Archive of ‘My Story’ category

NOT Another Dead Blog

I'll be back

via Pinterest

 That’s right, Painted Lark, is not another dead blog!!!!

I know. It’s been a while. With the ups and downs of our son’s illness (read all about PANDAS here, and I’m not talking about the twins!), I decided to quit EVERYTHING for a while. It was impossible to focus or care about anything else. As he started improving, we wanted to celebrate. So, we spent the summer playing and living as normally and peacefully as possible.

But, now I’m back with a peak of things to come…

Gold Fever

You have it don’t you!?!? If not, you will. I think this has trended for the last year or so but will be EVERYWHERE this fall and lots of it will be the ‘dipped’ look . Check out this:

via Anthropologie

And these:

Metallic Gold Pillow Covers - Gold and White Pillow Covers - Decorative Pillows - Chevron Pillows - Metallic Gold Pillows - Holiday Decor

via Etsy

If you didn’t want something gold before, you do now, right? Well, coming soon is an easy and affordable way to add some glitter to your life.

Gulf Fever

Yes, the kids and I were able to spend a whole month at our beloved second home, Happily Ever After, on the Gulf Coast of Florida. I finally finished the DIY chandelier for the house that I started A YEAR AGO! Yep, a year. Guess I had a little too much on my list last year. I also want to share more on how we bought and transformed this house into a vacation rental that we use in the off-season.

Capiz Teaser PL

Little Guy Fever

The ups and downs of life with PANDAS have continued all summer. We have learned so much about PANS, ourselves, living with an invisible illness and a new-ish medical condition  that I think I’ll share a bit on that.

And OMG (yes, I did just type OMG!) I can’t tell you how cool it is to be sitting here with the kids in the tub playing while I write. It feels so deliciously NORMAL!

Ahhhh… Spring… and Fresh Beginnings

 

Tulips 3 27 15

We are so OVER winter. We had enough Spring a couple of weekends ago for the kids and I to plant the window boxes, then this happened.

Spring Window Boxes 3 27 15

And I found these peeking up in our dreary yard.

Spring Yellow 3 27 15 PL

Spring Crocus 3 27 15 PLToday I was cleaning some blue Ball and Atlas jars for the shop, but then Richard and Carolyn made the mistake of sending us fresh tulips and I don’t think these jars will be for sale anytime soon…. 

Spring Mantle 3 27 15

It’s been a long 4 weeks since I posted about our son’s PANDAS diagnosis (click here if you think I’m talking about black and white bears). It’s been a bit like Spring–the sun peaks out for a day or two, only to be buried in clouds the next and we weren’t seeing anything that indicated better days were on the way.

But we keep going… seeing doctors, adjusting meds, starting therapy, learning about the brain, and just surviving each day however we can.

Last week was crushing. After 5 weeks on antibiotics it was our worst week yet. We switched meds again and this week we’ve had 5 good days in a row! Which is a first in this journey and I hope the beginning of a fresh start. I’ve decided to share a bit more on the blog about PANDAS. I’ve been surprised to hear of many cases and there are terrible stories of families that struggle for a diagnosis and treatment due to lack of awareness. If I had heard of PANDAS or our doctor had known more my child would have been diagnosed and begun treatment days earlier. That first week he was disappearing before my eyes each day. Maybe those days wouldn’t have mattered in the long run. But if I can save one family that experience, I’d like to know I did what I could. No, this won’t be a PANDAS blog, but I will share our story and experiences. Please feel free to share with every doctor, teacher, and parent, you know.

I wish you all a beautiful spring and a fresh start wherever you need it!

~Ali

Painted Lark, Where are you?

My son in a tree PLOur son was recently diagnosed with PANDAS, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It’s a rare complication from a strep infection.

It usually comes on very suddenly and presents as mental illness. Some of the most common symptoms are sudden onset OCD (Obsessive Compulsive Disorder), severe Separation Anxiety, and motor tics. Our child has all of these and a host of other symptoms.

I thought something was off all through January. He had asked a lot of questions about germs for a week and was not eating his lunch at school and then one morning he washed his hands at breakfast at least 10 times. We went to the doctor that afternoon and were referred to therapists in our area. Things got worse all weekend and Sunday night I googled something like ‘sudden onset OCD in children’ and found PANDAS. By Wednesday, we had lab reports that showed a higher level of strep antibodies confirming my suspicions and were able to start antibiotics. On Friday we saw a specialist and he was officially diagnosed.

He has been on antibiotics and anti-inflammatory medicines for two and half weeks. He is better than he was that first week when we were doing the strep tests but not as much improved as I hoped or expected. My understanding is it may take a couple of months of the medication and some behavioral therapy for us to find our way back to normal.

I’ve tried to write about this a few times. I wasn’t sure how much I wanted to share or if it is fair to my son. I tend to figure my children can have their own online lives when they’re ready and don’t post much information or many pictures of them. And to be honest, I think some of the reason I struggled to decide whether to share what we are going through is the mental illness. Which is terrible, because I would not blame someone for having a mental illness. But I am aware of the stigma attached to that label.

Right now, our lives are chaos and mine is pretty much on hold. He’s very attached to me in particular and I’ve spent a lot of time in grade school helping him get through the day. And even when I can get a break, I haven’t been able to focus on anything else. It just doesn’t seem to matter.

I’m hoping that as we begin to accept what he’s going through and what our ‘new normal’ is for the next few weeks, I can start to focus on some other things and get back to painting and decorating as a distraction and outlet for myself.  But only time will tell. So, I’ll be back, but I’m not sure when.

Please feel free to ask me questions, I’ve learned a lot and found a number of resources. I think we were lucky to diagnose him quickly and to find doctors who were supportive as that is not the case for many families.

If you’d like to learn more on your own, these have been great resources for me:

http://www.nimh.nih.gov/health/publications/pandas/index.shtml

http://pandasnetwork.org/

Be well.

~Ali

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