Good Ole Florida Kitsch

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The Sponge Factory-Tourist Shop and history of Tarpon Springs video on a continuous loop. I love these old cut-outs!

Looking for a fun day in Florida? You’ll do well to spend an afternoon in Tarpon Springs. I remember its claim as the sponge capitol of the world when I was a kid, and it’s still trading on that century old history. The sponge industry was huge at the turn of the last century and as it grew attracted Greek immigrants that brought their knowledge of sponge diving and culture to this little Florida town.sponge-capitol-pl

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As we headed back to the DC area late this summer, we spent a few hours in the historic Greek district centered around the Sponge Docks on Dodecanese Boulevard (map).

This area runs along the water and you’ll see boats of all shapes and sizes, plenty of shorebirds, and lots of snowbirds. There are totally cheesy tourist shops-complete with videos on the history of sponging-and delicious Greek restaurants with live music and waterfront seating.

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Boats of all shapes and sizes

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Dining doesn’t get anymore waterfront than this!

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Natural sponges

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Locals

My favorite? The art bikes! Just like everything else in this charming town, they had a local spin incorporating life on the water and many, many sponges!

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I’m not the only one who loved the bikes! This one was by far my favorite.

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To see more of this artist’s work check out Flowerbikeman on Instagram.

PS: I know this is out of left field as I’ve mostly just been trying to spread PANDAS/PANS awareness and give updates on our son this year, but hey! I am trying to get back to normalcy-whatever that means, right?!?! B is doing well (much improved actually) so far and we are all just holding our breaths to see if he heals all the way and if that healing sticks around for a while this time!

IVIG Again: Second time’s the charm?

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After all the ups and downs of the last 5 weeks, we are doing IVIG again. This means B spends 2 days in his Neurologist’s office receiving donor antibodies via IV in an effort to bring his immune system all the way back, steroids for the migraines and immune reaction to the new antibodies, and saline for hydration.

Then we hope he won’t have the migraines and vomiting, a common reaction, which he had after last time.

He did well today. It’s very hard for someone with a OCD fear of vomiting to let you do something he knows will likely make him throw up. I can’t imagine the stress in his little head-but it is palpable as we peel him from the car and hold him on our laps while his heart pounds away.

I share because, the invisibility of this illness and its psychological manifestations causes many to blame and question children and parents. These are sick kids who need extreme medical intervention.  Treating the symptoms (OCD, ADHD, anxiety, etc) will not cure them and may cause harm. Families need more medical professionals knowledgeable about PANDAS/PANS and insurance coverage for these doctors and procedures.

In the months since B’s last IVIG we have had huge gains. Our hope is that doing it again will bring our son all the way back and give him much needed relief from his symptoms and a chance to just be himself without the demons that have made everyday such a struggle.

Is the end near?

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Me and our miracle!

Well, It’s been quite awhile since my last post. I dilly dally on giving updates about our son’s condition because it is so variable. Right now, I want to shout this from the rooftops:

HE IS AS WELL AS HE HAS BEEN AND IT IS AS LONG AS WE HAVE HAD A GOOD SPELL LAST!!!!!!!!! 

What??!?! I know, it is total awesomeness to write that. We have seen slow but steady improvement since about the middle of July. You may remember he had dental surgery in March, after that we saw steady improvement (in PANDAS-land that means week by week, not day by day as things never seem to go in a straight line!) until he came down with something in May. He was sick for a weekend, but it was different from other illnesses as he did have a fever and a rash. Often he has his autoimmune PANDAS response, but no normal illness symptoms.

We don’t know what it was, but a strep test came back negative. Although, he has been poked and prodded and is so fearful now that it’s impossible to tell if they actually get a culture or not. He was super chill while sick but once his immune response got going, the PANDAS symptoms (OCD, anxiety, echolalia, mood swings, and sleep disturbances) heated up again. That continued through mid-July, when he lost a tooth, too. There is anecdotal evidence that mouth bacteria getting stirred up when a tooth is loose or dental decay is present causes more PANDAS symptoms so that may have contributed to the craziness as well.

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I thought B would love the story of Winter the dolphin. Especially because we’d be nearby in Florida. NOPE. No way, cried and had a fit when I told him about it last summer. This summer…. watched the movie and then went to see Winter in person. Guess who cried that time?!?!

From mid-July till now, we have seen more of B’s personality than we had over the last 18 months. Oh, how it makes me teary to think how long he has dealt with this. There are still ups and downs, but overall he is himself. It’s so weird to say something and him laugh and make a joke about it. Or to tell him “no” and hear a reply of, “okay, mama”. These are things that just didn’t happen over the last year.

I think at some point, I had to stop hoping for him to come back to us, because I didn’t know if he would be forever changed by the lost year and a half. I didn’t know if he would be a different person. I wondered if we’d have huge discipline issues because, you can’t discipline a child with PANDAS. They don’t respond to caring, to cajoling, bribing, or punishment, or reward charts unless their brain is working enough for them to govern themselves. And for the greater part of the last year and a half his wasn’t. We let rules go. We looked or ran the other way.

He isn’t symptom free. He is super stranger weary and still having a hard time separating from me. And yet, if he panics and cries about something, I can comfort him and he responds. When he acts up and tests a limit, I can ignore him and he comes round when he’s ready. He plays with his sister for hours and we’ve signed him up for golf camp in a couple of weeks. I’m hoping I won’t also have to go to golf camp, too, but even if I do, it’s such a big deal that he is able to go and interact with other kids and a camp counselor for a day.

He’ll just come scampering through the house and throw his arms around me and tell me he loves me. I think he can’t believe it either.

So while we enjoy the last few weeks of summer, we celebrate and we hope. Much love and thanks to all of you out there!

I Scream PL

Ice Cream in Georgetown! Before our last Neurology appointment for a long time, we hope!!!!

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