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Namenda for autism?

post #1 of 25
Thread Starter 
Does anyone have experience with this medication for their ASD child? My son's neurologist recently suggested it and I would like to hear other parents perspective on it wither good or bad.

TIA!
post #2 of 25
I've read about it in one of my biomed books. I don't have the books in front of me right now but I'll take a look when I go home.
post #3 of 25
This is so interesting! This is an Alzheimer's med, right? I have often wondered if Alzheimer's meds had ever been tried with autism. I look forward to others' replies.
post #4 of 25
it's a glutamate regulator. i think it has the potential to be very effective for the right subgroup of ASD kids. we will be trying it with our son down the road.
post #5 of 25
Ok, I've found the reference I read earlier. It's in Dr. Kenneth Bock's book "Healing The New Childhood Epidemics". He says that Nameda is FDA approved for Alzheimer's and is now being investigated for autism. He also says that although Namenda does not decrease inflammation directly, it may be helpful by acting upon the glutamate receptors on the cell to block the activity of glutamate, an excitatory amino acid that may act syngergistically with inflammatory mediators.
One thing he cautions is that some kids respond really well to Namenda and other have sudden meltdowns in which they become extremely emotional for no reason. The reason he thinks is because Namenda decreases the activity of the neurotransmitter glutamate and some kids are already low in this neurotransmitter. He does say most autistic and ADHD children are high on the neurotransmitter glutamate.

Hope that helps. Let us know if you try it and what results, if any, you have.
post #6 of 25
Thread Starter 
Thank you all for the replies. We're considering trying it out with Jovan, but I want to gather more info first. From the limited info I've been able to find online, it seems that parents have either wonderful success stories or they saw no change except it made their child moody and aggressive. I just wish it was more consistent.
Supposedly Dr. Chez did a double-blind study on Namenda and ASD, but I haven't been able to find it (online).

Anyhow, thanks again.
post #7 of 25
Interesting. I hadn't heard of this med before. DS is currently on Doxepin for anxiety, but I am questioning whether it is still working the way it should. We have an appt with his p-doc this afternoon and I'm going to ask if he has information about it.
post #8 of 25
If it's originally an Alzheimer's med, they obviously didn't test it in pediatric patients. Now I know a LOT of old people have lower kidney/liver function, so maybe that's already been taken into account. But does anyone know how safe it is for kids? What ages is it used for?
post #9 of 25
Doctors in many specialities use medications for "off label" use. If anyone is taking a medication off label I would think they should get routine CBCs to make sure everything is ok. Our DAN doctor orders routine blood work to make sure the kidneys and liver are functioning normally. I don't know what the dosage for Namenda is.

Jaki - I've heard of that study. Dr. Chez did a study on the use of Namenda for epilepsy and autism. Supposedly the results were good but I couldn't pull up the results.
post #10 of 25
a large portion of drugs have off label uses. and many drugs in general, including most seizure meds, don't have written studies regarding pediatric use. but they can still be used safely when under the care of a knowledgeable doctor.

any time you are using a drug, in general, it is prudent to run a regular CBC to monitor liver/kidney function.
post #11 of 25
For what it's worth, DS's p-doc today said he would not prescribe it for DS. He said that it is too far off-label for him to feel comfortable prescribing it and the limited results he's read about were not impressive. That said, this doctor is ultra conservative with meds, both what he prescribes and the dosages for the precribed meds.
post #12 of 25

Namenda is an excess glutamate blocker

I know this thread is almost a year old, but for others looking for Namenda info...we recently started it with a 13yo boy with mood and anxiety issues with known glutamate sensitivity, and it is having a very positive impact. Only side effect so far is constipation. I researched it quite a bit and it seems to be a very low-side effect medication with a lot of possibilities. It also has a very easy starting/stopping profile compared to some medicines (e.g. Lamictal) so in some cases it might be worth a try.

But the biggest impact we have seen (before Namenda) is going on a glutamate restricted diet. If Namenda does help, it's worth considering getting rid of the glutamates that Namenda blocks in the first place.
post #13 of 25

4 months of progress

My little boy with autism has been on Namenda for 4 months now and we have not seen any negative side effects. In fact, we have seen amazing changes! His auditory processing delay is completely gone, when it had been significant. He is very "present" now and understands even social nuances that he was oblivious to before. It's amazing. So far, we are glad we tried this. I wish you and your child the best.
post #14 of 25

I was searching for some miracle medicine for my 9-1/2 yr daughter diagnosed ADHD, Asperger, PDD (NOS) and waht not and what not etc, she also suffers from scoliosis, and has suffered a swear seizure attack precisely a year before and is taking 'Epival' Syrup and 'Login' Tabs.

I found this link  <http://www.whotv.com/news/who-story-namenda-20110203,0,3693920.story>, and I wonder if it is a hoax or what?

I am really desperate to look for some medicine magically treating my daughter and giving us all the family a new life as for now we, my wife and me, are not at all normal.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

post #15 of 25
FYI CBC is a complete blood count looks at blood cells but doesn't tell you about other organ functioning...what you want is a comprehensive metabolic profile
post #16 of 25
Quote:
Originally Posted by vksotack View Post

My little boy with autism has been on Namenda for 4 months now and we have not seen any negative side effects. In fact, we have seen amazing changes! His auditory processing delay is completely gone, when it had been significant. He is very "present" now and understands even social nuances that he was oblivious to before. It's amazing. So far, we are glad we tried this. I wish you and your child the best.


we are considering trying this medicine as per the advice of my sons DAN doctor. how old is your son and is he still on it with success?

post #17 of 25
Quote:
Originally Posted by vksotack View Post

My little boy with autism has been on Namenda for 4 months now and we have not seen any negative side effects. In fact, we have seen amazing changes! His auditory processing delay is completely gone, when it had been significant. He is very "present" now and understands even social nuances that he was oblivious to before. It's amazing. So far, we are glad we tried this. I wish you and your child the best.


we are considering trying this medicine as per the advice of my sons DAN doctor. how old is your son and is he still on it with success?

post #18 of 25

Here is some information on Namenda that our doctor passed along to us since there is not much information out there on the testing on children, hope you can all read it.

 

http://jcn.sagepub.com/content/22/5/574.short

http://anp.sagepub.com/content/44/5/410.full.pdf+html

http://online.liebertpub.com/doi/abs/10.1089/cap.2006.16.517

 

My son has been taking Namenda for a week now, I have not seen any significant change yet but we still have to eliminate two medicines he is on, amantadine and Intuniv.  Intuniv has not been working for him, nor has any stimulant or non-stimulant we have tried in the past.  I will keep you all posted on his progress with Namenda, doc is hopeful  it will help him.

post #19 of 25

You will either find it works or doesn't work-if you try it-ask first and research how long it would take to know if working or not and if there is no improvement-just take him off it. If you are going to try it then don't make any other changes or you wont know if it was the namada or soemthing else that was making the differnce best of luck x

post #20 of 25

Can you tell me how your son reacted to Amantadine?  E's doctor is considering putting him on it.  Was there any improvement?

 

How is your son now doing on Namenda?

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