PANDAS/OCD in 5.5 y.o

[amaayeh]

Is anyone familiar with PANDAS (http://intramural.nimh.nih.gov/pdn/web.htm)?  My daughter has always had a few quirks and is generally a rule follower, but nothing that I would remotely qualify as out of the ordinary for some people.  It certainly did not interfere with anything in her life.  We have experienced a lot of change in the last three months...moved half-way across the country, away from all friends and family, started school, are having a new baby, etc.  Certainly stressful on all of us.  However, on December 12, it suddenly began snowballing into these OCD behaviors we hadn't ever seen from her before.  Needing to step in certain places, symmetry issues, counting and tantrums.  It was bad for a week, got a little better the next week, and then bad again last week.  From what I'm reading on OCD, PANDAS is something that isn't believed by all doctors and scientists, but everything I read describes her a lot more accurately than general OCD symptoms (i.e. hand washing, cleanliness, etc.  Has none of these.).  I have contacted a local pediatrician in hopes of getting a strep test and possibly a titer test to see if she has had it in the last six weeks.  Apparently that is the last 'qualification' we need to have a better diagnosis of PANDAS. 

Just wondering if there was any experience out there with this...

[DebC1]

Our daughter was diagnosed with PANDAS in January of 2009 after sudden onset of symptoms after a strep infection.  She changed literally overnight.  After months of antibiotic treatment and now a dose of Azithromycin 250 mg M/W/F, she is doing great!

A great site to find additional information is:  http://www.latitudes.org/forums/index.php?showforum=17

This portion of the forum is dedicated to PANDAS and there is a ton of knowledge out there.  Please let me know if you have additional questions!

[asaxon]

Hi Andrea,

There's a range of educated and uneducated opinions about PANDAS, even among the medical community, and you'll often suspect that you know  more than the doctors.  Moreover, each specialty has its own perspective and bias.  Your best bet (based on my 18 months of experience with a child with suspected PANDAS) is to find a pediatric rhumatologist at a major teaching hospital who has specific experience with PANDAS cases.

Where do you live?

-asaxon

[amaayeh]

I'm in the San Francisco Bay area.  I found a holistic pediatrician who said she has come across cases before and would be happy to meet with us to see what she thought.  Hopefully that appointment will happen this week and we can go from there.

Thank you for all the info.  It's greatly appreciated.

Question:  Does your child ALWAYS struggle with the OCD or do they have days that it's better?  For example, she struggled with it a lot this past week and yesterday we started giving it a name and telling her to tell her 'monsters' that she was in control and didn't have to listen.  This seemed to really click with her and did fairly well yesterday.  Today was her first day back at school and I was greatly concerned how it would go.  She was very nervous this morning, but said that she was better once her friend said hi.  Then she told me that the 'monsters' did not follow her to school today and so far at home, I have only heard her jumping around (like she is having to step in certain places or across lines) once.  I asked her to stop and she did.  Is this normal to go back and forth like this?  Do you have to stay on top of it 24/7? 

[lindberg99]

I'm not sure this is any help because I don't have any direct experience with this. But I did read a book written by a woman whose son had PANDAS. You might want to check it out...Saving Sammy: Curing the Boy Who Caught OCD Maybe it could provide some help? I hope things turn out okay for your daughter.

[DebC1]

Our daughter had good days and bad days when she was at her worst.  Slowly, things improved as she continued with antibiotic therapy and worked with a psychologist using CBT (cognitive behavioral therapy).  By summer of 2009, she was in remission.  However, in fall of 2009, we allowed her pediatrician to administer Flumist and this caused an exacerbation of symptoms.  She obsessively cleaned and had temper flares for several months.  We used antibiotics during the 2009/2010 school year only when strep was in her classroom and she didn't return to her normal baseline behavior.  We still saw obsessive cleaning and temper flares.  This year we started the M/W/F azithromycin 250 mg treatment when school started and her symptoms are basically gone.  We saw a slight increase in anger during a 2 week period when her brother had mycoplasm pneumonia which can also trigger PANDAS symptoms.  Once he was treated, our daughter's symptoms went away. 

Basically, there is hope that your child can regain their normal behavior.  It is a battle that is worth fighting and it is wonderful to see them return to their "normal" self.  I do live in fear of future exacerbations.  However, now that we know what we are dealing with, we know the steps to take before things get too bad.

Beth Maloney is the author of the book referenced above.  Here is a link to her foundation site:  http://www.internationalpandasfoundation.org/obsessivecompulsivedisorder/Home.html

Another site built by a PANDAS family is:  http://pandasnetwork.org/     This site is a great source of information.  It compiles much of what is known about PANDAS.

[asaxon]

Answer-My child always struggles with OCD, and some weeks/months are better than others.  The severity of OCD (whether PANDAS or not) is known to oscillate over time.  For PANDAS kids, it gets very bad very suddenly and then slowly improves over a period of weeks.  Incidentally, it is thought that the initial trigger of PANDAS may be strep, subsequent exacerbations may be due to other infections such as viruses.