Finally Some Great News

11/30/2008

 
As of today, this cold, rainy November 30th, I officially declare hookworms to be rockin’.

I’ve been waiting for this day for 7 months now.  I give the news to you all as an early holiday gift.

Alex is the best he’s ever been in his life.  Now, of course the negative among us might say that’s not a high bar and I can’t really disagree.  On the other hand, considering that we were not lucky enough to get intestinal parasites until he was 14 years old, I would argue that his improvements are that much more significant.

The weird peeing thing has finally stopped and Alex is once again sleeping through the night.  Physically, he’s never been better.  His mood is just wonderful – he’s so happy that you can’t help but laugh when you look at him.  He’s grinning ear to ear like the Cheshire Cat.  His appetite is fine, BMs beautiful, no gas at all, coloring great.  In therapy this weekend he independently marked the words that started with a given sound.  “I had my hands in my lap!” his teacher told me enthusiastically – and somewhat stunned. 

Liam – doing great.  Down to 10 mg of prednisone only 3 to 4 days per week.  He’s lost 6 pounds since September and gained more than a 1/2 inch.  He looks great.  Still somewhat fatigued, but ok.  Overall, he’s doing very well.

At this point, I’d say we now are now truly starting to see what these babies can do.  The fall allergy season is behind us, we’re solidly in to the downward inflammatory period from the last inoculation, we’re 7 months post the first dose.  Even if this is all I ever get from them, this experiment has been a success I can now say with conviction.  But, if you’ll forgive the phrase, I have a gut feeling that we’re only seeing the tip of the iceberg so far.


 

Check Out This Video

11/25/2008

 
http://www.aspheliapharma.com/media.html

I believe this is the company that have linked up with Ovamed to market the TSO in the U.S.


 

TSO Miracles

11/24/2008

 
I have a friend whose non-verbal son has become very verbal in 3 months on TSO.  I have seen other children make progress that verges on miraculous:  major reductions in self-injurious behaviors; increased cognitive functioning; major increases in communicative intent and communication; improved moods and drastic decreases in tantrumming behaviors, etc.  All along I’ve been wondering why TSO isn’t getting more attention from the doctors in the autism community.  Why aren’t they pushing everyone to do this?  I know it’s expensive but talking about a good use of funds…

Yesterday I talked to one of my sons doctors.  He does have some patients on it, he told me, and one went from being entirely non-verbal to quite verbal in a very short period of time.  So, it’s not just me who has seen this. 

I hope with all my heart that people who are doing this and seeing spectacular results start to step forward and go public with this.  The only way the word will get out to all those desperate families out there is if we speak out.  I will never in my life forget some of the moments TSO gave us:  Alex driving the race car in Disney World.  Alex, picking up a pencil and matching the word color to crayons.  2008 has been the best year Alex has ever had.


 

Update: 8 Weeks Since Last Inoculation

11/23/2008

 
This weekend marks 8 weeks since the boys had their last inoculation.  This past Monday marked 30 weeks since we started this whole process.  My but time flies when you’re having fun.

Or so I’m told.

Well, things are getting better and as always, life is interesting.  Starting on Monday, coinciding with both the sudden cold snap here in NY and the theoretical start of the uphill climb toward decreased inflammation post inoculation (i.e. the passing of the 50 day mark), Alex suddenly started to sleep somewhat better.  Monday and Tuesday nights he went to bed at 11:15, got up only once at 4:00 to pee, and went back to sleep until 6:30 in the morning.  Wednesday night he fell asleep on the couch at 10:00, got up once to pee at 12:30, and then went back to sleep until 7:30 in the morning.  That’s a record 7 hours of no-pee-sleep!  Last time that happened was July.  Last night was no picnic (didn’t fall asleep until midnight and was up by 6:00), but still, I’m not complaining.  (Well, I am complaining but just not as loudly.)  This is way better than we’ve had for months.

I have no idea what to make of it.

He also continues remarkably calm and his stimming is down by 75-90%.   He continues to do some remarkable cognitive things, for him, reading many words, for example.  But I find his concentration to be very poor when I try to do anything with him and more than that, I see an increase in OCD behaviors.  For example, he is only listening to one song on his Walkman now, which upsets me.  I don’t know what to make of any of this – such extreme goods and bads at the same time.  I think only time will help resolve things.

Liam is now on only 10 mg of Prednisone every other day.  His eczema remains in remission and his behavior is just great again.  I’m now going to allow myself a moment of extreme maternal pride:  he brought home a straight-A report card this past quarter.  There were absolutely no negative comments on his behavior either…this is a first for us.  I spent the evening doing victory dances around the house, much to Liam’s annoyance.  (”Stop it, Mom!  You’re being weird!”)

It’s not often I have things to dance about these days so I think I can be forgiven. 

I myself got 3 more worms this week, bringing me up to 15.  Generally, I feel ok.  My belly pain is up and down, my muscle pain isn’t too bad at the moment.  I’m tired but…duh…

My Dad says he feels about the same.  This was a terrible fall for him too, he says.  Lots of congestion.  So, really, I can’t say that he yet feels any difference from the worms.

Overall, though, if things remain as they are this coming week, I can say that this won’t be a Thanksgiving that I spend curled up in fetal position sobbing, which is an exciting prospect.  Actually, I’d say that because of intestinal parasites, I actually feel that I have something to be thankful for.  Now how often will you ever hear someone say that?

I’m going to now switch hats, and jump over to my TSO page for an update on some whip worm news…

 

More Thoughts On Worms

11/19/2008

 
The real question is – does anyone spend as much time as me contemplating intestinal parasites?  It’s no wonder I have such a rocking social life.

I thought it would be a good idea to post an email I wrote to our DAN! doctor a couple of days ago.  Alex’s sleep is so bad that he suggested that it might be time to kill off Alex’s worms, let things go back to “normal” and then restart.  At 3 in the morning, when Alex is running to the bathroom 20 times to pee, it’s a tempation – believe me.  On the other hand, we don’t actually know that the current problems are caused by the worms.

Here’s my email:

 

Interesting Update

11/01/2008

 
Just when I think I’ll never sort things out, something happens to make my confusion even more profound.

Alex:  in every way better than a week ago except that he still can’t sleep.  At all.  We’re up at least 6 times a night, often more.  And nothing is making a dent in it.  I’ve tried every natural remedy and now multiple medicinal ones – nothing makes an iota of difference.

On the other hand, his stimming is way down as is the hyperactivity; his BMs are works of art; he’s got next-to-no gas; his mood is excellent and very stable; his eating has normalized (no more compulsive eating); his belly is shrinking; no cognitive gains have been lost, although he’s not talking as much; he’s still very loving. 

I don’t know how much the exhaustion (which is bone-deep in me, so I can imagine how he must feel) is affecting his attention, but academically he is just good, not great.  We haven’t lost anything but the progress is very slow now.