I woke up this morning to discover that my post Memantine: One Week In, http://jackandnatesmom.blogspot.com/2013/06/memantine-one-week-in.html
has become my most frequently read post ever. What this tells me is that parents are desperate for information on the drug and interested in trying it in their children with autism. Unfortunately, the study that we participated in was prematurely (to us) closed because Forest Labs "had enough data". So they screwed the families that had committed to the study and spent countless hours doing assessments, lab work, interviews, and ummm....driving. Not that I'm still bitter or anything.
So here is some info on Namenda I posted right before we started the study:
"Here is some anecdotal info on Namenda. Oh, and I should mention that this study, which is taking place at multiple centers nationwide, just increased it's enrollment from 120 participants to 900- seems it is pretty promising.
http://autismliveshere.com/2012/03/namenda-month/
https://imfar.confex.com/imfar/2012/webprogram/Paper11938.html
Here is the study we are participating in:
http://clinicaltrials.gov/ct2/show/NCT00872898
I am NOT a fan of giving my child drugs. That being said, this year has been very very difficult for both myself and Jack's father to watch. His difficulties in the school setting are almost painful to see, and knowing how smart he is and knowing how much the "noise" is getting in the way of him functioning at the level he is capable of is just awful. I have tried B12, GABA, inositol, DMAE, melatonin and magnesium in terms of natural therapies. I have tried focalin and intuniv in terms of ADHD therapies. Nothing has helped, or at least not significantly. So this is where we are. This is the next step. And at least with the study, he will be closely monitored."
OK, so the first thing that comes to my mind is, wow, they kicked like 700 kids off of this study early???? That is insane. Makes me more angry than I already was.
In terms of Jack on Namenda- I know that one area of interest for this medication is language. I cannot really speak to that with regard to Jack- his language is excellent and has been since he was about a year old. He is hyperverbal if there is such a thing- although quite a bit of it is quoting. Our goal was to work on sensory issues and social issues. It is hard to look at the progress with Jack, as one has to look past his penchant for perseveration, which frankly is really hard to do. To look at social interaction with Jack, one would have to catch him in a moment when he is not busy spouting facts at you about his current area of interest. The fact that this has not changed I guess is one telling piece of information- this drug has definitely not impacted his obsessiveness. AT ALL. The mood swings? It hasn't effected that much- although I will say that when he was removed from the drug at the study cut off, he experienced a period of really labile behavior- so much so that our pediatrician prescribed the medication for us- so far the insurance is covering it.
Social- Jack continues to struggle with this aspect of life. When we are in a calm moment we have definitely noticed that he is better capable of carrying on a back and forth conversation. These are brief moments, but they are there, which is better than in the past. As he gets older (and his peers get older) we are already noticing a decreased tolerance for his constant talking and how shall I say, "information sharing". We are working really hard at redirecting, but I'll be honest, his will is MUCH stronger than ours. He has worn. us. down. I almost fell over laughing the other day when Jack was telling our next door neighbor some fact and then asking him if that was right. Our neighbor said "exactly like that". That is one of the few responses that satisfies Jack and one that John and I have said in unison many a time. Since he has taught us the appropriate responses, clearly he is now moving on to our neighbors.
Attention- He struggles with this the most. Which always intrigues me. How can he be soooo hyperfocused on some things and yet be unable to attend to something as simple as 8 spelling words for more than 30 seconds? He continues to require constant guidance and redirection at school by an aide- we have an upcoming IEP meeting and if there was any suggestion of changing this I would likely pass out. At some point we may have to bite the bullet and try another ADHD medication, but I am terrified after our initial experience. Jack is very sensitive and I just don't see it ending well.
There have been some bright spots- I have seen more empathy from my little boy this year without question. He saw a child in a wheelchair and cried because he couldn't walk. One day I caught him crying in the back seat, and he asked me to change the song. I assumed that the sound was bothering him (sensory)- but when I asked he said "no mom, it's a really sad song". (Pink- Just Give Me A Reason) That is very new. He tells me more about his day now- he tells stories. His day is no longer "in the vault" as it used to be. But here's the thing- it's been a year, right? Who's to say that this isn't development that would have occurred without the namenda? How can I draw any conclusion based on these small changes? The truth is that I really can't.
For us, Namenda is not "the answer". Did we have some baby steps? yes. Was it because of Namenda? I doubt I will ever be able to answer that.
I do want to mention one other thing- which is Nate and his Aricept study. With Nate we ARE looking at language. I would estimate him to be at maybe a 16-18 mo level when it comes to receptive and expressive language. I will have a more exact number after our next NIH visit, which is the second week of April. He will also stop the medication then, and they will continue to monitor his development for the next year, to see if there is any long term increase in REM sleep from this short period of giving the medication, and how it affects his development. (Mommy is really worried about the medication stopping) Now, keep in mind that we are also treating chronic infections in Nate right now, and we have seen marked improvement in his engagement since starting antibiotics and antifungals. That all being said, we have seen an increase in speech with Nate. I can say that definitively. Not only does he have more words, but he also seems to get the concept of repeating. If you ask him to say something, he quite often attempts it. This never happened in the past. He also, for lack of a better way to say it, follows commands more consistently. He claps hands, stomps feet, puts on his coat, goes to the door when I say it is time to go, says bye bye consistently. When we walk to the door, I say "open door" and he says "open". When we get to the car, I tell him "up" and he says "up". If he is ready to leave he says "go" spontaneously. He says "I want", however the item is always "fry inna". No, we don't know. But if we work with him for a few minutes, and makes suggestions he will usually identify which food item he wants (chip, chicken, toast, etc). Which means he also attempts to say these words- chicken is "wicken" which is just so cute. He is more opinionated about say, the programming on tv. Let me rephrase- he throws a fit if he doesn't get what he wants. This is all since about December. I can honestly say that if I had the option to try either namenda or aricept, my choice would be Aricept, hands down.
Here's a little food for thought- these two medications have actually been used synergistically for alzheimer's. http://www.alzheimersreadingroom.com/2009/08/does-combination-of-aricept-and-namenda.html
http://news.frx.com/press-release/rd-news/jama-reports-alzheimers-patients-treated-combination-namendatm-memantine-hcl-a
Interesting, right? So those are my thoughts for now, for what they are worth. It's all anecdotal obviously, but I consider myself to be fairly observant in general, my assessment skills as a nurse are pretty well honed, and well, when it comes to my kiddos, just call me eagle eyes. :-)
has become my most frequently read post ever. What this tells me is that parents are desperate for information on the drug and interested in trying it in their children with autism. Unfortunately, the study that we participated in was prematurely (to us) closed because Forest Labs "had enough data". So they screwed the families that had committed to the study and spent countless hours doing assessments, lab work, interviews, and ummm....driving. Not that I'm still bitter or anything.
So here is some info on Namenda I posted right before we started the study:
"Here is some anecdotal info on Namenda. Oh, and I should mention that this study, which is taking place at multiple centers nationwide, just increased it's enrollment from 120 participants to 900- seems it is pretty promising.
http://autismliveshere.com/2012/03/namenda-month/
https://imfar.confex.com/imfar/2012/webprogram/Paper11938.html
Here is the study we are participating in:
http://clinicaltrials.gov/ct2/show/NCT00872898
I am NOT a fan of giving my child drugs. That being said, this year has been very very difficult for both myself and Jack's father to watch. His difficulties in the school setting are almost painful to see, and knowing how smart he is and knowing how much the "noise" is getting in the way of him functioning at the level he is capable of is just awful. I have tried B12, GABA, inositol, DMAE, melatonin and magnesium in terms of natural therapies. I have tried focalin and intuniv in terms of ADHD therapies. Nothing has helped, or at least not significantly. So this is where we are. This is the next step. And at least with the study, he will be closely monitored."
OK, so the first thing that comes to my mind is, wow, they kicked like 700 kids off of this study early???? That is insane. Makes me more angry than I already was.
In terms of Jack on Namenda- I know that one area of interest for this medication is language. I cannot really speak to that with regard to Jack- his language is excellent and has been since he was about a year old. He is hyperverbal if there is such a thing- although quite a bit of it is quoting. Our goal was to work on sensory issues and social issues. It is hard to look at the progress with Jack, as one has to look past his penchant for perseveration, which frankly is really hard to do. To look at social interaction with Jack, one would have to catch him in a moment when he is not busy spouting facts at you about his current area of interest. The fact that this has not changed I guess is one telling piece of information- this drug has definitely not impacted his obsessiveness. AT ALL. The mood swings? It hasn't effected that much- although I will say that when he was removed from the drug at the study cut off, he experienced a period of really labile behavior- so much so that our pediatrician prescribed the medication for us- so far the insurance is covering it.
Social- Jack continues to struggle with this aspect of life. When we are in a calm moment we have definitely noticed that he is better capable of carrying on a back and forth conversation. These are brief moments, but they are there, which is better than in the past. As he gets older (and his peers get older) we are already noticing a decreased tolerance for his constant talking and how shall I say, "information sharing". We are working really hard at redirecting, but I'll be honest, his will is MUCH stronger than ours. He has worn. us. down. I almost fell over laughing the other day when Jack was telling our next door neighbor some fact and then asking him if that was right. Our neighbor said "exactly like that". That is one of the few responses that satisfies Jack and one that John and I have said in unison many a time. Since he has taught us the appropriate responses, clearly he is now moving on to our neighbors.
Attention- He struggles with this the most. Which always intrigues me. How can he be soooo hyperfocused on some things and yet be unable to attend to something as simple as 8 spelling words for more than 30 seconds? He continues to require constant guidance and redirection at school by an aide- we have an upcoming IEP meeting and if there was any suggestion of changing this I would likely pass out. At some point we may have to bite the bullet and try another ADHD medication, but I am terrified after our initial experience. Jack is very sensitive and I just don't see it ending well.
There have been some bright spots- I have seen more empathy from my little boy this year without question. He saw a child in a wheelchair and cried because he couldn't walk. One day I caught him crying in the back seat, and he asked me to change the song. I assumed that the sound was bothering him (sensory)- but when I asked he said "no mom, it's a really sad song". (Pink- Just Give Me A Reason) That is very new. He tells me more about his day now- he tells stories. His day is no longer "in the vault" as it used to be. But here's the thing- it's been a year, right? Who's to say that this isn't development that would have occurred without the namenda? How can I draw any conclusion based on these small changes? The truth is that I really can't.
For us, Namenda is not "the answer". Did we have some baby steps? yes. Was it because of Namenda? I doubt I will ever be able to answer that.
I do want to mention one other thing- which is Nate and his Aricept study. With Nate we ARE looking at language. I would estimate him to be at maybe a 16-18 mo level when it comes to receptive and expressive language. I will have a more exact number after our next NIH visit, which is the second week of April. He will also stop the medication then, and they will continue to monitor his development for the next year, to see if there is any long term increase in REM sleep from this short period of giving the medication, and how it affects his development. (Mommy is really worried about the medication stopping) Now, keep in mind that we are also treating chronic infections in Nate right now, and we have seen marked improvement in his engagement since starting antibiotics and antifungals. That all being said, we have seen an increase in speech with Nate. I can say that definitively. Not only does he have more words, but he also seems to get the concept of repeating. If you ask him to say something, he quite often attempts it. This never happened in the past. He also, for lack of a better way to say it, follows commands more consistently. He claps hands, stomps feet, puts on his coat, goes to the door when I say it is time to go, says bye bye consistently. When we walk to the door, I say "open door" and he says "open". When we get to the car, I tell him "up" and he says "up". If he is ready to leave he says "go" spontaneously. He says "I want", however the item is always "fry inna". No, we don't know. But if we work with him for a few minutes, and makes suggestions he will usually identify which food item he wants (chip, chicken, toast, etc). Which means he also attempts to say these words- chicken is "wicken" which is just so cute. He is more opinionated about say, the programming on tv. Let me rephrase- he throws a fit if he doesn't get what he wants. This is all since about December. I can honestly say that if I had the option to try either namenda or aricept, my choice would be Aricept, hands down.
Here's a little food for thought- these two medications have actually been used synergistically for alzheimer's. http://www.alzheimersreadingroom.com/2009/08/does-combination-of-aricept-and-namenda.html
http://news.frx.com/press-release/rd-news/jama-reports-alzheimers-patients-treated-combination-namendatm-memantine-hcl-a
Interesting, right? So those are my thoughts for now, for what they are worth. It's all anecdotal obviously, but I consider myself to be fairly observant in general, my assessment skills as a nurse are pretty well honed, and well, when it comes to my kiddos, just call me eagle eyes. :-)
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