airial95 Posted January 31, 2011 Report Share Posted January 31, 2011 Exactly 1 year ago I was told that my son likely had PANDAS after suffering through what seemed to be the most "terrible twos" in the history of the world. A year later - I thought I'd reflect back on what I've learned: - I learned what an amzingly stong, bright and resilient little man we have been blessed with - just as determined to fight to get better as his mommy and daddy are; - I learned that I have far more strentgh determination in fighting for my son's health than I had ever imagined before; - I've learned that a 4 year old little girl can be an amazing inspiration when faced with family turmoil she just doesn't understand; - I learned what a strong marriage is - all of the issues that were insurmountable a year ago seemed to disappear once we united together on our PANDAS hunt; - I learned how incredibly lucky we are to have a caring, kind, open-minded pediatrician who cares more about helping our child feel better than what anyone else has to say; - I learned that when my mother told me years ago that "you get more flies with honey than vinegar" she wasn't talking about advocating for your child - especially with the school district. When it comes to your child - you need to be like a "bull in a china shop" - there may be collateral damage, but you get their undivided attention! ; - I learned compassion for other parents when I see them struggling with their children - you have no way of knowing if that tantrum is more than just about wanting the candy bar at the checkout counter; - I learned I have a well spring of patience I didn't know exsited - not just for my son - but for the countless strangers and well meaning friends who try to offer advice, sympathy or help but are ignorant to our plight; - I learned that sometimes the best way to help my son is to take time away for myself so I don't burn out (okay - so this is still an ongoing lesson - but I'm working on it!); - I've learned that the Lord is truly amazing in the way He works - He gives us so many blessings that we often take for granted until He sends us a challenge. He never gives us more than we can handle, but allows us to see blessings we didn't know existed if not seen through the eyes of hardhip; and finally - I learned that there is an enormously generous, caring community of families out there willing to help in any way they can by sharing their stories, successes, failures, highs and lows in the hopes that they may spare some others just an ounce of the grief they've suffered! Thank you all for your support - I wouldn't have made it this year without you all! Link to comment Share on other sites More sharing options...
butterflymom Posted January 31, 2011 Report Share Posted January 31, 2011 (edited) = Edited February 3, 2016 by butterflymom Link to comment Share on other sites More sharing options...
thereishope Posted January 31, 2011 Report Share Posted January 31, 2011 Wow. It's been a year. I, too, am glad you are able to see the positives and blessings while on this journey. Link to comment Share on other sites More sharing options...
eljomom Posted January 31, 2011 Report Share Posted January 31, 2011 That was beautiful, and will need to revisit it I"m sure! Link to comment Share on other sites More sharing options...
airial95 Posted January 31, 2011 Author Report Share Posted January 31, 2011 HI Airial95, Nice post! It's inspiring to hear the positives that you can reflect on. This forum is really great and helpful. Can you remind us what treatments you have tried for your child? abx? steroids? IVIG? How is he doing now? We've done only anitbiotics thus far - about 11 months, which got him to about 80-85%. We tried azith and cefdinir, each abx having it's ups and downs. We discontinued abx in mid-December - his improvement plataued, and we wanted to give his system a break for a bit (we're shooting for 2 months if we can make it) before we restart/explore other options. He's very sensitive to exposure - he'll have a full backslide if he's around strep even if he doesn't catch it, and I think that hampered us this summer from getting to 100%. Off the abx, he backslid - but not as much as expected and is holding at about 75% without any abx, and only occasional motrin (maybe 1x a week) and daily melatonin. We're also actively doing CBT/ERP - which has been a blessing and a curse. I do think that part of our backslide/stall relates to the ERP and forcing him to confront the OCD vs. just accomodating it (provoking a meltdown vs. trying to prevent it!) But the therapies are helping. It has also helped getting him into the special ed pre-k program at school. School was where he was at his worst, and now it seems that's where he's his best with the new program. While we're not "recovered" in any way shape or form - we're out of crisis mode for the moment. We've learned alot of tips and tricks that work for him (his autism sensory swing has been invaluable!!) And we're at a place for the time being where we can evaluate what our next steps will be thoroughly without panic you feel when they're at their worst! I wanted to post this because I found it helpful to look back at where we were a year ago - scared, confused, unsure as to what our child's future would hold. We're still scared, and will probably always be confused - but my husband and I have learned so much about ourselves and how amazing our children are when faced with this unusal challenge maybe it will give others hope if they see this and they're just starting their journey. Link to comment Share on other sites More sharing options...
SSS Posted January 31, 2011 Report Share Posted January 31, 2011 Thank you so much- beautiful-- Link to comment Share on other sites More sharing options...
airial95 Posted February 3, 2011 Author Report Share Posted February 3, 2011 I just entered my son's "data" into our tracking sheet for the last two days. It was interesting to see his progress. We track several symptoms, on a total scale of 0-150 or so. Yesterday his score was a 40. A year ago yesterday, it was a 122. The grading scale we use is this: 0-3 there, but barely - somewhat age appropriate for a 2-3 year old (ie - hitting someone after being hit) 4-6 pronounced event but not constant - not normal for his peers 7-9 huge impact, disruptive, disabling or unable to function Based on our scale, anything under 50 would be equivalent to having a normal, albeit difficult, child. We really have come a long way!! Link to comment Share on other sites More sharing options...
eljomom Posted February 3, 2011 Report Share Posted February 3, 2011 Wow -- that is great! Have you posted your tracking sheet? Or would you mind? Need something simple.... Link to comment Share on other sites More sharing options...
airial95 Posted February 3, 2011 Author Report Share Posted February 3, 2011 I haven't posted it because it's an excel file, but have offered to email it to anyone who PM's me their email address. I used Buster's system and created a spreadsheet from it. PM me and I'd be more than happy to send it over! Link to comment Share on other sites More sharing options...
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