Seem to be making nice progress....

Every day that i pick Dominic up from Alpine, it seems like they are saying he's had a fabulous day. Today, he had something like 135 spontaneous tacts (that'd be the labelling /vocab.)... a few weeks ago his daily average was 111. Will be interesting to see what it ends up being for the whole of April. Behaviors seem to be fairly low (today he had a whopping 2 yells, and both were because he got excited)

We're holding steady on the supplement regime - don't plan to be making any changes until June....

We're just a few weeks from the end of D11 school for the year. Still hoping Dominic will be full day at Alpine for the summer - probably won't know until mid may like last year (his presence there full day depends upon another student's IEP with the school district saying that they cannot attend for the summer - which is what happened last year and it worked out great). Looks like we'll be using our 60 visits of insurance coverage starting in May - and that means for 3 months we only would have to pay our copay of $15/visit whether that visit is for 3 hours or 7 hours. We're really hoping for the full day option.

Oh, and he lost tooth #2 today.

Edited to Add... he thought that me trying to get a picture of his gap toothed grin was HILARIOUS and therefore was laughing and squirming.... These are the best I could do.

PBS Autism Now Special Transcripts. Well Worth the perusal...

If you haven't had a chance to watch the Autism now specials this week on PBS, here is a page with links to all the transcripts, including the extended interview with various specialists.

some of my favorite quotes out of this series:

From Dr Buie's interview
"ROBERT MACNEIL: Are gastrointestinal issues in the general population, not just children with autism, increasing?

DR. TIMOTHY BUIE: I think we’re recognizing some conditions to be increasing for various reasons. For instance, celiac, as we’ve now got a better ability to make the diagnosis with antibody testing and with genetic testing, we have found that there’s a much higher frequency of celiac disease than we used to believe. And so we recognize celiac to be more common. I’m not sure that it actually is more common, but we find it better.

Other conditions, we think, are on the rise. And one condition that’s, I think, a very important condition is chronic inflammatory bowel disease – Crohn’s disease. We do see that condition on the rise, and when we look at the prevalence of disease conditions that are on the rise, it holds a fairly similar trajectory to conditions like autism. It absolutely has a higher frequency.

ROBERT MACNEIL: Do you think there’s -- is there something that we should be looking into on that level?

DR. TIMOTHY BUIE: I think it’s a very interesting issue. I mean, the slide that Martha Herbert shows and that was originally in the journal of the American Medical Association a few years ago was a slide that showed that as there has been a decline in infectious diseases, there was a significant rise in a variety of conditions.

So as measles has decreased, as chicken pox has decreased, as all of these other conditions that we now vaccinate for have come down, we now see a rise in conditions that often have autoimmune linkages. Crohn’s disease is one of them; diabetes is one of them; autism, although not linked to autoimmune conditions, is on the rise with that prevalence. So whether that’s related and whether that has something to do with the overall intestinal hygiene or other bacterial exposures or our immune environment, I think, is a very hot topic right now."

From Dr Herberts Interview:
"ROBERT MACNEIL: We have introduced, in the last couple of generations, hundreds, if not thousands, of new chemicals into our households, our farms - everywhere. Could you see that change in our, how to put it neutrally, toxic environment as connected with the rise in autism?

DR. MARTHA HERBERT: I think that what you have is definitely a question of toxics and toxics in our environment, that some of them act like our own molecules, like hormones, for example. That's called endocrine disruption. Some of them get confused with neurotransmitters. Some of them jam up our receptors. Some of them damage our cell membranes. Many, many of them damage our mitochondria -- our energy factories in our cells.

When we were having this explosion of our chemical revolution, we didn't have any way of knowing the subtle impacts on cellular function. We thought, if it doesn't kill you, it's probably okay. But now we're learning that it can alter your regulation way before it kills you. So I think that's one of the big factors. I'm also concerned about the way we've been treating our gut bugs, where the gut micro-biome -- what we're learning so much in the last few years about how much the organisms in our gut affect our whole health."

From Dr Fishbach's Interview:
"ROBERT MACNEIL: It's strange that if there are so many contributing genetic factors that are predisposed, that the symptoms of autism, at least the neurological symptoms, are relatively consistent. The disabilities you mentioned.

DR. GERALD FISHBACH: Yes. It comes back to the synapse as a molecular machine. As I said earlier, the complexity of the synapses really being revealed in our last generation. And more every day. So there are many ways to alter a synapse. One can alter the amount of chemical transmitter that's released. One can alter the number or the efficacy of the receptors that receive that transmitter and the target cell. One can alter the way that synapse learns how it may change its transmission as a result of experience. And one can understand now how the number of synapses may change during development and in later life.

The brain is not hard-wired. It's not a computer. The broad outlines, the connections between systems, are fixed. But it's now clear that there's really microscopic rearrangement and reorganization of synapses. My feeling is there may be 100 ways to do that."

a little humor for you

There's all kinds of drama going on right now in the Autism Vaccine debate, and this gem was in remarks of an article.

Love it.

If Vaccines Were Peanuts

Mother: He just ate his first peanut butter sandwich, and suddenly, his lips and face swelled up, and he couldn’t breathe!

Doctor: Calm down, don’t jump to hysterical conclusions. Correlation does not equal causation. It was coincidence. Or genetics. Or both. But it had nothing to do with the peanut butter!

Mother: But we have peanut allergies on both sides of the family!

Doctor: Nonsense! We know peanuts don’t cause allergies, because the peanut industry has kindly provided us with their own studies, done on kids with no family history or other risk of peanut allergy. The peanut industry funded, directed, interpreted, and marketed these studies, and THEY say that peanuts don’t cause allergies.

Now, you let little Timmy eat all the peanut butter sandwiches he wants, and I’ll write prescriptions for the swelling, choking, vomiting, etc.If he has trouble focusing on schoolwork while he’s choking, we’ll give him Ritalin, too. And I’ll write you a prescription for an anti-depressant for you, because you are getting hysterical.

First tooth!

Dominic just lost his first baby tooth. And he wanted a bandaid.

pictures!

Playing in the playground with the dog before the walk...


Sensory seeker crack. (spinning thingy)


Walking... while blowing on a balloon (current fixation)


Walking...



Funniest part of the whole day - the number of people who came up and asked for a Dominic's team button to wear (I was handing them out like halloween candy, I'm telling you).

5K Day!

Pictures coming, have to find the camera software and reload it first. (long story)

We had a beautiful day for the Alpine 5k - sunny, warm, no wind. We took the dog this year and that turned out to be the BEST decision ever - keeping track of Shanti gave Dominic something to do, and a focal point, and we had NO MELTDOWNS.

The armadillo from last year was there again. This year, tho, while Dominic was apprehensive about it, he didn't cry! And he stuck his finger in the Armadillo's nose. Yay!

And Dominic actually ran the whole Kiddie race, and got a medal for finishing.

We had about a dozen folks walking with us, and we finished mid pack (a nice change from last years dead last). Again, the dog was invaluable, because he kept Dominic going - sometimes at a trot.

I won the fundraising competition. Yay! Prizes this year were a beautiful engraved 8x10 picture frame, a scentsy warmer (we'll see if I can find a scent that doesn't send me into a full on allergy attack), and a $50 gc for dinner at PF Changs (Date night!). I had 60 donors! You guys are awesome. The majority of our donations were $40 or under. I did get a lot of matching from Verizon - since so many of my colleagues donated and did the Verizon matching program, so that really helped.

Pictures will be coming as soon as we find the software....

edited to add...
here are links to a couple of photos that a third party photographer took
Dominic and Shanti
Shanti, Karen, and I
Andrew, Rod, Marsha, With Dominc, Karen and JJ in the background

Todays Conv. w/the Nutritionist:

Via Email.

From: Joy
To Cindy the Nutritionist

Cindy,

I just wanted to followup and see if you'd been able to schedule time
with the NeuroScience Immunologist about Dominic's high cytokines.

Thanks,

Joy

From Cindy
To Joy

Yes, we have been trading messages. Thanks for following up and we'll get
it done.

From Joy
to Cindy

Thanks.

We've had interesting viral die off reactions to the High Vit A
protocol that we did this weekend. Very chapped lips and rash
yesterday that turned into peeling dry skin around his mouth today. I
posted at autismweb.com/forum and another parent had the super chapped
lips die off reaction to the Vit A which fascinates me. I talked with
the office yesterday, and for now we are just keeping it very moist,
avoiding suppressing it at all.

I'll make a note to check in next week and see if you have further
info from the immunologist.


Thanks,

Joy

From Cindy
To Joy

Thanks, Joy. That is encouraging news! Have you already done Valtrex
with Dominic?


From Joy
To Cindy
No, we have not done Valtrex, but depending on how this all shakes out
with the Vit A, and the results of your conversation with the
immunologist, additional Antivirals will be on my list to discuss at
our next appointment...

From Cindy
To Joy
sounds like a plan!

~~~~~

So here's a link to a discussion of the Valtrex / Antiviral protocol that Cindy's refernencing...

morning update

Last night, Dr K's office called back. If it is viral die off, we don't want to suppress it. They suggested lots of moisturizing. Before Dominic went to bed and again at 10, I slathered Vit A and D ointment on his face (heaviest moisturizer we own). This morning the area that was red and rough yesterday was flaking off. FUN. Added more A&D. Unfortunately he hates anything rubbed into his face.

ooh, i think we have viral die off....

So, we did the high dose Vit A protocol over the weekend. No negatives to report during the two days of high doses.

Monday - Dominic's lips were starting to get pretty chapped.

Today - granted, he picked at the dry spots until they bled (lovely new stim) - not only did they look almost blistery, but in the afternoon, a good inch chunk on his chin and cheek turned red and scaly.

i'm wondering if we aren't seeing some viral die off, and i have talked to the doc's office, they are going to speak to the doctor and call me back to tell me what, if anything, we should do about it.

here's an article that talks about die off. The official name is Herxheimer reaction: http://www.pyroenergen.com/articles08/herxheimer-reaction.htm

This and that...

~ Nothing exciting to report from the Vitamin A protocol. So, no toxic or negative reactions. This is one of those things that we'll see how the remainder of the week goes.

~ When we walked out of Dr K's office last time, I came home and updated my supplement budget tracking spreadsheet (i break out cost per month of each supplement Dominic takes), and we were up to $620/mo. Thats not happening. I've done some brand changing and dosage tweaking and we are back down to $400 ish a month. I decided to inventory everything and sort by when we'd have to buy more, so I'm feeling better organized. however, next appointment, we're probably going to have the "if you want to add that supplement to Dominic's routine, we have to cut x amount out" conversation with the doctor. That should be interesting.

- Dominic will be rocking the gap toothed grin soon. BOTH front bottom teeth are loose, one of them is very loose.

- Check out the fundraising! My company yearly Match is has bumped us up nicely. :)

High Dose Vit A protocol is a GO!

Talked with the doc's office this morning, and Dominic's Vit A levels come back within normal range, so he's cleared us to try the high dose Vitamin A protocol.

I can't find a link with the exact instructions they gave us, so i'm going to retype them (my comments are italicized)

We're going to do this protocol this coming weekend, and i'm really excited about it. I went back and checked lab results to confirm that the high rubeola titers were indeed IgG, and what do you know.... (the labcorp reference says anything over 1.09 is immune, and his are 3.35, so are 300% of normal)

~~~~~
JUNE 11 2006
HIGH DOSE VITAMIN A: Sid Baker and Jaquelyn McCandless

For Kids who meet 3 of the following Criteria

Regressing after MMR (check)
Continued Gut Issues (check)
Elevated Rubeola IgG titers (check)
presence of Brain Auto-antibodies (Anti-Myelin Basic Protein, anti-neurofilament) (haven't tested Dominic for this)
Lymphoid hyperplasia on endoscopy showing vaccine strain virus in gut (have not and hope never to do a 'scope on Dominic)

(Though not listed as one of the essential criteria, I always consider sideways glancing (using peripheral vision) as another important criterion) (check)

Hundreds of kids have done this now since it was introduced. I would estimate about 40-50% have a dramatic positive benefit, 25% show mildly positive benefits, and 25% have no response. Only a handful have had negative experiences, hyperactivity, headaches, drowsiness, rashes. None to my knowledge have been irreversible and if kids have these on the first days dosage I advise parents to forgo the second day (as it may be a sign of vitamin A toxicity)... I use 400000iu of Mycelized Vitamin A Palmitate for kids over 50lbs (Dominic is 50lbs on the nose, we'll probably do 375K since our vit a comes in 15K iu doses and thats a neat 25 capsules). The dose should be given all at once in the morning so that they can be observed for any signs of toxicity. Somnolence is one of the things you need to look out for; they should not be allowed to sleep - this is why its important to give in the morning so they can be properly observed. The wallop seems to work much better than stringing it out all through the day; I think the viruses need this frontal attack. PLEASE ONLY DO THIS PROTOCOL ONCE EVERY 6 MONTHS AS VITAMIN A STORES IN THE LIVER AND CAN BECOME TOXIC IF USED TOO OFTEN. After the high dose, maintenance should be between 10K and 256K iu daily according to their size (add their A from cod liver oil and other sources to get total amount).

What "needs constant supervision" really means

This post has been percolating for a while, pardon the rambling. Remember, Dominic is 6 now.

One of the reasons that Dominic has a 1 on 1 aide in public school is that he's a flight risk.
- In our life, our living room screen door is always triple locked (we even bought a hook and eye and have it up high to slow the escape...).

- Any room / closet that is out of bounds for Dominic is kiddie locked 100% of the time. Right now this includes our guest room because its my vegetable garden starting area, and he tends to pull seedlings up.

- The fish tank lid is duct taped down. We tried last week taking the tape off, and he killed 2 more fish.

- Dominic is never allowed to play in the front yard, and really only ever in the front yard on the way from the house to the car.

- The backyard is surrounded by a (locked) 6ft privacy fence. This at least allows us to have him play somewhat independently. We do have to pick up the dog poop frequently or he gets into it (plays with it... etc).

- We cannot leave something on the (gas) stove unattended even for a few minutes if he's awake. He will pull a leaf off a houseplant and go stick it in the flame to watch it burn. (he did this is in 2 minutes that I left a pot of boiling water on the stove to run his bath yesterday)

- When grocery shopping, he rides in the cart. He's too big, really, but we do that because of the containment factor. We have started experimenting with very short grocery trips, doing them with him not in a cart and so far its a 50/50 kind of thing.

- Things he cannot eat have to live in the refrigerator in the garage, the door to which is kiddie locked. This includes butter... my quiche...

This is just a few examples. Constant supervision is just that. Constant.

Mix this with his problems communicating and multiple stims including (currently) high pitched squealing, spinning in circles, spitting, picking his nose and it makes for long days.

We are so glad he goes to bed around 7.