Time again for my annual relfection

[airial95]

Three Years Later – and we’re STILL here

 

One year after our diagnosis, I posted a reflection of things I had discovered that year. I found it cathartic and helpful. It allowed me to stop and put things into perspective in a way I don’t often do when entrenched in the day to day of the roller coaster that is PANDAS. I did it again last year, and was hoping that this year’s post would be a reflection of all the wonders of life in full remission – sadly, it’s not.

 

Three years into this journey, and I still learn new things every day.

 

I’ve learned that there are no absolutes, what works for one child may not work for yours. And that’s okay.

 

I had already learned what a wonderful supporting community we have, but this year I’ve learned just how passionately we all can feel about what we believe. (See previous lesson learned!) And no matter how high those passions run – our differences never keep us from being there for one another.

 

I learned that I really do need to trust my gut more. Regardless of what others tell me, I know my kids best and should trust my instincts when it comes to their care.

 

Thanks to a 4+ month travel schedule for my husband, I learned that I could do all of this on my own if I absolutely had to. It was a very empowering feeling.

 

I also learned that while I could do it on my own if I had to – I don’t particularly want to. Still a startling revalation for a marriage that has gone through so many ups and downs over the last 3 years.

 

I learned that after 3 years of advocating strongly for my children, I also have to start advocating stronger for myself – no one else is going to do it for me, and a burnt out momma is good for no one. Trust me.

 

I learned that it is helpful when facing a setback, to take a minute and read older notes/journals/posts to see just how far we have come.

 

I learned that no matter how well I think I know my kids – they will always find new ways to amaze and astound me with their resilience, strength and determination to fight.

 

I learned that I need to research my states stalking laws and be prepared – our pediatrician is talking about retirement in the coming years – and I can’t let that happen!!

 

I learned (okay, I’m still learning) not to sweat the small stuff so much. Allowing my kids to have as “normal” a childhood as possible is just as important to their recoveries as any medication, supplement or special diet.

 

I’ve learned that every time this disease begins to shake the foundation of my faith in God – He embraces me and shows me His love in His quiet yet powerful ways.

 

 

Here's to praying that our third year on this journey bings recovery and hope to all.

[Dedee]

I am so sorry you are still here after 3 years. I have been following your journey and you have come so far and gained so much knowledge. Personally, I don't know how you manage sometimes. You are an awesome Mother and your persistance has paid off in many ways. Just the fact that your son was diagnosed at such an early age is testimony to how in tune you are to your children and how didicated you are to their recovery. I can not imagine where your son might be had you not intervened so early. So do not only think about how far you have come but the obstacles that you have prevented by your persistance. Also, your kindness and support to everyone else here is invaluable. I will pray that this next year brings great healing and comfort.

 

Dedee

[T_Mom]

Thanks for this annual reflection-- I can relate to so much of it and appreciate reading it.

 

In the past 4 years, we have been fortunate to have "good" months, even a year, in which there was no PANS -- not even a small tic in anyone!

 

Today we have our oldest d (15) strong and clear -- no ticcing, no severe OCD, no anorexia, no wetting, no age regression, no crawling on the floor mute, and all the wiser for all of her experiences. She is a straight A freshman in HS, right now studying across the library from me--managing life and flying!

 

We also have a younger d (13) who is again in an exacerbation -- (after strep exposure at school we think) -- thankfully she is no longer dangerously anorexic, but instead is doing odd ticcing jumps and OCD/ODD issues rising again--it is wearing, it is exhausting, and at times I border on despair.

 

I told my husband today to "hold on" to the fact that we DO know this is treatable -- as it has been treated successfully before, and she came back, got well, became herself again. That is the encouraging wonder-ous news, that we have seen them come back -- we DO know it is treatable. When so many in the world do not have that hope, well--it puts it in perspective on those really, really difficult days.

[airial95]

Thanks for the kind words. We are in a MUCH better place than we were when we started this journey, and while my now 5 yo son still struggles, he is living a fully functional life of a pre-K kid. Our biggest struggle is that he continues to test positive for strep (cultures - has never had an elevated titer in his life!) regardless of the abx he is on, or if we get to a point where we feel we can lower the dose to proph or take him off completetly - BAM - within 2 days he's spiraling out of control again. So we are always either flareing - or just "coming out" of a flare. Never back at 100% (which we saw post T&A last year...until he got strep again!)

 

But through CBT, and 3 years practice, it's no longer the major family disruption it once was. Yes, from time to time we have a really rough day that results in a rage that we haven't seen in a while, but we've become old pros at dealing with them and have a "crisis plan" in place.

 

The biggest point of progress we have made this year is in his ability to self-report. He calls his OCD "Harvey" now, and has been able to start telling the difference between when "Harvey" is telling him something is wrong. He also, for the first time, self-advocated with our pediatrician. After finishing a 30 day course of rifampin (b/c he tested + while on Augmentin/Azith combo of course), his OCD flared badly immediately. He actually ASKED me to take him to the Dr. to get his "throat tickled", and while we were there, had the courage to tell the Dr. (much to both of our surprise), that when he was on the rifampin "Harvey went away, but now he's coming back. Can you give me more of that medicine to make him go away again?" Even though his culture came back negative that day - the ped didn't hesitate to write the script.

 

I didn't put it in my annual reflection - but seeing that helped me feel better knowing that even if he has to deal with this for the rest of his life - he's learning to be a strong young man who will fight just as hard as his mommy to get him better.