Nadia is home with me, again, as she has been since Thursday. I still can’t get her into underwear and thus to preschool. It’s almost like she has a panic attack every time going to school is mentioned. So I didn’t push it yesterday or today. But I guess my fear is, the more she stays home, the harder it will be to ever get her back to school… Her doctor did say to try to limit some of her stress until we see some improvement…
Speaking of improvement. I haven’t seen any yet. Okay, maybe some, but so little I could just be imagining it. Yesterday the supplements arrived that the doctor recommended. Mostly vitamins and probiotics, which are capsules. I looked online and it said I could open them… but what to sneak the powder into… We are tapering down her steroid over a month. I feel like a lot of PANS parents said a steroid helped right away, but I can’t say the same. The doctor said sometimes, once they are off it, you notice the improvement when the side effects of the steroid wear off. We’ll see I guess. I’m not entirely sure we are even on the right antibiotic yet, as I don’t think we know the real trigger of this yet. And sleep is still not going great. Maybe due to the steroid… She wakes often during the night wanting something to drink.
And then there is Eric. He is still on board with trying PANS treatment, but he admits he is skeptical. We haven’t been told any of the tests done came back actually showing anything abnormal. Although, the books I’ve read on PANS say there are soooooo many things that can cause it, and usually several things in combination are the trigger. How could one possibly test for everything? But if you don’t know what you’re treating, how do you treat it? And Eric says, in medicine, if you look hard enough, you will find something. I think that was his way of saying, if we find something, it still doesn’t mean it’s necessarily the trigger.
Last night Eric said he thought we should consider an anxiety medication for Nadia. He meant, keep with the PANS treatment, but in the meantime, see if a SSRI, like Prozac or something, would make her feel better, allow her to go to school and function more normally, until we figure out the PANS treatment. I guess I’m not sure opposed to such. My fear is, it will work, and cover the root cause of all this…
I wish God would give me a sign
Something to show me I’m on the right track
That I’m making good choices for Nadia
I pray for our doctor, that she may have knowledge and wisdom
Ultimately though, I pray for Nadia
That we may find healing
2 thoughts on “Home”
rose
Joining in your prayers. Sending support.
Glad Nora IS going to school and hoping she is loving the interaction.
If you try anti-anxiety I hope it opens doors while you search for more answers. Glad you are able to be at home with Nadia and not forced to work and leaving her engulfed in her horrors.
Parenting is hard. You are under huge stress through this time. Wish on-line support helped more. Thank you for updates.
Stefanie
Thank you!