Tenex

Discuss autism diets and biomedical treatments of autism.

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Jillh
Posts: 113
Joined: Thu Jan 17, 2013 7:15 pm

Tenex

Postby Jillh » Sun Aug 20, 2017 10:25 pm

Experiences with Tenex? Fatherof2 does your son still take it? I am hitting a wall here:((
My son (9 years old) has autism and last year received an ADHD dx. But his hyperactivity looks more like OCD and anxiety issues. He's compulsive and scripts and stims all day long. We are well versed in the traditional therapies and we are currently in just about all of them and I work really hard each and every day at home. But it's almost as though he physically cannot quiet his body or mind. I hate to constantly be on him for something he doesn't have 100% control of. I am trying to find something that may potentially help him and was curious about Tenex. I would really appreciate any advice. Thanks!

FatherOf2
Posts: 1591
Joined: Mon Mar 11, 2013 1:37 am

Re: Tenex

Postby FatherOf2 » Sun Aug 20, 2017 11:45 pm

My son was on Tennex for about 1 year when he was 5. We gave it to him to reduce irritability and SIBs. It helped a little. It wan't a strong medication to control behaviors (Trileptal is far better). But it definitely reduced hyperactivity without improving focus (so, not really an ADHD drug but more like HD drug). We experimented with different doses and found that just giving 0.5-0.75mg in the evening was enough for the next day. If we gave Tennex in the morning, even 0.25mg, it would make my son tired and sleepy in the afternoon, not wanting to do anything.It lowers the blood pressure, which has to be monitored on a monthly basis. I think Tennex significantly slows the brain down, which is not the effect I would seek. My son still stimmed on it. Tennex is worth trying just to see if your son would react to it better. My son's verbal stims eventually went away on their own, but he still has significant visual stims, which I can't figure out how to reduce. The only time I saw stims gone away is when I tried Namenda for about 1 month. Namenda made my son more social, and instead of talking to himself, talk to other people. No sleepiness. You should consult your doctor to see if Namenda is better than Tennex. I stopped Namenda because after 1 month, when we raised the dose to 20mg/day, it made my son very irritable. I may try Namenda again at small doses 5-10mg/day, which didn't bring irritability.

Thank you for asking. It made me think about what to do next.

Jillh
Posts: 113
Joined: Thu Jan 17, 2013 7:15 pm

Re: Tenex

Postby Jillh » Mon Aug 21, 2017 9:45 am

FatherOf2 wrote:My son was on Tennex for about 1 year when he was 5. We gave it to him to reduce irritability and SIBs. It helped a little. It wan't a strong medication to control behaviors (Trileptal is far better). But it definitely reduced hyperactivity without improving focus (so, not really an ADHD drug but more like HD drug). We experimented with different doses and found that just giving 0.5-0.75mg in the evening was enough for the next day. If we gave Tennex in the morning, even 0.25mg, it would make my son tired and sleepy in the afternoon, not wanting to do anything.It lowers the blood pressure, which has to be monitored on a monthly basis. I think Tennex significantly slows the brain down, which is not the effect I would seek. My son still stimmed on it. Tennex is worth trying just to see if your son would react to it better. My son's verbal stims eventually went away on their own, but he still has significant visual stims, which I can't figure out how to reduce. The only time I saw stims gone away is when I tried Namenda for about 1 month. Namenda made my son more social, and instead of talking to himself, talk to other people. No sleepiness. You should consult your doctor to see if Namenda is better than Tennex. I stopped Namenda because after 1 month, when we raised the dose to 20mg/day, it made my son very irritable. I may try Namenda again at small doses 5-10mg/day, which didn't bring irritability.

Thank you for asking. It made me think about what to do next.


Thanks for your response! I am thinking of speaking with the dr to try to help his anxiety. He scripts the same tv shows all day long and it interferes with school for sure. He loves sameness and has a small set of interests. I hate to constantly redirect him bc I almost feel like he doesn't really want to do it, rather he has to do it. The best way I can describe it is that his mind constantly races and this provides him with an internal "white noise" that calms him. He does it when he's stressed, but also when he having fun. The million dollar question is, is this anxiety, ADHD, OCD or autism driven??? If I had that answer the path would be clearer. It very likley a little bit of everything. I don't want to medicate him. But I am seeing a big spike and it's really effecting the rest of his life. I was leaning towards Buspar to try and hit the anxiety component and hope that the rest would follow suit. Have you had any experience with it?

FatherOf2
Posts: 1591
Joined: Mon Mar 11, 2013 1:37 am

Re: Tenex

Postby FatherOf2 » Mon Aug 21, 2017 10:28 am

Jillh wrote:...He scripts the same tv shows all day long and it interferes with school for sure. He loves sameness and has a small set of interests. I hate to constantly redirect him bc I almost feel like he doesn't really want to do it, rather he has to do it. The best way I can describe it is that his mind constantly races and this provides him with an internal "white noise" that calms him. He does it when he's stressed, but also when he having fun. The million dollar question is, is this anxiety, ADHD, OCD or autism driven???

You are describing my son. I have learned from a psychiatrist that it is not OCD because OCD is all about protecting yourself like if you don't close a door 3 times, something will happen to you or if you don't wash you hands every 5 minutes, the germs will kill you. It is rigidity. Still, regardless how we call these restricted interests, the question is what would help. My other son (fraternal twin brother of the autistic one) is very smart, catches on new concepts fast, understands emotions, and talks about feelings like an adult. But he has similar problems with narrow interests and obsessions. He clearly displays anxiety (can't sing in a choir). So, I don't have to guess here. I suspect that all the behaviors are related and are due to one of two things or both:
1. Lack of serotonin. I call serotonin a "don't care" neurotransmitter. Too little of it, and a person is too emotionally sensitive and fearful. Too much of it, and a person is insensitive (dull emotions).
2. Overactive NMDA due to too much glutamate or other reasons. Interestingly, anxiety can be treated by either raising serotonin or blocking NMDA receptors. A popular NMDA blocker is alcohol. A prescribed NMDA blocker is Namenda.

Because in my son's case, stims didn't go away on low-dose SSRI (Lexapro, 5mg/day), evethough it made him more social, I suspect that the issue here is mostly overactive NMDA receptors. A million dollar question is why they are overactive. Giving Namenda (or alcohol) is not a long term solution. We know what happens from long-term consumption of alcohol: you develop tolerance and need for higher dose, you develop dependency with painful withdrawal symptoms. I am assuming the same will happen with Namenda over long term or any other drug that blocks receptors. Brain will always counteracts blocking by creating more receptors to maintain the signal strength the same. If we can pinpoint the underlying cause of overactive NMDA receptors, we can treat them more successfully.

One interesting fact is that brain inflammation causes two things: (1) reduces serotonin through upregulation of the IDO enzyme, and (2) increases glutamate release as a protective mechanism. But then the question is what causes inflammation because simply giving anti-inflammatory substances is not going fix things long term either. Immune disregulation, allergies, hidden viruses, etc? Anyway, sorry for the long post. To summarize, we need to explore all opportunities to treat this condition, starting with SSRI's and Namenda as quick fixes and going down the road of treating the immune system, allergies and potential viruses as a long term solution.

Jillh
Posts: 113
Joined: Thu Jan 17, 2013 7:15 pm

Re: Tenex

Postby Jillh » Mon Aug 21, 2017 10:49 am

FatherOf2 wrote:
Jillh wrote:...He scripts the same tv shows all day long and it interferes with school for sure. He loves sameness and has a small set of interests. I hate to constantly redirect him bc I almost feel like he doesn't really want to do it, rather he has to do it. The best way I can describe it is that his mind constantly races and this provides him with an internal "white noise" that calms him. He does it when he's stressed, but also when he having fun. The million dollar question is, is this anxiety, ADHD, OCD or autism driven???

You are describing my son. I have learned from a psychiatrist that it is not OCD because OCD is all about protecting yourself like if you don't close a door 3 times, something will happen to you or if you don't wash you hands every 5 minutes, the germs will kill you. It is rigidity. Still, regardless how we call these restricted interests, the question is what would help. My other son (fraternal twin brother of the autistic one) is very smart, catches on new concepts fast, understands emotions, and talks about feelings like an adult. But he has similar problems with narrow interests and obsessions. He clearly displays anxiety (can't sing in a choir). So, I don't have to guess here. I suspect that all the behaviors are related and are due to one of two things or both:
1. Lack of serotonin. I call serotonin a "don't care" neurotransmitter. Too little of it, and a person is too emotionally sensitive and fearful. Too much of it, and a person is insensitive (dull emotions).
2. Overactive NMDA due to too much glutamate or other reasons. Interestingly, anxiety can be treated by either raising serotonin or blocking NMDA receptors. A popular NMDA blocker is alcohol. A prescribed NMDA blocker is Namenda.

Because in my son's case, stims didn't go away on low-dose SSRI (Lexapro, 5mg/day), evethough it made him more social, I suspect that the issue here is mostly overactive NMDA receptors. A million dollar question is why they are overactive. Giving Namenda (or alcohol) is not a long term solution. We know what happens from long-term consumption of alcohol: you develop tolerance and need for higher dose, you develop dependency with painful withdrawal symptoms. I am assuming the same will happen with Namenda over long term or any other drug that blocks receptors. Brain will always counteracts blocking by creating more receptors to maintain the signal strength the same. If we can pinpoint the underlying cause of overactive NMDA receptors, we can treat them more successfully.

One interesting fact is that brain inflammation causes two things: (1) reduces serotonin through upregulation of the IDO enzyme, and (2) increases glutamate release as a protective mechanism. But then the question is what causes inflammation because simply giving anti-inflammatory substances is not going fix things long term either. Immune disregulation, allergies, hidden viruses, etc? Anyway, sorry for the long post. To summarize, we need to explore all opportunities to treat this condition, starting with SSRI's and Namenda as quick fixes and going down the road of treating the immune system, allergies and potential viruses as a long term solution.


Very helpful! My son tried low dose Celexa and we so no change on it and no change when he stopped. So SSRI's aren't helpful for use either. I was reading some of your old posts about Namenda. Do you pulse it or give it consistently? Looks like many experience gains and then a plateau or even regression.

FatherOf2
Posts: 1591
Joined: Mon Mar 11, 2013 1:37 am

Re: Tenex

Postby FatherOf2 » Mon Aug 21, 2017 11:30 am

I gave Namenda for only 2 months. The dose was raised every 2 weeks if I remember it correctly. Once we hit 15mg/day, we started seeing irritability. We reduced the dose to 10mg/day, the irritability reduced. At 5mg, it was gone. We stopped it. Then about 1 month later, thinking that irritability could be unrelated to Namenda, we repeated it and saw exactly the same thing with irritability. So, it wasn't coincidental. We stopped Namenda and never tried it again. I forgot whether Namenda had a short lasting effect or not. We didn't pulse it, however we did try it twice with a gap of of 1 month. One thing for sure, it had a delayed response in my son. I wouldn't see anything for a week after starting or raising a dose, and then a week later I saw a response.

FatherOf2
Posts: 1591
Joined: Mon Mar 11, 2013 1:37 am

Re: Tenex

Postby FatherOf2 » Mon Aug 21, 2017 3:57 pm

I completely forgot one important thing: Namenda agonizes dopamine D2 receptors. Overactivity of these receptors is often viewed as a culprit of schizophrenia, and many anti-psychotic drugs antagonize these receptors (block them). To me, agonizing D2 receptors is a huge negative of Namenda. You can't give it to an autistic child unless you are absolutely sure that you are not dealing with childhood schizophrenia. Increasing D2 activity probably explains why Namenda caused irritability in my son.

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: Tenex

Postby Nikkie111 » Mon Aug 21, 2017 4:16 pm

Jillh wrote:Experiences with Tenex? Fatherof2 does your son still take it? I am hitting a wall here:((
My son (9 years old) has autism and last year received an ADHD dx. But his hyperactivity looks more like OCD and anxiety issues. He's compulsive and scripts and stims all day long. We are well versed in the traditional therapies and we are currently in just about all of them and I work really hard each and every day at home. But it's almost as though he physically cannot quiet his body or mind. I hate to constantly be on him for something he doesn't have 100% control of. I am trying to find something that may potentially help him and was curious about Tenex. I would really appreciate any advice. Thanks!


Out of curiosity have you tried LDN cream?

Some good reports here on hyperactivity etc
https://www.ldnresearchtrust.org/content/ldn-and-autism

Jillh
Posts: 113
Joined: Thu Jan 17, 2013 7:15 pm

Re: Tenex

Postby Jillh » Mon Aug 21, 2017 4:34 pm

Nikkie111 wrote:
Jillh wrote:Experiences with Tenex? Fatherof2 does your son still take it? I am hitting a wall here:((
My son (9 years old) has autism and last year received an ADHD dx. But his hyperactivity looks more like OCD and anxiety issues. He's compulsive and scripts and stims all day long. We are well versed in the traditional therapies and we are currently in just about all of them and I work really hard each and every day at home. But it's almost as though he physically cannot quiet his body or mind. I hate to constantly be on him for something he doesn't have 100% control of. I am trying to find something that may potentially help him and was curious about Tenex. I would really appreciate any advice. Thanks!


Out of curiosity have you tried LDN cream?

Some good reports here on hyperactivity etc
https://www.ldnresearchtrust.org/content/ldn-and-autism


I haven't not. But thank you for the suggestion! I will most definitely look into it. Have you tried it?

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: Tenex

Postby Nikkie111 » Mon Aug 21, 2017 5:26 pm

Jillh wrote:
Nikkie111 wrote:
Jillh wrote:Experiences with Tenex? Fatherof2 does your son still take it? I am hitting a wall here:((
My son (9 years old) has autism and last year received an ADHD dx. But his hyperactivity looks more like OCD and anxiety issues. He's compulsive and scripts and stims all day long. We are well versed in the traditional therapies and we are currently in just about all of them and I work really hard each and every day at home. But it's almost as though he physically cannot quiet his body or mind. I hate to constantly be on him for something he doesn't have 100% control of. I am trying to find something that may potentially help him and was curious about Tenex. I would really appreciate any advice. Thanks!


Out of curiosity have you tried LDN cream?

Some good reports here on hyperactivity etc
https://www.ldnresearchtrust.org/content/ldn-and-autism


I haven't not. But thank you for the suggestion! I will most definitely look into it. Have you tried it?


Yes just started tonight for my little one (my oldest is doing amazing so I'm not messing with him but little one not doing that great)
Will definitely let you know....
Also look maybe at herbal antibacterials , I would bet your kid has maybe gut issues xxx

Jillh
Posts: 113
Joined: Thu Jan 17, 2013 7:15 pm

Re: Tenex

Postby Jillh » Mon Aug 21, 2017 5:54 pm

Nikkie111 wrote:
Jillh wrote:
Nikkie111 wrote:
Out of curiosity have you tried LDN cream?

Some good reports here on hyperactivity etc
https://www.ldnresearchtrust.org/content/ldn-and-autism


I haven't not. But thank you for the suggestion! I will most definitely look into it. Have you tried it?


Yes just started tonight for my little one (my oldest is doing amazing so I'm not messing with him but little one not doing that great)
Will definitely let you know....
Also look maybe at herbal antibacterials , I would bet your kid has maybe gut issues xxx


Good luck! I look forward to hearing how it works out for your son. I've been digging around and it looks promising. Did you get it from Coastal Compounding? Thanks!!:)

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: Tenex

Postby Nikkie111 » Tue Aug 22, 2017 1:47 pm

Jillh wrote:
Nikkie111 wrote:
Jillh wrote:
I haven't not. But thank you for the suggestion! I will most definitely look into it. Have you tried it?


Yes just started tonight for my little one (my oldest is doing amazing so I'm not messing with him but little one not doing that great)
Will definitely let you know....
Also look maybe at herbal antibacterials , I would bet your kid has maybe gut issues xxx


Good luck! I look forward to hearing how it works out for your son. I've been digging around and it looks promising. Did you get it from Coastal Compounding? Thanks!!:)


Yes it's from Coastal... He's bit better today but impossible to believe that it's the LDN so quickly .... Also be woke up many times last night so have to warn you it's a side effect but hopefully doesn't last forever --- will definitely keep you updated x

i-jerry
Posts: 138
Joined: Wed Dec 21, 2016 7:46 pm

Re: Tenex

Postby i-jerry » Tue Aug 22, 2017 4:29 pm

Nikkie111 wrote:
Jillh wrote:
Nikkie111 wrote:
Yes just started tonight for my little one (my oldest is doing amazing so I'm not messing with him but little one not doing that great)
Will definitely let you know....
Also look maybe at herbal antibacterials , I would bet your kid has maybe gut issues xxx


Good luck! I look forward to hearing how it works out for your son. I've been digging around and it looks promising. Did you get it from Coastal Compounding? Thanks!!:)


Yes it's from Coastal... He's bit better today but impossible to believe that it's the LDN so quickly .... Also be woke up many times last night so have to warn you it's a side effect but hopefully doesn't last forever --- will definitely keep you updated x


Hi Nikkie, How much LDN cream have you use on your little boy? We had drop for 3 weeks and up to 2mg so far. He got up around 4 am twice, but the rest of days are good sleep until 8 to 8:30 am.
But i haven't see too much from LDN. He seems no improvement during last and this week but a lot of hyper and bloating, is it happened to your older son? How long takes him receive continuous gains without hyper or other issues from Valtrex?
Thanks a lot, Jerry

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: Tenex

Postby Nikkie111 » Tue Aug 22, 2017 5:38 pm

i-jerry wrote:Hi Nikkie, How much LDN cream have you use on your little boy? We had drop for 3 weeks and up to 2mg so far. He got up around 4 am twice, but the rest of days are good sleep until 8 to 8:30 am.
But i haven't see too much from LDN. He seems no improvement during last and this week but a lot of hyper and bloating, is it happened to your older son? How long takes him receive continuous gains without hyper or other issues from Valtrex?
Thanks a lot, Jerry

I'm only giving 2ml so far and other than the sleep thing he's been ok we don't have hyperness etc but then again I've only done it last night and tonight.... I haven't given it to my oldest at all, I've been using other immune modulators with my oldest... And from valtrex we got proper gains two months in if I remember correctly and only after I upped the dose
There will be loads of yeast and bacteria stirring with valtrex and unless you address those you won't know the true value of antivirals - do you address those? X

Jillh
Posts: 113
Joined: Thu Jan 17, 2013 7:15 pm

Re: Tenex

Postby Jillh » Thu Aug 24, 2017 3:24 pm

Nikkie111 wrote:
i-jerry wrote:Hi Nikkie, How much LDN cream have you use on your little boy? We had drop for 3 weeks and up to 2mg so far. He got up around 4 am twice, but the rest of days are good sleep until 8 to 8:30 am.
But i haven't see too much from LDN. He seems no improvement during last and this week but a lot of hyper and bloating, is it happened to your older son? How long takes him receive continuous gains without hyper or other issues from Valtrex?
Thanks a lot, Jerry

I'm only giving 2ml so far and other than the sleep thing he's been ok we don't have hyperness etc but then again I've only done it last night and tonight.... I haven't given it to my oldest at all, I've been using other immune modulators with my oldest... And from valtrex we got proper gains two months in if I remember correctly and only after I upped the dose
There will be loads of yeast and bacteria stirring with valtrex and unless you address those you won't know the true value of antivirals - do you address those? X



How are things going with your little one? Fingers crossed LDN is proving helpful:))

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: Tenex

Postby Nikkie111 » Fri Aug 25, 2017 3:43 pm

Jillh wrote:
Nikkie111 wrote:
i-jerry wrote:Hi Nikkie, How much LDN cream have you use on your little boy? We had drop for 3 weeks and up to 2mg so far. He got up around 4 am twice, but the rest of days are good sleep until 8 to 8:30 am.
But i haven't see too much from LDN. He seems no improvement during last and this week but a lot of hyper and bloating, is it happened to your older son? How long takes him receive continuous gains without hyper or other issues from Valtrex?
Thanks a lot, Jerry

I'm only giving 2ml so far and other than the sleep thing he's been ok we don't have hyperness etc but then again I've only done it last night and tonight.... I haven't given it to my oldest at all, I've been using other immune modulators with my oldest... And from valtrex we got proper gains two months in if I remember correctly and only after I upped the dose
There will be loads of yeast and bacteria stirring with valtrex and unless you address those you won't know the true value of antivirals - do you address those? X



How are things going with your little one? Fingers crossed LDN is proving helpful:))

Hiya! He's better thank God, the sleep issue from LDN is gone, he's more relaxed (he's on the hyper aide generally) and he started looking at me again .... It could be the combination of removing valtrex and adding natural antivirals but at least he's bit better... We ll see how it goes... It's prob worth trying LDN possibly with combination with something for gut bacterial if yours has any, it's quite cheap so a trial is possibly good idea x

Jillh
Posts: 113
Joined: Thu Jan 17, 2013 7:15 pm

Re: Tenex

Postby Jillh » Sat Aug 26, 2017 6:32 pm

Nikkie111 wrote:
Jillh wrote:
Nikkie111 wrote:I'm only giving 2ml so far and other than the sleep thing he's been ok we don't have hyperness etc but then again I've only done it last night and tonight.... I haven't given it to my oldest at all, I've been using other immune modulators with my oldest... And from valtrex we got proper gains two months in if I remember correctly and only after I upped the dose
There will be loads of yeast and bacteria stirring with valtrex and unless you address those you won't know the true value of antivirals - do you address those? X



How are things going with your little one? Fingers crossed LDN is proving helpful:))

Hiya! He's better thank God, the sleep issue from LDN is gone, he's more relaxed (he's on the hyper aide generally) and he started looking at me again .... It could be the combination of removing valtrex and adding natural antivirals but at least he's bit better... We ll see how it goes... It's prob worth trying LDN possibly with combination with something for gut bacterial if yours has any, it's quite cheap so a trial is possibly good idea x


That's fantastic news!! I'm so glad it seems to be helping! We have a meeting with our doctor this Friday and I'm going to discuss LDN. His gut seems to be under control so we'll continue the probiotics. Hoping it helps calm him and lessen his narrow interests. I'm glad to hear the night time waking didn't last long. I spoke to one parent that said her son gained a lot of weight. So that makes me a bit nervous. But she did say it was rare. I'll update as we go along:) Thanks for all your insight.

Jillh
Posts: 113
Joined: Thu Jan 17, 2013 7:15 pm

Re: Tenex

Postby Jillh » Thu Aug 31, 2017 4:53 pm

Is it recommended that a child be on a GFCF diet prior to starting LDN? My son is not. We tried it a few years ago for about 9 months and didn't see any changes on and no changes when we reintroduced those foods. I was curious because I'm reading varying opinions on this. Thanks!!

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: Tenex

Postby Nikkie111 » Thu Aug 31, 2017 5:46 pm

Jillh wrote:Is it recommended that a child be on a GFCF diet prior to starting LDN? My son is not. We tried it a few years ago for about 9 months and didn't see any changes on and no changes when we reintroduced those foods. I was curious because I'm reading varying opinions on this. Thanks!!

That's an odd one.. I think the general belief is that they must be at a minimum gluten and dairy free for any hope of recovery but a big percentage of us are on stricter diets like SCD. Gluten causes so many issues (from leaky gut to high histamine ) that any positive outcome from any intervention would be overridden by this so maybe try again?

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: Tenex

Postby Nikkie111 » Fri Sep 01, 2017 5:16 am

Also have a look here it says about LDN and gfdf
viewtopic.php?t=6082


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