jtp

It’s that time of year again, our PANDAversary! It has been 5 years today since we have been on this journey.
 
It was 5 years ago today that our doctor told us about PANDAS.
 
It was 5 years ago today that he went against what little was known about PANDAS at the time and suggested we try 30 days of antibiotics for our 26 month old son rather than sending us to a psychiatrist to medicate him, even though he was “too young” according to the diagnostic criteria.
 
It was 5 years ago today that I looked at my husband upon leaving the doctor’s office and told him we needed to find a new doctor because “if he thinks some penicillin is going to bring our son back from being the spawn of Satan – he’s lost his mind.”
Turns out, he wasn’t out of his mind.
 
Every year, on our PANDAversary, I’ve shared my thoughts and reflections of the previous year. I’ve found it helpful for me to reflect on how far we have come on this journey. After reading through my previous reflections (http://latitudes.org/forums/index.php?showtopic=22212&hl=) I realized this year was different.
 
After 5 years, I find I’m no longer even thinking about “Life without PANDAS”.
 
After 5 years, I’m finally just enjoying living LIFE.
 
Are we fully recovered? Nope. Not even close.
 
There are still flares.
 
There are still way more meds than any kid should have to deal with.
 
There are still fights with the school.
 
There are still lots of doctors’ appointments, blood draws, and hassles with insurance.
 
There are still bad days.
 
But there’s also LIFE.
 
There are sleepovers with friends.
 
There are football games.
 
There are family trips to the beach.
 
There are lazy snuggly mornings curled up binge watching Netflix.
 
There are even some times when they’d rather be with friends than with Mommy.
 
There is time for Mommy to do yoga, read a book, or have a beer with friends (although still not enough!!)
 
There’s logging onto Facebook JUST to catch up with old friends! (Who knew??)
 
This year, we decided to stop waiting to live our lives until the PANDAS is gone, we decided to start living the lives we have -
now.
 
Have we given up the fight? Nope. Not even close.
 
The fight will continue, just as it always has.
 
But we are not putting our lives on hold anymore for PANDAS.
 
Life is too short.
 
We may not be living the lives we thought we would before PANDAS became our reality, but we are making the most of what we have.
 
Do our sleepovers with friends look like something out of Norman Rockwell? Nope. Not even close.
 
Do our football games always end with having snacks with the team instead of tears and a tantrum? Nope, Not even close.
 
Do our family trips to the beach involve a lot more crazy than your typical family? That would be an understatement!
 
But through it all, we are finding our own happiness and creating memories that involve more than anger, fear and tears.
 
God has given us so many blessings, and we decided it was time to start appreciating them!
 
And yes, it took me 5 years to figure that out.
 
It took me 5 years to grieve for the loss of the life I had imagined, and to fully embrace the one we have.
 
Looking back on my previous reflections, I wish I would’ve gotten to this place sooner, but I realize I needed to get to this place on my own pace.
 
I also realize that the all of the hard work and effort into helping my kids has played a big role in getting to the place we are now.
 
Will I still be in this same place next year? Only time will tell, but until then, I’m going to try to make the best of the crazy, unpredictable life that I have. I’ll take each day as it comes, cherishing the good days, and keeping perspective on the bad ones.
 
Folks are often asking for stories of hope and recovery. I can’t speak to full recovery, but I can share our story of hope through the chaos.

Nancy,
 
Brag away, that's awesome!!
 
Jeannie

It is a parasite that used to live in us before we "cleaned up". It doesn't attach and grow and live in you. It lasts 2-3 weeks.....which is why you need to dose that often. I don't believe it is something you end/stop. From what I was told, it's a life long thing. TSO (pig whipworm) is VERY expensive. For a bit, I didn't understand why everyone was saying it was so expensive and I was paying $100 for 4 doses (with shipping from England). It is because we are doing HDC (larvae of a rodent tapeworm found in beetles). I know, I gag everytime I read it or say it. It is a clear liquid. You see NOTHING. It needs to be taken with a fat. So, I give it in a small amount of Chocolate Almond Milk. Honestly, you get to the point where you have tried EVERYTHING. and it's working. It's doing exactly what she said it would do.....if it continues I plan on making a big stink about how well my kids are doing and how everyone should try it. Especially, if you have gut issues.

Ordered today!! I will keep you posted.

jenniferg,
 
Yes I have heard of this, and as a matter of fact, DS's Integrative Physician has suggested we check into this. She said most people can't get over the ick factor, but has seen some positive benefits...I was one of those parents that can't get over the ick factor and decided not to try it.
 
If you do try this, please let me know.

Please add JTP +DS & DD...thank you.

I agree with Teri. He is well worth the wait.

I have to chime in here. We see Dr.B and he is an amazing Dr.! He is brilliant, compassionate, and professional. We have been traveling to Ct. Since March of 2012. Dd 7's onset was 9/11. I believe the issue with the secretaries is that the practice has grown tremendously. Half of his practice is dedicated to Allergy patients and he also sees a large number of PANDAS patients (I have heard in the neighborhood of 1,000). I don't think they can handle the demands. So it's not just you - I have been on the other end and felt the frustration. Insurance coverage was one of the first questions we asked as we made our appt. We waited 3-4 months for our initial appt with Dr.B. and he is well worth the wait.

Hi and welcome to the forum.
 
I usually post on the PANS forum but your Topic caught my eye. My DS main PANS symptoms were Tics but he also had other sensory issues and adhd behaviour when flaring with PANS. Since he's been on an antibiotic I haven't noticed any of his previous Tics. He does, however, crack his joints in his fingers and toes. He does this when he's watching TV or when he's in bed before he falls asleep. He only cracks his toes and fingers once then stops. This has started a couple months back.
 
I remember lots of kids cracking their joints on purpose when I was child and the parents saying you will get Arthritis if you keep doing that. So I really didn't think this was a Tic or a Tic for him. Now if I mention this to him he will just do it more and laugh. I'm hoping this is just a habit and will eventually fade away. I do hope that he doesn't break a toe.The Dr dismissing your comment about him cracking his joints for 5 weeks does not surprise me at all. I find most mainstream Dr's don't care about getting to the bottom of something they just want to fix the problem at hand.
 
I don't think my post helps you in anyway but I wanted to let you know that I am dealing with it too.
 
I hope other's can give you some better advice. Good luck