In less than half an hour now, I have a phone call with our PANDAS Specialist to try to figure out how to help my son out of his current PANDAS Flare. My husband will be home any minute/ I should be prepping for that call…instead I’m writing a blog. That tends to be how I get things done these days. Whenever I have something to do, I just do something else. If only that “something else” were cleaning my house. LOL
So I’m not sure what the PANDAS Specialist will say. I thought we might try steroids to yank Jesse out of this Flare, but we were told it wasn’t indicated, and bloodwork was requested. Maybe an antibiotic change. Maybe IVIG. I just don’t know yet. I have an inkling but will wait to hear it from the doctor.
It was only two weeks ago on 3/2 that I contacted our PANDAS Specialist. I had debated contacting him the week before, but Jesse seemed to be doing better. I thought he might pull out of his flare. Then he had a rough Friday at school, and over the weekend, his OCD ramped right back up with a fixation on Leap Day and it being the 100th Leap Day and everything Leap Day related. Then on 2/29 at school during recess, the horror that is PANDAS OCD compelled him to look at the sun directly several times because it was such a beautiful day. The way I found out is that night while we were watching a movie (Leap Year, of course), he couldn’t read the subtitles because of dark spots and he told me he had looked at the sun that day. OMG! I knew that was bad but immediately was Googling. I called our opthalmologist the next day where it’s usually a month or two to get an appointment, and I was told “we can see him tomorrow at 9am.” OMG! And yes, after several drops and pictures taken of his eyes, there were “suspicious spots.” It’s called solar retinopathy and can take 1-12 months to heal or not heal at all and be permanent. OMG!!!!!!!! Jesse told me yesterday that his eyes do seem better (WHEW!), but we go back to the eye doctor in early April to have them checked again. I’m obviously hoping they heal. PANDAS does so much damage anyway, that the idea of having it do PERMANENT damage to my son’s eyes is just too much. I was also very reluctant to share this with everyone, but this is the nitty gritty and awfulness that is PANDAS. I wish the Dissenters, Disputers, Doubters, and Deniers would acknowledge the pain PANDAS/PANS causes, make the leap, and and help us do something about it.
NOTE: I’ve been very preoccupied since 2/29, so if I owe you any info or a phone call or need to contact you in any way at all, remind me. (Lara, I haven’t forgotten…we’ll talk very soon! Jessica, I remembered your stuff today…let me know if you still want to do a guest blog. If there’s anybody else…write me at firstname.lastname@example.org.)
After the sungazing and Jesse’s eye appointment, I wrote our PANDAS Specialist a brief note that was probably still too long. He wrote back requesting blood work. After a few days to find out what tests we needed to run, I got the list at 6pm…on a Friday. I waited over the weekend (torture!), and Monday morning I called the pediatrician’s office first thing and after a few calls and voicemails, I ended up taking the list down to the office. The nurse at the pediatrician’s office helped to get the prescription for the requested tests (and just a few extras…I’m a PANDAS Mom and my curiosity is stronger than a cat’s). With the list of tests in hand, I drove straight to LabCorp with about 1.5 hours until they closed. I filled out paperwork. I reassured Jesse about the testing because his anxiety was very high. It had been over a year since his last blood work, and despite him having had blood drawn successfully, he acted like he’d never had it done. Argh! He was VERY nervous. We get back to the chair, and he suddenly has to go to the bathroom. He comes back and gets in the chair and gets his sleeve up and the tourniquet on…then just as the tech was going to do the blood, he yanked back his arm and had to go to the bathroom again. The lobby was full, so she went to help somebody else and said she’d come back. She came back into the room, and even though we tried everything, it was clear it just was not going to happen. I had been working since 8:45am that day to get those tests run…it was now almost 4:30. And in reality, I’d been working to get those tests run from the moment I’d contacted our PANDAS Specialist six days earlier. I called my husband from the car nearly hysterical. I was also a mean Mommy because my fear and self-doubt and stress got the best of me, as it does so often in PANDAS. When this happens, all you can do is forgive yourself and start over and just do your best. PANDAS/PANS puts ordinary people into extraordinary circumstances…all we can ever do is do our best. (Something will always go wrong anyway…that’s PANDAS/PANS Law. I think it was the strep exposure I talk about in that blog that brought us to this point.)
My husband left work early the next day and took my son to the lab. After some coaxing, Jesse DID get the bloodwork done. We got the results, which don’t have much to go on really. Jesse had strep in September and October and was exposed to strep in February…the issues are traceable. I had already paid for the phone consult in advance, but it still got scheduled for a week later. Grrrrrrrr.
So, I’ve also been on the fence about our Clearwater Beach trip for spring break. I’ve decided to still go. I need to go to the beach (MY doctor thought it would be good for me 😉 ), and Jesse wants to go to the beach. My son’s PANDAS symptoms are bothersome: OCD (just right, perfectionism, rituals, rigid thinking, compulsions), anxiety, separation anxiety, ADHD, insomnia, possible urinary frequency, school refusal, loss of math skills and other schoolwork deterioration, executive function issues. There may be a motor tic, but he keeps saying he is cracking his neck. He missed about 2 weeks of school, went back for a day, then a lymph node swelled up behind his ear and he missed half a day to go to the doctor to get that checked. OMG! It is always something. But right now, we are still planning to be at the beach at the end of this month. He is functional, but he could be better. I’m hoping the sand and sea help us both.
Today is St. Patrick’s Day, and I’m hoping we get LUCKY because we sure could use some LUCK. Jesse’s OCD was telling him that he shouldn’t go to school today since it’s a holiday, which sounds funny…but I assure you that OCD intrusive thoughts are no laughing matter. He did go to school, but we’ll see if he makes it the whole day…fingers crossed. (Edit: Nope. Jesse just called me…ugh. I bargained with him and will be going to get him at noon. We might want him home after we talk to the PANDAS Specialist anyway. Sigh.)
I hope that your “Irish” eyes smile a lot today and that your day is full of rainbows, pots o’ gold, and lots of LUCK! For now, I’ll leave you with an Irish Blessing:
May the road rise up to meet you.
May the wind be always at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of His hand.
Now I gotta prep for that phone call. I’ve been prepping in my head since I sent the first email. Will just write a few notes.
UPDATE: The call with the Specialist is over. Jesse is in a full-blown PANDAS recurrence (exacerbation). We have a few technicalities/hoops to jump through, but we are likely IVIG bound very soon. Fuck. I feel so sorry for my Baby Boy. I have done everything I could have done to keep this from happening. But it was confirmed that his Sept Strep + his Dec Strep + his Feb close proximity to Strep exposure tipped him over the edge into an Exacerbation. Three strikes of Strep and Jesse’s out. PANDAS SUCKS! I wish the folks outside our world had a clue about the PANDAS Hell we go through with and for our Kids, but I also envy their blissful ignorance at the same time.
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.