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For those of you who have children taking Namenda, how did your dr decide that Namenda was necessary? Was it through blood work? Trial and error? MRI?

 

We have an ENT, immunologist, and a psychiatrist/neurologist in our corner who are willing to help and open to all ideas. It seems that the psychiatrist/neurologist would be the most likely place to start, but maybe I am wrong....

 

Please share your stories of how your child came to be taking this med. Thanks....

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Sorry I can't add any direct experience . . . as I recall in terms of forum participants, Melanie is the only one I can specifically recall with a child who took or takes Namenda; her son, Danny, however, is I believe something of a complex case. You might try PM-ing her for some feedback.

 

It's also my impression that use of Namenda in connection with PANDAS/PANs would be an "off-label" use of the drug, though that isn't necessarily a bad thing. Glutamate modulating therapies have proven to be helpful with a number of our kids, including my own. Our psych, however, is disinclined from using some of the newer, less-documented drugs unless those with a longer track record fail to be effective, and we've had luck with other interventions.

 

I'll certainly be interested in your experience if you decide to try Namenda; please keep us posted!

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  • 5 months later...

So we just tried Namenda ... DD18 has high levels of glutamate and our neuro-Lyme doctor recommended it. We are in week 2 and only at 5 mg BID. DD has severe INCREASE in compulsions. Worse than ever. What complicates it is that DD decided to go off her GF diet a few days after starting Namenda. Obviously the best test would be to pull the gluten from her diet and see if the compulsions subside but it is so bad that we decided to do both -- pull the gluten and stop the Namenda. DD has never been able to take psych meds in the past. She is CYP1B1L432V++ (metabolizes meds too fast), MAO++ (unable to break down excitatory genes), and ++ for two GAD1 (anxiety). My bet is on the Namenda being the problem. Once the Namenda is out of her system we will try challenging her again with gluten to see what that does.

 

For those of you who have children taking Namenda, how did your dr decide that Namenda was necessary? Was it through blood work? Trial and error? MRI?

 

We have an ENT, immunologist, and a psychiatrist/neurologist in our corner who are willing to help and open to all ideas. It seems that the psychiatrist/neurologist would be the most likely place to start, but maybe I am wrong....

 

Please share your stories of how your child came to be taking this med. Thanks....

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We have been using Namenda for about a month. I am going to update my charts now, but it might be part of the reason that DS16 is still struggling with OCD. He is going to summer school and going out and about, but lately he has been suffering from anorexia.

 

Restrictive eating has always been a PANS symptom here, but lately he has lost a ton of weight (he's 5'56" and went from 107 in May to 91.8 last Wednesday) and he really had NO appetite. We found that his thyroid may have recovered some functionality and we were probably over medicating him with Synthroid + Thyroid Support. We stopped those last Sunday and he seems hungrier, but now feels awful after he eats. He thinks that eating is increasing his OCD. This morning was he$$, he ate dinner two nights in a row and was shaking when I dropped him off at school.

 

We added the Namenda in June and maybe it's a key to the increased OCD?! The integrative neurologist wants him off anyway, so I think I'll pull it tonight and see what happens.

 

Off to update my chart and look for a trend.

 

T.Anna

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Let me know how you make out, T.Anna. I'm hoping withdrawal won't cause other problems like when we tried Riluzole back in 2008. It caused a sudden onset of vocal and motor tics, even though we titrated down slowly. It took HD IVIg and 12 months to recover from that!

 

I pulled the Namenda today. She was not at full dose and only 10 days into it but I wanted to get it out of her system as quickly as possible. I Googled Namenda and could not find anything about titrating down slowly.

 

I have never seen DD's compulsions so bad as they are right now. Another piece of info I just found out is that DD is positive for Trichothecene Group via RealTime Labs mycotoxin test. Still waiting for the Shoemaker panel to come back.

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My son has been taking 10 mg of Namenda for 3 years now, but he was 16 when he started. It seems to have helped. He was starting to get better when he started taking it. I don't know if it contributed or not. I think it works in conjunction with the SSRI's--not sure about that though. I know there is alot of controversy about SSRI's and PANDAS. DS is on a very low dose of Zoloft too. I think what helped him the most was the T&A, long term abx, 7 ivig's, 5 weeks thereapy at the OCDI and low dose zoloft, namenda and zyprexa. Again, he was older when he started it. If he were younger I think I would have exhausted all the medical treatments first. It's a tough decision.

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For those of you who have children taking Namenda, how did your dr decide that Namenda was necessary? Was it through blood work? Trial and error? MRI?

 

We have an ENT, immunologist, and a psychiatrist/neurologist in our corner who are willing to help and open to all ideas. It seems that the psychiatrist/neurologist would be the most likely place to start, but maybe I am wrong....

 

Please share your stories of how your child came to be taking this med. Thanks....

My son's DAN doctor determined that Namenda should be tried based upon my child's lab results (and my agreeing to give it a try). We used a low dose for the entire duration of the year or so he was on it (1.25mg/day). It helped my son 'come into our world' more and be more present. His teachers noticed and commented to me that he "has had an emergence".

 

We stopped it after a year because that's when other medical issues started cropping up, and I was also worried about the long-term use of a new drug used "off label" in a 4 year old for so long. I'd consider putting him back on it at some point, as it definitely seemed to help him.

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Ok, we added the Namenda back in on Wednesday and so far Thursday and Friday have been better.

 

Hopefully, it will keep working. We also are only doing 1 Neurochondria a day (AM) and so far so good with that too.

 

Wondering how long it will take to get urine test results : /

 

T.Anna

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