Monday, May 21, 2012

The one that will more than likely be erased.

What happens when you remove dairy from your diet and then have a dairy binge?  Brain fog.  I really shouldn't be allowed to type right now.  It's that foggy.  But, the house is quiet.  The kids are at my mom's because it's that time of year again.  Time to get to Chicago and meet with old friends and gain new friends.  Hundreds of parents walking similar yet different paths.  We all get each other....nobody thinks we're crazy.  Annnnd there are so many medical lectures and advocacy lectures.  Real doctors, trail blazing doctors ready share information with us.  Autism One.

 I want to learn everything I can about PANDAS.  That is my goal for this year's conference.  Compared to other kiddos with PANDAS, I think B is doing very well, extremely well.  However, his tics have become more prevalent and an issue that we have been dealing with for quite some time has gotten worse.  I'm just going to lay it out in hopes that another parent going through the same might have an answer or may need to realize it is a PANDAS symptom.  And, when B gets a little older, I'll erase this post for his privacy.....or when this dairy high wears off and I realize that maybe this wasn't a good idea.

B has been having some problems with bladder control.   He's been toilet trained for almost 4 years, so it's kind of a bummer for him.  Bed wetting has always been an issue, but instead of small accidents, we've been having to change the sheets often.  He's been soaking through 2 layers of nighttime pull ups.  It's not uncommon for kids his age to wet the bed, so we just thought we'd wait it out.  However, now incontinence is affecting him during the day.  Strong urgency and frequency.  He's not happy about wearing a pull-up  when we travel, but just 40 minutes in the car has resulted in accidents...and this after stopping at the restrooms multiple times.  Accidents have been happening at home, too.  I posed this question on a PANDAS forum and I received a few responses.  One is that it is a bladder tic.  That would make sense considering his tics are frequent now.  The second was PANDAS attacking the nerves.  This theory scares me a little.  A few parents commented that their children were losing hearing function and diminished sight, as well.  I'm not going to dwell on that until I can talk to his doctor.  Another parent mentioned food allergies.  Well, goodness knows we've got a few of those!  I might ask his doc if he will retest B.  It's been 2 and a half years, maybe some things have changed.  Anyway, I'm really hoping this topic will come up at one of the sessions at Autism One.

We also may look for a second opinion.  A1 is a great place to meet the docs and get a feel for how they treat their patients.  While we love Dr. B and everything he's done for us, it may be good to get another perspective as far as treatment.  I feel like there is something we are missing or overlooking with B.  A new set of eyes may help.  Prayer would be greatly appreciated.  Thank you!

Now, I'm off to take some activated charcoal to counteract the effects of my dairy consumption.  I don't think I'll be doing that again anytime soon.  It makes me loooopy.  Kind of the way B would zone out after consuming milk.


  1. I wish I had an answer for you. My son didn't potty train until 6 years old and he still has accidents that seem to make no sense, and you know about his other bathroom issue right now. But I am praying for you during this. Keep us posted, I am truly interested in what you find.

  2. Thinking about you and hoping you find some new info that will help in many ways. Praying for a good conference!