What Are Your Top Six Interventions - Biomed or Otherwise

Discuss autism diets and biomedical treatments of autism.

Moderator: ModeratorBill

monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

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

Postby monkeyman » Tue Jun 07, 2016 7:42 pm

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

Pirsig
Posts: 83
Joined: Tue Mar 31, 2015 10:47 pm

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

Postby Pirsig » Wed Jun 08, 2016 1:41 am

MM,

Very happy to hear this and also extremely happy that you took the time to pen all this down here. I am sure it will help a lot of parents who have kids that are newly diagnosed - I know how important it was for me to read these things 3 years ago.

All the best to you and your son and I hope you will help many more parents both here and in real life. I am glad my journey is over and I will be posting one final post here pretty soon with a summary of my daughter's recovery story over the last 3 years.

jaumeb
Posts: 167
Joined: Fri Mar 25, 2016 10:48 am

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

Postby jaumeb » Wed Jun 08, 2016 7:57 am

Thanks MM for the detailed post. I'll be looking forward to upcoming updates.

How did you treat for yeast?

fabiotx1
Posts: 2
Joined: Mon Jul 11, 2016 9:30 pm

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

Postby fabiotx1 » Mon Jul 11, 2016 10:44 pm

Diet = GFCF
AC CHELATION with Vitamins Support
Fish Oil
Hydroxycobalamin(Here, we can´t MB12 shots by 23 and me results -MAO)
Probiotics(Culturelle and Theralac)
Nystatin and Caprilic Acid.
Cognizin(Choline) + AcetylCarnitine +Phosphatidyl Serine


In our plans:

HBOT
REAC
Cod oil liver
Mitochondrial Cocktail.
Neuroprotek lf

My son has 4 years old.

luis
Posts: 250
Joined: Thu Sep 25, 2008 8:42 pm

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

Postby luis » Fri Jul 15, 2016 3:27 pm

Nikkie, which brand of R-LA do you use, please ? Thanks.

Vedhope
Posts: 17
Joined: Tue Jul 26, 2016 10:34 pm

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

Postby Vedhope » Sat Jul 30, 2016 12:47 pm

Hi MM,

Very heartening to note improvement with your son! I think very early intervention really helped.
Could you please elaborate on b12 shots, I am very apprehensive about administering shots to my kid everyday. My son is 5, goes for ABA/ OT/ speech- 5 days a week, is non-verbal. Any suggestions would be appreciated.
Thank you.

Vedhope
Posts: 17
Joined: Tue Jul 26, 2016 10:34 pm

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

Postby Vedhope » Sat Jul 30, 2016 1:00 pm

Also pirsig, really looking forward to your post!

fabiotx1
Posts: 2
Joined: Mon Jul 11, 2016 9:30 pm

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

Postby fabiotx1 » Sun Jul 31, 2016 12:51 am

MM,

What did you do to treat yeast?

Nystatin?

thanks,

monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

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

Postby monkeyman » Mon Aug 08, 2016 5:08 pm

Have not used Nystatin for yeast. We have had yeast, but is hasn't seemed to manifest in really bad behaviors.

When I've suspected it, I used grapefruit seed extract for a while until the phenols became an issue, then went to Pau d'arco. Both at very small doses 1/8 - 1/4 of a capful twice a day.

Seems to be working.

We will be starting ACC in two weeks, so I will update when we have an idea what that's doing for us.

Thanks!

monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

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

Postby monkeyman » Mon Aug 08, 2016 5:09 pm

MB12 injections were amazing for us. I would recommend getting them from Hopewell and following Neubrander's protocol (No TMG, no changes for 6 weeks to observe effectiveness, etc.), even if you're with another doctor.

I think Pirsig would agree with me on this one.

monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

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

Postby monkeyman » Tue Jan 03, 2017 2:19 pm

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

My best estimation is we are 90% recovered. Still working on the gut and sulfation issues, but he has been able to eat so many more foods than he could six months ago.

We went from (15 months old to 40 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

Update: Now asking tons of questions. Trying to negotiate when he doesn’t like what we’ve said. Using words like “actually” in the appropriate context. Telling me stories about his day and some he’s made up.

* 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

Update: Eye contact took another big jump since we started RDI. Now he is sharing things that he thinks are cool/funny/weird with me, verbally and with his eyes.

* 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

Update: Friends are asking me if he can come to their house when I pick him up at school. Racing cars with other kids, playing pretend games with them, playing tag, and talking about his friends when we’re at home.

* 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

Update: Hugs me spontaneously. Comes to me for comfort when he’s hurt. Loves to cuddle with us in his bed! At night, he asks for cuddles and is sad when we have to leave him for bed time.

* 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)

Update: Continues to desire social interaction and being connected to others.

* 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.

Update: Engaged the majority of the time, and now showing us his intellectual ability all the time.

* 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.

Update: Have only seen this on a few isolated occasions, when he’s yeasty. No longer and issue for the most part.

Remember, we’ve been through plenty of not-so-great stuff on the road to this point. You have to fight through the bad stuff to get to the end.

Much love and respect to everyone on this board.

Will likely follow up (again), though I am excited that my days of monitoring this board are numbered !

MM

jaumeb
Posts: 167
Joined: Fri Mar 25, 2016 10:48 am

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

Postby jaumeb » Wed Jan 04, 2017 10:25 am

Thanks MM for keeping us updated.

crazydaddy
Posts: 37
Joined: Wed Dec 07, 2016 1:05 pm

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

Postby crazydaddy » Fri Jan 06, 2017 2:25 pm

monkeyman wrote: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)


Hello - can you kindly advise of how you were able to baseline this for your child? What testing provides this kind of report?

monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

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

Postby monkeyman » Sat Jan 07, 2017 11:04 pm

Vineland Adaptive

Hopefully I will have more data to update next week

Ellison
Posts: 1
Joined: Fri Dec 09, 2016 5:07 pm

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

Postby Ellison » Sun Jan 08, 2017 6:31 pm

My mom doesn't care about my weight, I can't go walking by myself because I'll get in trouble. I know i'm going to die, and i'm honestly so scared for my life. She knows I need to lose weight, but she doesn't care. I can't be healthy because she buys the food in the house.WHAT CAN I DO TELL ME FRIENDS ?

Sonalikaur
Posts: 4
Joined: Wed Jan 11, 2017 9:49 am

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

Postby Sonalikaur » Wed Jan 11, 2017 10:17 am

hi Dabaxter..may I know where can I buy LDN from. Will it possible to deliver to Singapore.read a lot about it nd very hopeful now to try on my Son. Please share any links to order and deliver to Singapore. Thank you so much.

Sonalikaur
Posts: 4
Joined: Wed Jan 11, 2017 9:49 am

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

Postby Sonalikaur » Wed Jan 11, 2017 6:09 pm

mellowjello wrote:1. God
1. Homeopathy (Tinus Smits CEASE therapy)
2. Correcting vitamin and mineral deficiencies
3. Parasite treatment
3.5??? Keeping her at home
4. GAPS diet (the complete program as per the book)
5. Adrenal, Kidney and Liver Support
6. Craniosacral therapy

1 and 2 are both at the same level because I don't think they work without each other. For us, the parasite issue was also at the top level with 1 and 2 because it interferred with the homeopathic remedies. If I had done this 6 months ago, I would have said GAPS was at the top. It has been a necessary but not sufficient part of my daughter's healing. Adrenal, kidney and liver support have each on different occasions had big wows for us. If the organs had not been so stressed if they had recieved ongoing support, we might not have seen a wow from the support (I think this just shows how essential ongoing support is). Craniosacral was a huge wow at the point in time that we did it, but decreasing gains with it and in and of itself no way it could completely heal IMO but it got her to be able to SLEEP which was HUGE for her and for us.

Keeping her at home has been huge. I don't know how to rate this. It really reduces stress for her and allows me to micromanage her treatments so I can keep her in her operating paramenters, which is super important for her. But it's also isolating, so we get out and meet up with people whenever she's up to it and when she's doing well enough she goes to a small in home daycare a few days a week and thrives on that. We're just so blessed to be able to do this. And I have to put God at the top because He has been giving me all the information about how to treat Laine. I pray for signs every night.



Hi..may I know more details on adrenal, kidney and liver support pleas e

Sonalikaur
Posts: 4
Joined: Wed Jan 11, 2017 9:49 am

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

Postby Sonalikaur » Thu Jan 12, 2017 10:17 am

Hi..anyone has tried LDN ?

FatherOf2
Posts: 1595
Joined: Mon Mar 11, 2013 1:37 am

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

Postby FatherOf2 » Thu Jan 12, 2017 11:15 pm

Sonalikaur wrote:Hi..anyone has tried LDN ?

We tried ldn cream on feet. We had rough first 3 weeks because of sleep issues, but then it was ok. I thought my son was calmer on it, but overall couldn't see much difference. It is all individual . You have to try it, but be ready to give melatonin and Taurine for sleep.

crazydaddy
Posts: 37
Joined: Wed Dec 07, 2016 1:05 pm

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

Postby crazydaddy » Sun Jan 15, 2017 2:27 pm

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.

MM


Amazing progress and I have read some of your older posts, you had a fantastic drive and no time wasted to work on his recovery.

From looking back at it now did you ever figure out the root cause of the ASD symptoms? I know you had mentioned gut issues but was it ever pin-pointed more clearly with any of the testing you did? And if so what testing helped the most?


Return to “Diet and Biomedical Treatments for Autism”