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11-Year-Old Daughter Now Struggling

 Now my 11-year-old daughter has PANS. My son, Ewen, who I started this blog about a few years ago is doing great. He still has Zithromax when he has flares but does amazing on Zithromax and is back to baseline while taking that. He's happy and social with lots of friends, and doing very well with his online schooling. 

My youngest though, she is 11 and she is suffering badly. This is what I gave her today:


Morning

Valtrex (for mono.. Epstein Barr)

Vitamin C

Fish oil

lipothiamene


Evening

Zithromax 250

1/2 a Zyrtec

1.5mg melatonin disolvable

7 mg fluoxetine (She was on 5 and I'm working on moving her up to 10mg)


She had been taking another antibiotic, I'm blanking on the name. It wasn't augmentin because she is allergic to that. Maybe Cefalexin? But anyway, I took her off that and put her back on Zithromax tonight because she is tanking and I'm scared. I'll call her pediatrician tomorrow and make sure she is on board with the switch.

My DD is feeling stuck and watching her is like watching a wheel get more and more stiff. She told me tonight that she realized she is happy in her room but gets unhappy when she leaves her room. I told her she can't just stop leaving her room and she said she knows...but I can sense the thought process of constantly trying to ease the pain and devising plans of how to stay comfortable. 

I think I will call the OCD intensive program tomorrow...the one that Ewen did, and sign her up for it. There is a 3 month waiting list and I don't know how it will work with COVID but it is worth a try.

She has been diagnosed with mono, and still hasn't made antibodies for it. She also had Lyme in the past but has beaten that according to her bloodwork.

I just want her to not feel terrible all day. The constant coping is agonizing to watch. As a mom, there is nothing more frightening than PANS/PANDAS. She isn't ticking like her brother did and she isn't afraid she is going to drown in the bath. But I can tell we are heading in that direction and I want it to stop before the slide gets too slippery. I'm so scared. 




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