neuroprotek,

Discuss autism diets and biomedical treatments of autism.

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CaringDad71
Posts: 410
Joined: Fri Feb 06, 2009 1:24 pm

Re: neuroprotek,

Postby CaringDad71 » Tue Feb 22, 2011 12:22 pm

Sara,

You are quite welcome. :)

stephcurry12
Posts: 45
Joined: Sun Feb 06, 2011 7:05 pm

Re: neuroprotek,

Postby stephcurry12 » Tue Feb 22, 2011 12:29 pm

roseshoe wrote:hey all, how is everyone kids doing? we have continued at 2 caps a day and my son is continually sick. this week its green snot with a cough. his school thinks im a little goofy im sure as at the beginning of the year i told them my son never gets sick! he also is still getting small red dots at different times and different places on his body. i am truly at a loss, im not sure what to do, keep going or give his poor little body a break! we have stopped every think as he no longer tolerates anything else. any thoughts? thank you, rose


I would call Algonot. The woman who I have spoken to before stated that Dr. Theo would want to know of any adverse reactions to Neuroprotek. They would probably be able to give you some advice (one would hope!)

Just to note--we have not used this on our son. We ended up seeing another DAN doctor and started some other supplements that have more of a proven track record.

I hope that your son feels better.

Steph

joy
Posts: 244
Joined: Thu Apr 23, 2009 2:35 pm

Re: neuroprotek,

Postby joy » Tue Feb 22, 2011 10:31 pm

Thank you - this is fascinating.

We have had a viral thing in the family... DS's started w/a weird rash around his mouth, and allergy shiner looking things. Then I caught it.

I actually really think he was detoxing something out (his regression was kicked off w/a horrid bout of influenza 3 years ago...)and got to experience it again. He had a fever for 7 days, got a cough. Never developed anything more than general fatigue with those.

Anyway. We're now on the other side of the crud, and his verbals coming back from our ABA center are WAY better than they were in Jan. January, we averaged 265 verbal attempts per 3 hour session. Today he had 448

Am i delusional or are there people who say their kids have healing fevers? Could the neuroprotek have kicked off some kind of viral release?

Oh, and Caring Dad... DS's negative behaviours are WAY down since we started Neuroprotek. he's an undermethylator...


CaringDad71 wrote:

Quercetin was supposed to be a natural anti-histamine, not to increase histamines!


Yes, this is true. It is also anti-inflammatory.


it was kicking out some virus!......He's still got more OCD but his anger is gone.


Virus never really gets kicked out; it may be silenced, but it really stays e.g. Herpes which is a DNA virus and insinuates itself into our DNA. During opportune times of immune weakness, it can pop out again. One can hope to silence virus by attaching a methyl group to its DNA. Therefore, good methylation is key.

Regarding the anger/mood swings, it is valuable to remember that in addition to being anti-inflammatory quercetin is also a catechol o' methyltransferase (COMT) inhibitor (also, it turns out that it is a MAO inhibitor!). This means that by inhibiting this enzyme, dopamine turnover may also be altered. Therefore, the fluctuations in dopamine can cause mood swings. The degree to which mood swings can heat up depends on COMT status. Therefore, if your child is COMT+ (genetic 'overmethylator'; limited tolerance for additional methyl donors) his/her dopamine will be already relatively high. Hence, inhibiting his/her COMT enzyme will cause more dopamine to hang around longer and the result is one peevish child. Conversely, if your child is COMT-(genetic 'undermethylator'; can tolerate additional methyl donors), he/she will generally have a lower dopamine status. This ties into the above theme of histamine because frequently, some (Pfeiffer method) will define methylation status by histamine levels i.e., low whole blood histamine will denote overmethylator, while high whole blood histamine will denote undermethylator. While this biochemical marker can be useful, it is prone to fluctuation because of supplementation e.g., MB12, TMG, 5-MTHFolate and SAM-e can alter methylation status in an individual.

Although the following article is not autism-related, it discusses quercetin in some detail as it relates to dopamine.

http://www.ncbi.nlm.nih.gov/pubmed/12711835

Hope That This Helps!
~Joy~

CaringDad71
Posts: 410
Joined: Fri Feb 06, 2009 1:24 pm

Re: neuroprotek,

Postby CaringDad71 » Wed Feb 23, 2011 12:39 pm

Oh, and Caring Dad... DS's negative behaviours are WAY down since we started Neuroprotek. he's an undermethylator...


Well, that is some great news! Since you mention that he is an undermethylator, he may be able to benefit from the addition of methyl donors and elevations of dopamine (quercetin inhibits COMT). These can help him. You are right that sometimes a detox reaction can provoke a bad period, but when it passes there usually is progress. If the bad behavior doesn't subside, that child can have an intolerance to a certain supplement. Many reasons exist, however as I mentioned COMT status can be a clue i.e., COMT+ will have a tough time with methyl donors and/or dopamine promoters. Even if a kid is COMT- (undermethylator; like most of the population), the initial addition of something like quercetin (COMT inhibitor; dopamine prolonging) can turn that otherwise COMT- kid into an angry little fellow. I know because that is how my child first reacted to quercetin and she is COMT-(undermethylator, one who benefits from increased dopamine). The supplement will cause an initial fluctuation of dopamine and it is this that causes the mood swings. Over time, this will even out and it should be okay. If not, lowering the dosage should help. However, with the COMT+ kid (a full range can exist of more or less), may be intolerant of even slight amounts of something like quercetin.

The other aspect seems to be the anti-inflammatory effect which is good, since I think that much inflammation exists in these kids.


Great News and Keeping My Fingers Crossed For You!

TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Re: neuroprotek,

Postby TamiW » Fri Feb 25, 2011 11:58 am

Regarding the anger/mood swings, it is valuable to remember that in addition to being anti-inflammatory quercetin is also a catechol o' methyltransferase (COMT) inhibitor (also, it turns out that it is a MAO inhibitor!). This means that by inhibiting this enzyme, dopamine turnover may also be altered. Therefore, the fluctuations in dopamine can cause mood swings. The degree to which mood swings can heat up depends on COMT status. Therefore, if your child is COMT+ (genetic 'overmethylator'; limited tolerance for additional methyl donors) his/her dopamine will be already relatively high. Hence, inhibiting his/her COMT enzyme will cause more dopamine to hang around longer and the result is one peevish child. Conversely, if your child is COMT-(genetic 'undermethylator'; can tolerate additional methyl donors), he/she will generally have a lower dopamine status. This ties into the above theme of histamine because frequently, some (Pfeiffer method) will define methylation status by histamine levels i.e., low whole blood histamine will denote overmethylator, while high whole blood histamine will denote undermethylator. While this biochemical marker can be useful, it is prone to fluctuation because of supplementation e.g., MB12, TMG, 5-MTHFolate and SAM-e can alter methylation status in an individual.

Thanks CaringDad,
INteresting info. My son is an undermethylator, high histamine kid but his dopamine tested very high (course not sure this indicated dopamine turnover or utlization), serotonin very low.
Tami

SleepingUnderStars
Posts: 367
Joined: Tue Jan 26, 2010 7:25 pm

Re: neuroprotek,

Postby SleepingUnderStars » Fri Feb 25, 2011 5:06 pm

An update:

I took my son off Neuroprotek about two and a half weeks ago. He was doing great on it. But I wanted to see if I could notice any of our positives go away, this whole game is so subjective and I feel the need to at least try to test the situation.

He has not been doing as well without it, so I really do feel more objective in saying this is a keeper that i will continue to buy. He definitely seemed more cooperative and calmer on it!

Here goes putting this gross stuff down his throat again, but it seems to really be doing something for us...

slesage
Posts: 516
Joined: Mon Mar 23, 2009 5:51 pm

Re: neuroprotek,

Postby slesage » Fri Feb 25, 2011 9:13 pm

That is great sleeping.. I wanted to give it a try since my boy is a PANDAS child.. 1 pill and within 3 hours was hiding under the table.. really weird.. I will maybe try again, but I don't think this one is for us....

Isn't it crazy how all kids react so differently..

Take Care,
Stacy

Kastania
Posts: 864
Joined: Tue Apr 07, 2009 9:13 am

Re: neuroprotek,

Postby Kastania » Tue May 03, 2011 2:08 pm

For those using Neuroprotek, how are your children doing it? Are you still seeing benefits? Any side-effects?

SleepingUnderStars
Posts: 367
Joined: Tue Jan 26, 2010 7:25 pm

Re: neuroprotek,

Postby SleepingUnderStars » Tue May 03, 2011 6:25 pm

My child did very well on it, calmer and happier.

I have been so overwhelmed with all i need to do and get into him (we are doing AC now) that i haven't had the time to add it back in- but i really meant to do so.

I think i will order a bunch of the disposible syringes because that yellow paste is SO hard to clean out of the syringes. I think that is what I hated most about it!- and having to slice open the contents was such a pain...

SleepingUnderStars
Posts: 367
Joined: Tue Jan 26, 2010 7:25 pm

Re: neuroprotek,

Postby SleepingUnderStars » Sun May 15, 2011 7:02 pm

Restarted Neuroprotek about 5 or so days ago. He is much calmer and cooperative. Why did i stop? It was yucky to take since I had to put in his mouth via syringe. I solved the problem by putting agave nectar in with the capsules! now he doesn't protest so much.

I am going to stay on it since it is very clearly good for him, calmer and focuses better in a few short days!


One thing I feel like complaining about is how much I have to spend every month on biomed that has made a tremendous difference in our life. I wish there were a way to be reimbursed for this. My son has never needed to go to the doctor since starting biomed! Truly! Very healthy and improving! Why can't these costs not be compensated in some way? Ah yes, utopia, the pharma companies and doctors wouldn't get their $. It isn't going to come from this family! :P

mbzoltan
Posts: 261
Joined: Sat Feb 03, 2007 8:11 pm

Re: neuroprotek,

Postby mbzoltan » Sun Dec 11, 2011 12:58 am

Kastania wrote:Has anyone seen any seizure activity with the Neuroprotek or seizure-like activity? Does it reduce the blood-brain barrier? Any other negatives apart from the rash?


I came here looking for this -- to see if others have seen this?

We have eased our son onto Neuroprotek since Nov. 29 (12 days). He is 32 lbs and 27 months old, so 1.5 capsules/day is the full dose. Four days ago we went to 2/3 dose, and yesterday to a full dose.

2 days age he started having what we thought were little mini-temper tantrums, but now they're more like seizures or dystonia. He stops what he's doing, screws up his face, and absolutely screams/chokes like he's in terrible pain. Now he twists his neck and arm in a funny, tic-like way.

We will talk to our doctor about it, but didn't give him his nighttime dose of Neuroprotek in case it's related. It lasts for about an hour-90 minutes, generally an hour or two after a dose.

He has never, EVER done anything like this in his LIFE. It started Thursday. Today he had at least 6 episodes like this in a 90-minute period, then was fine for the next 2 hours -- played well, ate, drank, etc. Went to sleep fine.

We are seeing nice gains otherwise with the combination of mb12 shots, pycnogenol, Omega 3-6-9, E, D, and zinc - every day his preschool teacher says he had a great day, more social, etc. We had a party tonight with 20 people here at our house and he played with other kids, "talked" to them (he makes sounds from his closed mouth), said "hi" (heh) to some kids, etc.

Any thoughts?

Dani
Posts: 2297
Joined: Tue Mar 04, 2008 5:55 am

Re: neuroprotek,

Postby Dani » Thu Jan 05, 2012 3:45 pm

For nearly the past month, we've used the NeuroProtek. I didn't tell any of the therapists about it so that I could see if there was a difference in their feedback. The therapists say she talks more and seems more engaged.
There's been a definite increase in speech and less brain fog. I get sentences now that I've been trying to get her to say for the past two years. She's even started scolding me a few times by saying "don't say that! Don't say "go to sleep." If I asked her what she did several hours earlier in the day, her recollection seems sharper than before - this is huge for her.
The best results are supposed to come after three months, but even a month out, I would put this down as one of the better supplements we've tried. It seems the ingredients in it really work with my child's issues. Quercetin and Rutin which are in NeuroProtek aggravate some kids, but my kid's biomedical profile (undermethylator, high histamines) shows she does better with such supplements.

The neuroprotek doesn't dissolve in liquid, but you can spread it on toast and put whatever butter substitute you use over it which is what I do. There's no taste to it. You could mix it with food too.
I didn't know how strong I could be until I had to be.

michelle
Posts: 153
Joined: Mon Mar 22, 2010 9:50 pm

Re: neuroprotek,

Postby michelle » Thu Jan 05, 2012 3:59 pm

My son has never had seizures, but I was a little concerned that starting this supplement with the quercetin would possibly bring one on. I talked to a representative at the company and she said they have never had a report of seizures and I have seen many great reviews. She also told me that the new on that is suppose to come out 6 months out without the quercetin would require a prescription. Once I try this I will also post what I see.

Dani, what dosage did you start? My son in 3 and 35lbs.

Dani
Posts: 2297
Joined: Tue Mar 04, 2008 5:55 am

Re: neuroprotek,

Postby Dani » Thu Jan 05, 2012 7:13 pm

michelle - My daughter weighs in the low 40s so we use two capsules a day, but we started with one capsule a day to see how it went. I hope it works for your son.
I didn't know how strong I could be until I had to be.

Kastania
Posts: 864
Joined: Tue Apr 07, 2009 9:13 am

Re: neuroprotek,

Postby Kastania » Mon Apr 09, 2012 2:40 pm

We are doing a trial of the new, low-phenol Neuroprotek. It has less Quercetin and Rutin than the original and contains Luteolin as well. My six year old daughter is reacting to it well so far and is initiating more, which is the main benefit we usually see with a decrease in brain inflammation. We are still on a small amount, increasing slowly, but are pleased with what we are seeing so far.

luis
Posts: 257
Joined: Thu Sep 25, 2008 8:42 pm

Re: neuroprotek,

Postby luis » Wed Jan 30, 2013 8:32 pm

Are you guys still at Neuroprotek ?

I have some unopened bottles and I'm thinking of starting it tomorrow.

Best,
Luis

FatherOf2
Posts: 1667
Joined: Mon Mar 11, 2013 1:37 am

Re: neuroprotek,

Postby FatherOf2 » Fri Mar 22, 2013 9:09 am

Can somebody share their experience with Neuroprotek? It seems that there were some positive gains for some. But, are you still using it?

Dani
Posts: 2297
Joined: Tue Mar 04, 2008 5:55 am

Re: neuroprotek,

Postby Dani » Fri Mar 22, 2013 8:08 pm

We stopped because we started several other treatments for inflammation and I wanted to see what those would do. Those treatments have been helpful. Inflammation is a BIG issue for us. As we lower inflammation and oxidative stress, we see improvements. We're still nowhere near recovered, but now I can see some greater hope for language..Today as we were coming home from a shopping trip, she asked me "Are you going to put gas in the car?" as we passed a gas station. I think questions like that are now happening..albeit very slowly and not every day..because we're reducing brain inflammation.

FatherOf2
Posts: 1667
Joined: Mon Mar 11, 2013 1:37 am

Re: neuroprotek,

Postby FatherOf2 » Fri Mar 22, 2013 11:50 pm

Dani wrote:We stopped because we started several other treatments for inflammation and I wanted to see what those would do. Those treatments have been helpful. Inflammation is a BIG issue for us. As we lower inflammation and oxidative stress, we see improvements. We're still nowhere near recovered, but now I can see some greater hope for language..Today as we were coming home from a shopping trip, she asked me "Are you going to put gas in the car?" as we passed a gas station. I think questions like that are now happening..albeit very slowly and not every day..because we're reducing brain inflammation.


Hi Dani! What treatments do you use for inflammation?

Dani
Posts: 2297
Joined: Tue Mar 04, 2008 5:55 am

Re: neuroprotek,

Postby Dani » Sat Mar 23, 2013 7:30 pm

Glutathione in various forms and some prescription anti-inflammatories and a glutamate reduction medication, a script for BH4. Plus, we're hitting methylation hard. My daughter can handle a lot of methyl donors (COMT -/- status). After doing all these, we had normal GSH levels in a lab test. We also do things like astaxanthin which I've found helpful to reducing inflammation.
I didn't know how strong I could be until I had to be.


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