Saturday, December 11, 2010

PANDAS.....It has a name!

Ladies and Gentlemen, we have diagnosis.  I can't tell you how much relief it brings me to give a name to this thing.  B has PANDAS or ‘Pediatric Autoimmune Neuropsychiatric Disorder Associated with
Streptococcus.'  I'd like to tell you all about this disease named after a cute, lovable bear but it's all new to me and I have a lot of research to do.  Here is a link full of great information:

Here are a few things we found out today:
1. B is not metabolizing saturated fats properly so we will be adding more.

2. We should have started B12 shots and olive leaf extract months ago.  We have a loooooong list of supplements to add to his already extensive list.  Any tips for a little guy who can't swallow pills and hates smoothies?

3. There is an Asian Market that has sweet potato pasta.  Can't wait to get back to that city so I can hunt for these!

4. B is hypoglycemic in the night and needs a high protein snack before bed.

5. His yeast has increased (already knew that) so we need to increase his crazy expensive probiotics.  If you see us in our van without hubcaps please know we bought probiotics instead.  Ha!

6.  B has not grown at all (height or weight) in the past 3 months...probably longer.  Hopefully with these supplements, he absorb more nutrition.

7. His metal levels have decreased a little, so he's chelating on his own a little.  With the exception of mercury.  He is still accumulating and we have no idea how.

I'm sitting here in B's movie theater.  (His dark room, bottom bunk, and a portable DVD player).  We are watching Dumbo.  This was his favorite when he was 2.  It's bringing back so many memories.  He has a wooden magnetic train he used to push up and down the hallway singing, "Dumbo choo choo train.  Going down the track. With a smoky stack."  I now see the love Dumbo's mother had for him in a whole new light.  She would do anything to protect her sweet baby.  Just like we are doing everything we can to protect and treat our sweet B.

Earlier this week, we made a chocolate cake (the best ever!) for B to take to Cubbies to celebrate Jesus's birthday.  B asked me, "Are we sharing with my friends?"  I told him there would be other cake for his friends.  His response: "Oh, so just me and Jesus are going to eat it?"  I love this little guy so much!  He never fails to make me smile.

1 comment:

  1. Disregard my previous comment asking if your son has PANDAS! Who is your dr? I'm curious to talk with you more about who gave you a diagnosis. There is a wonderful forum at ACN Forums and a lot of PANDAS parents online on FaceBook as well.

    A fellow PANDAS mom,