Thursday, June 30, 2011

Gearing up for a week out of therapy....

Dominic has all week next week as his summer break.  We'll be fairly low key, but are planning on doing some fun stuff...

 - hopefully we'll find a wading pool for him at a decent price and set it up for outside water fun (swimming pools = chlorine = bad, so we aren't doing them this year  - plus for 1 adult and 1 child, we're looking at $15/visit for the public pool in town. Ridiculous)
- We're going to try to catch a matinee of Cars2 (if we go, this will be his first ever trip to the movie theater)


other things we're considering - the Zoo (depends on the heat), the playground/fountain at America the Beautiful Park (also depends on the heat)

But mostly, it'll be a week of relaxing, and just playing. 

Wednesday, June 22, 2011

updates and such

So… what are we doing and why hasn’t there been a blog post in so long? 


Dominic –
-          is doing great will full days at Alpines.  Negative behaviors have dropped in half in June compared to May.  Its just easier on him to be in one place with one set of expectations.  I fully expect negative behaviors to go up again in the Fall.
-          Is loving the iPad.  They’ve now integrated it into his therapy at Alpine, and he really enjoys it.  He’s figured out how to shift between app’s and  its become a useful independent learning tool outside the therapy setting.
-          Was a non responder to the trial we did of Evening Primrose Oil / Grapeseed Extract, so we stopped after 2 weeks
-          Is having fewer instances of randomly dilated eyes (we think this means the adrenal supplements are doing their job)
-          Really enjoys playing in the mud.  And spreading it all over the house.



I have just finished reading the book Unique Healing by Donna Pessin.  Interesting book.  Her entire theory is that an unhealthy bowel doesn’t excrete acids/toxins/etc, and so an unhealthy bowel leads to almost every health issue, including ASD / autoimmune disease / addiction / hormonal imbalances.   [remember, my theory is that the measles shot Dominic got while in a major yeast flare that perforated his gut is the original injury we are dealing with] . She has a fairly aggressive protocol that she says will heal the bowel over time (not a quick fix – we’re talking 15 months +), and I’d like to try it while we continue managing the other symptoms.   We would be able to phase out a number of the current supplements (that are bandaids/crutches) if her theory is correct and her protocol actually does heal the bowel.

The program consists of:
-          Food Grade bentonite Clay (to pull acids and toxins out of the body and facilitate feeling better quickly) [apparently this is a chelator, but doesn’t seem to have the brain fog effects other chelators have had for us. I’m kind of interested to see what it would do to his toxic metals levels]
-          A product called “Bowel Strength”  which contains: berberine sulfate, grapefruit seed extract, gentian root, black walnut hulls, goldenseal, Jamaica quassia bark, sweet wormwood, garlic.  That encourages the growth of good bacteria (she uses this interchangeably with probiotics, but the argument is that at the doses required this product is much more economical than high dose probiotics)
-          High Dose mB12 (Dominic’s already on, she recommends sublingual, but I would rather stay with intramuscular)

I will be bringing this up at our July Dr K appointment (because if he “prescribes” it, then I can write it off our taxes, and also because I do value his opinion on these things).  I have the paperwork to fill out for an appointment with her as well, and will be setting up an introductory phone consultation sometime in the next couple of weeks so we make sure to get dosage right and not make any rookie mistakes.

While I pretty much automatically distrust any program or product that SWEARS it’s the be-all, end-all answer to ALL MALADIES, what this woman is saying is nothing new in the ASD Biomed community.  PH, healing the gut, eliminating acids, etc etc are all core Biomed concepts.  Her way of addressing them is different. For example, in DAN, we just throw supplements at things to try to bring the balance back.  So bandaids instead of healing under lying issues.  This is one thing that we’re really frustrated with  - yeah we’ve made great progress on these supplements, and had some really amazing WOW’s.  But we can’t stop them, or the progress goes away.  And so we’re hemmoraging money every month and really only treading water.  
So if we have the opportunity to heal Dominic’s gut we should try.  (and we’d be able to taper off a number of the other supp’s he’s on, this stuff has antifungals and immune boosters in it, I can probably pull $150/mo of supplements out immediately and replace withn these.  So it would be an even cost at first – then go down as we tapered off of other stuff).  We'll see what comes of it. 

Sunday, June 12, 2011

For those of you who ask, what its like. This is autism. This is why we are fighting so hard day in and day out to find the money to keep Dominic at Alpine Autism Center, where the structures are in place to stop non compliance and elopement, where they have the resources to help the sensory issues. And where the family support is phenomenal.
 Alpine has given us the tools to handle elopements and non compliance like the girl in the story.  Yes, we've had those days.  But not in a very long time, and we have the tools and training now, thanks to our every single month parent meeting at Alpine, to stop the non compliance before it gets so out of hand Dominic runs into a street. 
The chip in meter in the side bar is to help us pay for Alpine after all the insurance money goes away in 2012  Because somehow, the day he turns 7, the Powers That Be say he doesn't need therapy any more.  Granted, we aren't getting a huge amount now (he gets 60- visits a year), but the shift down to getting nothing is going to be rough, and we're hoping to have accumulated a cushion to help pay for it when the times comes. 
 
 
 

Thursday, June 9, 2011

this and that....


Wow, what a morning of good posts in the blog-o-sphere.  I need to share some of them.

First, over on Diary of a Mom, Jess talks about how hard it is to be around people who are superficial, who aren’t REAL.  She talks about how many of her relationships have faded in the time she’s been an Autism mommy.

Its interesting, because I was literally just talking to my friend Allison about this yesterday, and its been an ongoing conversation with another mom friend of mine. .  Dominic has exactly zero playdate friends.   Part of that is scheduling and schools – the kids we used to play with are in other parts of town, different schools.  Dominic’s schedule is nuts.  Part of that is that it is really difficult for the people who knew Dominic pre regression to relate now, to understand what would be something he’s able to do.   Some of it is that many of the superficial friendships you have in a mom’s group can’t hold up to this kind of intensity.  (the handful of adult  friendship’s that HAVE held up are the ones that took root outside playdates)

We went to the zoo with Allison and her kids earlier this month.  Dominic did great – one episode of non compliance, and some minimal fixating. I was so proud of him.  Allison was surprised that his behavior was as good as it was; taken aback by the fixating; and absolutely exhausted in watching me.  Hearing someone tell you that a child requires 100% supervision is very different than watching said someone provide that supervision.  I do not take my eyes off of him in public, period.    The funny thing about that day is, I didn’t feel like I was doing any more than I usually do. Which probably explains why I’m generally tired most of the time.  

The other link I want to share is to Autism mommy bloggerGinger Taylor, who is a fierce activist.  She’s had to become that for her son.  She is the director of the brand new Canary Party.   In its infancy, it is a political party geared towards clearing medical/pharma corruption.   Her blog post today talks about the evolution she’s gone through, from being an Autism Mommy just documenting what helped her child make progress to becoming an activist. 

Quoted from her blog – because its worth the read.   And really, go read the rest of it too.  I am making time to be a part of the Canary party, time I just don’t have.  Because its important.

“As [my son] got better, and I got excited about sharing his progress on biomed, I found more and more bad faith players. I made the oh so naive mistake of thinking at a middle aged physician using an internet moniker to mock doctors he didn't like might actually have a good faith conversation on autism causation and treatment. I thought the American Academy of Pediatrics would want to know about treatments that make struggling kids healthier and would want to reform their practices and policies to prevent neurological damage to children. I thought that the Centers for Disease Control and Prevention would actually want to Prevent and Control Autism. This blog is a long history of all the people I took at their word when they said that they wanted to prevent autism and serve those who have it.

It took me a full year of making excuses for all these bad actors, of thinking... 'well if they only knew that______ then things would change quickly' and 'I am sure that they will want to sit down and look at all this amazing information any day now' and even 'If they would just talk to us face to face and see our kids videos, the will see we are not crazy people and the dialog can begin'... and then CDC et al ignoring David Kirby's book, that I finally started to think... 'oh... maybe they know all this and don't want to deal with it'….

Well at this point if we don't declare these people working in Bad Faith, then we are just morons and we get what we deserve. That is all their track record shows, for much longer than the seven years that I have been documenting these issues.

And when we look around us, we are only one of the groups that is being treated like this. Families struggling with cancer, lupus, chronic lyme disease, chronic fatigue, diagnosed mental disorders, and dozens of other problems, they are getting jacked in one way or another by abuse and neglect from the medical establishment.

It is time to call a spade a spade and say outright that corruption in the medical establishment is rampant, that power and profit motives are being served at the expense of patients, and it is time for the corruption to be cleaned out and for the abusers to loose their jobs. …

We have to separate the wheat from the chaff, remove those bad faith profiteers posing as health professionals and replace them with people of good faith, actual healers, who do their jobs.

We know who the bad faith actors are. We pretty much knew it after our first encounter with them, but pushed it off and waited for them to prove it 20 or 30 more times over before get around to asking that they be replaced.

But as we have learned that our good faith and reasonable "asks" are just ignored (and sometimes mocked).  It is now time to DEMAND the medical system change, or change it ourselves.

Thus is born The Canary Party.”

Monday, June 6, 2011

For those who tell me a vaccine couldn't have cause Dominic's regression...

I love the way the other Mom who wrote this put it...

"When I tell people that my son .. was injured by his vaccines they’ll often say “are you sure?” This really strikes me because if I had been standing on a side walk and Nick had rushed into the street and been badly hit by a car, no one would ever doubt me when I told them. Yet my experience as a witness to his regression after vaccination is frequently discounted."

Go read the whole article. Its worth it.  Its why I tell everyone in my life who is pregnant... promise me you'll do your homework on vaccines. 

Sunday, June 5, 2011

Quietly amusing himself w/the iPad






Seriously, he's been sitting calmly doing the Zoo Animals flash card app for half an hour.  Color me completely impressed.

We also spent some time with the simple spelling program (3 letter words) which he liked- its a matching thing, you match the letters over, and then the picture of the item dances and plays music; the piano program, the xylophone program and the popping bubblerwrap program. (hey, its kind of fun).  But the zoo animals are his FAVORITE.

----

Updated to add..... he even took it to the bathroom and continued flipping through the flashcards there....

Friday, June 3, 2011

One of these years I have GOT to get to the Autism 1 Conference...

One of the ladies on the BeyondGFCF yahoo group kindly took copious notes at Dr Bradstreets lectures... here are the segments that I found really interesting in relation to Dominic.    I'm documenting them here so that I remember that I want to dig further into a lot of this stuff w/Dr K.

------------

Dr. Bradstreet's talk, A1 2011:

(Dr. Bradstreet = DB)

1. TNF-alpha
____________

DB explained how the article "Beneficial neurological effects observed in a patient with psoriasis treated with etanercept" was a big revelation for him:

Am J Clin Dermatol. 2010;11 Suppl 1:44-5.
Beneficial neurological effects observed in a patient with psoriasis treated with etanercept.
Bassi E, De Filippi C.

Abstract
A 53-year-old woman with a history of psoriasis presented with severe cutaneous lesions associated with psoriasis. The woman was mentally handicapped; she was able to converse monosyllabically with her mother only and was very limited in social interactions. After preliminary investigations, a biological treatment was proposed. Etanercept was started in October 2006. The patient responded rapidly and, after 3 months, achieved a 75% improvement in the psoriasis area and severity index (PASI 75) score. Most notable, however, was that she began interacting with other people, even if they were not familiar to her. Subsequent cutaneous relapses were treated successfully with etanercept. Very few articles regarding etanercept and neurological or psychiatric problems are present in the literature. According to recent studies, etanercept could improve verbal fluency and cognitive and behavioural functions in Alzheimer's disease, so that we can suggest a potential role and use in neurological disorders.

DB explained that this article show how powerful an effect reduing TNF-alpha can have on autistic symptoms. He cautioned that Ethanercept is not a safe medication to treat autism due to its complications (lymphomas and worsening of IBD), but we need to seek other ways to reduce TNF-alpha.

2. GcMAF and nagalase
_____________________

DB stated that vitamin D regulates the gut microbiome..  GcMAF is the activated receptor of vitamin D, and allows the macrophages to target cancer cells.

The enzyme nagalase is produced by infected cells and blinds the macrophages, preventing them from killing cancer cells, in other words, nagalase acts as a defense screen for infected cells.

Now if GcMAF is injected in the patient together with vitamin D, it drops this defense screen and allows the macrophages to do their job, leading to:
- complete clearing of HIV
- remission from metasatic tumors

GcMAF research is done in Europe but not in the US.


3. Inflamation
______________
DB stated that experiment have shown that elevated pro-inflamatory cytokines directly cause avoidance of eye-contact.

The MIND Institute found auto-immunity in children with autism and in the mothers, but the auto-immunity found in mothers is different than the one found in children, interestingly.

DB reiterated that the #1 effective treatment for autism (according to parents, I guess), is chelation.

The more immunodeficient the kids are, the worse the autism.

DB then explained that ingestion of gluten, soy and dairy generate a huge increase in TNF-alpha. That in itself can explain why GFCFSF diet can be effective in autism, because it decrease the TNF-alpha production. This DOES not involve traditional allergic responses though, the TNF-alpha production resulting from these proteins follows another mechanism, and involves many more proteins than just those from gluten, soy, and casein. For instance, BD stated that at one point anything fed to his son would generate a reaction.

DB then cautioned against Neuroprotek: quercetin has negative side effects, on one hand it blocs the production of serotonine, andon the other hand, substances in quercetin can convert to (quinolinic acid), a powerful neurotoxin.

4. Persico's work
_________________
DB then talked about Persico's work, especially his finding of elevated P-cresol in the urine of children with autism. P-cresol is the most neurotoxic substance known. Only one lab in the world can test for it, Laboratoire Philippe Auguste in France. It is believed that clostridia bacteria in the gut produces P-cresol from phenols found in the diet.

DB also spoke of Persico's findings that viral persistence of polioma viruses in the brain is more common in autistic patients than controls (even though everybody is exposed to these viruses).

Persico did not find more HHV6 in autistic brains than in controls.

DB then stated that persico was wise enough not to look for the measles virus, because he knew that if he would look for it and find it, it would be the end of his carreer. DB reiterated that several years ago, when he was still doing spinal taps on patients, he did find measles in the CSF of autistic patients.


5. Down syndrome
________________
DB mentioned that incredibly, the inflamatory profile seen in Down syndrome matches the one seen in autism, though we don't know why.

6. Finegold's work
__________________
DB explained that the gut mucosa needs adequate levels of cysteine and vitamin D to have adequate defenses against bacterial overgrowths of clostridia and desulfovibrio.

-> If cysteine and/or vitamin D are deficient, the intestinal mucosa won't be able to control these overgrowths.

(My note: folate is needed to produce cysteine, and folate receptors are present on gut mucosa, so maybe folate antibodies might be an issue there too, in addition to vitamin D deficiency, B12 deficiency, and/or methylation problems.)

Finegold also found that desulfovibrio is more prevalent in autistic children. The telltale sign that someone has overgrowth of desulfovibrio is a rotten egg smell after ingesting garlic, DMSA, etc... because the bacteria feeds on the cysteine present in these and produces hydrogen sulfide.


7. DB musing
____________
DB theorizes that autism involves:
- a persistent pathogen inducing loss of self-tolerance (autoimmunity).
- loss of stem cells and counter-regulatory TREGs
- deficiency in transforming growth factor

8. Cyclic Cidofovir
___________________
Efficient antivirals are lacking. Cyclic Cidofovir is a very toxic antiviral, which can become much less toxic and much more efficient if encapsulated in a liposome.

Cidofovir-loaded liposomes are effective against lymphoma.

Unfortunately, the liposomal formulation is not available yet, but we should keep this in our radar as potentially effective treatment coming in the future.

9. Cholinergic abnomalities
___________________________
There is evidence of reduced cardiac parasympatic activity in children with autism, with cholinergic abnomalities.

The cholinergic anti-inflamatory pathway has not been explored much but could be promising in autism.

Drugs affecting the cholinergic function are:
- galantamine (modestly effective)
- nicotine (very effective, as patch)
Nicotine and galanatime given together have been found very effective to reduce microglial activation in HIV encephalitis.

Namenda was found effective to increase cognition and language.

Nicotine at low dose inhibits dopamine. Nicotine at high dose has a stimulant effect.

Nicotine was found as effective as sulfasalazine to treat UC.

CDP-choline can be effective (available OTC as cognizine).


10. PANDAS
__________
In DB's experience, azithromicin is not effective anymore against strep. The only effective antibiotic now is Augmentin, but it is very damaging for the flora.


11. CNS anti-inflamatory drugs
______________________________
DB does not recommend NSAIDs anymore because all of them except Naproxen have been found to cause cardiovascular disease. And unfortunately, Naproxen isn't that effective.

BD stated that curcumin isn't absorbed, and doubts that Enhansa is any better absorbed than plain curcumin. In order for curcumin to be absorbed, it must be in a liposomal form.

-> Check Nutrivene (makes liposomal curcumin, CoQ10, etc...)
http://www.nutrivene.com/search.php

DB loves and hates steroids. To be used very cautiously. Better avoided.  IVIG is pretty safe, sometimes awesome, more often completely ineffective.

Spironolactone is very effective at reducing TNF-alpha and has minor side effects only.

DB does NOT like minocylcine, too many problems with it, including hearing loss.

DB then spoke about a study (missed that) that found pioglitazone dramatically effective at reducing TNF-alpha. This part however WAS NOT published in the paper because of a minor flaw, but the fact remains that the researchers found pioglutazone very effective to lower TNF-alpha.

Administration of IV glutathione does not cross the BBB. One way to increase glutathione in the CSF is to administer IV NAC.

CoQ10 is very poorly absorbed. To be absorbed it must be in a liposomal form (Vitaline has the patent for that).

12. Biomarkers
________________________
Oxidative biomarkers available at Laboratoire Philippe Auguste:
- isoprostane
- 8 OHG

Inflamatory biomarkers:
- Biopterin
- Neopterin
Neopterin production is very high in cancer and HIV.Neopterin is upregulated by nagalase.
Cysteine and glutathione.
Ammonia and lactic acid (very difficult to get accurate results from labs)

Dysbiosis.
Markers of inflamation in the GI tract:
- Lactoferrin
- Calprotectin
- Elastase
- Reducing substances

Genova is the only lab that can measure calprotectin, and it is the best marker for IBD.

13. Nagalase
____________
Eelvated nagalase is found in the blood of autistic children and their mothers. Cancer, HIV, chronic infections will increase nagalase. DB mentioned that it is not clear yet if XMRV increases nagalase as well.

-> This suggests that there is a pathogen involved in autism but we don't know what it is.

14. Folate, RBC
_______________
DB mentioned the folate antibodies.

He also mentioned that in his practice he find many children with elevated MCH and MCV. He is suggesting paying more attention to this and see whether this might have pathological implactions, e.g. hypoperfusion of capillaries (due to large RBCs).

He also mentioned that children on Leucovorin for several months start showing a reduction in MCH/MCV.

15. Physician discussion
________________________
a) As many as 25 different brain auto-antibodies have been found in autism. They are not necessarily pathological, but suggestive of B cell dysfunction.

b) DB does not believe in chelation suppositories.

c) DB mentioned that since the Geiers lost their license, DMPS got a very bad press and it might be risky for doctors to use DMPS now, whereas for DMSA there are several supporting studies available.

d) Autoimmunity is not necessarily equivalent to autoimmune disease, but reflects immune dysregulation and persistent pathogen.

e) DB said in his opinion chelation helps in autism because it is a powerful radical scavenger, and thus reduces oxidative stress. But he does not believe removal of heavy metals is the main mechanism that improves autism, because he does notget many metals out of kids anymore, and chelators won't chelate any metals as long as there is oxidative stress. Oxidative stress must be down first before chelators can chelate. however, chelation remains #1 effective treatment, but likely it is through oxidative stress reduction that it is working. Dr. Frye agreed and said DB's explanation was excellent.

Thursday, June 2, 2011

Full days at Alpine are going really really well. And its only the second day. Also, he eats alot.

Today was day 2 of full days at Alpine.  We're off to a fantastic start.  Dominic has had minimal behavioral issues both days - yesterday there were 2 instances of non compliance all day, and today there were none.  Single digits for the other tracked behavioral issues (eg, today he had 3 hand licks *ew* and 4 yells)

Both days, they reported that he was chatty, but I don't know what the numbers are.  (yes, thats going to bug me).  I probably won't know numbers until our parent meeting which is generally the last week of the month.

We're going to be doing a followup adrenal/neurotransmitter test this week.  I just confirmed today that the doctor wants Dominic to be taking the adrenal supplement the day we do it.  We'll do it on Saturday - it involves a urine sample and 4 saliva samples spaced evenly across the day.

Dominic has been eating alot again.  i'm guessing we're gearing up for a growth spurt.  Today, I sent to Alpine 2 snacks - 1 was a whole sliced cucumber, the other was 1 1/2 oranges, sliced. And lunch which was 2 chicken legs, ~1 1/2 cups broccoli/carrot mixture, ~1C pretzels, and ~1 c raw veggies.   He ate every bite - they were in awe.   And then for dinner today he had 5 bbq ribs, a pile of veggies, and some chips. 

Since the fencing I put up has not kept Dominic and Shanti out of my veggie garden (they were going thru the gaps) I've added chicken wire to it.  They were both very sad to watch me install it.

We have the iPad in hand, and I just got an email from the folks over at GiveForward advising that the check for funds raised was sent yesterday.  I have a list from Alpine of recommended app's (most of which are in then under $2 range.) and we'll be spending some time this weekend downloading them.   I expect we'll be sending the iPad in to Alpine probably in a week or two.  They're working on how they'll incorporate it.

I've had so many nice notes from people who didn't get to contribute to the fundraiser before I closed it - don't worry, I'm sure we'll do another fundraiser down the road.  It seems that when there's something specific like the iPad, people really want to be able to help.   In the meantime, you can always email me (domsjourney at gmail dot com) if you want to make a tax deductible contribution to Dominic's ABA therapy (yes, there's a way you can do it so it comes out as a tax break).  We are so grateful to all of you who have been able to help, without our "village", we would not have been able to keep him in ABA therapy this long.  Right now, as long as nothing else in our lives breaks, we will be able to keep the therapy going until Sept 2012 at which time we have to make a decision as to if we keep him split between Alpine and public school (to do so would mean pulling our 401K's and taking the tax hit) or put him in full time public school and hope he's gotten enough therapy.   So we'll see how that all shakes out.  In the mean time, we are so glad to have all of you who are so supportive!