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Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Mon Jan 16, 2017 7:16 pm
by monkeyman
Crazydaddy,

Thanks for the kind words. My son is doing really well, no doubt.

My best hypothesis as to what happened to us was vaccine injury. I know many in the autism community think this is not possible, but after 2 years of very extensive testing and research, this seems to be the case for us.

Some tests that led me to this were viral titers (ridiculously high for measles, mumps, AND rubella), high levels of neural inflammation (Cunningham panel), and high levels of metals on both hair and porphyrin (urine) tests.

Also, a kid who had no food issues before the 12-month vaccines suddenly became very sensitive to many foods and showed increased GI inflammation on multiple stool tests. It is hypothesized that measles remains in the gut long after the vaccine for some people.

We have seen really great progress through 13 rounds of Cutler chelation, which lends some credence to this as well.

Not to mention our regression within a few weeks of receiving a lot of vaccines at his 12-month well check visit.

Honestly, I can't say I know for sure what did it. I know we haven't vaccinated in 2 years, and my son is healthy and doing great.

Best of luck to you...
MM

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Tue Jan 17, 2017 12:46 pm
by crazydaddy
MM, thanks for the feedback....

My son most likely has infantile ASD which (to me) means that he is just developing slowly with co-existing ASD behaviors. He's never regressed after a vaccine or such, or we never noticed it.

We'll still go through the testing for him - would you recommend these:

high levels of neural inflammation (Cunningham panel), and
high levels of metals on both hair and porphyrin (urine) tests.

Tests as primary tests that helped you?


Thank you

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Tue Jan 17, 2017 5:19 pm
by monkeyman
Honestly, I don't know of too many tests that were helpful, and we did a lot.

Best interventions we did, as listed in my previous posts, were identified by trying many things and seeing how my son responded. He is at the point now where we plan on doing ACC long-term and will stay with his MB12 injections and basic vitamins/minerals until we reach complete recovery and can wean him off them.

Testing seems to often bring more questions than answers for us, and analyzing tons of different results and drawing conclusions was too much for me!

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Fri Jan 20, 2017 10:03 pm
by mommy4ev
Meinengel wrote:
ajaxdyn wrote:I think this is one of the best threads on this forum. We started our journey 7 months and we wanted to wait until we would have some results. So, here is our list of top 5:

1. Camel Milk - 5%
2. GFSFSFSF diet - 10%
3. Son-Rise Joining Technique - 5%
4. Probiotics - 5%
5. DMG - 5%

As you can tell, we are totaling at about 30% recovery in 7 months:
We went from:
- non-verbal to single words (and many, we stopped counting already)
- constipated to consistent bowel movement
- minimal eye contact to full eye contact
- high anxiety to almost no anxiety
- multiple stims to no stims

Note: that we did try:
- homeopathy with minimal effect and we stopped for a simple reason: every remedy affects both positively and negatively multiple areas, so you become constantly hooked on "next" remedy.
- we did genetics test, and while we know MTHFR, etc. are +/+, and we support it, we did not find that to be a WOW intervention. We used Dr. Yasko methodology here: B12 Drops, B Drops, etc.
- Cod Liver Oil - while we give this consistently, it's not our WOW supplement.
- Cranio-Sacral Therapy - had very minor effect

Note: What i wish we would've started with is GAPS diet (especially phase 1)

We still need to work on enhancing speech from both receptive and expressive spectrum.
Our next path is to utilize Dr. Walsh+Neubrander combined methodology: Increase Zinc, B6, and B12 shots.

We will update this in 6-7 months.


I know it hasn't been 6 months yet, but I'm very curious. Have you seen any more improvements in your child? What exactly did you do to start speech?

Hi ajaxdyn! Thank you for your great pointers. What effect did you see with camel milk? Which probiotic do you use? How did you improve eye contact? Your child sounds a lot like mine (minus constipation - however some days my son does not have them, so it is a possibility) I would love to know which brands and companies you use, 45% recovered is AWESOME!

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Fri Jan 20, 2017 10:14 pm
by mommy4ev
ajaxdyn wrote:Yes, it's been about 4-5 months now, since my last post.

We've introduced MB12 injections and nutrients "shake" prescribed by our MD. MB12 injections brought receptive speech, strong cognition. Expressive speech is still not developed. We are still on single words, with sporadic two-words phrases. Anxiety slightly increased. We also got into another cycle of constipation, but that seemed to be resolved (violator was: Almond Yogurt).

So, if i have to put our top 6 interventions today (note: that, i specifically put just 5 last time, hoping to find that WOW supplement. However, now, i understand, that there is no WOW supplement: Autism can only be treated with a combination of supplements, therapies, etc. There might some lucky cases, where people go on diet and ready to go to college next day. Well, those are exceptions...):

1. Camel Milk - 5% - still drinking
2. GFCFSFSF diet - 10% - still observing
3. Son-Rise Joining Technique - 5% - still believe that that brought his focus, eye contact back
4. Probiotics - 5% - critical for gut health, and essential to rotate from brand to brand
5. MB12 Injections (every 3 days) - 10% - cognition is fantastic now. He follows directions, understands what we are asking him to do.
6. ABA therapy - or any behavioral intervention - 10% - all of the above (biomed-wise) will not matter, unless you do any educational/behavioral intervention.
----
Total: 45%

DMG dropped from the list.

Few notable items:
COL - is an important part, we continue to give this.
Triphala - helped with his constipation.

Our ATEC score was 79 back in April 2015. It's 25 now in May 2016. We are still far from recovered.


What exactly did we do to start speech?

I believe that fixing his gut and reducing anxiety helped with his speech.



Hello! I wrote a reply to another post and I am unsure if you received it. You are doing a great job! Can you tell specifically the type of supplement companies you use and the improvements you see for each? For example, what assisted with stims? My son does it ALL the time and I am brand new to this and I do not want to overload him. What benefit did you see with camel milk and what company do you use? My son sounds very similar to yours..

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Sun Jan 29, 2017 9:16 pm
by mommy4ev
monkeyman wrote:It’s been almost six months since my last post on this thread. Time really flies by if you’re not careful!

I am happy to report that my son continues to do really well. He has made really remarkable progress since his regression in late-2014.

Here are the condensed results of his latest evaluation for reference.

Age at time of report - 32 months

Self care - 31 months (-1 month)
Personal responsibility (ha!) - 46 (+14)
Adult interaction - 61 (+29)
Peer interaction - 26 (-6)
Self-concept/social - 40 (+8)
Receptive communication - 32 (0)
Expressive communication - 47 (+15)
Gross motor - 31 (-1)
Fine motor - 28 (-4)
Perceptual motor - 25 (-7)

Attention & memory - 41 (+9)
Reasoning & academics - 42 (+10)
Perception & concepts - 45 (+13)

We are still working diligently towards complete recovery, and the bolded areas are those we are really focusing on.

He will turn 3 in September, and will be attending a “normal” preschool program two days a week with no support. We will be doing a co-op an additional two days a week, and I plan on taking a very hands off approach there as much as possible.

We are still dealing with using language instead of whining/screaming at times. It’s hard to say how much of this is related to ASD and how much is just being a two-year-old. I remember telling my typical, older son to “use your words” all the time at this age.

UPDATE FROM DECEMBER POST

1. MB12 (daily)
2. GFSFCF
3. ABA/ST/OT
4. Being around peers almost every day and making him work through issues with them
5. Nucca Chiropractic (we had been trying to teach him to jump with two feet for months, and one day after an adjustment he started jumping up and down all over the hallway!)
6. Love/acceptance – this sounds like weird one, but we just love on him and cherish him as our son, and I think that’s played a big role in recovery for all of us

My best estimation is we are 85-90% recovered. Still working on the gut and sulfation issues, and on a very limited diet. I really want him to be able to eat a larger variety of foods.

We went from (15 months old to 33 months old):

* lost all language --> 1000+ word vocabulary, pronunciation is age appropriate, uses greetings appropriately without prompting AND NOW WITH EYE CONTACT AND NAMES much of the time, using adjectives, prepositions, nouns, verbs, etc. Requesting things he wants, commenting on things, 6-12 word sentences. Asking questions, understanding emotions, starting to tell me he’s sad/mad/happy/etc. Can count to 20 in Spanish, which impressed the guy at Whole Foods today

* no eye contact --> spontaneous eye contact is pretty appropriate. Doing better using eye contact while communicating verbally, responding to name with eye contact the majority of the time, engaging other people by looking at them

* zero social interest --> playing appropriately with older brother, parallel playing with other kids and now joining in to simple games and activities, really enjoying co-op/preschool and getting more comfortable socially. Had a play date today and after being in the house for a while he and his friend both decided they wanted to go outside, so we did

* did not want to be held, arched back a lot of the time when picked up --> comes to us for hugs and kisses, likes being held when he needs it, cuddles and shows affection, now thinks it’s hilarious to lie on my back and nuzzle me when I am lying on the floor reading to him. Washes his older brother in the bathtub and allows himself to be washed

* hiding in curtains, tearing books apart --> have not seen this behavior in over a year. No hiding (except when playing "hide and seek"), reads books now by flipping one page at a time and commenting/labeling pictures, pretend play is good, prefers to be engaged with another person a lot of the time (will seek us out)

* pretty much "out of it" all the time --> more engaged than ever. Starting to ask about using the potty and loves to wash his hands. He’s very smart.

* stimming (toe walking, repetitive arm movements, rocking) --> Gone, with rare exception. Was stimming on wheels a little a few weeks ago, but went away after we treated for yeast.

Everything sounds so good, but we are still working really hard on this. I am still hesitant to try HBOT and/or chelation because his progress has been so good. I am planning on waiting a few more months before reconsidering. I have finally accepted that this is a years-long recovery and want to be as gentle and natural as possible.

I hope everyone reading this continues to fight the good fight to help their kids. I have so much respect for all the parents on this board.

Will follow up (again)!
MM


Hello what kind of MB12 do you use? Is the only route shots?

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Tue Jan 31, 2017 5:51 am
by i-jerry
Nikkie111 wrote:If anyone is still reading

1) R-LA transdermal (unbelievable results in just two weekends!)
2) Microsilica IMD
3) antivirals
4) juicing
5) kefir + probiotics
6) low carbs diet + GFCF

Nothing though as good as R-LA!!


Hi Nikkie,

How long have you been using IMD and R-LA for your child? We just started quicksilver IMD and R-la 3 days ago, no good or bad sign so far. Which juicing recipe do you use? I give my son carrot juice but our doc said we need to do low carbs diet for him. Thanks in advance

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Tue Jan 31, 2017 10:34 am
by Nikkie111
luis wrote:Nikkie, which brand of R-LA do you use, please ? Thanks.

Gosh just saw this, so sorry - we started with Geronova R-LA, first transdermal, then orally every 3 hours. Then after few weekends we moved to Advanced Series sustained release R-LA every 6-7 hours

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Tue Jan 31, 2017 10:41 am
by Nikkie111
i-jerry wrote:
Nikkie111 wrote:If anyone is still reading

1) R-LA transdermal (unbelievable results in just two weekends!)
2) Microsilica IMD
3) antivirals
4) juicing
5) kefir + probiotics
6) low carbs diet + GFCF

Nothing though as good as R-LA!!


Hi Nikkie,

How long have you been using IMD and R-LA for your child? We just started quicksilver IMD and R-la 3 days ago, no good or bad sign so far. Which juicing recipe do you use? I give my son carrot juice but our doc said we need to do low carbs diet for him. Thanks in advance


hey there - ok that was a while ago and we did loads since then. At that time we used the R-LA from geronova for few weekends - I think we did overall about 10 weekends - and then we moved to R-LA sustained release which we did for about 4 weekends
All these after about 7-8 rounds of DMSA to bring the load down

for us quicksilver IMD brought an immediate reaction, he started throwing up, he immune woke up a bit. We did have a massive wow those days with these stuff but then we hit plateau so moved to antivirals etc
I assume you have to give it for good 3 months to remove some of the toxins, it's mainly good binder for the gut stuff, so before you move on to more systemic stuff it'd be good to do that

wrt to juicing for us always cucumber and celery to support liver!

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Wed Feb 01, 2017 7:39 am
by i-jerry
Nikkie111 wrote:
i-jerry wrote:
Nikkie111 wrote:If anyone is still reading

1) R-LA transdermal (unbelievable results in just two weekends!)
2) Microsilica IMD
3) antivirals
4) juicing
5) kefir + probiotics
6) low carbs diet + GFCF

Nothing though as good as R-LA!!


Hi Nikkie,

How long have you been using IMD and R-LA for your child? We just started quicksilver IMD and R-la 3 days ago, no good or bad sign so far. Which juicing recipe do you use? I give my son carrot juice but our doc said we need to do low carbs diet for him. Thanks in advance


hey there - ok that was a while ago and we did loads since then. At that time we used the R-LA from geronova for few weekends - I think we did overall about 10 weekends - and then we moved to R-LA sustained release which we did for about 4 weekends
All these after about 7-8 rounds of DMSA to bring the load down

for us quicksilver IMD brought an immediate reaction, he started throwing up, he immune woke up a bit. We did have a massive wow those days with these stuff but then we hit plateau so moved to antivirals etc
I assume you have to give it for good 3 months to remove some of the toxins, it's mainly good binder for the gut stuff, so before you move on to more systemic stuff it'd be good to do that

wrt to juicing for us always cucumber and celery to support liver!


many thanks for your reply. We are using quicksilver IMD package and Bodybio PC because our doc doesn't recommend DMSA for us. I'm not sure could we use R-la with PC instead of dmsa + ala. Also, May I ask which antivirals and probiotics do you use for your child? We tried Valtrex for just 3 days last month and it really makes my son crazy and very hyper. But we saw some difference after stopped it. maybe we should have another try later.
We used Biocare probiotics but he has very bad constipation with it. We changed Kio-kult and he is doing well. But I'm thinking to change another brand because he already having it almost 5 months.
Best, Jerry

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Thu Feb 02, 2017 9:52 am
by Nikkie111
i-jerry wrote:many thanks for your reply. We are using quicksilver IMD package and Bodybio PC because our doc doesn't recommend DMSA for us. I'm not sure could we use R-la with PC instead of dmsa + ala. Also, May I ask which antivirals and probiotics do you use for your child? We tried Valtrex for just 3 days last month and it really makes my son crazy and very hyper. But we saw some difference after stopped it. maybe we should have another try later.
We used Biocare probiotics but he has very bad constipation with it. We changed Kio-kult and he is doing well. But I'm thinking to change another brand because he already having it almost 5 months.
Best, Jerry

hmmm I don't know much about PC - I used a few bottles of the Nutrasal PC but then stopped it not sure I've seen much and was way too expensive. Other than that the soy could be causing, freaks me out

Yes we did Valtrex too - did you do full dose straight away? 3 times a day? Being hyper wouldn't necessarily be bad for me (we can't expect them to just wake up recovered, it's a journey isn't it :-) ) but if you didn't get a good feeling out of it, fair enough :-)
we stopped Valtrex after 50 days, and now doing herbs only under Buhner protocol. They are maaaaaaannnnny not just one, but if you look it up you'll get the idea. Again with herbs you need to be more careful - my boy got full body rash for 3 days on lomatium - study them a lot and go very slowly

good luck

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Fri Feb 03, 2017 6:50 am
by i-jerry
Nikkie111 wrote:
i-jerry wrote:many thanks for your reply. We are using quicksilver IMD package and Bodybio PC because our doc doesn't recommend DMSA for us. I'm not sure could we use R-la with PC instead of dmsa + ala. Also, May I ask which antivirals and probiotics do you use for your child? We tried Valtrex for just 3 days last month and it really makes my son crazy and very hyper. But we saw some difference after stopped it. maybe we should have another try later.
We used Biocare probiotics but he has very bad constipation with it. We changed Kio-kult and he is doing well. But I'm thinking to change another brand because he already having it almost 5 months.
Best, Jerry

hmmm I don't know much about PC - I used a few bottles of the Nutrasal PC but then stopped it not sure I've seen much and was way too expensive. Other than that the soy could be causing, freaks me out

Yes we did Valtrex too - did you do full dose straight away? 3 times a day? Being hyper wouldn't necessarily be bad for me (we can't expect them to just wake up recovered, it's a journey isn't it :-) ) but if you didn't get a good feeling out of it, fair enough :-)
we stopped Valtrex after 50 days, and now doing herbs only under Buhner protocol. They are maaaaaaannnnny not just one, but if you look it up you'll get the idea. Again with herbs you need to be more careful - my boy got full body rash for 3 days on lomatium - study them a lot and go very slowly

good luck


Good morning Nikkie,
Do you see any positive feedback from Valtrex? Yes we give him very small does, 1/4 per time, 3 times a day. He had rash on his chest and arm and i know it's normal. But he couldn't sit down for just 2 minutes and much more regression when he has it. I checked online some people said we need to detox metal first and then the virus. We are thinking to try HBOT for him, have you try it yet?
Many thanks, Jerry

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Fri Feb 03, 2017 1:19 pm
by monkeyman
I'm sorry to see this thread go so off topic with all these specific questions

It was really helpful to me when it was primarily focused on top six interventions

Starting new threads is an option so new parents here can focus on the top six

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Tue Feb 07, 2017 6:13 pm
by Nikkie111
Just to update my top 6:
1) Antivirals - Valtrex - Lolatium, elder, Isatis, houttynia
2) antiinflamatory- Cordyceps , Chinese skullcap
3) immune - macrophages activation - maitake
4) nerve regeneration - lion's mane
5) herbal antibacterial - Sida Acura, cryptolepis
6) Gaps diet

-

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Mon Feb 13, 2017 11:09 pm
by crazydaddy
monkeyman wrote:I’m back with my promised update!

Though we have been through the inevitable ups and downs that are part of recovery, we continue to see fantastic progress with everything. I am waiting for the results of the latest evaluation to update the results here, and I will add them when I get them.

Since my last update, we have made some biomed and therapeutic changes:

• Went from MB12 injections every day to every other day without seeing any negatives
• Completed 12 rounds of Andrew Cutler chelation with amazing results
• Stopped ABA therapy as my son has outgrown it. We started RDI last month and it seems to be the right fit for us
• Stopped the co-op because the class was too young and crowded, and moved to a social group once a week
• We are doing speech (one individual and one group) and occupational therapy twice a week

UPDATES FROM JULY 2016 POST

1. MB12 injections (every other day)
2. Cutler chelation
3. GFCFSF
4. RDI (early to evaluate, but extremely promising from what I’ve seen)
5. Social experiences with peers and sibling
6. ST/OT

MM



MM -- what kind of testing did you do for knowing how to proceed with some of these interventions? For example for chelation what was your test for heavy metals or how did you proceed?

For MB12 did you have the full methylation panel completed?

Thanks.

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Thu Feb 16, 2017 2:22 pm
by monkeyman
Crazydaddy,

We did a lot of testing for metals.

* Blood (recent exposure) was negative.
* Urine prophyrins showed lead.
* Hair test, per Cutler's counting rules, indicated mercury.

We also did an HDRI methylation panel for MB12.

In reality, the testing wasn't necessary, as we tried both MB12 and AC chelation and saw great results. In hindsight, I would have just tried each intervention on it's own to see how it went, and made decisions based on that. Some tests have been useful for us, but most have not been that helpful. It comes down to the changes in the health of your child and the resulting behavioral changes.

Good luck!

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Tue Feb 21, 2017 9:18 am
by White swan
Does the DMG or TMG work? how about the son-rise program? I heard it's opposite to the ABA. does it work better than ABA?

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Mon Feb 27, 2017 4:40 pm
by Marya
What I have found very good for myself as an adult but in anyways are helpful with any mental disorders;
MSM(60%)
Pycnogenol (10%)
Vitamin C (10%)
Biotin (good)
B-complex(good)
I tried Bacopa and I think it is very good but it might only benifits adults.
I didn't like PS. Vinpoctin is ok but sometimes it makes me nervous and very talktave( just wants to talk and don't want to stop!!!

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Tue Feb 28, 2017 5:37 am
by jaumeb
Thanks Marya.

Re: What Are Your Top Six Interventions - Biomed or Otherwise

Posted: Thu Mar 30, 2017 6:17 am
by Cadesmum
I haven't been in the game long, only realizing my son had autism since nov last year and starting biomed in Dec.
But his atec starting was 67 and is now 40 so i thought id add mine. Hes only 2.5 so some Qs kinda dont apply to him making his score slightly higher. *edited to add B1! Haven't redone his atec since adding B1

1. B1 social!! Wow! Started playing with other kids, wants to interact with everyone, talking alot more.waving to people saying bye bye etc.
2. Diet (gfcf plant based diet low sugar) WOW
3. Mb12 WOW
4. Trienza digestive enzymes
5. Cytoflora and liverlife
6. Cold pressed vege juice

Its hard to fully put in order because certain things got him to a certain place then other things added to it.

Hes also on thorne kids basic nutrients,methylatiom supps for mthfr, cod liver oil, coco kefir daily, gummy "lollies" made with gelatin, nordic naturals fish oil, i make his coconut milk from scratch and add lecithin, marine phytoplankton randomly, vit c, dolomite in his coco milk with desiccated liver, msm to help with his keloid scar which is almost gone!, coq10 randomly and grape seed extract in his vege juice, plenty of fat, zinc which stops pica...

His vege juice which is actually yummy and id like to think its helping kill the baddies in his belly is
•cucumber
•lime and lemon
•spinach
•ginger
•garlic
•water
In a cold pressed juicer