Tuesday, June 27, 2017

"Mommy, minutes?"

Backstory - our speech therapist who Dominic adores just had a baby and is on maternity leave.  It didn't make much sense to get him someone else just for a few months when he takes that long to warm up to someone anyway.  So this summer we've started him back on gemiini just to keep him practicing articulating and such.   He doesn't love it. at all.  He would far rather watch disney videos on youtube.   So we lock that ipad down to just the gemiini and he has no choice what he watches.

Last night, after his footbath, he got the ipad.  I told him that if he did gemiini for 10 minutes, then he could do what he wanted on it.  I set gemiini, and went to the kitchen to cook dinner.  I didn't look at the clock. 

A while later, at least 10min, but potentially more (again, i didn't check the time), he came in saying "Mommy, clock.  Mommy, Minutes".  He wanted me to look at the clock and see if his 10 minutes were up.

Wow is all i've got.  This protocol we are on is doing cognitive things we've never hoped for, much less seen. 

Sunday, June 25, 2017

One month PMB-versary!!




One month ago was the first time I squirted Prime My Body's nano sized, liposomally encapsulated hemp oil into Dominic's mouth.

We've seen  incredible improvements in handwriting and reading,  a distinctly improved auditory processing speed, an ease within his own skin (calm. so calm)... an increase in empathy and compassion, more independence and responsibility.... and thats just what i've blogged about!

Here are some of the things I didn't blog about because i was tight on time that day, but did post on facebook...

30 May
You guys are going to think I'm crazy for celebrating this and you are right to do that but in the autism world this means something is definitely working.  Dominic just got ready for bed and brought me his pajamas which he wore last night saying "mommy, stinky stinky".  They smelled like urine.  So did his sheets.  He wet the bed last night for the first time in 8 years.  That means we have PeeTox.  All of the detox work we've done over the years has never brought us peetox. 

Then lots of posts about the business side of things, which is amazing and you're welcome to ask me about it any time... but not what this post is about today.

19 June
One of todays ymca camp counselor sups is filling in from another site and remembers Dominic from last year.  She made it a point to tell me how incredible he is doing - she totally gushed.

22 June:
Tonight I told Dominic that as soon as I was finished downstairs, we would put the ducks to bed.  When I came upstairs, he'd already done so.  (this entailed getting the keys, opening multiple doors with different keys, putting them in their house, and locking up tight behind himself.  The cognitive steps are staggering)

So... what can I tell you from my experience with using this for my family?

1.  Get some now. Its helping across a wide range of issues from Dominic's challenges to my husbands back pain to my fathers psoriasis.  Its living up to the promise of working hard on the CB2 receptor site (which is all about immunity and inflammation).  If you don't want to do a business with it, thats fine - sign up as a preferred customer with autoship and you get the same discount I do as an affiliate.  There's a very good income earning potential if you want to try the business.

2.  Don't run out.  We ran out and noticed the focus challenges creep back up.   they take 2-3 weeks to get it to you from the time you order, so plan accordingly (and my family will be going through 4-5 bottles a month, between all of us and our dosing)

3.  I'm seeing other mama's using this that are seeing great improvements for their kiddos, but those improvements are different than Dominic's.  That said, overall I'm seeing a general calming and anxiety shifting effect in all the kids I'm hearing about using it. So just because Dominic's auditory processing speed has improved, it doesn't mean that your kid, with excellent processing speed, won't have a benefit in another area. 

Over the years, there've been very few products that I was willing to represent and share with the community because of how universal the statement "nothing works for every kid" is.    Right now that list consists of Prime My Body, IonCleanse by AMD, and Young Living.  I stand by that statement, and this absolutely might not work for a child. I believe that the wide range of types of improvement means there is a very good chance it would work.  Because Autism, at its core, is about inflammation. Whether its brain / gut / liver / etc inflammation - and whether its caused by virus, bacteria, environmental toxins, vaccine, - its still inflammation and this particular formulate of CBD appears to be staggeringly effective for inflammation.

Saturday, June 24, 2017

Colorado renaissance faire 2017

Today was our annual trek up to Larkspur to the Colorado Renaissance Festival.  Well, semi annual - there were probably 7 years after Dominic regressed that we didn't even attempt it.  I can remember taking him in the stroller and then after he regressed, we decided we just couldn't do it. Its nice to be able to do it again.  While there're certainly things that are difficult with Dominic, we mostly no longer have to worry about meltdowns, eloping, or otherwise inappropriate behavior from him in a setting like this.  Its been a long time coming.

We started our day, as per tradition, at Gunther Toody's getting a diner breakfast.  We then headed north and had a wonderful day....

couple of things of huge note here...
- Dominic had a food infraction.  Well, we let him.  At breakfast.  And it wasn't until we were almost done for the day that the sillies and farting started.   If I had had charcoal on me (i know, Biomed failure) we wouldn't have even had that.
- Dominic put his fidgets in my backpack and didn't need them ALL DAY.  HUGE here.
-Dominic, while he really wanted to ride the elephant and the camels, maintained while we had him wait.  We meandered through the faire and got to things when we got there.  Same for the petting zoo... he definitely wanted to be there before we were headed that way.  And he maintained beautifully.





Obligatory family selfie





Look who is riding the elephant without a parent. This is a first.  He's ALWAYS had one of us too.  he did awesome, and was totally safe.





Annual Crane picture.




Last years was the first year he rode the camel solo, and it was a nailbiter.  This year - totally smooth.



This picture is because I looked over at Dominic and realized his pupils were small.  I haven't paid attention to them much lately, but for MANY years he's had extremely dilated pupils, all the time but always bigger after his shower, which was our clue that his adrenals were completely tapped out.  I'm suspecting that we're healing his adrenals with the PrimeMyBody CBD as we have not started anything else and now I'm going to be compulsively watching his eyes at night...

Thursday, June 22, 2017

Doc appt's - follow ups

so as I told you all last time, Dominic's genetics interpretation with Dr Sonia earlier this week gave us some really interesting information and confirmed what we've thought for a long time.   I've just put together our new supplement regime and I have to say I hope we aren't doing all these forever because there's more than there have been in a long time.  We have 3 mito supports we are going to trial and we will pick whatever he does best with.  i'm positive i'll be blogging how we do on each so that i can come back and use that information to make a decision about which one to pick long term.

Then yesterday was his annual well visit with our primary care.  She and I joke that this is the annual cover our butts appointment, because its literally always just weigh, measure and visit since he's medically exempt from all future vaccines.  She reiterated that she will get us whatever we need, and i so appreciate that about her.

She was GOBSMACKED at how well he did at the appointment (and i thought he was being a bit of a turkey so there's that).   She is very excited about the NanoHemp we are using and beyond impressed that he followed directions with one request.  She remembers having to ask a million times. I told her, as i've told all of you that I feel like his auditory processing speed is going insane.

Dominic found his renaissance faire guidebook from last year and has officially asked to go ride the camels.  So we will be taking him this weekend as the weather is supposed to be GLORIOUSLY cool.  I'm sure there will be pictures aplenty and perhaps even video!

And our shipment of Hemp oil arrived!!!! So happy, we'd run out entirely and both Dominic and Daddy need it badly. 

Monday, June 19, 2017

Holy Information Overload, Batman!!!

Many of you remember that we've dipped our toes into the genetic side of this puzzle a few times.  I am somewhat familiar with Dominic's mutations and I've always wanted to get more in depth.

There's a new software in town.  And by town I mean in the hands of MAPS doctors, called Methyl Genetic Nutrition Analysis, and it takes the results of your 23andme genetic testing, pulls out the relevant stuff thats most alarming, summarizes it, and makes recommendations.

My friend Dr Sonia McGowin offers it, so we had an appointment with her today.  Holy WOW that was a lot of information.  A couple of things jumped out at her in a big way, that have never jumped out at a doctor before.  Most of them I'd already been intuitively treating.

~ Dominic doesn't detox.  His CYP genes (aka liver phase 1) and his ASF1 gene (aka liver phase 2) are full of mutations.  This explains why then IonCleanse by AMD remains the single biggest thing we've done.

~ Dominic SLC22AS genes are a hot mess. Mostly mutated.  Thats the gene that relates to Carnitine transport.  Carnitine is required for mitochondrial oxidation of fatty acids.  I've been saying for a couple of years that my gut thinks D is a mito kid.  Dr Sonia agrees with me. This is why he muscle tests a hard yes for various mito sup's.  We've got several options to choose from, and will likely take all three to to Dr Blackwood for muscle testing and see which one we should trial first.  Mito means that his cells struggle to make all the ATP they need, and likely could explain why he needs so much fuel (food).  More than a regular 12 yo, it seems.

~Dominic's got a mutation in the BCM01 gene that means he doesn't use vitamin a very efficiently.  This could explain why the high dose vitamin A protocol didn't do a lot for us.   The particular mutations he has are higher in people with lyme disease. Lyme has been on my radar as a possibility for years, and it will stay there.  As of right now, He's asymptomatic if he does have lyme.

~ Dominic's histamine is concerning, so we are keeping antihistimines in our tool box. I'm just going to copy this off the report:
"The HNMT gene combines a histamine molecule with a methyl group (CH3) to reduce the histamine to a harmless substance. If you have inherited a lot of genetic variants in the HNMT gene, you may have difficulty breaking down histamine.  High histamine can cause allergies, skin rashes, frequent hives, feeling stressed, difficulty sleeping, and intestinal inflammation from Zonulin."

~Dominic has mulitple copies of a CBS mutation. I knew about that, and its why the DMPS chelation with Dr Kucera so many years ago was so hard on his body. DMPS is a sulfur derivative and he cannot process sulfur.  Here's what the report says about CBS mutations "Variants in the CBS enzymes, can cause homocysteine to turn into excess glutamate. This may create anxiety, adrenal fatigue and excess ammonia. It may also create excess sulfites and sulfates."  His behavior when his ammonia levels are out of whack is a hot mess.

~the biggest one she found is the HFE gene.  She actually emailed me in advance and asked if anyone had ever talked to us about iron disregulation.  And no - but this is why I'm wanting her to do mine now, because i've been chronically anemic for years and what she said is odds are he got the mutation from me and its not that I don't get enough iron, its that i am not getting it into my cells.

~ The final one of concern we reviewed is the ASF1 gene, which I mentioned above. Its related to the urea cycle and liver detox.   So we know now why hepatrophin pmg is such a big deal, and why giving him dessicated bovine liver to attack instead of his own gives his body a break.  Dr Sonia believes that he was genetically susceptible to liver damage from the MMR (hepatitis is a documented side effect of measles and anything the virus can do, so can the vaccine), and thats why his liver has been so jacked for so many years.

So, knowing that we're not interested in rocking the boat very much, Dr Sonia is only recommending a couple of additional supplements, and we're going to get them started when the arrive. We are fine tuning because of how well he's doing. 

Sunday, June 18, 2017

Empathy and compassion

What was that you were saying about children with autism lacking empathy and compassion??

We had a houseful over last night to celebrate the completion of the Duck Kingdom, including 4 little ones.  Dominic was incredibly attentive to making sure the other kids were safe, to the extent that he spent a lot of time with Dexter, now 2 1/2, super gently shepherding him around, and at one point soothing him when he was sad -



Other things of interest that are new and exciting the last few days with our new Prime My body nano hemp protocol....

~ The padlock for the duck house went missing earlier. I asked Dominic where it was, he pointed to a gap between the duck house and our shed, and told me to go get a flashlight.  When i did, i found the padlock buried down there.  For YEARS he hasn't been able to tell us where something is... only cry that he couldn't find it.

~ he "fixed" a TV tray with tape.  Seriously, he didn't even tell me it was broken, or bring it to me, I happened to notice it was taped together. 

~ he seems much easier in his skin - the anxiety I didn't realize he had is easing.

~ Receptively, he is doing better (and I hadn't realized there was better to do).  Either that or his auditory processing speed is ramping up.  For example - I was doing my footbath earlier today and realized I had a torn fingernail, which drives me batty. I asked him to go get the nail clippers for me.  only once.  And he did.  When i was finished, I asked him to put them back and bring me my purse.  He did.  Then i asked for a Kleenex.   And he brought that.  All with single requests.  I don't think he could do that if it was chaotic around him, but with just he and I, he did great.

Now the scary news... we are ALMOST out of our PMB!!!!  one of my orders (yes, there're 3 pending) is in route, and i'm really hoping it gets here soon because Daddy has paused using it and is in a ton of pain again (one of those you don't realize how well its working until you run out) and I'm rationing Dominic by only giving him 1 dose a day instead of 3.... please arrive soon!!!!!

Friday, June 16, 2017

More cool stuff

And once again a week has gotten away from me.  There's been some really cool nuances we've seen this week from Dominic, still climbing on the gains from adding nano-hemp to our regime.

A couple of them stand out...

First - our ducks now have their new home outside. Its a magnificent enclosed yard with a secure house.  Dominic has decided that its his job to let the ducks out of their house in the morning and put them to bed in the evening.  He got downright offended the one night this week that I put him to bed before I put the ducks to bed.  Yesterday, I had padlocked both the house and the yard before picking Dominic up from camp, taking him to the orthodontist for braces to be adjusted (he is still rocking them) and bringing him home. When we got home, I was immediately busy on putting away groceries and preparing dinner, and Dominic disappeared outside.  No big deal, I thought, as I had locked the ducks in.   About 20 minutes later we were looking for our backyard keys.....  they were in his pocket and he was happily in the duck yard with the ducks.   I didn't show him which keys worked the padlock.  His fine motor skills that have struggled so much... couldn't manipulate a key very recently.  So he made the cognitive leap from "the door is locked" to finding the keys, finding the RIGHT key, opening it and it was very anticlimactic.


Dominic has developed a love for Dr Who, to our great enjoyment.  So a few nights a week, he asks to watch it, which consists of all three of us and three dogs piling into bed in our pj's and cuddling while we watch it.





The cutest part is he has to put on his dr who slippers to mark the occasion.  This is the only time he wears those....


   

Since our speech therapist is taking maternity leave this summer, we have JUST restarted Gemiini, and we are getting him used to it again.  We hope that it will be an acceptable fill in while Sarah is out.   She saw him last on Monday (then gave birth Wednesday), and he was doing VERY well blending sounds and answering WH questions.   We are hoping that when she returns from maternity leave, we will be in a very different place and she's very excited.

We saw that ourselves this week as well.  Dominic LOVES his disney movies, but isnt so good at telling us exactly what he is watching.  The other night, Rod asked him what he was watching and Dominic said "Fox and the Hound TWO".  Normally he would have just said "foxhound".   


Monday, June 5, 2017

He loves camp


Domincix was so excited to go to camp this morning, that he wolfed his breakfast down in about 37 seconds, and then asked me to take him to camp. i told him I had to work, that Daddy was taking him, so he went downstairs and asked Daddy... who told him as soon as he was finished dressing they could leave.  So Dominic brought him his shirt and shoes and off they went.


In related news, look at the amazing DIRECT GLARE into the camera!!!!  And we didn't have to take multiples to get this....

 


 

Sunday, June 4, 2017

Frisbee?!?!? Seriously?

this morning, we had a visit from our favorite occupational therapist and his significant other type, collectively known by Dominic as "JonnyAnna" (they are Jonny and Hannah).  I had to run a couple of errands kid free so it worked out beautifully.

When I returned from errands, this was what greeted me on the front lawn:



Jonny pulled me aside and told me the following

~when they got started, Dominic was very dis-regulated and didn't want to work.  So Jonny had him write out sentences of other things like "Jonny leaving" and "We are all done".  And that back and forth, in writing, interaction regulated Dominic.  He then successfully did a very hard wordsearch, including diagonals, with NO assistance and then they taught him how to both throw and catch a frisbee.

We have been working with Jonny for a year straight, and for a few months of the summer before as he did his internship.  He's watched multiple things, and he is absolutely blown away - to the point that he wants a bottle - by the effectiveness of this stuff

Other things I'm noticing in Dominic
~His auditory processing speed seems to be improving.  He is now following directions when asked 1-2 times instead of 4-5.
~ He's very helpful. For example - one of my errands was to get some more 2x4's from the hardware store for the Duck Kingdom.  he carried them, one at as time, from the car to the backyard.
~We are seeing much more back and forth conversation versus echolalia.  On our list is to restart Geminii, and I'm excited to see what that gets us too.

Friday, June 2, 2017

YMCA Summer camp, week 1

The end of the school year, with Autism One local to us, transitioning into camp ALL over the same 4 days made for a bit of chaos.  So I didn't get to share the annual letter to camp about Dominic.  That is below - This is Dominics last year at daycamp unless I convince them to make an exception next year based upon his developmental age.  12 is the oldest they usually take. 

Dominic had a wonderful week - according to his counselors he loves the pool (we know) and does all kinds of cool fish looking moves.  He actually participated in the bowling field trip which is blowing my mind. Apparently the counselor with him got the kiddie bowling ramp (I have no idea what its really called), set it up for him, and he LOVED putting the ball on  it and watching it go.  She then took him to a rollercoaster simulator in the arcade that he loved too.  When I picked him up tonight the first words out of his mouth were "trip fun".  Its so nice to have reports that he's participating because we haven't seen that much in summers past - he would parallel, and hang out near the group but rarely join in.

We've done footbaths after every swimming day, and I think thats helping his behavior because the water reeks of chlorine after. 

We continue to see small, interesting nuances and gains with the nano cbd we are on - I'm thusfar smitten with this product. We'll see how we do long term. I need more folks to sign up under me to help me afford it.

~~~~
Annual Camp letter



Things that The Y Camp counselors need to know about Dominic.

~  Dominic has an Autism diagnosis, and his primary area of trouble is speech. He is verbal and is starting to become conversational.   He CAN speak and you SHOULD encourage him to use his words to ask for things.  This may mean you have to slow down and perhaps ask a question twice before he will answer, but he is able to give you a yes/no, answer his name, say "Good Morning", etc.  He may need prompting to say that he is 12 years old and goes  to Galileo Middle school. 

He has a deep love of animals and is fascinated by all things sciencey.  He also loves heavy gross motor play (climbing wall, jumping, swimming) and will catch on quickly to games.  We expect his participation in group activities this year.   If questions are being asked (eg, in a group introduction time) – he’ll need some prompting to say things.  For gross motor stuff (structured outside play), he’ll catch on quick, but will need some patience.  His preferred peer group is usually younger than he is, and he will play beautifully with them.  Dominic pretty much always has fidget toys (small animals) in his hands/pockets.  If he gets tremendously upset and you cannot figure out why, odds are good he's lost one.  Its a good idea to have him show them to you each day so you can tell if one is missing.

~ Dominic is allergic to Gluten, Dairy, Soy, and artificial colors.  You are NOT to allow him to eat anything that we did not send from home. In his lunch box, you’ll find snacks (2) and lunch. It is iced and will be fine without refrigeration, and does not need to be heated up.   He can drink water, please do not give him juice / milk / soda / sports drinks.  If you plan to do something like ice cream or pizza with the group, please tell us the day before and we will send in an allergy free equivalent so that he can participate.  we are happy to send in additional non perishable snacks, just grab one of us and let us know.

~ Dominic has had braces now for just a few months.  In his backpack are a toothbrush and toothpaste.  Please remind him to brush his teeth after lunch and provide the appropriate time for him to do so.  We will have to pull him out a few times over the summer for braces adjustments and will let you know prior.

~ He has not eloped in many years, however he does tend to wander towards the edge of the group and as such has a GPS tracker attached to his pocket. If he goes missing for any reason, text us immediately as we will be able to locate him with the tracker.

~ Regarding Swimming:   Dominic loves the water and will probably BEG to go swimming as soon as he realizes it’s a regular part of the program.   Being that water is very calming for him, and he does not like to get out.  He has some rudimentary water ability and we would love to have him actually learn to swim this summer so he can hang out in the deep end.

~ He does NOT need assistance dressing or tying his shoes, however he takes a little longer and can get distracted easily - a verbal prompt is all that is needed. 

~  Dominic has absolutely blossomed the past year cognitively and socially so we expect that he will have a fantastic summer.  Should you have ANY questions or concerns about how to best interact with him and keep him safe, please ask either Mom or Dad at pick up or drop off.

Wednesday, May 31, 2017

Tales from home based therapy

I came out of the office to find my child standing on an upside BOSU, throwing balls at his therapists head.

By design.

I adore home based therapy. :)



They they reversed roles






Tuesday, May 30, 2017

Handwriting - massive improvement

I have been telling people for years at the Ioncleanse booths I have worked that when you remove the toxins blocking cellular communication, amazing things start to happen. One of those things is handwriting improvements.

I saw a bunch of presentations on cannabis, specifically CBD at autism one this year. One of them, Dr Bogner's, talked about how the microglia in the brain are the mechanisms of communcation between  neurons.  And that good quality cannabadiol (CBD) cleans those.

I was not expecting this kind of change this fast.  We had OT on Saturday morning, and they did the handwriting on the left - that size, spacing, and pressure is very typical of Dominic the last year or so.  We had OT again Monday, and look at the change in ALL of those.  Difference is 3 more days of this specific CBD under his belt.  Please note this child has been on CBD of one form or another for over a year.  The nano, liposomal formula WORKS BETTER!!!!!!





Then, for icing on the cake... he did the best job of reading that last sentence out loud I've everheard him do - we have really been struggling with the speed of his word recognition and this is a BIG change.


Monday, May 29, 2017

What just happened??

So, we are 5 days into Dominic's new supplement, the nanosized, liposomally encapsulated CBD I told ya'll about a few days ago.  As promised, I'm blogging about what we're seeing.

These are the nuances we are seeing.

1.  Saturday Morning, out of the blue, Dominic got the rocking horse that he was given before he regressed out of his closet, dragged it upstairs and proceeded to do this while Rod and I scratched our heads and looked at each other puzzled.  This is what retracing looks like and its a Very Good Sign.




2.  Yesterday morning, as Rod was putting his breakfast together, Dominic randomly came up and gave him a kiss.  This is out of routine, which is why it surprised us.  Rod told me "I love how spontaneous he is lately".  Then Dominic went outside and we asked what he was doing. Normally that would be met with gobbledygook, instead he said "I am hunting for a spider".  OOOOOkay....

3.  I was doing my post Autism one IonCleanse by AMD footbath right around 11 this morning and Dominic asked me for lunch. (he's 12, puberty, always hungry, blah blah blah. I promise we feed him). I asked him to hang tight and wait until I was done.  I finished, dumped my water and found him calmly sitting at the dinner table waiting for me.  WHAT JUST HAPPENED?  Then I made him lunch, he took it to the dinner table and then took it outside. He said to me - with words "Want to eat outside".
So he did eat, right among  my little herb plants that I still haven't found a final resting place for so they live on the table.




Between this (and he's been at 1 squirt three times a day for only 5 days) and the reduction in Rod's chronic back pain by 20% 45minutes after taking it, I am rapidly becoming excited about the anti-inflammatory properties of this stuff....