Namenda for autism? - Mothering Forums

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#1 of 29 Old 07-23-2009, 06:18 PM - Thread Starter
 
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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!

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#2 of 29 Old 07-23-2009, 07:13 PM
 
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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.

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#3 of 29 Old 07-23-2009, 11:06 PM
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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.
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#4 of 29 Old 07-23-2009, 11:44 PM
 
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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.
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#5 of 29 Old 07-24-2009, 03:29 AM
 
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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.

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#6 of 29 Old 07-24-2009, 11:33 AM - Thread Starter
 
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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.

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#7 of 29 Old 07-24-2009, 12:44 PM
 
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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.

Debbi ~~ Proud mom to an amazing 8 year old DS who has Asperger's Syndrome, a beautiful, novel writing 15 yr old DD, and a handsome, artistic 17 yr old DS.
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#8 of 29 Old 07-24-2009, 06:57 PM
 
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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?
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#9 of 29 Old 07-24-2009, 08:07 PM
 
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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.

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#10 of 29 Old 07-24-2009, 08:15 PM
 
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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.
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#11 of 29 Old 07-24-2009, 10:12 PM
 
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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.

Debbi ~~ Proud mom to an amazing 8 year old DS who has Asperger's Syndrome, a beautiful, novel writing 15 yr old DD, and a handsome, artistic 17 yr old DS.
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#12 of 29 Old 05-18-2010, 12:27 PM
 
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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.
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#13 of 29 Old 10-31-2010, 01:11 AM
 
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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.
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#14 of 29 Old 07-31-2011, 03:12 PM
 
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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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#15 of 29 Old 01-20-2012, 02:45 PM
 
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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
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#16 of 29 Old 03-25-2012, 02:18 PM
 
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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?

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#17 of 29 Old 03-25-2012, 02:19 PM
 
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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?

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#18 of 29 Old 04-05-2012, 03:10 AM
 
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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.

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#19 of 29 Old 04-09-2012, 03:58 PM
 
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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

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#20 of 29 Old 05-21-2012, 10:16 AM
 
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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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#21 of 29 Old 01-12-2014, 08:49 PM
 
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I just started my son, 5, on Namenda about two weeks ago. It was prescribed by a very renowned doctor who is helping us with some issues with our son including language because he is nonverbal. This particular doctor also has a son with autism and has helped a number of well known people with their children. I have seen a significant improvement with my sons behavior and attention span in the last couple of months since we started seeing this particular doctor. We are now trying to concentrate on his language skills hoping that we get some words down the line. I'm a very patient person, but not naive. I have hope but I'm not blind either. So far I haven't seen a change in his language but he does seem to be comprehending better. Today, for example, he wanted a drink (he took me to the fridge and pulled my hand up to the juice container), then I said "you want a drink?" and then I did the sign language for drink. I then said, "where's your cup. go get your cup." Not really expecting him to get it (cause he never has before), but to my surprise he went and got his cup and brought it to me! This is a big deal for me, as we know how it feels when our children do the smallest task without failure. So we'll see if over time (4-6 months or so) if his verbal communication improves as well while on Namenda. I don't believe in staying on something if it doesn't deliver the results, but I guess so far so good.
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#22 of 29 Old 02-23-2014, 11:25 AM
 
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How old is your child? I'm a mother of a 6 year old boy on the autism spectrum - no definite diagnosis after many years...
Looking for advice add I've read others with similar issues. To keep it short, I'm dealing with a non-verbal 47lb child that is not potty trained and becoming increasingly aggressive. His neurologist recently mentioned medication. Respirodal was one she said seemed to show the most help to her other patients. I've never heard of namenda.
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#23 of 29 Old 02-28-2014, 06:21 PM
 
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My son is 5 and I kept him on Namenda for 30 days as called for by his doctor. We are due for another session soon to which I will report that I noticed his comprehension was a little bit better, but still no language. So he is off the Namenda for now until I do some more research and have another consultation with his doctor. We had already talked about putting him on TMG (500mg twice a day), so when I took him off the Namenda, I waited about 4 days then started giving it to him. Actually, what I've noticed, in my opinion, is even better changes with the TMG. He is not talking yet, but he has (at school) started using the potty at least one out of the four times they sit him on it daily. I need to get more consistent at home is probably why I can't get the same results, but at least he's going somewhere! He has always had a pretty good memory, especially with puzzles, but now he is interacting with the TV while watching his favorite show, Super Why. He will even point to the correct words and attempt to sing the song and say some of the letters (in his own way, but I can tell that's what he is trying to do). And he is also very much into playing games on my phone, whereas before he only wanted to watch his YouTube videos on it. So, we'll see what other changes take place over the next couple of months or so. Every child is different, so what works for one may not necessarily work for another. Just make sure to do your research (even if the doctor says to try something), because you'd be wise to want to know the pros and cons of whatever it is you decide to try. And if it's not doing what it claims after a reasonable amount of time, then take him off. There are a number of things that may work, and visa versa.
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#24 of 29 Old 02-28-2014, 06:30 PM
 
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As far as the aggression, ask your doctor about GABA and/or 5HTP. These are mainly used for anxiety and mood swings. They both help to promote calmness.
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#25 of 29 Old 03-09-2014, 10:03 AM
 
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Thought I'd jump in here and mention that our six year old son has been on a track to recovery from ASD (was nonverbal as well), and had good results with Namenda.  We are taking him off of it for a couple weeks to see if there is regression in any areas of gain since he had been on it.  I am not one to jump to use prescription meds unless absolutely convinced it is the right direction.  We have had great results from diet, supplements, therapy and bio med.  Wishing you the best with your son and in putting those puzzle pieces together.  You can do it!  :) 

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#26 of 29 Old 06-04-2014, 08:12 PM
 
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Red face Why not?!

Ok we are trying namenda starting tonight! We have literally tried everything under the sun and so why not try this too! My 8y/o son has...deep breath....adhd,Tourette's,OCD,odd,anxiety,depressi on,and I think PDF-nos or aspergers. He has been hospitalized 3x for rage attacks against me and our family but he never remembers the incidents or he just doesn't "get" natural consequences and his social skills are immature and he is totally impulsive. Poor guy is lucky he can function at all so we keep trying different things to help him. I will keep u posted since I am new here but a lifetime member now, and luck to all of u as this is horrific and debilitating to the entire family

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#27 of 29 Old 06-04-2014, 08:46 PM
 
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<p>Thought I'd jump in here and mention that our six year old son has been on a track to recovery from ASD (was nonverbal as well), and had good results with Namenda.  We are taking him off of it for a couple weeks to see if there is regression in any areas of gain since he had been on it.  I am not one to jump to use prescription meds unless absolutely convinced it is the right direction.  We have had great results from diet, supplements, therapy and bio med.  Wishing you the best with your son and in putting those puzzle pieces together.  You can do it!   </p>
Oh thanks we have had such a terrible time! What supplements do u do? Started fish oil and I do think it helps actually in the rage dept!
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#28 of 29 Old 06-04-2014, 08:51 PM
 
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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.
Normal is just a setting on your dryer! Love this! My new life motto...
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#29 of 29 Old 09-07-2014, 06:39 PM
 
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Smile Namenda

Our Biomedical Dr. started my 5 year old ASD son on Namenda about 4 weeks ago. Our Dr. told us we would see improvements within 4-6 weeks, maybe sooner. So far we have noticed changes in attention span, eye contact and expressive language. The only downfall has been constipation. My little guy has always suffered from bouts of constipation, but he has not had a real BM in 8 days now. When he does go, he does just a little smear in his pull up and the stools smell like moth balls~ Pretty nasty. Giving him Miralax to combat the constipation. Otherwise, we are very happy with the Namenda thus far.
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