Last night I had the incredible pleasure of having dinner with Dr. Bobby Sandage, CEO, and Dr. Lucy Lu, CFO, of Coronado Biosciences (http://www.coronadobiosciences.com/), the company which owns the rights to TSO in in the United States and Japan.  They recently successfully completed their phase I trial and are embarking now on phase II, on their way to getting FDA approval for my beloved little whip worms.  Right now they're concentrating efforts on Crohn's disease, with MS in 2nd place, but other autoimmune diseases are also being considered.  They are working with Dr. Eric Hollander of Montefiore Medical Center on a study of TSO's effects on adults with autism.  My hope is, this is just the first of many.

I walked out of the dinner feeling very happy.  Why?  Because I genuinely believe that TSO couldn't be in more capable hands.  What do I know but...I honestly feel that if anyone can get it FDA approved, and reimbursed by insurance, these people can. 

I called my parents on the way home and told them to buy more stock!

TSO, helminthic therapy, is bigger than any one company and way bigger than any one person.  But FDA approval is crucial in eventually getting the cost down to something affordable.  Right now it is too expensive to help most people.  I pray with all my heart that someday, all of us who need it for ourselves or our children will be able to do so.
 
 
I'm having a fun week.

Not.

It all started 2 weeks ago, when I had to spend $4000 on having my dog's ACL (ligament) repaired on the same day I had to spend $4000 to get Alex's cavities filled.  (He had to be under sedation for almost 3 hours.)  Then last week I got to spend $4000 on a lawyer, to help me get guardianship over Alex, who turned 18 last weekend.  Alex is officially an adult now - and I am slowly being forced to face all that implies.  (I tried to fill in the guardianship papers myself but because NY State has a policy of making sure they make things are hard as possible on people whose lives are already as hard as possible, the courts twice rejected my documents, sending them back to me with little yellow sticky notes all over them asking for more information.  (Form:  "Why does your adult child with a disability require a guardian?"  My answer:  "Because he is essentially non-verbal, profoundly autistic and requires 24 hour supervision and help with even the most basic life skills."  Sticky note:  "please provide more information")  How do I put this in a ladylike way...er...WTF?  I finally admitted defeat and dumped the whole packet in my lawyer's very expensive lap.)

I didn't get to spend $4000 today.  I'm going through withdrawal.

So I was already in a mood when I got to the lawyer's office last Thursday.  I was in an even better mood when I left, $4000 poorer, after finding out that the sum total of Alex's social security (money meant to house, feed and care for him) will amount to about $400 per month.  Yes, I know many adults who live comfortably on $4800 a year....

Way to help me keep my adult disabled child living at home, Government.  $400 a month should cover 2 weeks worth of his groceries....maybe...if he skips dinner...

All these fun things had me in a great place, emotionally, when I walked into our neurologist's office with Alex on Monday afternoon.  I had made up a summery sheet for him - bullet points from Alex's history demonstrating that his issues all come back to one thing:  his immune system is beyond screwed up.  Last Friday, the day after that bonus trip to the lawyer, I had to put Alex back on Prednisone for the millionth time.  He was back to having hours-long cluster headaches.  Friday night found me holding him on the couch, waiting for the Imitrex to kick in, while he punched my arms.  I had to call in Liam for reinforcements.  The next morning, 12 hours after 40 mg of Prednisone, Alex was full of sunshine.  Liam calls it his "happy pill."  I suppose they're mine too (seeing Alex smile is definitely sunshine in my heart)...except I can't keep him on it, of course.  (...)
 
 
Two weeks ago, my dog had his ACL (the ligament attaching his doggie tibia to his doggie femur) surgically repaired.  A very dear friend just emailed me to ask how he was recovering, jokingly asked me to give Apollo a big kiss from him.  I wrote back saying that I had just given the dog a big smootch on the lips and that this was nothing compared to how my 14 year old son practically made out with the hairy monster, laughing until he cried when Apollo would like his entire face (thoroughly) - even his teeth.

My friend just wrote his response:  " My motto is "Love me, love my dog." :-) But Apollo licking Liam's teeth can be considered beyond gross, not to mention that dogs have germs and Apollo is passing these on to Liam -- AND WITH YOUR TRAINING AND EXPERIENCE YOU HAVE NO PROBLEM WITH THIS???????????????????? Where did your parents go wrong????? :-)"

I wrote back to explain that with all my training and experience, I most certainly did not have anything against the dog licking my son's teeth.  Now, don't get me wrong - it's absolutely disgusting.  And even the sounds of Liam's laughter don't drown out the little wet, slimy, slurpy noises....YUCK.  But from a health point of view, it's been shown again and again that kids who are exposed to pets - and yes, that means pet saliva - grow up healthier, with fewer allergies. 

To prove my point, I showed my friend this link, which I thought I'd share with all of you:
http://www.cbsnews.com/2100-500166_162-519978.html which is based on an article published in JAMA, in 2009.  "The researchers think that exposure to dogs and cats leads to lower risks of allergies because children living with these animals are probably exposed to higher levels of endotoxins, the breakdown products of bacteria commonly found in the mouth of a cat or dog. Exposure to endotoxins is thought to force the body's immune system to develop a different pattern of response that makes you less likely to become allergic."

Yes, Liam is 14 now and his immune system is developed, for better or worse but...if some dog spit was good enough for him when he was 1, it's good enough for him now.  So, lick away, Apollo...even though I know where that tongue has been.







 
 
An article came out recently in Cold Spring Harbor Perspectives in Medicine (2012;4:a007799) entitled The Hygiene Hypothesis:  An Explanation for the Increased Frequency of Insulin-Dependent Diabetes, by Drs. Bach and Chatenoud.  What particularly fascinated me was one of the graphics they include, showing the incidence of Type 1 diabetes in the world.  Sometimes a picture really is worth a thousand words.  Yeah, red is high and yellow is low...as I'm sure you could have guessed. (...)