Can I shout, "Wow!"? Or will I jinx everything?
Today, at this moment (and yesterday, and yesterday before that,) my son is in a better place than we have been in for years.
Today, we had a CSE meeting to plan for his re-entry into school, as he's been homebound for a year and a half. My son, now 13, was in the meeting and involved with the planning.
The school offered to shift his schedule around so that he can return for a special (as recommended by doctor and by our advocate, separately,) and then hang around for PE so he can take the bus back home after. As he gets accustomed to school life, we will switch him into an academic class.
On top of all this, our insurance company has approved IVIG for him and we need to schedule that.
And, this kid is totally motivated for his bar Mitzvah, practicing every second he gets, singing for me continuously.
Read our story. We have been through so much grief and despair. I never thought we'd be here.
What resulted in this success?
Who knows? A combination of: IVIGs, fighting the Lyme and co-infections with antibiotics, herbals, etc., a restrictive diet, anti-inflammatories, antivirals, pulling my son out of school to minimize infections so he could begin to heal, brilliant doctors who understand PANDAS and Lyme.
Tomorrow, you might find me belly-punched and crying. I know how all of this can simply disappear overnight. I have friends whose children improved and then sharply declined. I am aware that puberty can have a negative affect on the healing.
Or maybe not. Maybe puberty can bring with it positive changes.
I think my son is at a better place cognitively than ever before. We have a baseline. We will always strive to get back here.
Is he symptom-free? Hell no. Tics, OCD are constant companions. He has some joint pain, sleep issues occasionally, etc. But no rages. No depression. I can live with this child in this condition. And he can live with himself. He's happy and excited by life again.
So, this is my message: If your child is struggling, there's hope. If you're struggling, believe. Hold onto my hand and we will pull each other along. We will get there together.