Sunday, April 24, 2011


B is doing really great.  Sometimes we get that look from people I know means they wonder if there is anything wrong with B's health at all.  I wonder if they think I'm some kind of Munchausen mom.  Believe me, this is not the case.  I would LOVE to give B slice of cake and ice cream or just make him a pb&j on the fly.  It would be FANASTIC to not give him allergy and B12 injections.  It would be AWESOME if he didn't have to take  supplements.  The fact that we get these looks means all of the above is working.  Hooray!

We had an interesting time this month when B caught some kind of infection.  We suspect strep because of the PANDAS and the way he was acting.  The throat culture came back negative, but strep can target other parts of the body, so I'm not convinced it wasn't a PANDAS flair.  Any veteran PANDAS moms want to weigh in?  This really is all new to me.

B woke up screaming that the light was hurting his eyes.  Uh-Oh.  He had a fever and was lethargic.  I sent him back to his bed.  Periodically, he'd get up to use the rest room or get a drink.  When he washed his hands, he turned the water off, then on, then off, then on about 10 times.  Then I heard a squeak, no, more of a hiccup.  When I checked on him, I realized he was swallowing air.  Over and over again.  A new tic.  Throughout the day, his little tummy became so distended, he was crying.  "Mommy, is my tummy going to feel this way forever?" More squeaks.  Swallowing air.  He was throwing screaming tantrums.  Fixating on things.  At one point he screamed, "I'm going to throw up!" and ran to the bathroom where he let out the longest burp.  Poor kid had swallowed too much air.  The next day, he just cried and yelled, "I can't stop burping!"  He couldn't stop swallowing air.  His other tics all came back, too.  I was worried.  

We called his DAN.  With B's leaky gut, antibiotics are a scary thing.  Antibiotics create more yeast which leads to a leakier gut which leads to more food allergies.  However, a PANDAS flair damages the brain.  Basically, B creates too many antibodies to strep and they attack his brain.  So, the strep needs to be taken care of.  Our DAN recommended we take him to our GP and start B on an antibiotic.  We did just that.  His tics went away except for the swallowing tic.  It seems pretty comfortable.  Our DAN has ordered a test to measure B's strep titers.

Shortly after we finished the course of antibiotics, B's shoulder tic reemerged.  We've noticed he is reacting to some new foods.  Unfortunately, I haven't been able to pinpoint the culprits.  But his ears will turn red, his tics will increase, his tantrums will flair, he'll get a few red splotches on his face.  But this is on a small scale compared to what was going on when he was sick. 

This really showed us that we need to heal his gut, not just avoid foods.  He can't stand to lose any more foods, so we researched some options.  We have decided to follow the GAPS (Gut And Psychology Syndrome) diet.  I will blog more about GAPS hopefully tomorrow.  We will begin when we return from Autism One.

Speaking of Autism One.  I would like to give an overview of the sessions I see on my blog.  I may have Erik be a guest author because he is the one with the scientific brain.  Coming soon in May (I hope!).

Oops...forgot to add.  B has grown and inch and a half and gained two pounds! Yay!  He is growing!


  1. Sounds like it's been hard, but like things are starting to look up. I know that peek of sun coming through the clouds, it's a beautiful sight.

    Give B a big hug, and have everyone give you a big hug from us. You deserve it.

  2. Thanks. Things are looking up :) It's great to "see" you again!

  3. Im curious, how do you heal leaky gut? Im convinced that is what Liam has! I hope you and B have a good week!

  4. The GAPS diet is suppose to heal and seal the stomach lining and kill yeast overgrowth. I hope it works. I guess we can always stop it and go back to what we're doing now if it doesn't.

    I think Liam has leaky gut, too, from what you've told me. We need to catch up! Did you guys see Dr. B? How is Liam doing?

  5. Have you done Lyme testing? I have two PANDAS daughters and they both came up almost identical on the Igenex testing, but negative on the Western Blot through LabCorp. Mine was slightly different (we think theirs is congenital) but mine is more chronic. Just tossing that out there in case you haven't heard/thought about it. A lot of the kids with PANDAS seem to be coming up positive for tick-borne illnesses.

  6. We haven't, but you're the second person to talk to me about this. I'm going to ask his doc at his next appointment. Thanks!