New to ASD....Need advice from experts (Fatherof2 please help us)

Discuss autism diets and biomedical treatments of autism.

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FatherOf2
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Mon Nov 06, 2017 6:47 pm

Maggy wrote:Hello Fof2,
We have our son's EEG appointment scheduled tomorrow morning ,how long will it take to know the EEG test results or it is instant ?
one more thing our MAPs doctor agreed to start on medication soon(right now we are only on supplements) she mentioned about Namenda or Creatine which one is good at improving speech or can we try both at the same time ?

Thanks
Maggy

About 1 to 2 weeks for EEG results. Did the DAN doctor offer Creatine without you mentioning it? Both Namenda and Creatine are good for speech. Creatine doesnt need prescription and you can start with it (Kre Alkalyn). 2 weeks later you can start with Namenda.

Maggy
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Mon Nov 06, 2017 9:01 pm

In our last appointment I mentioned we would like to start on some real medication instead of all these supplements she mentioned about these two drugs
Thanks
Maggy

Maggy
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Sat Nov 18, 2017 12:10 am

Hello Fof2,
Our son's EEG test results (45 mins test) came out normal today,is it OK to try HBOT if the EEG test results normal?


Thanks
Maggy

FatherOf2
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Sat Nov 18, 2017 11:40 am

It helps if EEG is normal to begin with. But keep in mind that HBOT will cause oxidative stress, and things may get worse for some patients. As I stated before, I don't believe that HBOT helps with language. I saw slight regressions in language in my son during HBOT, but it helped him to get to the next level of functioning (better awareness, following commands, less tantrums). Because HBOT costs a lot of money and time, and the results are not guaranteed, you should really consult your doctor whether HBOT is an appropriate treatment for your child.

Maggy
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Sat Nov 25, 2017 12:10 pm

Hello fof2,
Is there a difference between Acetyl-L-Carnitine and Creatine?
Our DAN wanted to start with Carnitine.

Thanks
Maggy

FatherOf2
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Sat Nov 25, 2017 5:26 pm

Those are two different things:

Acetyl L-Carnitine is broken down in the blood to carnitine which is used to transport fatty acids into mitochondria, where it is broken down to ATP in the Krebs cycle. So, it helps with energy metabolism but only if the Krebs cycle is working. It is also believed to promote the production of acetylcholine possibly through the donation of the acetyl group. It is widely believed to help with learning, but in my son's case it does absolutely nothing.

Creatine goes inside mitochondria itself and facilitates recycling of adenosine diphosphate (ADP) to ATP (the energy source of cells) via donation of phosphate groups.

So, ALCAR helps to bring fuel (fats) into the cell and Creatine helps to create energy (ATP) from that fuel. It is interesting that some people see improvements in their autistic kids from Valtrex without realizing that Valtrex regulates ATP, most likely reducing it. I personally feel very sluggish when I take Valtrex and very energetic and happy when it wears off (boost of ATP?). So, depending which way the Kerbs cycle is broken, your child may or may not benefit from ALCAR or Creatine. If it does benefit from increasing ATP, then other supplements such as NADH, d-ribose, B2, and niacin should also help. Keep in mind that there is also a theory that extracellular ATP can be harmful. Cells under stress or injury from viral/bacterial pathogens and toxins start excreting ATP into the extracellular space. This is known as the "cell danger response". This extracellular ATP then binds to P2X receptors of the cells creating the inflammation and pain responses in the body. I just described what happens in the body when you are injured. According to Dr. Naviaux this '"cell danger response" is the main cause of autism and can be attenuated by Suramin that reduces binding of ATP to P2X receptors. So, if Dr. Naviaux is right, increasing ATP by ALCAR or other supplements is a bad thing. But my son benefits from Creatine.

Maggy
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Sun Nov 26, 2017 1:50 pm

Thank you for your detailed explanation,one more question when we asked our DAN About HBOT she mentioned about a blood test to find out if he has any inflammation in the brain,not sure about the test she is talking about ,what is that test and how accurate is that one?

Thanks
Maggy

FatherOf2
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Sun Nov 26, 2017 2:20 pm

Maggy wrote:Thank you for your detailed explanation,one more question when we asked our DAN About HBOT she mentioned about a blood test to find out if he has any inflammation in the brain,not sure about the test she is talking about ,what is that test and how accurate is that one?

Thanks
Maggy

As far as I know, there is not blood test that shows brain inflammation. People do a lumbar puncture test to read TNF and other pro-inflammatory cytokines in the spinal fluid, which are accurate representations of what is happening in the brain. But I personally wouldn't do a lumbar puncture. You might as well assume that there is brain inflammation and treat it. The problem is that even you confirm brain inflammation through various tests, there is not much you can do about it. Even HBOT wouldn't cure it. Drugs will give only temporary relief.

Maggy
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Sun Nov 26, 2017 10:25 pm

Thank you for all your input,we are really worried about our son's speech we have no idea what to do at this point,none of the bio med stuff(mb12,supplements(leucovirin,digestive enzymes,probiotics,fish oil) are working out for me, he is completely non verbal at this point,we are totally confused whether to go for the HBOT or try something else(we are starting namenda and L acetyl Carnitine soon), could you please suggest some medication which will improve speech


Thanks
Maggy

FatherOf2
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Mon Nov 27, 2017 10:28 am

In the order of what most likely help with speech:
Prednisone (powerfull anti-inflammatory), Cerebrolysin (if you can get it, it is worth traveling to Europe just to get it), Encephabol (comes from Europe too), Piracetam, DMG, Lexapro, Rhodiola, Quercetin, Creatine, MCT oil, Bacopa (Synapsa brand only), CDP Choline.

If it was my son, I would ask his doctor to prescribe Prednsione and Lexapro right away and start with DMG, Rhodiola, Quercetin, Creatine, MCT oil, Bacopa, and CDP Choline, which you can buy on Amazon or your local health store. Stagger the start of each supplement by at least 1 week. In 2 months, if nothing worked, you can try harder to get Cerebrolysin, Encephabol and Piracetam. In Europe, nonverbal autistic kids are prescribed (by regular doctors) Cerebrolysin and Encephabol, which make miracles. Piracetam is my favorable, which made my son to talk at age of 3. In 4 months, if nothing worked, you can try HBOT, hard chamber only, 1.5atm 100% oxygen inside, not through the mask.

Maggy
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Mon Nov 27, 2017 3:08 pm

What is MCT oil?is it Similar to fish oil?who does it work?

Thanks
Maggy

Maggy
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Mon Nov 27, 2017 3:36 pm

*how does it work and have to give by mouth or apply somewhere on the body

Thanks
Maggy

FatherOf2
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Mon Nov 27, 2017 4:58 pm

Hi Maggie, I don't mind answering your questions, but some of them can be answered by you doing a simple internet search, for instance MCT oil. MCT oil is derived from coconut oil and taken through mouth.

It is very hard to say why some kids are verbal and some are nonverbal. My list is all about boosting the brain activity (Piracetam, Rhodiola, MCT oil, CDP choline, etc) and reducing inflammation (prednisone, HBOT). Another approach is to treat autism as an immune disregulation. You need to read Nikkie111 posts here. She has seen great success with treating the immune system. If you have umbilical cord saved, you can also look into stem cell therapy. There are contradicting theories why stem cell therapy works: some say it is because stem cells repairing the brain and some say it is because of white blood cells:https://spectrumnews.org/news/controversial-trial-cord-blood-therapy-autism-forges-ahead/

The researchers said in 2014 that the rationale for the Duke trial is based on stem cells. In animals, these cells can stimulate neuron growth and repair, and so might be able to help rewire a brain that has atypical neuronal connections.

However, they now say the treatment may work because of a type of white blood cells, called monocytes, found in cord blood. These cells release signaling molecules called cytokines that the researchers say may quell inflammation in the brain. Some people with autism show signs of brain inflammation.

Grandmother
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Grandmother » Mon Nov 27, 2017 6:59 pm

Hi Maggy,

Treating autism isn't just about adding things, but also subtracting things.  What diet do you have your child on?

Maggy
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Mon Nov 27, 2017 7:05 pm

Hello Grandmother,
We try to follow GFCF diet at home but not noticing any improvement with that,In day care he eats everything not following any food diet(they provide food) at daycare

Thanks
Maggy

Grandmother
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Grandmother » Mon Nov 27, 2017 7:38 pm

Maggy, that's a problem, even GFCF needs to be consistent.  And it's often not enough food eliminations.   At a minimum, you need to go completely organic and try also eliminating corn, soy, and all food additives, especially free glutamate.
http://www.sfgate.com/health/article/Ch ... 329126.php
She explains the gluten/dairy connection with these children and where free glutamate is:
https://www.youtube.com/watch?v=7jJj9W4uF_4

The SCD diet goes even further, designed to heal celiac and adapted for autism by also eliminating dairy:
http://www.breakingtheviciouscycle.info/

There are daycares where all the children bring their own food.

Did your son ever talk?

Maggy
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Joined: Sat Oct 21, 2017 3:53 pm

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Mon Nov 27, 2017 7:44 pm

He says only 5 to 10 words and uses them occasionally but sometimes he repeats everything what we say,the problem with him is he has poor eye contact

Thanks
Maggy

Grandmother
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Grandmother » Mon Nov 27, 2017 8:43 pm

Maggy, it's very encouraging that your child has some words, but you need to find a way to put your child on a consistent diet to even see if diet will help him.

Best wishes.

Maggy
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Joined: Sat Oct 21, 2017 3:53 pm

Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby Maggy » Tue Nov 28, 2017 12:41 pm

Thanks Grandmother and Fof2 for all your input

Fof2,
We would like to try Piracetam,do we need prescription for that?

Thanks
Maggy

FatherOf2
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Re: New to ASD....Need advice from experts (Fatherof2 please help us)

Postby FatherOf2 » Tue Nov 28, 2017 1:14 pm

Maggy wrote:Thanks Grandmother and Fof2 for all your input

Fof2,
We would like to try Piracetam,do we need prescription for that?

Thanks
Maggy

You don't need prescription for Piracetam. You can buy it at relentlessimprovement.com. I saw you said that your son uses words and has echolalia. Piracetam may not be the right choice. When my son started talking at 3 years on Piracetam, it was mostly echolalia rather than conversational language. Galantamine might be a better choice. The same website sells Galantamine tablets and through amazon too, cheaper. You have to start with 1/4 of the tablet once a day otherwise your child will become extremely hyper. Because of such small dose, it is much easier to give than 400-800mg of extremely bitter Piracetam. We had trouble hiding Piracetam in his food or drinks.

I just saw Piracetam on nootropicsdepot.com, only $12 for 60 capsules. Or you can buy powder there too. Use promo code REDDITS to get additional 10% discount. It is much cheaper than at relentlessimprovement.com


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