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Posted

I watched a TV show tonight. It had nothing to do with PANS, PANDAS, PITAND, mental health, physical health, health care system, parenting, or my job. It was a one-hour who dunnit with commercials.

 

I remember when I used to watch these at least one or two nights a week. That was four years ago.

 

Four years ago in November 2009 my son contracted H1N1 triggering yet another period of problems with attention, handwriting, executive function, separation anxiety and urinary frequency. Subsequent investigation finally led to the PANS diagnosis along with discovery of a sinus cyst, immune deficiencies, and mycoplasma. Surgery, antibiotics, steroids, IVIG, hospitalizations, inability to attend school, and multiple trips to out of town doctors and local doctors ensued.

 

I believe his case is one of the more complex cases. He is now attending school and continues to receive IVIG regularly. He is still tired much of the time, but is learning in school and is a great, fun teenager. And me... I am a Mom who watched a TV show tonight. Now THAT is amazing!

 

Hang in there folks... we are all going to beat this thing!

 

Posted

Thanks for sharing...it is amazing how such a simple act can bring so much joy.... those of us whom have lost so many of the simple things because we take on the daily, sometimes in 15 minute increment fight to not lose our children...to....whatever....rejoice when we here a story shared, about a day filled with simple pleasures.

Posted

Only us really old timers realize how much of your story you've left out and just how much you've had to rebuild and overcome, how much you've given back to our little community. For you to be at a point where you can post this is so very awesome! You and DS have worked sooo hard. I'm so very happy for you :wub: :wub: :wub:

Posted

Being in the thick of it I can really appreciate your celebration of this moment of success. Thanks for sharing it with us.....I know I needed to hear that someone sees the light at the end of the tunnel for all of us.

Posted

So happy for you! I have followed your son's case for a long time - his case sounds as complex as my son's. I am so encouraged by your story. It has inspired me to share my son's success so far - I tend to focus on the fight rather than how much progress he has made. So look for a post soon...

 

You made my day!

Posted

Wonderful! Four years ago in Oct 2009 my son received a flumist vax. As we call it, the day that shall live in infamy. My son is doing extremely well at this time. It's about time for some relief and I'm glad you are getting yours.

Posted (edited)

Glad you have gotten to a point where you can take some time for yourself! I think we all function better if we can bring back some normalicy.

 

I'm finding that this year I am enjoying planning for the holidays; the baking I'm going to do, the decorations I will put up, etc. Last year I was simply reacting and doing what had to be done, but this year is definately more fun.

 

It's good to be out of the trenches, if only for a while.

Edited by rowingmom

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