Saturday 1 June 2013

Memantine: One Week In

I am going to try to do an update on Jack weekly at least during these first few months of the study.  He started memantine a little over a week ago.  When I spoke with the study coordinator and the psychiatrist last week, they said that some kids show immediate improvement and with others they see nothing for a good 6 weeks- and of course all other possible permutations of progress.  Something of note- Jack is under 20kg so he is on the lowest dose.  The highest weight for the lowest dose is 20kg, and he is 19.6kg.  So he may not get the full benefit until he gains another pound (and maintains that weight for 2 consecutive visits) and gets bumped up to the next dose.  Luckily, with his tapeworm like appetite, I am hoping this happens sooner rather than later.

So here is the HUGE relief for me and John- we have not seen sleep disturbances- neither more frequent awakening nor falling asleep in the middle of the day.  Both of these were huge issues when we tried typical ADHD meds, so....phew.  That's not to say that Jack didn't wake up at 3:30 once this week and then wake up in the night several other nights, it's just that this is his "norm".  So no worsening of any of this is a very very good thing.

In terms of progress- do I think I see anything?  Kinda.  I say kinda because anything I may be seeing could be a sign of a "good week" also.  So some consistency will definitely be necessary before I will give memantine any credit.  Here is what I have observed- increased emotional lability.  Totally a double edged sword- I didn't think it was possible for his emotions to escalate any faster than they already do- I was wrong.  We have had a few tantrrums that came on much more quickly and were higher in intensity.  Bad.  However, I have also seen Jack cry tears of sadness- when I talked to him about our family friends who are going through something difficult he cried.  He has told me that I hurt his feelings.  When we correct or punish him he cries more frequently and tells us we're "being mean".  This is new, and I think it shows that he is experiencing more intense emotions and also some more appropriate reactions. 

The other thing that has happened- well I have had several extended conversations with Jack this week.  When I say conversation I mean back and forth, give and take, and NOT about one of his areas of interest.  I mean he told me more about his day at school yesterday than he ever has before.  I mean that when I told him he had OT this morning, he asked who would be with him and expressed disappointment that it would not be Miss Sam.  He has been asking me a multitude of questions about Nate as a baby, himself as a baby, asking where his friends live....nothing concrete, but just different than anything he has showed interest in before. 

And of course the sense of humor is still intact:
The other day he was in our bed first thing in the morning and he started in with "Natey is a baby".  Which he know aggravates me since Nate is of course 3, but behaves somewhat like a baby because of his lack of speech (I'm just a wee bit hypersensitive about this).  So I said, you know what Natey is, what is he?  Jack replied "he's a toddler, and guess what he'll be next?"  I replied, a kid?  He said "no, a quadruplet" and then laughed like a maniac.  So there is another positive- he's still Jack, no doubt about it. 

So I guess we just keep watching....

8 comments:

  1. Any updates on this? can you email me at zafartoor@gmail.com?

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    1. Interesting...the drug they gave to Jack they are now peddling as an alzheimers drug. Very little to be found about Memantine ( Namenda XR) online. Please research this before you give this prescription to your child or aged parent.

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  2. The drug "they" gave to Jack is not being "peddled" as an alzheimers drug, it is an alzeihmer's drug. If you look at the first post I did on this multi- site, national study of the use of the medication in autism, you will see that
    http://jackandnatesmom.blogspot.com/2013/05/d-day.html
    http://jackandnatesmom.blogspot.com/2013/05/a-wild-week.html

    anything I consider with my kids is thoroughly and carefully researched. I am a nurse, and take medication use very seriously. To anonymous, in terms of changes, any in Jack have been pretty subtle, there does seem to be increased focus in school, and better sleep patterns. Hope that helps

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  3. Hi. do you have an update on this trial? My son is 7 with pdd-nos, and is on the lower end of the spectrum. He's non verbal. I just started researching Namenda for autism.

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    1. Hi, I actually updated on this in my post last night- the study was prematurely ended by the drug company bc they got what they neede- nice huh? we didn't see huge changes, but some subtle ones. My other son is in a study at NIH of aricept and we have seen significant improvement- saying bye bye, night night, his brother's name, clapping hands.....will be posting on that soon too. Here is the one on memantine/namenda http://jackandnatesmom.blogspot.com/2014/01/having-rug-pulled-out-from-under-your.html

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  4. Could you explain Jack's joke to me? I have two guesses. One is that Nate was to be four year old soon after that. Second is that he is fourth member of your family. Is either right? Why did Jack call him a quadruplet?

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    1. There was no rhyme or reason I could ever find- but HE thought it was a funny joke for some reason

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    2. Then, maybe he just liked to pronounce this sequence of sounds.

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