Reflecting on 1 year ago..

[sosudden]

As things are coming together for Sara and her family (us:) I can't help but reflect on this journey.

 

 

 

JANUARY 24th 2012 - A day I will never forget. I was at work, trying to actually work, while trying to figure out what the ###### was happening to our beloved little girl. She had slipped away and I was determined to help her. I googled "OCD AND MOVEMENTS" and Saving Sammy popped up. I only had to read an excerpt and watch a video of him moving to know....I literally screamed "This is what my daughter has!! There is help out there!!"

 

 

 

Approaching 1 year since official diagnosis of PANDAS/PANS by Dr Kovacevik and IVIG therapy.

 

WOW!

Thought I would compile a "Cliff Note" version of our journey.

 

I am hopeful I will be able to write a book myself someday. This has been such a struggle finding help. I have had to research and connect the dots and take the comments and etc etc etc.

 

I have found that the PANDAS/PANS "family" is one of the most supportive, smart, engineering, pioneering, caring, non-judgmental group of people I have ever "met" It sucks that our kids (and families) have to suffer in such an extreme, dramatic, confusing, scary, all-encompassing way. Sucks!!! What an amazing group of brave kids too!!! WOW!!

 

This journey is not "hardening" me as it could so easily do, with the naysayers, the "doubters".... Oh I have moments of weakness, moments of wanting to scream and claw at the medical establishment that has rolled their eyes at my daughter and me. Sometimes the only thing a doctor has said is "This is all anxiety. She needs to be on Risperidol". Saying this without even talking to, asking questions of, or assessing my girl. Weird, huh? Doesn't that sound like the opposit of what a good doctor should be doing? Listening to the patient first??!!

 

I am typing this for me, just to be able to look back at this crazy year in just a few paragraphs (as opposed to the 5 binders I now have in a backpack under my bed;)

Also for anyone in this fight, maybe there might be something that can help their kiddo too.

And, last but not least, one of the amazing parents out there may see similarities and be able to offer ME and mine some advice!

 

Some Important Dates: (history of multiple strep infections, chronic severe pharyngitis)

August 2010 Virus = pale, dark circles, looked different, acted different, NO energy, fatigue easily, constantly felt short of air, achy legs, chest pain, withdrew from everyone and everything, hated school, repeated certain sayings, sudden and SEVERE weather phobia, migraines. Doctors did not test for anything but thought probably mono or EBV. Lasted for weeks. Coughing and forceful exhaling thought was allergies. Allergy testing = negative and allergy medications = NOTHING helped. (Only in retrospect did I see that the vocal sounds were a tic).

August 2010 - July 2011 Peeing and drinking water ALL of the time. Doctor checked for UTI and diabetes=negative. Continues with weather phobia. This could be dibilitating -- as in scared to get out of the car when the sky was completely blue??!! Doctor explained it away as "normal". Really?? Lots of kids scared of tornadoes etc, he said. This was the beginning of me slowly realizing that "mental" or "psychological" health is a whole different ball of wax!!! I just knew there was more to this....her personality was changing...

August 2011 Started 4th grade, got the FluMist, had 2 molars pulled, pharyngitis = THE PERFECT STORM

September 2011 - October 2011 The tics began, eye rolling, eyelash fluttering, squeaking, grunting, tapping, spinning, falling, dropping, circling. The OCD came on strong. Nonstop, all-consuming obsessions and compulsions. At this point she really was just a shell. She could not "talk". She startled. She slept walked. She barely ate. She had migraines. She saw "black circles" in her field of vision. Her color would go from pale to gray to yellow to green and back again. She couldn't say names or numbers. She couldn't watch TV or look at the computer. She stopped reading. She stopped writing (her PASSION!) IF she went to school she spent all her time in the Nurses office until they called me to come get her, about 2 hours at the most. She would get home and pace, tap, circle, fall, roll - until she eventually would crunch down behind the cusion of "her" big chair. Our once super smart, brilliant author, talkative, engaging, creative, sweet, charming, oldest of 4 daughter was slipping away right in front of our eyes.

December 4th 2011 Finally got in to see Child Psychologist after waiting for weeks watching daughter decompensate. Official diagnosis, are you ready for this?? Severe OCD, Transient Tic disorder vs Tourettes, ADHD, Depression, ODD, Hypersensative Sensory processing, "BiPolar" tendencies. Are you SERIOUS??!! My husband and I are in COMPLETE shock!! My daughter, on the other hand, was lost in fear in her own scary world. Our daughter who had the world at her fingertips... How in the ###### could this be happening??!!

December 2011 After 2nd appointment Psychologist is concerned, says there HAS to be something medical going on. We need more tests. She can barely open her eyes when out in public. Then, our daughter starts having strange movements. Writhing on the floor. She can't physically sit still. She tries and it breaks my heart into a million more pieces.... She spends all of her time writhing, only way I can explain it. Then she adds in headstands - headstands anywhere - the house, her bed, the car, out in public - anywhere! She can't help it...writhing, headstand, neck bend. Then compulsion, compulsion, compulsion. She is exhausted and terrified. So are her little siblings. And so are her parents....

to be continued............

[Missmom]

You are a good writer, and you should consider writing that book. I can't wait to read the rest of your story......

[sosudden]

Hi missmom! Thanks! I too just want to help where I think can. This disorder is just so crazy and roller coaster doesn't even give it justice, right? And what works for one does not always work for another... I have found such support and hope by reading certain posts at certain times. ((Hugs)) to you and yours!!

[Missmom]

Hi sosudden,

 

I just want to say that if it were not for moms like you, I would not have a clue what happened to my son. About a week after my sons second episode, I happened to pick up a local newspaper ( which I never have time to do ) and started reading an article written by another pandas mom about pandas.... It was my ah-ha.... moment! I realized based on her description of her son, I could have written that article myself. The problem was, by the time I read the article my son had taken biaxin for a strep infection and had gone into almost complete remission except with a little bit of lingering OCD. I went to several doctors at that time with the article in hand and told them about it, they all looked at me like I was crazy.... So I folded the article and kept it in my wallet for two years. That was when the next more severe episode hit... This time I was armed for battle. I insisted on strep tests, bloodwork, etc... Until I finally got someone to hear me.

 

My point is that if you have been given the gift of being a good writer and dont mind telling your story, you will probably be helping countless people like myself and my son. I don't know how to get in touch with the mom who wrote that article to our local paper, back in June of 2010, but if I could I would buy her lunch and thank her immensely. Also, in return, I will thank all of you who have shared your stories in every way possible. We are all creating awareness in our own little way.

 

Thanks

Linda