Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Sign in to follow this  

Recommended Posts

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!

Share this post


Link to post
Share on other sites

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 by searching for help

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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 ;)

Share this post


Link to post
Share on other sites

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 by MomWithOCDSon

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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! :-)

Share this post


Link to post
Share on other sites

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 :)

Share this post


Link to post
Share on other sites

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!!

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×
×
  • Create New...