MomWithOCDSon Posted August 24, 2013 Report Share Posted August 24, 2013 As some of you other "old timers" know, we've been here since approximately October 2010, when we first discovered PANDAS played a role in our DS's long, hard fight against OCD. We will be forever indebted to everyone here and to the whole ACN family for helping us find our way through. When we began, DS was 12, completely non-functioning, curled up in the fetal position on the floor of his room, unable to do even the most mundane tasks, let alone actively participate in school or the "normal" life of a pre-teen. Four years later, two of which included antibiotics, he's doing so well and making us so proud, I just needed to brag for a minute and hope that his progress might inspire some other kids/families that are looking for their own light at the end of the PANDAS tunnel. Over the summer, DS began learning to drive, he worked his first part-time job, began his own consulting business, and attended a week-long media arts camp at a well-respected media arts college. He also did some college research and got very excited his future prospects. School started last week: his junior high school year. He's enrolled in AP and honors classes, participating in the school's robotics competition team, and digging his challenging course load thus far. The "ice cream on top" came yesterday when he had his first date with a girl in his class! Honestly, I wasn't sure he would ever get to the point where he would be comfortable with dating, let alone the first week of a new school year! I don't intend to mislead anyone. Plagued by OCD behaviors since the age of 6, he still contends with some of that; he's a bit of a Mr. Clean as well as a perfectionist when it comes to his school work. But rather than it bossing him around these days, he truly seems to be in charge of it, unwilling to let it get in his way either academically or socially. So things just seem to get better and better on our end (knock on wood), so I feel certain they can for most of us. I realize a four-year path may seem unthinkably long and protracted for some of you, and I know some have been able to walk a quicker path to overall physical and mental health than we have. But quite honestly, I'm so proud and happy in the present, and thinking of his future, that I find I don't regret those years. They've become a part of who he is and who we are as a family, and I know we're all stronger and more compassionate for it. Thanks again to you all, and much light and love to everyone and their kids! SSS, otksmama, thereishope and 3 others 6 Link to comment Share on other sites More sharing options...
searching_for_help Posted August 24, 2013 Report Share Posted August 24, 2013 (edited) What treatments do you think have helped your son the most? I'm so happy for you and your family, and the progress that has been made. So nice to hear things are going better. Thank you for sharing some uplifting and encouraging news! Edited August 24, 2013 by searching for help Link to comment Share on other sites More sharing options...
otksmama Posted August 24, 2013 Report Share Posted August 24, 2013 Good to hear wonderful news! It means so much after spending a day with our 6 yr old who was at a level 10 with all behaviors, thinking how can we go on another minute. I, too, want to know about how you managed to get healthy. We are at a crossroads...ivig w long term abx or homeopathy. I'm scared to death nothing will work. In hindsight, what worked best and what could you have gone without? Link to comment Share on other sites More sharing options...
beeskneesmommy Posted August 25, 2013 Report Share Posted August 25, 2013 So happy to hear this A 4 year path does not seem terribly long to me, hah! It's amazing that I still have my sense of humor, perhaps, like you, because my son is not nearly as ill as when we received the PANDAS dx in June 2009. The stuff hit the fan Sept. 2010, right around your kiddo's time. It's so good that you write to remind everyone that our kids can get better, lead happy lives. Here's to your wonderful son! I sure hope the date went well Link to comment Share on other sites More sharing options...
nicklemama Posted August 25, 2013 Report Share Posted August 25, 2013 Hooray! We joined around the same time. Link to comment Share on other sites More sharing options...
SurfMom Posted August 25, 2013 Report Share Posted August 25, 2013 Nancy, I am so delighted for your family and thank you sincerely for taking the time to turn back and give those of us a bit farther down the mountain some encouragement! Link to comment Share on other sites More sharing options...
qannie47 Posted August 25, 2013 Report Share Posted August 25, 2013 Thank you for thinking to share your successful outcome with us. For me personally, when I hear positive outcomes such as yours, it transcends hope... Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted August 25, 2013 Author Report Share Posted August 25, 2013 (edited) Searching for Help and Otksmama -- I wish I had a "magic bullet" to share, but we honestly threw almost everything we had at this. One thing I know for sure is that, for our DS, the long-term abx were key. They facilitated the turning point just under four years ago, supported him as he came out of a very deep hole, and got him back his sanity . . . literally! We have "experimented" with an array of supplements over the years, but the ones that have stuck are quercitin, D3, omega's, NAC, B6 and zinc. He also remains on a low dose of an SSRI (Zoloft) and a glutamate modulator (Lamictal). The signs are good that we may be able to wean some of this in the coming year, but because we see their benefit in his quality of life, we're not overly anxious about that. We did therapy . . . ERP and ACT (Acceptance Commitment Therapy), intensely at first when he began to heal, and less regularly as he came back to being able to manage himself without constant intervention. Now he checks in with a therapist about once every two months. And when we tried to return him to school shortly after beginning abx, we secured an IEP at school for him, which remains in place. He doesn't always need the accommodations contained within it, but it's been a wonderful tool for helping alleviate some of the pressure at times. I'm certain, too, that time has played an important role. His brain needed time to heal, and he needed time and opportunity to relearn how to handle himself and how to put his skills into play if and when anxiety strikes. He's a great kid, though this illness has tested him beyond any fair measure, and he's learned a level of resilience and resolve that are almost unimaginable. I do feel certain that all our kids can come through this, especially since he was in such a deep, dark place when it all began. Edited August 25, 2013 by MomWithOCDSon Link to comment Share on other sites More sharing options...
LNN Posted August 25, 2013 Report Share Posted August 25, 2013 Dating??? Driving??? "Our" little boy has grown up!!! So glad he's enjoying life the way you always dreamed he would! He's lucky to have you! Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted August 25, 2013 Author Report Share Posted August 25, 2013 LLM, on 25 Aug 2013 - 07:34, said: Dating??? Driving??? "Our" little boy has grown up!!! So glad he's enjoying life the way you always dreamed he would! He's lucky to have you! And I'm lucky to have YOU! I know, can you believe it?!?! It's almost like he's a "real boy" again! :-) Link to comment Share on other sites More sharing options...
bigmighty Posted August 25, 2013 Report Share Posted August 25, 2013 Yay! So happy to hear this report. Wishing that the rest of high school and on into college the story sounds much the same. Link to comment Share on other sites More sharing options...
T_Anna Posted August 25, 2013 Report Share Posted August 25, 2013 Thanks for posting!!! So glad to hear that he's in such a good place. Definitely an inspirational story for those of us still in the trenches. T.Anna Link to comment Share on other sites More sharing options...
junkyardjean Posted August 25, 2013 Report Share Posted August 25, 2013 Thanks for posting the update! I needed to hear this today... 2 years in with ARF, PANDAS, and all the rest of the fun that goes with it, we are struggling to see the bigger picture right now. Dd starts kindergarten in a couple of weeks - instead of the fun worry that comes with that, we are super scared, pee our pants kind of worry on what this is going to be for her. It's wonderful to hear stories - I find it gives me strength to keep moving forward and putting things into perspective. The parental strength and knowledge contained on this board is amazing Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted August 26, 2013 Author Report Share Posted August 26, 2013 Thanks, everyone! And yes! Please know that, if you're not in a "good" place at present, you can and will get there! You're dedicated, you're relentless, you're bright and intellectually curious, and you love your children and your families beyond compare. This is a winning, unstoppable combination!! philamom 1 Link to comment Share on other sites More sharing options...
JAG10 Posted August 26, 2013 Report Share Posted August 26, 2013 Nancy, I really appreciate your willingness to stick around and share all the valuable information you have accumulated over the years. I often find myself searching your old posts. I especially value the one where you took the time to go through all the scripts and supps your son has tried and have been successful. This update warms my heart. Jill Link to comment Share on other sites More sharing options...
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