Speech help

Discuss autism diets and biomedical treatments of autism.

Moderator: ModeratorBill

antoine
Posts: 23
Joined: Tue Mar 15, 2016 8:47 pm

Speech help

Postby antoine » Tue May 17, 2016 12:29 pm

Hi everyone,
I have been reading this forum for months now, But never posted anything.
I have a 27 months old non-verbal son, I am planning to do OAT test (I have the kit here, but getting his urine sample has been a struggle)
We do not have a DAN! Dr since I live in a small town in Canada.
What we have done so far:
-SCD diet (also yeast free, organic)
-Nystatin (made everything worst for us, he started to have new autistic issues on top of his problems such as: head banging, eye stimming, verbal stimming and flu symptoms (bad cough, runny nose, feeling miserable) for months, at first i thought it is die-off effect but he never got better, so we just stopped it
-cytoflora
-liverlife
-vita-spectrum powder
-calcium
-D3
-Mg
-digestive enzyme
-enhansa
-probiotics (klaire's detox, culturelle, etc)
-MB12 shot twice a week
-GSE
- yeast aid
-speech and occupational therapy (not intensive)
-Zn

My son has OCD behaviours, very obsessed with water, no pointing/waving and serious language delay (no tantrums at all, no issues with changes, likes to go shopping and be outdoor, very smiley with strangers, no sleep issues, no aggression)
So far after 5 months of Biomed we have better eye-contact (not perfect), slow cognitive progress (like bringing us his shoes to show he wants to go play outside) but we do not have any words (in fact we lost our five words that we had before starting Biomed) He hasn't even start to point or wave yet.

I have diflucan but will wait till have the OAT results (considering our terrible expetience with nystatin) also i am considering ac chelation in the future...
I will appreciate any comments and help from experienced parents.
Thanks in advance!

williams_dad
Posts: 2970
Joined: Sun Feb 12, 2006 6:47 am

Re: Speech help

Postby williams_dad » Wed May 18, 2016 4:04 am

rather than the Zn, Ca and Mg separately give Thorne Citramins, you'll get more minerals and probably save money
https://www.thorne.com/products/dp/citr ... opper-iron

and good move dumping the nystatin, try kefir for fixing the mess
not sure enhansa is a good idea, you could be wasting your money there

I presume GSE is grapefruit seed extract, go easy with that
http://spectrumsleuth.fr.yuku.com/forums/11/General/General

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

Re: Speech help

Postby jaumeb » Wed May 18, 2016 10:02 am

My advice is to be very cautious. I suspect many "treatments" could make things worse. I don't take any supp or med right now. I started taking organic turmeric two days ago. Start always with a tiny dose. I am interested in the ideas of the Weston Price Foundation.

antoine
Posts: 23
Joined: Tue Mar 15, 2016 8:47 pm

Re: Speech help

Postby antoine » Wed May 18, 2016 10:36 am

Thanks a LOT for the reply WD and J.
I forgot to mention
-ALC
-nordic omegas
And classical homeopathy (since a month ago,havent seen anything at all yet)
I will sure try kefir soon WD. Do you really think Enhansa might be money wasting? I saw crazy BMs when we started it, but that is it (i am giving two caps am and pm now)

I haven't giving him any additional vit E, I read yesterday that omegas without vit E can do even more harm... So ordered vit E and barely grass to reduce the oxidative effects of the fatty acids.
Also since we started Biomed his urine smells pretty strong.

Nikkie111
Posts: 358
Joined: Thu Sep 24, 2015 6:26 am

Re: Speech help

Postby Nikkie111 » Wed May 18, 2016 10:40 am

Yes kefir and transdermal R-lipoid acid if you're up for chelation- been doing this on my 4 yo with super results so starting my 19mo this weekend

Good luck

antoine
Posts: 23
Joined: Tue Mar 15, 2016 8:47 pm

Re: Speech help

Postby antoine » Wed May 18, 2016 11:04 am

Nikkie111 wrote:Yes kefir and transdermal R-lipoid acid if you're up for chelation- been doing this on my 4 yo with super results so starting my 19mo this weekend

Good luck


Hi Nikkie
Thanks for your kind reply. Is TD R-ALA available without prescription? Or you just prepare your own using caps? Are you applying it every 3-4 hrs? (I am sorry i know i have too many questions)
Is that matters where to apply it? (Or where not to?)

Thanks again!

varen2
Posts: 103
Joined: Mon Mar 30, 2015 11:35 pm

Re: Speech help

Postby varen2 » Wed May 18, 2016 1:56 pm

Hi,

You should definitely go ahead with OAT test. Is your son potty trained? If not, they provide a pediatric collection bag to collect urine during night time. I believe they have some picture and instructions on the collection bag on how to attach a bag and collect urine.


My son has been on Feast Without Yeast diet and Nystatin for 1 year now.
Eliminating sugars, dry fruit, nuts, and some other stuff helped a lot.
Nystatin gave him a good speech foundation. Basically he went from saying single words (partial words, only the end of the word) to two-three word sentences in a few months.

Nystatin has to be in a pure form (powder).
We had a bad effect from Nystatin tablets due to fillers in them. I believe the worst filler was corn starch. My son used to get face twitches and weird hand movements (he used to hold hands in a weird way) when he was taking Nystatin tablets with corn starch.

Nystatin only works in combination with a diet. If your son is still eating something problematic, Nystatin can make some symptoms worse.
Also, the dose has to be right. We were giving too much Nystatin to my son and he had aggressive reaction every time he took Nystatin.
The correct dose is 500,000 Units 4 times a day. If you still see a bad reaction approximately 40 minutes after taking Nystatin, you need to try lower dose, for example 300,000 Units 6 times a day.


Can you please post what your son is eating (a list of foods). I can point you to the foods that might be problematic for him (based on what my son cannot eat). Perhaps eliminating some foods will help with his speech development.

SCD diet was not designed for Autistic kids. It was designed to treat Ulcers and gut. SCD diet allows some foods that are problematic for autistic children. That's why I chose not to follow this diet.

So far Nystatin (in the pure powder form and correct dose) was the best booster for my son's speech.
Also, Nystatin doesn't work with probiotics and Vit B (taken orally) because probiotics make yeast worse, not better. I believe B12 injections are fine with Nystatin.
But if you don't want to try Nystatin pure powder again, there are other things you can try.


1) First, I would try eliminating some foods that might be problematic (post a list here and I'll point you to the possible problematic foods)

2) Homeopathy (Carcinosin remedy works for my son almost the same way as Nystatin).
Please only give homeopathy after consulting a homeopath. Incorrect dose will give aggrevation of the symptoms.

3) Coconut kefir made with this Kefir Starter http://bodyecology.com/digestive-health ... arter.html
You should ferment kefir for 20 hours only and use it for 3 days. You'll need to make a new batch every 3 days.
Fermenting for 36 hours (as recommended on the pack) will turn kefir into vinegar. We had a bad reacting to kefir fermented for 30 hours.
Also, after 3 days it turns into vinegar and my son has a negative reaction to it. So, only freshly made Coconut kefir.
Start slow with 1 teaspoon of Kefir. My son has a good effect with 1 teaspoon of Coconut kefir.

4) We're trying Camel's colostrum right now (1/2 teaspoon twice a day) and it has a very good effect on my son's speech.
I've seen some good comments about Camel's milk on this forum. I'm sure Camel's milk will have a positive effect as well.
We got our Camel's Colostrum from here: http://desertfarms.com/


Chelation might be very harmful. If you read some posts on this forum you will see that some parents had a very negative results with Chelation. Prior to Chelation, I would run a Heavy Metal Hair Test to see if any heavy metal is present.
My son had some elevated tint and aluminum, but everything else was ok on his heavy metal hair test.

I would try eliminating some foods from his diet first. My son had no speech (not a single word) at 25 months of age. He is almost 3,5 years now and his speech is almost age appropriate.
The diet helped a lot with his speech development.

However, if he eats problematic foods even now, he just stops talking or he gets silly or angry.

Good luck.

varen2
Posts: 103
Joined: Mon Mar 30, 2015 11:35 pm

Re: Speech help

Postby varen2 » Wed May 18, 2016 2:03 pm

jaumeb wrote:My advice is to be very cautious. I suspect many "treatments" could make things worse. I don't take any supp or med right now. I started taking organic turmeric two days ago. Start always with a tiny dose. I am interested in the ideas of the Weston Price Foundation.


I agree with this comment. You're giving too many things at once. Some of them might be creating more problems than helping.

We don't give any supplements at all.
My son had anger issues with Kirkman's miltivitamins, Kirkmans Calcium powder, and some probiotics.

The vitamins that were ok with my son are Vit D, Fish Oil, Epsom Salt bath (for Magnesium).

antoine
Posts: 23
Joined: Tue Mar 15, 2016 8:47 pm

Re: Speech help

Postby antoine » Wed May 18, 2016 2:14 pm

varen2@gmail.com wrote:Hi,

You should definitely go ahead with OAT test. Is your son potty trained? If not, they provide a pediatric collection bag to collect urine during night time. I believe they have some picture and instructions on the collection bag on how to attach a bag and collect urine.


My son has been on Feast Without Yeast diet and Nystatin for 1 year now.
Eliminating sugars, dry fruit, nuts, and some other stuff helped a lot.
Nystatin gave him a good speech foundation. Basically he went from saying single words (partial words, only the end of the word) to two-three word sentences in a few months.

Nystatin has to be in a pure form (powder).
We had a bad effect from Nystatin tablets due to fillers in them. I believe the worst filler was corn starch. My son used to get face twitches and weird hand movements (he used to hold hands in a weird way) when he was taking Nystatin tablets with corn starch.

Nystatin only works in combination with a diet. If your son is still eating something problematic, Nystatin can make some symptoms worse.
Also, the dose has to be right. We were giving too much Nystatin to my son and he had aggressive reaction every time he took Nystatin.
The correct dose is 500,000 Units 4 times a day. If you still see a bad reaction approximately 40 minutes after taking Nystatin, you need to try lower dose, for example 300,000 Units 6 times a day.


Can you please post what your son is eating (a list of foods). I can point you to the foods that might be problematic for him (based on what my son cannot eat). Perhaps eliminating some foods will help with his speech development.

SCD diet was not designed for Autistic kids. It was designed to treat Ulcers and gut. SCD diet allows some foods that are problematic for autistic children. That's why I chose not to follow this diet.

So far Nystatin (in the pure powder form and correct dose) was the best booster for my son's speech.
Also, Nystatin doesn't work with probiotics and Vit B (taken orally) because probiotics make yeast worse, not better. I believe B12 injections are fine with Nystatin.
But if you don't want to try Nystatin pure powder again, there are other things you can try.


1) First, I would try eliminating some foods that might be problematic (post a list here and I'll point you to the possible problematic foods)

2) Homeopathy (Carcinosin remedy works for my son almost the same way as Nystatin).
Please only give homeopathy after consulting a homeopath. Incorrect dose will give aggrevation of the symptoms.

3) Coconut kefir made with this Kefir Starter http://bodyecology.com/digestive-health ... arter.html
You should ferment kefir for 20 hours only and use it for 3 days. You'll need to make a new batch every 3 days.
Fermenting for 36 hours (as recommended on the pack) will turn kefir into vinegar. We had a bad reacting to kefir fermented for 30 hours.
Also, after 3 days it turns into vinegar and my son has a negative reaction to it. So, only freshly made Coconut kefir.
Start slow with 1 teaspoon of Kefir. My son has a good effect with 1 teaspoon of Coconut kefir.

4) We're trying Camel's colostrum right now (1/2 teaspoon twice a day) and it has a very good effect on my son's speech.
I've seen some good comments about Camel's milk on this forum. I'm sure Camel's milk will have a positive effect as well.
We got our Camel's Colostrum from here: http://desertfarms.com/


Chelation might be very harmful. If you read some posts on this forum you will see that some parents had a very negative results with Chelation. Prior to Chelation, I would run a Heavy Metal Hair Test to see if any heavy metal is present.
My son had some elevated tint and aluminum, but everything else was ok on his heavy metal hair test.

I would try eliminating some foods from his diet first. My son had no speech (not a single word) at 25 months of age. He is almost 3,5 years now and his speech is almost age appropriate.
The diet helped a lot with his speech development.

However, if he eats problematic foods even now, he just stops talking or he gets silly or angry.

Good luck.


Hi Kat,
I have been in contact with you before through email. Yes I am doing homeopathy with a known homeopath, so far, seeing no negative or positive signs at all (well, it is early to judge too, we have started it only in April)
We are doing yeast free diet (no sugar at all, just raw honey. Very lumited fruit)
I understand that Biomed is tricky, nystatin was your son's wow medicine and was a complete failure here, I am sure the same goes for chelation, etc. i have to find what works for us considering other parent's experiences.
Many times I regret the whole Biomed thing (including doing diet) since we haven't seen anything special (except slightly better eye-contact) to encourage me but then starts "what ifs"...
I just ordered kefir starter.

Nikkie, i have ALA at home, is there a big difference between R-ALA and that one? What is the dose you are applying?

Thanks for your help everyone!

antoine
Posts: 23
Joined: Tue Mar 15, 2016 8:47 pm

Re: Speech help

Postby antoine » Wed May 18, 2016 2:27 pm

In addition to OAT I may do 23andme test (or Yasko?) to see where we are failing.
But I won't consider Nystatin (at least anytime soon) since we saw enough regression with it.

Also here OTs and STs are not recommending ABA anymore, so we are doing floor-time.

varen2
Posts: 103
Joined: Mon Mar 30, 2015 11:35 pm

Re: Speech help

Postby varen2 » Wed May 18, 2016 8:07 pm

antoine wrote:In addition to OAT I may do 23andme test (or Yasko?) to see where we are failing.
But I won't consider Nystatin (at least anytime soon) since we saw enough regression with it.

Also here OTs and STs are not recommending ABA anymore, so we are doing floor-time.


Just a few thoughts:
We had some hiccups with honey recently. A brand we used to use no longer worked for my son. He was getting silly so I tried a different brand, amen story. Although it says on the pack that it's completely raw. A third brand I tried works fine. He is fine with that one. I think some brands might have some added stuff or sugar.
So just test if honey you're giving is not causing any problems. I usually test foods in the morning when my son feels better.

Regarding fruits:
I've been experimenting with foods for over a year now. The most problematic foods are the once that have sugar. My son can eat lentils and some rice, potatoes because they don't have any sugar. Some starch is fine. However, carrots, butternut squash, sweet potatoes and beets don't work for him. Too much sugar in those veggies.

If you'd like to try to eliminate yeast with the diet, I would stop giving all fruit and replace with some complex carbs.

Acorn squash is our staple food - it has no sugar and low carbs. I boil acorn squash and mix it with some white rice flour and safflower and make waffles or pancakes.

We also eat wild cough salmon every day. Veal and Some chicken breast from time to time.

We don't eat boiled rice, it's too starchy. I only use white rice flour for waffles and pancakes.



Fried potatoes with cucumber or salad, asparagus or broccoli..

If homeopathic remedies don't show immediate results they're probably not working.

Nikkie111
Posts: 358
Joined: Thu Sep 24, 2015 6:26 am

Re: Speech help

Postby Nikkie111 » Wed May 18, 2016 8:11 pm

antoine wrote:In addition to OAT I may do 23andme test (or Yasko?) to see where we are failing.
But I won't consider Nystatin (at least anytime soon) since we saw enough regression with it.

Also here OTs and STs are not recommending ABA anymore, so we are doing floor-time.

We did yasko with both and didn't help at all unfortunately - you might get better results
With regards to nystatin I agree, it's still a med better to go for natural approaches like kefir and juicing and ensure you don't feed the yeast
Another option you have is target the viruses. There is a general perception that it's the viruses and the metals that are causing the havoc anything else like yeast or bacteria is just a symptom
So you might have to also face chelation st some point and and look into safe ways to do so

antoine
Posts: 23
Joined: Tue Mar 15, 2016 8:47 pm

Re: Speech help

Postby antoine » Wed May 18, 2016 8:35 pm

Thanks Nikkie, yes I have been looking into anti viral protocol...
I have bought virastop (they have changed the name though), OLE and vitamin A (thinking at some point will try the high dose for two days)
I suspect my kid to be a viral one. but I have been waiting because it stirs up yeast...

Kat,
My son's eczema got better only after eliminating starch (potato and rice) so i think those were problematic for him (every child is different)

Our homeopath is Pierre, our second appointment is this Friday, so we will see...

Nikkie111
Posts: 358
Joined: Thu Sep 24, 2015 6:26 am

Re: Speech help

Postby Nikkie111 » Wed May 18, 2016 11:55 pm

antoine wrote:Thanks Nikkie, yes I have been looking into anti viral protocol...
I have bought virastop (they have changed the name though), OLE and vitamin A (thinking at some point will try the high dose for two days)
I suspect my kid to be a viral one. but I have been waiting because it stirs up yeast...

Kat,
My son's eczema got better only after eliminating starch (potato and rice) so i think those were problematic for him (every child is different)

Our homeopath is Pierre, our second appointment is this Friday, so we will see...

Yes the regression following the antivirals and what I assumed to be yeast was pretty bad for us but when when this passed the gains were awesome
There are many things that are delaying these children not just yeast and sometimes you have to ride it out and if these viruses are embedded within the cells you won't get far without tackling them

With regards to homropathy if it works it does, if it doesn't it doesn't and there is a huge chance it won't so don't rely too much on this :) we only saw some good gains with CEASE and nothing else :(


Good lucky

FatherOf2
Posts: 1668
Joined: Mon Mar 11, 2013 1:37 am

Re: Speech help

Postby FatherOf2 » Thu May 19, 2016 9:34 am

Those are all good supplement suggestions, but you can spend years on them and your son won't start talking because you were not addressing the root cause. You should first find a good neurologist who specializes in childhood autism. A children's hospital in your town should have one. Then do a 24-hr video-monitored EEG. If the neurologist see seizures or abnormal EEG activity, he/she may prescribe anti-seizure meds, which help some kids to start talking. You should also find a good DAN doctor, who will experiment with treatments alternative to the mainstream neurologist. Our son started talking again after we gave him Piracetam, which nobody in US will prescribe. Galantamine (med for Alzheimer's disease) and HBOT had a great impact too.

antoine
Posts: 23
Joined: Tue Mar 15, 2016 8:47 pm

Re: Speech help

Postby antoine » Thu May 19, 2016 10:12 am

FatherOf2 wrote:Those are all good supplement suggestions, but you can spend years on them and your son won't start talking because you were not addressing the root cause. You should first find a good neurologist who specializes in childhood autism. A children's hospital in your town should have one. Then do a 24-hr video-monitored EEG. If the neurologist see seizures or abnormal EEG activity, he/she may prescribe anti-seizure meds, which help some kids to start talking. You should also find a good DAN doctor, who will experiment with treatments alternative to the mainstream neurologist. Our son started talking again after we gave him Piracetam, which nobody in US will prescribe. Galantamine (med for Alzheimer's disease) and HBOT had a great impact too.


Hi Fatherof2,
I have read your previous posts, they have been very helpful thanks a lot!
Manitoba (the province which we are living in) is pretty poor when it comes to specialists and DAN Drs. I found a MD DAN doctor in Ontario (24 hrs drive from here), I may have to request a loan to go see him. You are totally right about addressing the problems first. I guess I will ask our family doctor to refer us to a neurologist (this is how things work in Canada... You can't chose any doctor) if he doesn't then we may have to see the possibility of seeing a good specialist in the states...

Thank you very much, it was very helpful.

varen2
Posts: 103
Joined: Mon Mar 30, 2015 11:35 pm

Re: Speech help

Postby varen2 » Fri Jun 17, 2016 3:40 am

antoine wrote:Hi everyone,
I have been reading this forum for months now, But never posted anything.
I have a 27 months old non-verbal son, I am planning to do OAT test (I have the kit here, but getting his urine sample has been a struggle)
We do not have a DAN! Dr since I live in a small town in Canada.
What we have done so far:
-SCD diet (also yeast free, organic)
-Nystatin (made everything worst for us, he started to have new autistic issues on top of his problems such as: head banging, eye stimming, verbal stimming and flu symptoms (bad cough, runny nose, feeling miserable) for months, at first i thought it is die-off effect but he never got better, so we just stopped it
-cytoflora
-liverlife
-vita-spectrum powder
-calcium
-D3
-Mg
-digestive enzyme
-enhansa
-probiotics (klaire's detox, culturelle, etc)
-MB12 shot twice a week
-GSE
- yeast aid
-speech and occupational therapy (not intensive)
-Zn

My son has OCD behaviours, very obsessed with water, no pointing/waving and serious language delay (no tantrums at all, no issues with changes, likes to go shopping and be outdoor, very smiley with strangers, no sleep issues, no aggression)
So far after 5 months of Biomed we have better eye-contact (not perfect), slow cognitive progress (like bringing us his shoes to show he wants to go play outside) but we do not have any words (in fact we lost our five words that we had before starting Biomed) He hasn't even start to point or wave yet.

I have diflucan but will wait till have the OAT results (considering our terrible expetience with nystatin) also i am considering ac chelation in the future...
I will appreciate any comments and help from experienced parents.
Thanks in advance!


Hi, did you have a chance to run OAT test?

Just wanted to share our NEGATIVE experience with B12 vitamin. After reading so many good things about B12 and improved speech, I wanted to try it for my son. I always thought that some supplements might make yeast worse if taken orally.

We got very expensive Vi B12 drops from the UK. The drops dissolve in the mouth - they do not get into the gut so there is no way the vitamin would interact with the yeast in his gut. Well, my son was fine on the first day, he got slightly worse on the second day and he got a really bad yeast flare on a third day.

He is much worse in just 3 days of taking B12. I think someone else mentioned here that B12 makes yeast worse. Apparently even B12 drops or shots might make yeast worse. Please read more on this forum for a more informed decision.
I know you were taking Nystatin to treat yeast and there is a possibility that B12 shots made yeast much worse. No B12 or any other B supplements for us from now on...

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

Re: Speech help

Postby jaumeb » Fri Jun 17, 2016 6:05 am

Varen, you said that b12 caused a yeast flare for your son. Could you specify the symptoms? Thanks.

varen2
Posts: 103
Joined: Mon Mar 30, 2015 11:35 pm

Re: Speech help

Postby varen2 » Fri Jun 17, 2016 1:45 pm

jaumeb wrote:Varen, you said that b12 caused a yeast flare for your son. Could you specify the symptoms? Thanks.


He woke up at night laughing, he also peed in bed that night. He had real issues with aggression that day, separation issues at preschool (didn't want me to go), he was afraid of walking on a shiny floor at the library. he is generally very repetitive and silly. Instead of having a conversation, he just repeats phrases from cartoons. This is really bad right now. These are the symptoms we used to have a while back when his yeast was much worse.

About my son: he is 3,5 years old, fully potty trained (no accidents at night), he goes to a regular preschool, his language is almost on the same level as other kids of his age. He is a loving caring boy. We never supplemented with vitamins except for Calcium and Vit D, some Fish oil for a while. My son has been on a mix of "Feast without Yeast" and SCD diet and Nystatin for over 1 year.

He was diagnosed with Autism when he was 2. He was non-verbal, wearing diapers, did not respond to his name, he used to wake up every night screaming. Real issues with separation and fear of open spaces. As you can see, he made huge improvements with the diet and Nystatin.

I knew that Vit B interferes with Nystatin, but I had no idea that it doesn't have to get into his gut to create problems. I am sure that Nystatin didn't work for antoine's child because they are supplementing with vitamins, but this is my personal opinion. Also, Nystatin itself should be in a pure powder form to work. I don't think tablet form is effective enough.

Anyway, this is how my son got much worse with B12 vitamin.

However, I gave my son a recommended dose of B12 (as recommended on the bottle) every day for 3 days in a row. I wonder if it was too much. I see that other parents give B12 shots once every 3 days.
Last edited by varen2 on Tue Jul 12, 2016 1:37 am, edited 2 times in total.

antoine
Posts: 23
Joined: Tue Mar 15, 2016 8:47 pm

Re: Speech help

Postby antoine » Fri Jun 17, 2016 2:40 pm

At the monent of using Nystatin we were not supplementing anything (not even probiotics) so how somebody can be SURE what is our problem? Autism is complex, nobody can prescribe the same remedy for everybody.

Well, We received the OAT test results, and well no surprise why my son is still no-verbal...it is a MESS!
He has high oxalates, low b viramins, arabinose yeast and also bacteria, Malabsorption and dysbiosis, he is not detoxing well... So our case is not only the yeast...
We have to address the bacteria at the same time while we are treating the yeast, otherwise we will have bad bacteria flare ups.


Return to “Diet and Biomedical Treatments for Autism”