One Good Friend

I have always told my daughter that all she needs is one good friend to survive school with minimal damage.  Making new friends in the fifth grade is not effortless for most kids, but for a PANDAS child it can be even more challenging.  When she was in elementary school Dora made 'surface' friends, as I like to think of them, who she could play with contentedly without either really needing to know much about the other.  As she gets older and her roots of individuality stretch deeper, her friendships too are becoming more personal.

There were a few of the surface friends that avoided her after encountering the PANDAS layer.  Either they did not care to understand her situation or maybe they even feared it.  One thing we did learn along the way was to not let a friend learn about PANDAS during an episode...it is much better to discuss it before that happens.  For example, Dora had a friend spend the night for the first time last year.  Of course she was super excited, but I was afraid of how the changes in her routine might cause her to react.  We discussed how she would handle any anxiety that would arise and since this was a friend that she had known for awhile, I was feeling adequately prepared.

She made it through skipping the nighttime rituals without concern; the next morning however was a different story.  Her normal routine was fully derailed which was too much for her to manage.  She ended up with a full blown tantrum that lasted close to an hour while her friend watched in uncomfortable silence.  It was so hard for me to know what to do....I felt deeply for both of them.  Slowly this girl became less and less of a friend to the point where now the two of them barely speak at all.

It took a few long months but thankfully Dora made a new friend this school year who has stayed over several times now.  The first time she was at our house we discussed PANDAS and how it can cause Dora to behave differently.  It was not until last weekend that she witnessed this first hand.  The two girls were using some paint in Dora's room to work on a project together and a few drops ended up on the carpet throwing  her OCD out of control.  I heard the commotion, quickly went to investigate and found Dora on the floor in the bathroom sobbing and scratching deeply into the skin on her legs.  Her friend helped me clean up the droplets, work to calm Dora down, and went on the rest of the day as if nothing had happened.

Relationships are always a risk at any age, and will come and go throughout our lifetimes.  So even though this friend may be in our lives for only a year or two, depending on which direction each girl goes, I will always be forever grateful that Dora had one good friend during this challenging time in her life.

Springtime Struggles

After having a daily meltdown every morning for the last two years about what to wear (specifically what would be comfortable enough to wear), my PANDAS daughter made a serious break through over the winter.  She had been wearing clothes up to three or four sizes too big in order to keep the material from touching her skin as much as possible.  Not to mention that anything suitable for her to wear would need to be soaked in fabric softener and washed multiple times.

Unfortunately what gave her the courage to push the envelope was being teased by classmates about her baggy wardrobe.  I clearly remember the day when we were out shopping and she asked to try on some jeans.  Having been here many times before I expected the reject pile to be the only pile she ended up with, but this time it was different.  She actually found some jeans, off the rack in the GIRLS department, and was willing to give them a try.  I was dumbfounded and scurried to the checkout without asking questions or inspecting the price tag.  From that day on she continued to push herself a smidgen here and there - enough to end the winter with a modest collection of appropriately sized attire.

Here in Ohio unpredictable weather is, well....predictable.  Going from winter to spring has been a major setback leading back to the days of sunrise hysterics.  The ups and downs in temperature has become a new fixation for her PANDAS induced OCD.  Will she be too hot or too cold?  Should she wear carpis, jeans, or shorts....long sleeves or short sleeves?  What about a jacket?  These questions come at me over and over (and over and over) again all to be relived the next morning (and the next, and the one after that).

Springtime is one where most of us savor the balance of pleasantly cool and warm days.  When trying to point out this delicacy to my dear daughter I only receive stares filled with anxiety and dread.  My hope is for her to have a summer like this winter (or better!), without losing all progress made....and for her to have an autumn where she can embrace the joy of seasonal variety.