Saturday, June 1, 2013

Living with a Healthy Child - How can anyone take it for granted?

Last night, someone asked Lance if the most recent IVIg (that we did back in December) ever did anything to help his PANDAS symptoms? And for the FIRST time, he said, yes, he is better, the IVIg worked.

HE SAID YES. Straight out, YES it did, I feel better.

I feel GOOD.

OMG. He said those words.

I would never personally ask him if it helped, I try hard not to ask such things. I'm afraid he'll say no. I'm afraid the question itself will be a trigger and create another flare. So its something I tiptoe around, never quite asking but watching watching watching for signs, any kind of sign.

Are his pupils big today?

Is his ankle jerking?

Is he sighing too much? Sleeping too much? Sleeping too little? Good mood? bad mood?

Does he look pale? sick? hot? too dry? rash-y? puffy? inflamed?

Is his coordination good today? oh did he bang his foot? his head?

Do we need to see the PANDAS doctor? The therapist? The chiropractor? the postural integration specialist? the dentist? The pharmacist? The ENT guy? the Herbalist? The acupunturist?

does he need more antibiotics? Less? How about more gut support? Allergy medicine? Oils? Methylation nutrients? Myco drops, how many today? Anxiety herbs? Sleeping nutrients? Waking nutrients? Adrenal support? Did he say that cos he is 17? Or is he having anxiety due to strep? Should we have more and more and more labtests?

Endless measuring watching and waiting.

Isn't that the way it is?

I for one am trying so hard to step back, and let Lance revel in a sense of well being and how it would be for him to just be unobserved for at least a few minutes or a few hours. Or a few days. To just let him be 17 and have the FIRST healthy summer he has almost ever had, since we moved to to California in 2006.

This is what I am hoping for the rest of this year....as Lance continues to get better and stay better!!!!

1. Any semblance of normal living

2. Unusual Social phenomena a.k.a. "Fun" - that would be a change...

3. Having money left over each month NOT spent on medical care and be able to do something fun with it!

(amen to that!!!)

4. To take Lance to the east coast this summer to see my family for the first time several years - and, visit a few colleges he is interested in. AND to see some of my old friends in NY and cousins and my in-laws that I NEVER ever get to see - and haven't seen for years!!!! Did I say - YEARS???

5. To see him get into one of those colleges he is interested in - his #1 desire is Stanford - with a FULL SCHOLARSHIP (since I spent my entire lifesavings on medical care) - YES HE CAN!!!

6. To take Lance on a vacation, him and me, for the first time in so many years, a real vacation, if I can swing it, to like, a resort. Hawaii, Mexico, Florida? hey anywhere, but somewhere that feels resorty and celebratory and luxurious and like we're not constantly missing out on the life that we ever hoped to live.

7. To support as many children and families dealing with PANDAS as my human energy, cognitive capacity and time allow me, and to see many changes in how PANDAS is seen in the world. It should be

-recognized and integrated into mainstream medical care and education

-full treatment parity including manadatory adaptive education AND insurance reimbursement.

-NO child having to travel to another state or another country to find PANDAS specialist care

-NO child being pumped full of psychiatric meds for weeks or months or years when what they need is antibiotics

-NO family having to lose their homes, life savings and entire financial well being while forking out thousands and thousands of dollars every year on non-reimbursed medical care (SHAME on our country!!!)

8. Ok, dare I say it - Happiness. To feel happy again, relaxed and trusting that good things are happening. Its been a long time since I have felt like that. Even now I'm afraid to let my guard down. But I must try. Lance wants me to try, he needs to feel freed up and normal. He would give anything to see me freed up and normal - to have more of a life than I do as a very hardworking single parent doing everything I can to keep him going and us surviving.

I wish anyone looking at this page happiness, for yourself and your family.

And if you are a PANS/ PANDAS family, know that there are many sisters and brothers that support you and embrace you all over the world. We understand how small our world can feel in isolation, but you are not alone. And but I believe that our children are going to get better. If you are not a PANDAS family, and your children are healthy - please, Be Happy. There is no excuse for misery. Just know that nothing else in the entire world is worth worrying about. Make your life joyful and brilliant and focus on the normal moments, the simple moments. All of life is there for you to live as open possibility!! You are so lucky and blessed!!

Next spring, likely in April, we (with the support of PandasNetwork) will be presenting another PANDAS Parent Symposium in San Francisco, and we are working on pulling one together this fall in Boston. None of us should alone out here.

Love to all

Amy