Namenda response

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FatherOf2
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Namenda response

Postby FatherOf2 » Wed Mar 26, 2014 11:13 pm

We started Namenda at 2.5mg 2x/day and increased the dose to 5mg 2x/day two weeks later. We saw a very good response to Namenda in the first 3-4 weeks: ds became more social, more aware, using complex sentences, calling "mom" and his brother by name, much less stimming. But almost all of that is gone now, at 5 weeks. I am wrecking my brain trying to undersatnd what is happening. We started Iron at 60mg/day middle last week, then reduced it to 45mg, and then to 30mg in the last two days. May be I am seeing Iron taking away all the gains. Or may be Namenda stopped working. Has anybody else had this kind of response to Namenda (first improvement and then regression)? Galantamine seems to wear off too for us, after 2-3 weeks. It seems that my son's brain is fighting any changes in receptor activity. But when Namenda and Galantamine are in their full potency stages, my son is almost like normal.

healingmum007
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Re: Namenda response

Postby healingmum007 » Thu Mar 27, 2014 9:22 am

We have this with Namenda too.. The dr said that with namenda there is a sweet spot, you give too llittle or too much and you miss that spot. Can you raise it another 2.5 mg? We are on 15 mg now for a 15kg 4.5 yr old

FatherOf2
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Re: Namenda response

Postby FatherOf2 » Thu Mar 27, 2014 9:49 am

Thanks, healingmum007. Increasing Namenda to 15mg/day is also recommended by our DAN dr. Did the improvements stick with the 15mg dose? How long have you been giving Namenda to your child? Can you share what changes have you noticed?

healingmum007
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Re: Namenda response

Postby healingmum007 » Thu Mar 27, 2014 10:28 am

We started Namenda in Sept 2013. Our daughter is non-verbal so that side of things havent improved. However, in terms of cognition and attention we do see an improvement.

The gains stick, but progress is very slow.

I think the key is to go up slowly.

FatherOf2
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Re: Namenda response

Postby FatherOf2 » Fri Mar 28, 2014 11:14 pm

We increased the dose to 15mg/day yesterday and already see more social behavior. DS also plays with toys more appropriately, including imaginative play like putting a teddy bear on a potty and saying "Teddy wants to pe-pe". An interesting fact: alcohol is also an uncompetitive NMDA blocker just like Namenda (http://en.wikipedia.org/wiki/NMDA_receptor_antagonist). Let's see if the improvements stick this time.

FatherOf2
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Re: Namenda response

Postby FatherOf2 » Mon Apr 07, 2014 12:42 pm

Unfortunately, improvements from increasing Namenda to 15mg/day lasted only 4 days. The past week was pretty much the same as before Namenda except potty-trained to pee but not poop. It seems that my son reacts to Namenda similarly to Galantamine: 1-2 weeks of improvements followed by a regression to a pre-med baseline. Why would my son's body resist so much to any changes? I don't hear other kids reacting to these meds the same way as my son, all seems to benefit from Namenda and the improvements stick.

healingmum007
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Re: Namenda response

Postby healingmum007 » Tue Apr 08, 2014 3:43 am

On some forums I have seen many kids having the same response as your child. Even with ours, we see a few days of wows and then it all plateaus again.

I am not 100% sure what the test for glutamate excitocity is.. is it quinolic in OAT?

Who is your doctor?

FatherOf2
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Re: Namenda response

Postby FatherOf2 » Tue Apr 08, 2014 9:47 am

healingmum007 wrote:On some forums I have seen many kids having the same response as your child. Even with ours, we see a few days of wows and then it all plateaus again.

I am not 100% sure what the test for glutamate excitocity is.. is it quinolic in OAT?

Who is your doctor?

It's good to know that my son is not the only one. I talked to another doctor who said that this kind of response indicates that the dose is too small. Namenda definitely was working in the right direction for my son when it did (calming down NMDA receptors, causing more speech and social behavior), but increasing its dose above 15mg for a 5yo child is an unexplored territory. I suspect that my son's SHANK2 mutation may have something to do with his condition. Fragile X is also a result of overactive glutamate receptors. Perhaps trying some of Fragile X new drugs could be an option.

luis
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Re: Namenda response

Postby luis » Tue Apr 08, 2014 10:37 am

NAC helps block glutamate. Mg protects nerves from excess glutamatergic activity.

FatherOf2
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Re: Namenda response

Postby FatherOf2 » Tue Apr 08, 2014 10:50 am

luis wrote:NAC helps block glutamate. Mg protects nerves from excess glutamatergic activity.

We tried NAC for one day and it caused increased hyperactivity. I would like to try it again, but I am scared of my son's sensitivity to sulfur drugs (DMSA and DMPS caused increased irritability that lasted for 2 months). I may try NAC during this summer break again. Mg never did anything good or bad for us, even at horse doses 400mg/day.

luis
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Re: Namenda response

Postby luis » Tue Apr 08, 2014 3:18 pm

FatherOf2 wrote:
luis wrote:NAC helps block glutamate. Mg protects nerves from excess glutamatergic activity.

We tried NAC for one day and it caused increased hyperactivity. I would like to try it again, but I am scared of my son's sensitivity to sulfur drugs (DMSA and DMPS caused increased irritability that lasted for 2 months). I may try NAC during this summer break again. Mg never did anything good or bad for us, even at horse doses 400mg/day.


Mg has low absorption. Recently there has been produced Mg Threonate, which has been proved (in publicized studies) to have greater absorption. We've been using it, no wows, no side effects.

Another drug (Baclofen) is helpful to control glutamate crisis.

(We had the same reaction with Namenda. This is frequent with my son, not only with Namenda: a great start effect, and then it gets back to baseline.)

FatherOf2
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Re: Namenda response

Postby FatherOf2 » Tue Apr 08, 2014 3:39 pm

We used Mg Threonate for more than 6 months. Nothing! Hair test shows Mg at 260 while the normal range is 12-30. Recent Mg blood levels are at 2.1 while the normal range is 1.8-2.3. So, we have a lot of Mg and zero effect. We haven't been taking any Mg for the past 2 months and we don't see any issues. Interestingly, besides temporary gains in social, play and behavior, Namenda also reduced stimming a lot (especially echolalia) and this gain stuck. Although we started Tenex before Namenda, which helped to calm down overall.

This phrase from wikipedia may be the key to explaining the temporary response to namenda:
"Alpha-7 nAChR upregulates quickly in response to antagonism, which could explain the cognitive-enhancing effects of chronic memantine treatment."

What if NMDA receptors are first suppressed by Namenda, which results in initial gains, but then the brain upregulates them back to normal, which leads to regression? Perhaps a larger dose of Namenda can overcome the brain's ability to fight against it.

alexsdad
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Re: Namenda response

Postby alexsdad » Tue Apr 08, 2014 6:12 pm

FatherOf2 - I admire you for your tireless efforts to find the right treatments for your son. Honestly, don't we see this kind of outcome all the time with our trials? Great start followed by regressing back to the baseline. Makes you wonder what you could have done differently but you can't seem to figure out. I wonder we see this kind of outcome with a drug that helps with the symptoms but doesn't treat the core problem. Like Tylenol can make you feel better temporarily but it won't last.

I've seen the same response with Namenda on my son. (except that the sweet spot was lower at 1.5mg per day for my son) We tested various doses and finally decided to pull it. Our DAN wanted to go up as high as 15mg but my son was completely out of mind soon after he passed 5mg and I didn't want to torture him any more. I had to make that call not his DAN. I would be careful to try higher doses. Namenda a serious drug.

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

Re: Namenda response

Postby FatherOf2 » Tue Apr 08, 2014 6:25 pm

alexsdad wrote:FatherOf2 - I admire you for your tireless efforts to find the right treatments for your son. Honestly, don't we see this kind of outcome all the time with our trials? Great start followed by regressing back to the baseline. Makes you wonder what you could have done differently but you can't seem to figure out. I wonder we see this kind of outcome with a drug that helps with the symptoms but doesn't treat the core problem. Like Tylenol can make you feel better temporarily but it won't last.

I've seen the same response with Namenda on my son. (except that the sweet spot was lower at 1.5mg per day for my son) We tested various doses and finally decided to pull it. Our DAN wanted to go up as high as 15mg but my son was completely out of mind soon after he passed 5mg and I didn't want to torture him any more. I had to make that call not his DAN. I would be careful to try higher doses. Namenda a serious drug.

I am like one of the two frogs in a bucket of milk:
"Two frogs fell into a bucket of milk. Both tried to jump to freedom, but the sides of the bucket were steep and no foundation was to be had on the surface of the liquid. Seeing little chance of escape, the first frog soon despaired and stopped jumping. After a short while he sunk to the bottom of the bucket and drowned. The second frog also saw no likelihood of success, but he never stopped trying. Even though each jump seemed to reach the same inadequate height, he kept on struggling. Eventually, his persistent efforts churned some milk into butter. From the now hardened surface of the milk, he managed to leap out of the bucket.
The moral of this story: Those who don't give up and persevere may be in for a pleasant surprise!"

There is also this interesting version of this moral story: http://www.moralstories.org/two-frogs/

luis
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Re: Namenda response

Postby luis » Tue Apr 08, 2014 8:42 pm

I liked your story, Fo2. I'm jumping in the bucket of milk for 12 years. And won't give up so soon.

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

Re: Namenda response

Postby alexsdad » Wed Apr 09, 2014 2:03 am

Nice story. Running out of ideas is scary and it is hard to keep up motivation. Hope we are getting close to the answers.

basal1999
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Re: Namenda response

Postby basal1999 » Thu Apr 10, 2014 10:19 am

healingmum007 wrote: Even with ours, we see a few days of wows and then it all plateaus again.



us too!!

i don't understand alot of these theories about pathways though. i've driven myself crazy trying to understand when the bottom line is to just try and see how your kid is affected.

sometimes i think whatever i give stimulates jason some how and he pays more attention for a while and then just gets used to it and goes back to his baseline.

then there are the supps that are "wow" but he's up all night..or crazy for days..

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

Re: Namenda response

Postby luis » Thu Apr 10, 2014 11:01 am

Since English is not my first language, I think that I won't be able to express what I feel about this "WOW-back to baseline" routine.
I'll try, though.
I think that some supplements and drugs affect other substances in our organism. For example, ALA causes Thiamine depletion. So, in the first days of High dose ALA, we had a great response, but then the thiamine reserves were so reduced that all the gains disappeared.
So, we started supplementing Thiamine, with good initial results. BUT,... After a few days the gains subsided again. Then, after some thinking, I guess that I've figured out what was the issue, this time: my son has the CBS+ mutation. So, sulfur supplements like ALA and Thiamine causes a drain in the wrong direction on the methylation cycle, forming ammonia.
So, I've started zeolite again, along with an old bottle of Ammonia RNA (Yasko), to reduce ammonia.
And today we are on a WOW day of this routine, but I'm just waiting to see what comes next, to take us back to baseline. :(

This has been our routine in 12 years of biomedical treatment. (And I don't have a DAN doctor, or whatever they are called now, available in my country.)

basal1999
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Joined: Wed Sep 01, 2010 7:18 pm

Re: Namenda response

Postby basal1999 » Thu Apr 10, 2014 1:01 pm

well english is my only language and i still cant explain/write to save my life:) you couldn't be more clear!

that's the thing when i try to figure out "why" my head spins.

but for instance paxil slight positives, no wow's with no negatives but then back to baseline.

Irinka
Posts: 13
Joined: Sun Sep 23, 2012 9:54 pm

Re: Namenda response

Postby Irinka » Thu Apr 17, 2014 11:14 am

Hi,

In the beginning when we started Namenda my son had a great response, he was also acting like a normal child and I couldn't believe the progress he was making, teachers at school were commenting on how aware and social he was. However, 2 month down the road all his gains were gone and he was back to his previous self. Increasing the dose didn't help.
This was always the case with him, with homeopathy or any new biomed treatments, nice gains in the beginning that made us think that he could recover and then regression.
He is currently taking Galantamine and I am slowly increasing the dosage. We see some gains but nothing to compare on what he had when he started Namenda.


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