New drug for autism?

Discuss autism diets and biomedical treatments of autism.

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alexsdad
Posts: 134
Joined: Fri Dec 30, 2011 1:31 pm

Re: New drug for autism?

Postby alexsdad » Sat Feb 21, 2015 2:04 pm

luis - The episode somewhat looks like acid reflux but very severe. Most of people have seen his episode thought he was having seizure. GIs swear they are neurological while the neurologists say they can't find any evidence it is seizure. It could be some kind of movement disorder but whatever it is I'm pretty sure there is no diagnosis for it yet. Good luck with your trial.

kulkulkan
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Re: New drug for autism?

Postby kulkulkan » Sat Feb 21, 2015 2:53 pm

alexsdad wrote:Yup. That's why I want Dr. Naviaux to be able to continue his research and have an opportunity to prove his theory is right. (or wrong) FatherOf2 made a great point above regarding the use of anti-histamine to address elevated extracellular ATP. That's Dr. TT's approach. Dr. TT and Dr. N are in the same field and their theories are actually very similar. I just realized that Dr. TT is the one behind Neuroprotek. No wonder Dr. TT is bashing Dr. N.


Yes Dr. TT is pretty sensitive and I do recall he was upset his papers were not referenced at all in Dr N study. What is impressive about Dr N's study was he was able to reverse ASD symptoms even in a genetic fragile X mouse model of ASD, not just the MIA model. I wonder if Dr N did reference Dr TT in the two follow-on studies.

As for the underlying cause or triggers, these may be long gone (eg MIA mouse model), not necessarily chronic according to Dr N. Even psychological trauma is highlighted as a potential cause in one study. Notwithstanding, I certainly hope it is chronic for most and such triggers can be identified and reversed.

FatherOf2
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Re: New drug for autism?

Postby FatherOf2 » Sat Feb 21, 2015 3:47 pm

For some reason when I see statements like "reversed ASD symptoms", I tend to think of a permanent change, and that is how I misread the first article by Dr N. I mistakenly thought that the cell danger response signal was turned off permanently by suramin. But, both the first and second articles about suramin state clearly closer to the end that the reversals lasted only 5 or 6 weeks. I think it would be proper for everyone talking about reversals of ASD symptoms to add the word "temporary", i.e. "temporarily reversed ASD symptoms", to prevent false hopes of autism cure. It would also reflect the reality closer if the word "reversed" is replaced with the word "improved". "Reversal" means that the developmental delays associated with ASD are gone too. But we all know it is impossible in such a short time (5-6 weeks). For example, an autistic child wouldn't just start talking age-appropriately in 5-6 weeks if that child didn't talk at all before taking the medicine.

alexsdad
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Re: New drug for autism?

Postby alexsdad » Sun Feb 22, 2015 12:15 am

Things went south badly with my son today. He had a red face all day too. Looks like that's the symptom of Kudzu overdose so we stopped Kadzu for now. I read Benadryl can help with Kudzu side effect but we didn't use it because he was doing already better by the evening.

FatherOf2 - I know what you mean. It says 'Single dose of Suramin...' in multiple places and I thought it was misleading. APT seems to treat the symptoms only. I've always thought targeting symptoms is not a good idea and we should always get to the bottom of the root cause. I had a second thought on this matter though. Many modern drugs and treatments help the patients manage the symptoms while it can't treat the root cause. AED is a good example. One with epilepsy can still make a great life even if he or she has to use a drug to manage seizure for the whole life. Sometimes people grow out of seizure after suppressing the seizure activity for some time. Maybe the same thing can happen with CDR if the patient's (especially younger child) body can learn the correct behavior once the CDR is forced to be turned off for some time.

FatherOf2
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Re: New drug for autism?

Postby FatherOf2 » Sun Feb 22, 2015 12:36 am

I totally agree with you, alexsdad. I don't mind a life-long medical therapy as long as it is effective and free of serious side-effects. If I read a list of side-effects for suramin, it is frightening. But then I don't know how often they occur. Does anyone have a good info on whether suramin is OK for chronic use? I am afraid that suramin will be somewhat similar to anti-inflammatory steroids (prednisone) and other immune suppressors: you'll get great results but can't use the meds for a long time to keep the results.

kulkulkan
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Re: New drug for autism?

Postby kulkulkan » Fri Feb 27, 2015 11:01 am

Found supplement Syntrinol which has the P2Y2 antagonist tangeretin plus another flavonoid. It has some studies including bioavailability studies (gel cap has most bioavailability) and aside from being antioxidant, it has shown efficacy to reduce cholesterol. In terms of side effects, anecdotally couple of people reported loose stools and one person reported high liver enzymes function after taking this for a long time.

I might try it on myself as my doctor keeps pushing statins as long term preventative measure.

kulkulkan
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Re: New drug for autism?

Postby kulkulkan » Fri Feb 27, 2015 11:12 am

Mercury stimulates P2X2 and antagonizes P2X4. Metals and other ROS can also have an impact here. That does make me wonder whether suramin would work for chronic cases where the infection or source (ROS) is not long gone.

http://www.pubfacts.com/detail/19793987 ... lar-Cys430

FatherOf2
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Re: New drug for autism?

Postby FatherOf2 » Fri Feb 27, 2015 12:25 pm

kulkulkan wrote:...That does make me wonder whether suramin would work for chronic cases where the infection or source (ROS) is not long gone...

Why would Cell Danger Response stays on if its root cause was gone long ago?

kulkulkan
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Re: New drug for autism?

Postby kulkulkan » Fri Feb 27, 2015 1:06 pm

FatherOf2 wrote:
kulkulkan wrote:...That does make me wonder whether suramin would work for chronic cases where the infection or source (ROS) is not long gone...

Why would Cell Danger Response stays on if its root cause was gone long ago?


Good question - Dr. N doesn`t really try to address this question in his hypothesis. Per below, the trigger may be gone but not the underlying changes that it made (maybe epigenetics, immune activation, etc.). His hypothesis doesn`t try to address the underlying root cause but if correct, rather tries to identify and possibly correct the most common downstream change across the different types of ASD.

From the Dr N`s paper referenced earlier:
When the CDR fails to resolve, chronic disease results. Beginning in the first trimester, the brainstem is responsible for the chemosensory integration of whole body metabolism with neurodevelopment. After birth, the trajectory of normal development can be altered if the CDR and its attendant metabolic changes persist. Some of the diseases that result from a pathological persistence of the CDR include: autism spectrum disorders (ASD), attention deficit hyperactivity disorder (ADHD), food allergies, asthma, atopy, emphysema, Tourette's syndrome, bipolar disorder, schizophrenia, post-traumatic stress disorder (PTSD), traumatic brain injury (TBI), chronic traumatic encephalopathy (CTE), suicidal ideation, ischemic brain injury, spinal cord injury, diabetes, kidney, liver, and heart disease, cancer, Alzheimer and Parkinson disease, and autoimmune disorders like lupus, rheumatoid arthritis, multiple sclerosis, and primary sclerosing cholangitis. Pathological persistence of the CDR can occur after the inciting agent has gone. This can be the result of hormesis and metabolic memory, somatic epigenetic changes (Blumberg et al., 2013), or both. Purinergic signaling appears to play an important role in sustaining the multifaceted metabolic features of the CDR. This observation led to the successful correction of all 16 of 16 multi-system, autism-like features in a classic animal model of ASD using antipurinergic therapy (APT) (Naviaux et al., 2013).

FatherOf2
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Re: New drug for autism?

Postby FatherOf2 » Fri Apr 10, 2015 10:01 am

For those interested, the Suramin study on approximately 20 autistic kids, ages 4-9, will start in May, and there are screenings under way in April. We decided not to participate in the study after receiving the documents. The documents clearly state that Suramin is not suitable as a repeated treatment and that the study is not trying to develop it as a drug for autism. The goal of the study is to show whether drugs similar to Suramin may affect ASD symptoms. Suramin single-dose administration requires to spend 4 hours in a hospital with an IV bag. I am not sure if my son can tolerate a needle in his vein for 4 hours. But this is an important study of a concept that CDR might be responsible for autistic behaviors. If it is successful, it will encourage the development of safer drugs than Suramin.

dolfanesq
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Re: New drug for autism?

Postby dolfanesq » Tue Apr 28, 2015 11:26 pm

Fatherof2 how did you hear about Dr. N's beginning human trials?

Formydaughter3
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Re: New drug for autism?

Postby Formydaughter3 » Thu Jun 25, 2015 3:50 am

Any word on how this went?

alexsdad
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Joined: Fri Dec 30, 2011 1:31 pm

Re: New drug for autism?

Postby alexsdad » Thu Jun 25, 2015 10:11 pm

I wanted to enroll my son for this trial but they said they were looking for local candidates only. The official results probably won't be published until next year.

alexsdad
Posts: 134
Joined: Fri Dec 30, 2011 1:31 pm

Re: New drug for autism?

Postby alexsdad » Tue Sep 08, 2015 5:23 pm

There may be people who want to try out Kudzu after seeing my post so I feel obligated to post a follow-up.

Unfortunately Kudzu stopped working for my son after several weeks. I did more research on this herb and actually became suspicious the initial benefits we saw were from anti-purinergic effect of Kudzu. Dr. Naviaux believes P2Y receptors play more important role than P2X receptors in the Anti-Purinergic Therapy and Kudzu mostly suppresses P2X receptors. I'm guessing Kudzu might have some anti-epileptic effect and that's how my son benefited from that herb. The initial benefits we saw was probably not placebo because we went by the number of seizure episodes we logged but it just doesn't look like replicating the same anti-purinergic effects in Dr. Naviaux's theory.

daisyprincess
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Re: New drug for autism?

Postby daisyprincess » Wed Jan 20, 2016 6:13 am

Bring on the research! It's great to hear that someone is looking for a cure. I am encouraged by this and hope it will lead to an end of this living nightmare for many many families.

FatherOf2
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Re: New drug for autism?

Postby FatherOf2 » Fri Jan 29, 2016 1:08 am

I had an unpleasant experience with the Dr behind the Suramin studies (I won't mention his name). I met with him 1 year ago on a topic not related to Suramin. He offered to conduct a metabolomics blood and urine test on my autistic son. We collected blood samples from my screaming son (it is always an ordeal to draw his blood). Then, a couple of months later, after me asking if the results were ready, the Dr asked for $10k for him to conduct the test. He didn't mention this price tag when we met first time. Neither I asked for this test, he voluntarily offered it. I decided not to pay and never saw the results.

luis
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Re: New drug for autism?

Postby luis » Mon May 16, 2016 9:38 am

Any news about Suramin trial ?

alexsdad
Posts: 134
Joined: Fri Dec 30, 2011 1:31 pm

Re: New drug for autism?

Postby alexsdad » Mon May 16, 2016 10:07 am

I am waiting for the result to be published too...

http://www.prohealth.com/library/showar ... ibid=28894

tuongtrante1
Posts: 2
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Re: New drug for autism?

Postby tuongtrante1 » Thu Jun 16, 2016 5:24 pm

So what is this?? What is going on here? :|

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

Re: New drug for autism?

Postby FatherOf2 » Sun Dec 18, 2016 1:35 am

The Suramin study started in 2015. The first phase finished in March 2016. 10 boys of ages 4-14 were recruited and divided in drug and placebo groups. The study was limited to San Diego residents only. The results were supposed to be published by the end of 2016. Online 3rd-party resources indicate that the results are "promising", but no data so far. Dr Naviaux from UCSD, the leading researcher of Suramin for autism, has been having difficulties financing this study. He invested $700k of his own money. I can see why big pharma lacks interest to this study: Suramin is a 100 year old drug with expired patents and low profit potential. Even if the results of the first phase are published, it is highly unlikely that they will prove or change anything because of such a small number of participants unless all 5 boys who received Suramin IV got cured of autism permanently, which will be unprecedented. My expectation is that those who received Suramin IV showed some improvements, but regressed after discontinuation of treatment just like in the case of corticosteroids (Prednisolone).


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