Happy day after labor day folks. I hope everyone enjoyed the holiday and did something fun. We took a 7 hour drive to visit some long-time family friends of ours. It was a long over due visit and I'm so glad I did, crutches and all. We spent a glorious 5 days there and had the best time. We had no plans, just her daughters birthday party. We really just talked, and talked and talked. I wasn't worried about my daughter because if anyone could handle her for me, it would be them. They have a wonderful son who is 15 and was diagnosed a few years ago with RAD. Also a behavioral issue. Side note...he's amazing and I'm so proud of him. Handsome, mature, funny and all that gushy stuff Aunties talk about. Speaking of Aunties..he still calls me Auntie. I'm thrilled he's not too mature for that!
So I was a teeny bit nervous about the trip because if anyone is a strep carrier we start going up to the top of the roller coaster. The weekend went off without a hitch. Baby Piper was fabulous with no meltdowns and played gloriously with everyone else, including her sister. She did refuse to sleep with the girls and was with us every night but since she is the baby, I don't mind so much.
What I'm really nervous about is school starting. School can be a NIGHTMARE for PANDAS parents and kids. With school starting, it means a whole new batch of germs to get exposed to and since we don't know what Piper's triggers are, it's a surprise! I'm sure one of her triggers are Strep but, with PANDAS kids, it can just be an infection like a cold or flu that can bring out behaviors. Anything that compromises the immune system. Her immune system is super weak but oddly she has never had issues with colds, runny noses and things like that. It's always been illness we can't identify. Maybe this is why for 6 months I was a basket case waiting for the bomb to drop of some scare illness. I almost feel like as scare as PANDAS is, she's not going to die from it so it was a relief of sorts. So school...ahhhh....time to relax, get caught up on housework and disinfect like a crazy person. We will be making sure to take our Vitamins, with added vitamin C and Zinc at the earliest sign of possible illness. Piper is also on a handful of things. Iron for her low ferritin, Vit. D as she is deficient (but who isn't in the lovely Pacific NW), a tincture for immune support, Vit. A, multi every day, an herbal thyroid support because her thyroid is borderline hypothyroid and Miralax as she is constantly constipated.
I want to touch on one more thing. Do we notify the teacher of PANDAS? I know a lot of parents don't like to label their children and believe if others don't know about their disability they will be treated equally, etc. etc. OK, I kind of get their points but here is the difference. Your PANDAS kid has an illness and that illness needs treatment. How do we know when they need treatment? By their behavior! If a teacher or school staff member notices some behaviors, they can let you know. If the school knows of a strep outbreak, or pneumonia or some other illness, they can let you know. I know our school has a policy that they do not notify if there is a lice outbreak, I'm not sure why that is, but maybe you can talk to them and let them know how important it is to stay on top of it. You can choose to treat with abx as sort of a booster to keep the infection at bay during the season. Also, you have to be sure your child is getting the proper help they need with behaviors. We are talking about rage, aggression, OCD, tics, regression, fears, etc. If people are armed with knowledge, they can help your kiddo too. I know I want someone to tell me if they see something different. I feel like I am always looking and maybe my view is distorted. Plus, this illness is so new not everyone knows about it. Knowlege is power, power in numbers or some crap like that. Tell them, please.
My last post I had mentioned some upcoming Dr. appts. Well, the dermatology appointment was useless. We know she has eczema. We were hoping the Dr. might consider the eczema being triggered by allergies. She basically said it looked like classic eczema and prescribed us an enormous prescription of ointment. Bummer. The next day we saw the ENT and I am happy to report that someone is finally going to do something about her gargantuan tonsils. They are coming out Oct. 2 (earlier if insurance approval comes through faster) Now we were seeing the infectious disease doctor awhile back at OHSU Doernbecher Children's Hospital and she assured me Strep cannot hide in the tonsils. My daughter has had enlarged tonsils for 9 months with white spots. Odd yes but no strep infection has been swabbed. Sometimes she has these mini-flares, etc. The ENT said absolutely it can hide and often times there is some sort of infection in them when pathology comes back. He did say that he is aware of PANDAS and he has seen improvement in some PANDAS kids. He assured me not to get my hopes up but said that hers are quite exciting to look at.
Tomorrow we have another evaluation with EI (early intervention) for Piper's behavior and sensory issues. Oddly I am also excited about this. I'll update later this week on how that goes.
On another note, I think I'm losing MY mind. With the broken leg, my PANDAS kid, school starting, a psychotic kitten (WTF was I thinking?) and my eldest heading to college Saturday, I think I might need some meds called in for me. It is TOUGH sitting around all day with stuff to do that I'm unable to do. Everything seems daunting, my house is nowhere near as clean as I want and all I can do is sit and watch.
Thanks for listening, sometimes that is all I need!
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