He's also started doing a hand flappy thing. He's not copying Riley. She does not have a vocal tic, (just an arm one), and it's not a hand flap.
Compared to Riley's challenges, a simple vocal tic and a hand flap isn't a big deal. Seth has no behavioral issues. No learning issues to speak of. He has been on methylated B12 for a while and it really helps him. We note a marked decrease in his coping when he misses even one dose.
He's sitting here on the floor beside me, playing with his sister, and the tic is just going like mad. "Glunk, glunk, glunk, glunk, scuse."
Over
and
over
and
over.
And I don't quite know how to feel.
Talked to his doctor today and she wants us to do a blood draw to rule out PANDAS. Ever hear of it? If you have a kid on the spectrum you probably have. Perhaps last month, on election day, he didn't really have pneumonia, but strep?Today was his first day joining his sister's karate class and the teacher shushed him a couple of times before I finally whispered in her ear, "It's a vocal tic. He can't help it." Just a couple of weeks ago I barely felt the need to include his vocal tic on the sign up forms, it was such a non-issue. Other students shushed him tonight as well. He turned to look at me, helpless.
I hate this.
16 comments:
I dont even know what to say. Words tped arent of much comfort. I wish I did live closer to at least offer you a break.
Oy. This sucks. Seth picked a good family to stick up for him and take care of him. I am sure you will figure it out...and I am so sorry you have to.
Michelle, don't panic, easier said than done. I have two friends right now whose children did diagnose with PANDAS and they are being treated. I think there is a lot more info on PANDAS right now, thank goodness. But the throat tic doesn't necessarily mean PANDAS or Tourettes. Have you tried taurine? It helped Libby so much. Lib had some tics and they went away after I started it.
Sending love. Hang in there.
oh, michelle ... i'm so sorry .. wrong words? no right words - i'm sorry for that feeling of staring down yet another wall. i'm sorry for that 'damn it all why my sweet kids? and when in hell do i get to be on autopilot?' feeling that we all know so well.
you can - you will - find your way with this - whatever it may turn out to be (hopefully none of the above).
for now, remember to breathe.
Michelle, zip over to Lee Silsby and talk to Alan about Enhansa - high potency Curcumin - just developed - anti-viral and anti-inflammatory. Discuss with hot Toddy. Stat.
K
Oh, Michelle, I wish I had words for comfort or solace. I wish that I had an answer for each of the struggles of these little guys and gals. I don't.
Just know, if we lived closer, I would want to reach out and hug you today.
Oh my. But Wanda is right. He certainly picked the right family to love him.
You are in my prayers.
And remember...you don't know until you know. Then when you know, you will find the perfect way to deal with this.
Love to all of you.
Believe it or not, I have not heard of PANDAS, but after reading the description, it fills in lots of blanks for WOOHOO! I'll never forget the day she, too, got diagnosed. It's a bitch when the second one gets their labels, too, not saying that Seth has anything at all, but just saying I've been in your boat, and that boat is fucked.
I'm here if you need to talk.
Michelle...
Lots and lots and lots of hugs. All I can say is I know... I know..
I vividly remember how I felt when I realized that my "easy baby" too, had lots of stuff going on.
Do what you need to do to tease out what Seth's challenges are. And if there is stuff going on, well, Seth landed in the right family.
While it absolutely totally incredibly unbelievably SUCKS to have to go through this kind of stuff again, at least you know what questions to ask, and where to turn for help...
One day, one challenge at a time, right?
Hang in there..
So. This morning he's got a head nodding tic started, and a new fist thing like he's hammering. Along with the "glunk and scuse."
Blood draw this morning. Doctor later this afternoon.
He's happy enough. Home from school, jumping on the couch, watching TV. Does not appear to be suffering with all the tics happening.
I have had a bad cold all week and I'm exhausted. Thank you for all your kind words and good wishes.
I so appreciate the support.
XO
Good Friday Morning,
Thank you so much for sharing your children's personal lives!
My son struggled with PANDAS when he was younger, our Neurologist used to have to call the Pediatrician to tell him I was not making this up.
Sometimes my sons Guardian Angel gives me the info I need when I need it. Yesterday my boy started pulling his eyebrows out. I know that this is related to anxiety and OCD but PANDAS was not in the front of my brain. Kim's comment has led me in a new direction I am now going to investigate the supplement.
Thanks again, I enjoy your writing.
I'm sitting here - fuming for you. Then I remember - I read somewhere about mercury contamination in Cleveland a while ago....I know you've done the whys and the what ifs...and I don't want to get you going again, but I can't stop thinking about powerplant emissions in proximity to you...and getting suspicious.
Keeping you guys in my thoughts!
Well whatever it is, you and HT will deal with it in your usual no-nonsense way. I have every confidence in you. Plus, speaking as a mum who has been there - one child in the paediatrician being diagnosed with autism when the doctor said it would probably be a good idea to get an appointment for the other one too at ages 3 and 2 - it is easier the second time around simply for the fact you know the system and what questions to ask. You have the strength to grab it by the scruff and see it for what it is.
On the up side, ever one to see the silver lining, it's a whole lot easier to deal with two kids on the spectrum than to have one on and one off. It's a level playing field. That will sound the weirdest thing to most people but what can I say? My life is a blast, a wonderful multicoloured challenging blast.
HUGE Highland hugs to all
xx
((((Michelle and family))))
My easy baby just started small group therapy for his "social issues" at school...so, I can kind of relate to how you're feeling.
Prayers and love coming your way. Keep us updated, ok?
Sending love and light to you all.
I have every confidence that you and HT will get to the bottom of this. Your earlier training with Riley has given you strength as advocates and Riley will be able to learn to be as supportive to her brother as he has to her.
Love, love, love and light.
Love and Blessings to you all.
Holding you in the Light today and always.
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