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Victorious


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I want to share a message of hope. My dd12 has been doing well for awhile, but I'd like to frame it to give hope to those not doing so well right now.

 

I don't know exactly how long she's been sick, but I'm guessing since preschool. By the time she was in K, she had her first dx of ADHD and her first psych meds. By March 2007, our contained concern went over the cliff and crashed into OCD and mania-land. And that is where we stayed, trying all different psych meds at all different doses and combinations for over 3 years. Fed up when the psychiatrist that assured me we weren't missing anything, I scheduled a 2nd opinion at CHOP. Late 2009, Dr. Elia helped us figure out it was pandas by running ASO and DNAse B that were over the tilt measure on a kid with NOT ONE DOCUMENTED CASE OF STREP. However, she says....she has been sick her whole life, so there is nothing we can do for her medically and we continue to treat with psych meds. Although very disappointed, I couldn't waste but 3 seconds on that feeling because now we had direction to pursue. 2 years yesterday, 3 more pandas docs and 9 ivig's later; we received a letter in the mail this week with dd12's yearly standardized test scores. She went from her 3rd grade scores of 5 areas below average and 9 areas barely in the average range to 6th gr 5 areas solidly average and 8 areas above average.

 

So the girl who had been sick too long to treat, who has never swabbed or cultured positive, who didn't really display this dramatic sudden onset and who doesn't fit neatly into the classic criteria box went from the 10%ile in math to the 93%ile. I cried as I held those two pieces of paper in my hands side by side; the hot mess girl she was and the eat-my-dust girl she is now. I remembered that plane ride home from Chicago where she would have jumped out the window from the pain if she could have, exactly two years ago last night. Now, so genuine, sensitive and wise. We talked about that plane ride home through the lightening, turbulence and headache from you know where before she went to bed last night. She giggled about it and laughed at me for getting filled-up. Then she said "Mom, it's okay. It's my story. I was supposed to get sick and I was supposed to get better to make me the person that I am. And I was supposed to have you as my mom." :wub:

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Victory - is sweet! - thank you for sharing. I'm so happy for you both. I can see how hard its been to get to where you are. Even though its just a stupid test - and I'm sure you've told yourself over the years it meant nothing and was the least of your worries. It just feels good to see a measurement like that validating all work you both put in.

 

Tell your daughter I think your daughter is right. You were both meant to go through this - so you could inspire others to be persistent, and pave the way for other "non-standard" pandas cases like yours. Tell her -thank you.

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:wub: :wub: :wub:

 

I know a place you could guest blog your story - to let other parents know that test scores are more fluid than we're led to believe. That our instincts about our kids are often more accurate. Ya know...if you were so inclined... ;)

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Throughout our PANDAS journey of wild roller coaster rides, I have become less sensitized to the stories of pain, loss, fear. This is because they are also my own stories and I have had to toughen up to help us survive. It is the stories of triumph that make me cry the hardest. As you know, all thoughout our PANDAS travels I have maintained that my son, OUR kids, have the potential to recover...and to make it through whole...perhaps not unscathed, but successful. We have come a very, very long way as well. Your post has left me dripping with tears and smiling. Here is to you and yours and the most wonderful, sweet, family-filled years ahead. -Kath

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Jill,

With tears in my eyes, I am so greatful for the accomplishments your daughter has made. Each and every parent here was meant to take this journey. As hard as it is, each of us continues to seek answers and healing for our children. As I celebrate our accomplishments in my 7 year old, and I continue this journey with my 5 year old, I often remind my self that "God never gives you more than you can handle.".

 

May you continue to be blessed,

 

Amy

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"And I was supposed to have you as my mom." :wub:

 

 

 

...YYYYYYYYYYYYYYYYYYYEEEEEEEEEEEEEEEYYYYYYYYYYYYYYYY!

 

So good to hear--and how perceptive that she recognizes your tenacity, strength, and perseverance --

Great to read this post, thank you for sharing it.

Edited by T.Mom
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I cannot thank you enough for sharing this. We've all felt so many times that "things are just so bad and how are they ever really going to get better?" Your story (and your daughter's) are so inspirational to us all. Please keep sharing! They keep us going.

 

LLM, what blog? Is there a success blog I should know about?

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