ADHD in Grade 2 (also gifted). At the time we were told by the psych that he thought something else was happening too. Last year we figured it out..he has Generalized Anxiety Disorder or GAD. GAD looks a lot like ADHD; inattention, can’t stick to tasks, social problems, self-esteem problems. After many psychiatrists, we found one that insisted that we treat the anxiety first. He is now in Grade 8, and after trying some meds (Celexa, now Effexor) his ADHD symptoms have subsided to the point that his teachers report a very focussed student. My advice..ask for a referral for Sick Children’s Hospital with someone who understands mood disorders as well as ADHD.

My son’s anxiety was apparent from early babyhood-severe separation anxiety,sensory sensibilities, preferring to play by himself. Last year,he had a particularly nasty teacher who brought the anxiety to a dangerous head. Huge damage was done. Please avoid this and at least rule out mood disorders. Ritalin is not good for kiddos with these other things happening.

YMMV,
karis

Terry….Sorry, I should have mentioned this; our son also has OC characteristics that are seen to be part of his anxiety. Hence the connection.

Karis… could you give me more information on how this Generalized Anxiety Disorder manifest itself in your son. I believe something more than ADHD is going on with my son but I have not been able to figure it out yet.

Chris

Terry,

This is another angle. I am guessing you live or around CT since you mentioned Yale. I lived in CT for awhile and worked as a visiting nurse there. I saw a lot of lymes disease. Both my son and I also had lymes twice.

I have often wondered if his motor issues are related to his bout with lymes.

I have seen many diagnosed with rheumitoid arthritis that were later sometimes much later found to have lymes. The blood test for lymes is not as reliable as many believe.

When I had lymes I lost fine motor functioning. I would forget where I was while driving. It was a very strange feeling. I was lucky to have worked with a bunch of nurses who told me straight out I had lymes and to go on the abx no matter what the M.D. said.
It can be a very persavive neurological condition that can manifest differently for each individual.
I have no residual effects.

It is just something to consider.

Linda,
You are right, Lyme is always a possibility and can only be ruled out based on the clinical presentation. I actually drove myself nuts thinking about this possibility. I talked with our Pediatric Rheumatologist about it and she didn’t think that the clinical presentation of the arthritis was consistent with Lyme disease. I also mentioned it the OCD center and they said there is one family in which there is both arthritis and OCD. I finally had to let it go and stop worrying about it. I still appreciate when someone brings it up again because it is a sneaky disease and I want to always keep it in the back of my mind if a new symptom develops.
Thanks, Terry