Onset of OCD or PANDAS/PITAND

[Rachelle]

How can I tell if what is happening to my son is just the onset of OCD or I should be concerned about more. This has been going on for about 7 weeks.

 

I am concerned. I just don't know if I should be. I'm sorry for the length. I would so appreciate it if anyone can give an opinion.

 

1. He's 8 ADHD and mildly autistic with an onset of OCD symptoms about 7 weeks ago. It got worse in the past two weeks. At this point it's constant much of the time in the day many days (is poison in his mouth, spitting/wiping out poison, asking me if he's breathing, checking his breathing, begging me to call a doctor, and on.) Worse even are some of the nights. He isn't sleeping much at all on the bad nights--waking us constantly to ask if there might be poison in his mouth or to tell us he might not be breathing, staying awake so he doesn't die, and on.

 

2. We have moved. The onset was two weeks prior to the move. So there was stress.

 

3. There is a family history of OCD and in fact I have it myself. I feel I would recognize it in my children and, while I've seen anxiety in this child, I've never seen OCD in him.

 

4. He's had a spitting/wiping his face habit for quite a long time. He never indicated a fear of poison or reason for the wiping. But that was there prior to talking about poison. My son is very clear that he just started worrying about dying/poison/OCD stuff two weeks before we moved (that's when I saw it too). He says he never worried about that stuff before then.

 

 

5. I want to mention that my son seemed to suddenly develop ADHD right after his 6th birthday. It was so dramatic a change I consulted his pediatrician. I did not see OCD at that time. I think I remember a short phase where he was afraid he might get run over or a car might hit the house. He also has times when he pees very large amounts of clear urine frequently (like every 15 to 30 minutes) during the day but never at night. This might go on for a days or a week and then go back to normal. This has been going on periodically for that long as well.

 

 

6. The OCD started and two weeks later we moved. At that time he started repeating his last words (go to the park...park...park) which is strange and not normal for him but, again, he's spectrumy. I thought maybe because we lapsed on probiotics during the move or stress of it. The emotional melt down (irrational and extreme but not OCD related) got worse and more pervasive. Again, I assumed it was the move and it could have been.

 

7. He had some vomiting two weeks ago and this week a very strange rash. In the last two weeks the OCD has gotten extremely severe. He's constantly asking about poison (in his food, on his mouth, etc.) wiping his face/spitting the poison, melting down begging me to call a doctor to save his life, checking to see if he's breathing, and on. Worse even is it's affecting his sleep many nights. He's afraid he'll die in his sleep. He wakes us constantly. I'm just beside myself.

 

I will say I still see my son. Outside of the OCD he's still his old self.

 

Is this the way pediatric OCD looks at onset or does it sound like more?

[Chemar]

hi and welcome

bumping your first post up for replies

[nicklemama]

Your story sounds like more to me. I would have him evaluated for PANDAS. Have titers drawn and a throat swab for a strep culture. Keep in mind, even if he is negative for strep, it does not rule PANDAS out. PANDAS waxes and wanes. PANDAS experts will tell you its common to see anxiety and ocd in the families of PANDAS kids.

[kos_mom]

Rachelle,

 

Welcome to the forum!

 

I'd suspect PANDAS/PANS in any child who suddenly came down with OCD or tics or ADHD, either singly or in combination. My DS had a couple of OCD/tic episodes and then had an episode of sudden and extreme ADHD without either for a month only to be replaced with the OCD/tics.

 

Run, don't walk, to get throat culture, ASO titers, and antiDNase B titers done at your pediatrician. If these are positive you should be able to get abx. PANDAS/PANS dx does not require elevated titers but obviously it is easier to get treatment from your pediatrician if you get positive results.

[Nearlydoc]

Before we even ran the blood tests, our cool immunologist gave us 20 day supply of cefdinir with permission to up the dose slightly and seemed to be wroking. The abx made such a difference that we then did the blood test and went full time with Cefdinir. Our first clue that dd had PANDAS was the amazing improvement post tonsillectomy along with steroids and abx prescribed by the ENT.

 

There is a list on this cite,pandas resources, and pandas network sites of available helpful physicians by state who believe PANDAS is real and will treat it.

[LNN]

Here's some great info on Pandas from the International OCD Foundation http://ocfoundation.org/PANDAS/. I'd have your son swabbed for strep and ask for a culture as well. I'd also ask for two blood tests called an ASO titer and an Anti-DNase B titer. Both measure the body's levels of antibodies against strep. The ASO generally rises 1-3 weeks after an infection and the Anti-DNase B generally rises 4-6 weeks after infection. However, some kids don't show elevated titers even after an infection, so it's something that can show if your son's had a recent infection but it's not conclusive. If you have a supportive pediatrician, it's possible that armed with OCD Foundation handouts, you might be able to get a trial of antibiotics to see if you notice any behavior changes. But many pediatricians are very reluctant to prescribe abx.

 

You also mention a rash. You may want to look here https://sites.google.com/site/drjoneskids/rash-photos for a sample of rashes caused by ticks. You don't say where you live, but a tick infection (lyme and other infections) can also cause sudden behavioral changes and OCD.

 

Either way, a trial course of antibiotics might be very informative. In general, childhood OCD tends to creep in over time. Sudden onset OCD as well as sudden onset ADHD, raises flags that an infection could be your trigger and if that's the case, treating the infection can eliminate the OCD and ADHD.

[sosudden]

I would ask for mycoplasma titers as well. my dd never showed elevated strep although we did not catch her/draw them at initial onset. then get on antibiotic asap and watch for improvements!

[EAMom]

Your story sounds like more to me. I would have him evaluated for PANDAS. Have titers drawn and a throat swab for a strep culture. Keep in mind, even if he is negative for strep, it does not rule PANDAS out. PANDAS waxes and wanes. PANDAS experts will tell you its common to see anxiety and ocd in the families of PANDAS kids.

 

I would also recommend getting throat cultures (for strep) on all family members (to make sure you don't have a carrier in the house, they will need to be cleared).

[Dedee]

Yes, Yes, Yes.....you need to investingate for infection triggers. Run, don't walk, to your pediatrician for antibiotics and lab tests. Also, quickly make an appointment with a PANDAS specialist. It will take some time to get in so get your appointment now. Even if your doctor discourages you from a possible infection trigger, ignore it and still see a specialist. Even if it means you have to travel, make the investment, you will be so glad you did. Best of luck.

 

Dedee