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Newbie mom, DS diagnosed with OCD


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Hi, I’m new to the forums, writing because my son DS (6) was recently diagnosed with OCD and I'm wondering if we should be pressing for the doctors to explore the possibility that it's PANDAS.

 

He has always been a quirky toddler and young child, with numerous phasic anxieties that have come and gone. When he was about 11 months old he started cleaning things--never to the point that I thought he was sick, but he was definitely a quirky baby/toddler who loved to help clean the house! When he was about two years old he went to a phase of hoarding small trinkets, toys and other objects from around the house and putting them into receptacles like a bucket , truck, or a bag. He wouldn’t let anybody touch them and would become very upset if we tried to return the items to their proper places. That phase lasted about five months.

 

Later when he was three he went through a phase of being terrified of the wind and refusing to go onto the playground at school because of it. Also that year he went through a phase of being terrified at the beach that the waves would carry all of our things away and so he would spend all of his time at the beach carrying sand toys, coolers, blankets, chairs etc. as far away from the waters he could get them. (Reasoning/explaining didn’t help.)

 

When he was 4 ½ he got Strep throat, swabbed positive. Amoxicillin for ten days. Four weeks later, overnight, he woke up with serious separation anxiety, and was running to the bathroom 5 to 15 times an hour saying that he needed to pee but nothing was coming out. He also was talking about being afraid of dying. I took him to the pediatrician, he didn’t have a UTI (which was my first thought), and the doctor thought it could be constipation, so we tried Miralax, which didn’t help the urinary frequency issues. The pediatrician knew of the existence of PANDAS but did not think that we needed to do more amoxicillin than he’d already had. I think they might have swabbed him again at my request but it was negative if they did. (Now I know I should have asked for blood tests…) It took about six weeks for DS’s symptoms to recede.

 

He has continued to be an anxious kid and some phases are worse than others. He has always refused to try new things, new places, new experiences. He's smart and is a "numbers and details guy." Last fall he started kindergarten and within a month was terrified of missing the bus. Every morning his anxiety would go through the roof in the 10 minutes before bus stop time, to the point of tears and running out of the house. We tried to rationalize with him and tell him that nothing bad would happen, if you missed the bus we would drive him to school, nobody would be angry or upset, but none of this helps as you well know. At Christmas time we traveled by airplane and he exhibited the same anxiety for an hour before getting on the plane, worried that we would miss the plane. Because of these compulsions (and a lot of re-checking behaviors with me and my husband—Mom, when are we leaving for X? Are we on time? Is (younger sister) strapped into her car seat? Will you ask my teacher X? What are we doing tomorrow? Asked ad-infinitum) we took him to a child psychiatrist in March who diagnosed him with OCD and recommended Prozac and cognitive behavioral therapy. Despite being very conservative about medications in general, we agreed to the Prozac because of the concept that kids with (non-PANDAS) OCD have very good outcomes if put on SSRIs in combination with CBT…that the SSRI (correct me if I'm wrong here!) can actually change the way his brain develops as he gets older, hopefully preventing him from developing the compulsions that he doesn’t yet (to my knowledge) seem to have. And I was also swayed by the psychiatrist who said that for OCD kids, so much mental energy is taken up by the obsessional thoughts that they can fall behind in their social/academic development. As of now I’d say he’s doing fine on both fronts, but I can see how distracted he is by his worries, and so can accept the argument for the Prozac.

 

We started him on1.25 ML of Prozac daily (20MG/5 ML suspension) and within three weeks we saw some reduction in the amount of anxiety that DS had in the mornings about the bus. Two weeks later his psychiatrist suggested that we double the dose--we met him halfway, agreeing to give 1.9 ML/day. Within one week of increasing the dosage, DS was exhibiting serious behavioral activation , hyperactivity, and a complete lack of impulse control. He was hitting his older brother, bumping into people, not listening, running into the street without looking (he’d always been quite compulsive about checking for cars previously!). We reduced the dose back to 1.25 mL and within three days he was himself again. I started doing Google searches on SSRI and behavioral activation and saw this article about SSRI-Induced Behavioral Activation in the PANDAS Subtype

http://www.primarypsychiatry.com/aspx/articledetail.aspx?articleid=561

 

It got me thinking about PANDAS and whether we should be exploring that as opposed to just accepting the diagnosis of OCD. So my question is this…DS had an acute PANDAS flare two years ago. Could he still have PANDAS/gain some relief from his anxiety if he was treated for PANDAS, even if he’s not currently exhibiting the acute symptoms he had then? i.e., he’s being OCD/quirky enough to be diagnosed with OCD, but I’m pretty sure he wouldn’t be diagnosed with PANDAS right now…but is it possible that he still has PANDAS and that is what’s causing his anxiety/OCD symptoms? I’m going to talk to my pediatrician, who is the one who brought up PANDAS two years ago and who I think would be open to running whatever blood tests I want, but I wanted to hear from some people more knowledgeable about this before I talk to her. Thanks so much for reading the long post.

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…but is it possible that he still has PANDAS and that is what’s causing his anxiety/OCD symptoms?

 

In a word . . . yes! Two words . . . yes, absolutely! My DS (now 15) has a similar history to yours, with a series of "standard" young childhood illnesses/infections (in our case, mostly ear infections) and an OCD diagnosis at the age of 6. In our case, my DS never tested positive for strep by throat culture, even though we knew he'd been exposed repeatedly and at the time, similar to you, we didn't even know there was another testing option (ASO and/or antiDnase-B) to pursue at the time. So when the throat culture came back negative, we rolled with the OCD diagnosis and proceeded down that path. His OCD and related fears and behaviors shape-shifted over the years, with one behavior fading and another becoming more virulent, and then on a low-dose SSRI (in our case, lexapro), it virtually disappeared for nearly 4 years. For us, that sort of validated the OCD diagnosis at first and led us to worry less about the potential of PANDAS.

 

It was when his OCD abruptly went off the charts at the age of 12 and no SSRIs, low-dose or increased dose (as you've noted, the increased doses just made him crazier) could touch his anxiety, that we circled back around again to PANDAS. This time, thanks to "Saving Sammy," we went after the blood tests since he never comes up positive via typical culture, and just like Sammy, his titers were about 5 times the high end of the lab's normal range. Now I know that even this diagnostic step (titer blood tests) isn't foolproof demonstration of PANDAS (lots of kids have PANDAS but don't have high titers), but at the time, it was like a lightning bolt for us.

 

So, even though we'd been living with this other (OCD) diagnosis for 6 years by that point, and experienced what the doctors then told us was "typical wax and wane of the OCD," we now had proof that our DS was reacting to strep, and we were able to get 30 days of antibiotics based on that. What a difference those abx made! And continued to make, as we convinced our ped at the time to extend the prescription because, for a long time, when we'd stop the abx, DS would regress again and experience increased anxiety and fears and increased OCD.

 

Push, investigate, continue to seek help. If possible, get to a doctor who truly knows and understands PANDAS (there's a list of them here on the forum). Don't take "no" for an answer since treatment can make a profound difference in your DS's quality of life!

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I have nothing new to add... but I was going to say- that is great that you have a pediatrician who brought PANDAS up to you. an open-minded, sympathetic doctor can go along way.

I think the several factors you mention really push it in the direction of possible PANDAS.

If you are in Virginia (assuming based on your name) there are lots here from many parts, but especially Northern Virginia & one of the top PANDAS docs is in Bethesda! She has a LOONG wait, but there are other things you can do in the meantime. It sounds like you know what you are doing :)

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VA mom- just wanted to say I am sorry. The urinary issues you speak about are a huge red flag for pandas. This, along with major separation anxiety were my daughter's first issues.

 

Call Dr Latimer tomorrow and get an appt with her. In the meantime if you can continue the abx, and even throw in 5 days of ibuprofen.

 

Good luck!

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Agree with all of the previous comments. I would seek out a PANDAS doc and find out what she/he thinks. A lot of your child's symptoms sound very similar to my dd. Better to treat early if you can. Good luck and hang in there. Either with PANDAS or traditional OCD, it is a hard road for your child and for you.

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Hi VAMom,

 

PANDAS sounds like a definite possibility. We finally had our first appointment with Dr. Latimer today and really liked her and her approach, and got a confirmation of the PANDAS diagnosis. It is a very long wait to see her, but I agree you should call and get an appointment. You can always cancel later if you decide not to pursue it. I also agree with trying to add in some ibuprofen, if your DS will tolerate it. We did that before we could get in to see any PANDAS doc, and it definitely did help our DS a little. We're in Northern VA...are you anywhere nearby?

 

Good luck, hang in there, and keep fighting!

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Thanks very much for all the replies. We are in Charlottesville, and with UVA Medical Center here, there must be someone who knows something about PANDAS--I just don't know of them. But I'm going to start my research and am emailing my pediatrician now. I'll also get on Dr. Latimer's list, just in case. Thanks again for the encouragement I needed.

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Hi VA Mom! I'm in Charlottesville! Let's talk - I will PM you. I have a PANDAS son, now 17, doing well, long history to share. I can help you with some info. UVA knows virtually nothing, unfortunately. Your case sounds like a definite PANDAS case to me, as it does to other members as you can see.

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Wow-- If you read many of our histories on this forum you will find striking similarities with your son!

The very fact that when he got strep throat, soon afterwards he had overnight onset of serious separation anxiety, urinary frequency, and he has had ongoing issues with OCD...

 

DEFINITELY if it was me, I would be trying a month long treatment of antibiotics---just to see if they might have an effect. You have to get to a PANDAS/PANS treating doctor though, and you are in luck that Dr L is not far from you--She has experience treating and is able to treat.

 

You won't know if it is "PANS" until you try treating it as such and see what happens.

 

PANS is a clinical diagnosis, meaning not one thing or another is an end-all indicator. Treatment effect is a BIG hint though-- :)

Worth a try certainly and may help your son avoid the YEARS of suffering some of our kids have gone through.

 

I feel like my daughters have lost a huge chunk of their childhoods needlessly to PANS...If I could do it again I would treat ASAP and hit it with everything available.

 

4 years ago Dr K told me that my d should get IVIG. He told me it was a "no-brainer" as she had responded very well to steroids. He also told me, in no uncertain terms, that if it was PANDAS that it would most likely come back time and again. Looking back, he was RIGHT, RIGHT, RIGHT. That daughter had IVIG for the first time this week.

 

I very much regret that I was not courageous enough to have it done 4 years ago for her sake.

Edited by T.Mom
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