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I want to share about what I learned about ADHD tonight: meds and Cogmed


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I went to a presentation by a psychiatrist in our area who is a provider of Cogmed software. She has a dh and dd with ADHD as well and became a Cogmed provider while researching how to help her family.

 

Medication (Be forewarned: this info may concern some people. I'm just the messenger and if your kiddo is on some of the meds mentioned, don't shoot me. I'm only repeating what I heard!)

 

She said there are basically only two kinds of meds; the rest is "packaging/marketing:

 

1. Methylphenidate (Dexmethylphenidate): basically Ritalin related meds: Daytrana, Concerta, Ritalin, Metadate CD, methilyn, Ritalin SR, Focalin, Focalin XR, Ritalin LA

 

2. Amphetamines (Dextroamphetamines) Dexedrine (the generic), Dexedrine spanules, Adderall, Aderall XR, Vyvanse. Dexedrine is the active drug in all these. Adderall and Vyvanse were repatented with additional nonactive drugs. She mentioned that the ability to get a new patent is one motivation for the reformulation and that the inactive part can be the part that causes the side-effects.

 

She said that there have always been warnings on ampehtamines of neurotoxicity in high doses with rodents . Recently (I didn't write down the date, but she might have said this past December) the first study was done on primates, using therapeutic dosages (equivalent to presciption amounts) and that also showed neurotoxicity.

 

She tries to avoid the use of the second class of medications with her patients.

 

(Despite saying there were only two kinds of meds, later she mentioned Strattera as being helpful sometimes with ADD.)

 

She presented a lot of graphs of the curves of when various meds "kick in", when they peak, and how long they are in your system. That was beyond me to follow closely, because I've never had my ds on meds, and there was a whole lot of info. What I did pick up though, was that med increases can actually cause increased "symptoms" of ADHD, and it becomes a negative cycle of "more ADD symptoms" leading to increases which aggravated symptoms, so more increases, etc. One of the issues was what she called "transitioning." She said that what meds do is give a person access to hyperfocus, which she also called "flight or fight" focus: it gives you a narrow, tunnel view and you can focus really well on what's right in front of you, but you lose some ability to "transition" (to stop what you're doing if it isn't high priority right now, or you need to move on to the next thing, etc.) and that ability to transition is like an inverse curve to dosage, so it goes down as the dose goes up. More hyperfocus (on higher dosages) makes it worse and the inability to transition can cause as many or more problems as the ability to focus.

 

Cognitive training

 

There was more research on Cogmed than I realized. I knew about 3 or so double-blind studies on normal folks and ADHD kids by the research team who developed the original protocal. However, here is an additional one that I didn't know about that I find impressive. A guy named Baddeley had years ago developed the model of working memory organization that had long been accepted by the scientific community and that model postulated that working memory could be trained for a specific task, but could not be improved in general. After the first studies by Klingberg came out which challenged that model, his group at the Univ. of York set out to replicate the studies and show that they were wrong. So the researchers' bias was to find that working memory couldn't be improved and to add proof for their own model.

 

In their study, they took students in the bottom 15% of working memory at a school and did the working memory program with them. Here's what the lead researcher said: " We started out from a fairly skeptical basis but our data are very clear: you get major gains with working memory training. In fact, we've found that the majority of these kids go from the deficit range to average or above average range in working memory." (Dr. Gathercole)

 

There are studies that have since been done or are ongoing in several major universities. There is one at Duke U. right now on using this program on kids whose working memories have been damaged by chemotherapy. Klingberg's research was duplicated at Notre Dame by Gibson who found working memory increases in children with ADHD and significantly improved scores on parent and teacher ADHD rating scales. Those are a couple I have in my notes.

 

In her experience, she said she's seen 20-50% improvement in working memory. She says her observation is that the clients that are on the higher end of the improvement are not on meds. (50% of ADHD kids are not on meds--either because parents don't want them or the kids can't tolerate them) .

 

Once the working memory is remediated, then a person needs to learn the skills that they haven't been able to acquire developmentally because of working memory issues: time management, planning, etc.

 

Miscellaneous

Motor control is affected by the same dopamine problem as is working memory, which is why there is a high correlation between ADHD and dysgraphia and other motor skills issues.

 

The working memory subscale on the WISC IV and the Processing Speed subscale overlap. This is because the processing tasks utilize working memory; also because of the dopamine issue affecting motor tasks ( The coding test involved motor skills. If you are slow at writing, you'll have a depressed score.) So processing speed doesn't actually tell you how fast someone thinks--it's contaminated by working memory and motor ability.

 

She explained why, but I didn't get it in my notes, but she recommends Fish Oil to all of her ADHD clients and recommends Nordic Naturals because of the oversight in the country in which it's made. (Eliminates the worry over mercury.) She recommends 1000-2000 mg of DHA/EPA (Combined I think)

 

Untreated, the brain of a person with ADHD will show shrinkage. The constant stress that ADHD causes releases a kind of chronic state of adrenaline and cortisol, and the cortisol kills off brain cells over the long term. So unstress your kids with ADHD! (Medication is one way of doing that as they help the person function so much better, but there are conflicting studies, one of which shows that the longer meds are used, the more the brain shrinks. )

 

If you have questions and I have the answer in my notes, I'd be glad to share more.

Edited by Laurie4b1
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Who is "she".

 

You mention many names in the studies under the Cogmed title, but none under the Medication title. Do you have any names under the medication title that I can cross reference?

 

Strattera is not an amphetamine. It is a norepinephrine reuptake inhibitor.

 

 

asta

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Laurie: I cannot thank you enough for taking the time to share the info you learned from the program you attended!

 

Coincidentally, I have a phone conference today at 5:15pm with the psychologist in a local practice that uses Cogmed. DH and I are encouraged by what we have read, thus far, and are iinterested in exploring further the possibility of Cogmed being helpful for the twins. I had phoned for the consult specifically regarding dd9.5 and intended to wait on her twin brother however, he and I will discuss both children this evening when we have the telecon.

 

Everything you wrote about meds supports what I had also been told by our child psychiatrist when we began down this road three years ago.....and supports what my dd29 (the med student who majored in neuroscience as an undergrad) regarding meds and the desire one should have to possibly stop using them if possible.

 

I also did learn very early on that the lowest dosage is the best place to be (and it has proven true with our twins) and higher dosages tend to exacerbate symptoms.

 

The neurotoxins that are a result of the meds have always been a concern for me and dh, which is one reason why I was so thrilled to begin reading about Cogmed.

 

Honestly, barring the psychologist telling me that it would be a waste of our time (which is not going to happen I am certain), DH and I intend to get dd9.5 started as soon as possible with Cogmed.

 

I will look into Nordic Naturals although we are using fermented cod liver oil, butter oil and skate liver oil from green pastures and are happy with the quality. I can attest that I have noticed an improvement in both children approx 2 weeks after the cod liver oil was added; we began skate liver oil one week ago.

 

Thanks for this very useful information - the info you have provided here and in your previous post has been incredibly helpful to my family.:)

Edited by MariannNOVA
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"She" was the psych.

 

She said the Straterra was an antidepressant. I thought the way I wrote that made it clear that it wasn't either of the two above categories--after she said "Just two", she added antidepressants, which adds up to 3. :) Sorry!

 

She said the rodent warnings have been on the fine print handout in the box of amphetimines for years. The primate study was recent and I didn't take notes on who she said did the primate study. I think she said it just came out Dec 09 but you may be able to google it with "primates amphetimines" ?

 

I will be meeting with her in the next couple weeks to start the Cogmed. If I remember, I'll ask.

Edited by Laurie4b
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Yeah, I know what you mean about adding additional family members. We have 4 of us here who don't meet the criteria for fullblown ADD, but we have traits related to working memory issues.

 

Some of her patients use Cogmed to help with age-related decline in working memory. I can relate to that one for sure, but I'd be the last in our family to sign up.

 

I think it would help dh with some traits of his that result in longer hours at work. Older ds has some ADD traits, too, but has been functional (unlike ds who I originally started pursuing this with who would not be functional as an adult if I extrapolate his working memory issues to the future.) The psych said her ADD dd did Cogmed between taking the SAT the first and second time and her score went up 160 points just from the ability to hold more in her mind longer during the test.

 

She did say that she guessed children would need to repeat the working memory training a couple times as they matured. (They don't have longterm data yet since it's so new.) She is guessing, but that's consistent with a lot of other interventions that need to be "boosted" as kids go through different stages. She thinks it will hold with adults. Again, she's guessing.

 

Thanks for the affirmation on what she said about the meds. I just took it as her opinion, based on her knowledge of them. I have not wanted to do meds but was open to them if necessary. So hearing that others share that opinion is helpful. She says she's trying to get the Vyvanse rep to do Cogmed instead of taking the drug! He challenged her about the neurotoxicity studies and she pulled out the fine print doc from his product and showed him. :)

Edited by Laurie4b
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Yeah, I know what you mean about adding additional family members. We have 4 of us here who don't meet the criteria for fullblown ADD, but we have traits related to working memory issues.

 

Some of her patients use Cogmed to help with age-related decline in working memory. I can relate to that one for sure, but I'd be the last in our family to sign up.

 

I think it would help dh with some traits of his that result in longer hours at work. Older ds has some ADD traits, too, but has been functional (unlike ds who I originally started pursuing this with who would not be functional as an adult if I extrapolate his working memory issues to the future.) The psych said her ADD dd did Cogmed between taking the SAT the first and second time and her score went up 160 points just from the ability to hold more in her mind longer during the test.

 

She did say that she guessed children would need to repeat the working memory training a couple times as they matured. (They don't have longterm data yet since it's so new.) She is guessing, but that's consistent with a lot of other interventions that need to be "boosted" as kids go through different stages. She thinks it will hold with adults. Again, she's guessing.

 

Thanks for the affirmation on what she said about the meds. I just took it as her opinion, based on her knowledge of them. I have not wanted to do meds but was open to them if necessary. So hearing that others share that opinion is helpful. She says she's trying to get the Vyvanse rep to do Cogmed instead of taking the drug! He challenged her about the neurotoxicity studies and she pulled out the fine print doc from his product and showed him. :)

 

The neurotoxicity is an issue that kept me from using meds for the twins for a couple of years - finally, we had to have some peace in our home, and we met with the child psych - three years ago. Vyvanse is one the meds that we have had success with --- in fact, dd has only been on vyvanse and adderall. Ds has been on Focalin, Vyvanse and adderall.

 

I will update regarding my telecon if you are interested. Thanks again for the info.

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"She" was the psych.

 

She said the Straterra was an antidepressant. I thought the way I wrote that made it clear that it wasn't either of the two above categories--after she said "Just two", she added antidepressants, which adds up to 3. :) Sorry!

 

She said the rodent warnings have been on the fine print handout in the box of amphetimines for years. The primate study was recent and I didn't take notes on who she said did the primate study. I think she said it just came out Dec 09 but you may be able to google it with "primates amphetimines" ?

 

I will be meeting with her in the next couple weeks to start the Cogmed. If I remember, I'll ask.

 

No, I realized she was the psych, I was wondering what her name was. This is the field I research. Whenever I come across information such as your post, I get the names of the speakers and the researchers and back track to the original research.

 

It's not a slam against you, it's that people ask me about this stuff all of the time on the site where I work, and I have to be able to physically cite studies. I can't do that without names and journal citations.

 

 

a

 

ps: Strattera is kind of hinky. It can fall into the anti-depressant class since it is a reuptake inhibitor, but since it hits epinephrine directly (even in the form of norephinephrine) it has the effect of a stimulant that is bypassing all of the "gates" so to speak and going right to the source or spot or whatever where it is utilized. That is why it tends to work for people who don't tolerate traditional stimulants.

Edited by asta
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One of the reasons I decided against Cogmed is because our psychologist said that the typical gains are not significant enough to eliminate the "need" for meds. Our dd is not currently on meds because the side effects were not worthwhile even on a very low dose, but some days I wish she was. :D However, she is doing Interactive Metronome, and I think some of the benefits probably overlap with Cogmed. We still might do Cogmed at some point, but for now insurance is covering IM and TLP as part of her OT/ST, so it makes sense to stick with what insurance will cover and keep Cogmed on hold as a possibility for later. Do you know if there is an age at which Cogmed becomes less effective? My dd with ADHD is almost 9, so I'm thinking we still have at least a couple of years.

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One of the reasons I decided against Cogmed is because our psychologist said that the typical gains are not significant enough to eliminate the "need" for meds. Our dd is not currently on meds because the side effects were not worthwhile even on a very low dose, but some days I wish she was. :D However, she is doing Interactive Metronome, and I think some of the benefits probably overlap with Cogmed. We still might do Cogmed at some point, but for now insurance is covering IM and TLP as part of her OT/ST, so it makes sense to stick with what insurance will cover and keep Cogmed on hold as a possibility for later. Do you know if there is an age at which Cogmed becomes less effective? My dd with ADHD is almost 9, so I'm thinking we still have at least a couple of years.

 

If you don't mind my asking (and feel free to pm me if you would prefer) could you tell me if your dd has any other co-morbid issues with her ADHD. I'm curious b/c I know that all we are dealing with is ADHD and doing without meds (and we are on the lowest possible dosage) is not, hmmmmmmmmm, something that we could continue to do.

 

Thanks for what you wrote - one of the questions I will ask the psych tonight regards 'typical gains' - that is one of my concerns - the cost of Cogmed and what if the gains might not be significant enough to come off meds or perhaps split a 10mg pill in half and be good for the day -- I can always hope can't I?;)

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ps: Strattera is kind of hinky. It can fall into the anti-depressant class since it is a reuptake inhibitor, but since it hits epinephrine directly (even in the form of norephinephrine) it has the effect of a stimulant that is bypassing all of the "gates" so to speak and going right to the source or spot or whatever where it is utilized. That is why it tends to work for people who don't tolerate traditional stimulants.[/QUOTE]

 

Just asking your opinion: do you think that this is perhaps why (imo) it doesn't work in those who do tolerate stimulants? just wondering.

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No, I realized she was the psych, I was wondering what her name was. This is the field I research. Whenever I come across information such as your post, I get the names of the speakers and the researchers and back track to the original research.

 

It's not a slam against you, it's that people ask me about this stuff all of the time on the site where I work, and I have to be able to physically cite studies. I can't do that without names and journal citations.

 

 

a

 

ps: Strattera is kind of hinky. It can fall into the anti-depressant class since it is a reuptake inhibitor, but since it hits epinephrine directly (even in the form of norephinephrine) it has the effect of a stimulant that is bypassing all of the "gates" so to speak and going right to the source or spot or whatever where it is utilized. That is why it tends to work for people who don't tolerate traditional stimulants.

 

Since these are my notes and I could have misunderstood this or that, I don't want to associate her name with my understanding of what she said forever on google. ;) If I remember, I'll ask about the primate study though. She did mention that you can find stuff on the investor's part of the website of Shire (the maker of Adderall & Vyvanse) about their marketing strategies that you would probably like to know if you were a consumer. :glare:

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I took a quick look at the Cogmed site and see it discusses improving poor working memory that is a cause of attention problems. Would this only be for, say, someone who did poorly on the working memory portion of the WISC?

 

I'm asking because one of my kiddos seems to have an undiagnosed attention issue but his working memory score is great. It's processing speed that's a problem. (and yet he thinks best when he's moving. there must be something to that.) Anyway, I'm assuming his WM doesn't need improvement, so Cogmed would probably not help him. :confused:

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Cogmed can benefit adults, so I think at age 9 if you finish up IM, you'd have plenty of time to do Cogmed. I look at it as peeling away the layers of the onion. Anything I can do to attack any piece of it will help ds in the longrun. I put off doing Cogmed for a year because I was burned out on "therapies" after doing both OT and vision therapy the year before. I found out about Cogmed as we were doing vision therapy (much more expensive without the research base), but that really burned me out.

 

Did the psych who told you that the gains weren't significant enough to alleviate meds actually administer Cogmed? Curious. This person (and I"m aware that this was a marketing session in which she gave out lots of info so she has an interest in showing Cogmed in a positive light, though I'd already decided to do it prior to the session) said she saw 20-50% gains in working memory. The theory people are working on now is that working memory deficits cause the attention problems, not distraction. So normal people get distracted but have the working memory capacity to remember what they were doing originally; people with working memory deficits don't, so get side-tracked. (That is simplistic.) I think of it as if you have a working memory capacity of 5 items (I think 7 is average) and the environment adds one more, *something* falls off the conveyor belt, giving the appearance of not attending when it is just automatic "deletion" from short term memory.

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Cogmed can benefit adults, so I think at age 9 if you finish up IM, you'd have plenty of time to do Cogmed. I look at it as peeling away the layers of the onion. Anything I can do to attack any piece of it will help ds in the longrun. I put off doing Cogmed for a year because I was burned out on "therapies" after doing both OT and vision therapy the year before. I found out about Cogmed as we were doing vision therapy (much more expensive without the research base), but that really burned me out.

 

Did the psych who told you that the gains weren't significant enough to alleviate meds actually administer Cogmed? Curious. This person (and I"m aware that this was a marketing session in which she gave out lots of info so she has an interest in showing Cogmed in a positive light, though I'd already decided to do it prior to the session) said she saw 20-50% gains in working memory. The theory people are working on now is that working memory deficits cause the attention problems, not distraction. So normal people get distracted but have the working memory capacity to remember what they were doing originally; people with working memory deficits don't, so get side-tracked. (That is simplistic.) I think of it as if you have a working memory capacity of 5 items (I think 7 is average) and the environment adds one more, *something* falls off the conveyor belt, giving the appearance of not attending when it is just automatic "deletion" from short term memory.

 

Simplistic perhaps to use your word, but I think it explains it rather well. I will try to read up more on this prior to my phone call this evening -- what you described above is dd9.5 to a 't.'

 

I'll update after the phone call. Rather interesting that all this is coming up on this board at the same time -- quite helpful.

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If you don't mind my asking (and feel free to pm me if you would prefer) could you tell me if your dd has any other co-morbid issues with her ADHD. I'm curious b/c I know that all we are dealing with is ADHD and doing without meds (and we are on the lowest possible dosage) is not, hmmmmmmmmm, something that we could continue to do.

 

Thanks for what you wrote - one of the questions I will ask the psych tonight regards 'typical gains' - that is one of my concerns - the cost of Cogmed and what if the gains might not be significant enough to come off meds or perhaps split a 10mg pill in half and be good for the day -- I can always hope can't I?;)

 

In addition to ADHD combined type, my dd also has APD, SPD, and dyslexia.

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Cogmed can benefit adults, so I think at age 9 if you finish up IM, you'd have plenty of time to do Cogmed. I look at it as peeling away the layers of the onion. Anything I can do to attack any piece of it will help ds in the longrun. I put off doing Cogmed for a year because I was burned out on "therapies" after doing both OT and vision therapy the year before. I found out about Cogmed as we were doing vision therapy (much more expensive without the research base), but that really burned me out.

 

Did the psych who told you that the gains weren't significant enough to alleviate meds actually administer Cogmed? Curious. This person (and I"m aware that this was a marketing session in which she gave out lots of info so she has an interest in showing Cogmed in a positive light, though I'd already decided to do it prior to the session) said she saw 20-50% gains in working memory. The theory people are working on now is that working memory deficits cause the attention problems, not distraction. So normal people get distracted but have the working memory capacity to remember what they were doing originally; people with working memory deficits don't, so get side-tracked. (That is simplistic.) I think of it as if you have a working memory capacity of 5 items (I think 7 is average) and the environment adds one more, *something* falls off the conveyor belt, giving the appearance of not attending when it is just automatic "deletion" from short term memory.

 

The psychologist who told me that works in an organization that administers Cogmed, but I am not sure whether she personally is one of the administrators. She is the psychologist who did evaluations for two of my kids.

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Thanks. I was wondering about the person's knowledge about Cogmed. Don't want to get our hopes up too high, but every little bit counts.

 

 

Laurie: Have you read the 'working memory' segments on the cogmed website? I just read them and will go back and read them again b4 the 5:15pm phone call - I found them very helpful as to whether or not my twins fit the category that cogmed might benefit.:)

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I had the phone consult with the Cogmed Psychologist from a practice near our home to discuss the possibility and advisability of using Cogmed with the twins - b/g, 9.5yo.

 

He first asked if the twins were diagnosed formally and by whom - I provided that info. He briefly desribed the Cogmed Working Memory Program, and asked me what about the twins' behavior let me to inquire about it.

 

I described what I see when dd is doing math - one of the areas where it is most obvious to me -- she is an excellent student, very bright, GT standardized test scores, but when trying to hold 'numbers' in her head for instance doing a word problem, she becomes frustrated instantly. He and I discussed her response to those types of situations and he explained how the 'executive' function of holding/organizing numbers in one's brain is part of working memory. There are studies to support the fact that working memory deficits result in decreased executive function.

 

I asked if a diagnosis of ADHD was sufficient to assume a specific working memory deficit, and he said that yes, it would be a starting point. He said that while the therapy is ongoing, the 'coach' (not what he called her, but I cannot remember how he referred to her) can look at the exercises that the child is doing and those will give some specifics.

 

He also said that it is about 5-6 weeks after the therapy is completed that changes become apparent in working memory areas: impulse control, executive function, etc.

 

I asked if they are typically able to interview or evaluate a child for 'potential' positive results prior to beginning therapy with Cogmed and he said that no, they are not able to do that.

 

I am awaiting an email from the individual who arranges to meet with the family and instruct them in the use of the software.

 

I learned alot from reading the Cogmed website and following the links to the sections on Working Memory. I do understand how this works in theory.

 

Also, it is not a definite or even necessarily a possibility that a child would be able to go off his/her adhd meds - that would be a determination that would have to be made by the parents and prescribing doctor - I would pay the money just to see if we were able to get closer to that goal.

 

Let me know if you have any questions.

Edited by MariannNOVA
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Thanks for sharing! Yes, I've read the research on the website. I know from ds's WISC-IV IQ test that he has deficits in working memory, so the program is a good match for him. DH & I and kinda "absent minded" son may also do it. The provider gives a steep discount for multiple members of a family.

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Thanks for sharing! Yes, I've read the research on the website. I know from ds's WISC-IV IQ test that he has deficits in working memory, so the program is a good match for him. DH & I and kinda "absent minded" son may also do it. The provider gives a steep discount for multiple members of a family.

 

You're welcome -- yes, we will also receive a discount for the twins.

 

One thing I forgot to mention, I think, is the psychologist discussed with me the difficulty that I have with the twins and their following the SAME.SIMPLE.INSTRUCTIONS.EVERY.SINGLE.MORNING: brush your teeth, get dressed, make your bed. The psych said that children with working memory deficits would probably not be able to get out of bed and remember to do those things on Tuesday, for example, just because you had told them on Monday that they should do those things every single day. And, we spoke about dd's frustration memorizing multiplication tables - dh mentioned that she can memorize long passages of scripture if she and dd11 put it to hand motions. Ds will not become frustrated, he will simply begin staring into space - and I know what he is doing - he is writing songs for his guitar in his head.

 

I am hoping that alot of what I see as 'disobedience' really isn't and perhaps can be positively impacted by the cogmed.

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Just asking your opinion: do you think that this is perhaps why (imo) it doesn't work in those who do tolerate stimulants? just wondering.

 

I wrote a huge response to this last night that got eaten by the server being too busy. I'll try to answer it from memory. Suffice to say, norepinephrine is already naturally in your brain. It comes out of your brainstem and simultaneously crosses across both hemispheres in a type of neural "net" that gets things going (think of a tremendously mild version of "Bane" from Batman). This is significant because your brain normally only works one side at a time (eg: the left lobe controlling the right lobe and vice versa).

 

Strattera (which is synthesized norepinephrine) doesn't cross the blood brain barrier. Again, this is significant, because drugs that do this are considered less likely to mess with "other" things. The reason neurologists don't want epileptics on Strattera is because of this neural "net" thing; the last thing they need when they are trying to control uncontrolled zaps in the brain is an induced zap, kwim?

 

Traditional stims, such as the ones mentioned in the OP, work differently. Firstly, they cross the blood brain barrier. That means that they are able to "get in" to where your actual "stuff" is (like dopamine, serotonin, and norepinephrine). Dextromethamphetamine, for example, (and all of them actually) reverses the "flow" of these hormones in your brain. At very low doses, this isn't such of a problem. After all, it is the increased flow that is causing the problem (ADHD) in the first place. At very HIGH doses, however, that reversal becomes toxic (hello, meth-heads).

 

One of the things to remember is that, when a person has a lifelong condition (bipolar, ADHD, epilepsy) - it is, truly, lifelong. Do lifestyle changes help? Of course. Proper diet, exercise, and behavior modification will ALWAYS help with chronic problems / disease. But they are only one part of the puzzle. Some people have very mild forms that can "get away with" just lifestyle alterations or extra Omega-3s. A huge number of people, however, cannot. For them, living without medications simply is not an option. Are there risks and side effects from these medications? Yes, there are. And sometimes they are quite serious. It comes down to a "what sucks less" equation: life with the medication or life without it.

 

I do not envy any parent who has to make this kind of decision for their child. It must be heart wrenching. It is hard enough to come to terms with being told you have an incurable condition as an adult, much less being told your child has something you can't "cure".

 

I am going to die with my medications or without them. We're all going to die eventually. I have chosen to make my life on this earth less sucky while I'm here. I understand people who choose a different path than I do. I wish ADHD medications (and Risperdal for ASD symptoms, for that matter) had been around when I was a child, as I can see, in retrospect, that my entire childhood experience would have been much, MUCH more palatable.

 

JMO (with some drug facts attached)

 

 

asta

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One thing I forgot to mention, I think, is the psychologist discussed with me the difficulty that I have with the twins and their following the SAME.SIMPLE.INSTRUCTIONS.EVERY.SINGLE.MORNING: brush your teeth, get dressed, make your bed. The psych said that children with working memory deficits would probably not be able to get out of bed and remember to do those things on Tuesday, for example, just because you had told them on Monday that they should do those things every single day. And, we spoke about dd's frustration memorizing multiplication tables - dh mentioned that she can memorize long passages of scripture if she and dd11 put it to hand motions. Ds will not become frustrated, he will simply begin staring into space - and I know what he is doing - he is writing songs for his guitar in his head.

 

I am hoping that alot of what I see as 'disobedience' really isn't and perhaps can be positively impacted by the cogmed.

 

As an aside - my son does not have ADHD - he is ASD. He does not memorize scripture, he memorizes 20 minute bagpipe tunes. But beyond that, he has everything you mention above except for the guitar (he comes up with theories in physics).

 

We deal with it by having a list on the bathroom mirror of "must do AM / PM", and by having a daily schedule that doesn't change. MWF are always the same. TTH are always the same.

 

 

asta

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As an aside - my son does not have ADHD - he is ASD. He does not memorize scripture, he memorizes 20 minute bagpipe tunes. But beyond that, he has everything you mention above except for the guitar (he comes up with theories in physics).

 

We deal with it by having a list on the bathroom mirror of "must do AM / PM", and by having a daily schedule that doesn't change. MWF are always the same. TTH are always the same.

 

 

asta

THANK YOU!!!!!....both incredibly helpful posts that you wrote!!!!! (I've begun copying everything I write that is lengthy prior to hitting 'submit reply' b/c that server message is making me quite unhappy!).

 

The neuroscience post is very helpful - thank you. We tried it here without meds for two years and just used 'we must be the worst parents in the world' as the reason for what we were seeing. The child psychiatrist said he sees ALOT of that.

 

We've made great progress with activity, nutrition, supplements, but right now, clearly adderall is necessary (folks are invited to stop in any morning b4 it begins working and see what I mean :glare:). And I hear you -- I cannot imagine how we would get anything done OR, in the alternative, how they could be sent to a school, without adderall (or whatever the drug du jour is at the time).

 

And thanks for the second post about listing things in prominent places. I think that I am finally THERE.

 

Thanks again for taking the time to explain things --:)

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Does anyone know how Cogmed compares to BrainSkills?

 

 

Not ready to give an answer yet but I began reading about that last night. I am also going to ask the Cogmed individual when she calls me.

 

Right now (and I am sure I am going out on a limb here) my guess is that Cogmed deals very specifically with 'working memory.' Cognitive training that deals specifically with one function is apparently different from general cognitive training that doesn't focus specifically on one function.

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My son could not remember math facts, sequences, or hold a pattern in his head long enough to transfer it onto paper (copying from the board, etc.) Audiblox really helped with all of this and it was very inexpensive.

 

Yes--I haven't seen Audiblox mentioned on the boards in a long while. It got my dyslexic son reading fluently many years ago.

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Brainware does definitely train several cognitive functions. Its research isn't as extensive as Cogmed's, but it is a fraction (1/25) of the price. I definitely saw improvements with working memory for several months after ds 13 did Brainware Safari. I think it is worth trying and I think it also helped ds with visual-spatial processing stuff.

 

I'll be interested to hear what your provider says.

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The OP mentioned that Nordic Naturals were recommended. Does anyone know which ones are better than others? When I go to their site, there are MANY products. Some are Omega 3's, others are combos. Can someone share what has worked... or any suggestions? Also, when looking at the ingredients, most are well under the 1000 mg...?

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One of the things to remember is that, when a person has a lifelong condition (bipolar, ADHD, epilepsy) - it is, truly, lifelong. Do lifestyle changes help? Of course. Proper diet, exercise, and behavior modification will ALWAYS help with chronic problems / disease. But they are only one part of the puzzle. Some people have very mild forms that can "get away with" just lifestyle alterations or extra Omega-3s. A huge number of people, however, cannot. For them, living without medications simply is not an option. Are there risks and side effects from these medications? Yes, there are. And sometimes they are quite serious. It comes down to a "what sucks less" equation: life with the medication or life without it.

 

asta

 

I think this is a good point. I think there is a continuum of ADHD. My dh and I both have traits, but not the fullblown syndrome, as current standards mean it had to cause dysfunction as a child. Oldest ds is similar. Younger ds may or may not be able to get by without meds. We've chipped away at a lot of it through OT (that helped more than anything we've done. Took off the hyperactivity and a lot of the impulsivity), nature time, attending to need for proprioceptive input, etc. We need to get back to fish oil. (I let that lapse). Cogmed may be enough to enable him to function without too much stress with the ADHD.

 

And ADHD does have some good sides!

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The OP mentioned that Nordic Naturals were recommended. Does anyone know which ones are better than others? When I go to their site, there are MANY products. Some are Omega 3's, others are combos. Can someone share what has worked... or any suggestions? Also, when looking at the ingredients, most are well under the 1000 mg...?

 

 

I think this is a good point. I think there is a continuum of ADHD. My dh and I both have traits, but not the fullblown syndrome, as current standards mean it had to cause dysfunction as a child. Oldest ds is similar. Younger ds may or may not be able to get by without meds. We've chipped away at a lot of it through OT (that helped more than anything we've done. Took off the hyperactivity and a lot of the impulsivity), nature time, attending to need for proprioceptive input, etc. We need to get back to fish oil. (I let that lapse). Cogmed may be enough to enable him to function without too much stress with the ADHD.

 

And ADHD does have some good sides!

 

THIS has become a very active thread!

 

We use supplements from www.greenpasture.org All three children take Fermented Cod Liver Oil and Butter Oil (two capsules = 750mg) (two oils in one capsule) AND Fermented Skate Liver Oil (two capsules = 500 mg) (:ack2::ack2:) (one capsule)BTW: THE CAPSULES HAVE NO TASTE AND MY KIDS DON'T BALK AT TAKING THEM AT ALL - IT'S THE IDEA OF SKATE LIVER OIL FOR THE YUCK FACES) -- They take a capsule of each at each meal -- so that would be 2250mg of clo/bo and 1500mg of slo -- a day. Yes, dh and I both see positive results -- in fact, I have noticed this morning, that I am going to cut their adderall back to 5mg from 10mg as it seems to be hyping them up in the a.m. as opposed to calming them down as it had been doing. If this turns out well, then I would be even more convinced that these two supplements are definitely working the way I want them to work.

 

Additionally, I just participated in a Cogmed webinar - the dates and times are posted on their website - in fact, I'm glad they sent me an email reminder or it would have totally slipped my mind --:glare: -- no jokes please.

 

Anyway, I found it to be informative, helpful, the individual presiding was helpful and able to answer everyone's questions. And, one will receive a $100, discount coupon from Cogmed if one participates. I will say (and I don't often say this) the webinar was well worth my time, and I would say that even without the $100. discount.

 

DH and I are now waiting for the coach from the local practice to contact us to set up our first appointment so we can get started.

 

I am encouraged, and the add'l information that has been shared here has been most helpful.

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Not ready to give an answer yet but I began reading about that last night. I am also going to ask the Cogmed individual when she calls me.

 

Right now (and I am sure I am going out on a limb here) my guess is that Cogmed deals very specifically with 'working memory.' Cognitive training that deals specifically with one function is apparently different from general cognitive training that doesn't focus specifically on one function.

 

If anyone is interested, I found some of the original research:

 

Computerized Training of Working Memory in Children With ADHD—A Randomized, Controlled Trial

 

The most interesting part I found, especially since this is supposedly a very expensive program, was this:

Although the training effect remained relatively stable for several months, we expect that it will eventually be necessary with a shorter period of retraining to maintain the effect. However, if WM and executive functions improve by practice, as this study indicates, then we would expect some degree of practice effect also from everyday activities with very high WM loads, such as mathematics and other demanding academic activities. It is theoretically possible that improvement of WM and executive functioning by an intensive training pro- gram would enable the children to perform better and hence to participate more in such WM demanding activities. This would lead to more WM practice in everyday life, and the children would enter a positive feedback loop that would reduce the need for retraining with a training program.

 

Looks great, right? Now, re-read it with an eye for medicalese:

 

Although the training effect remained relatively stable for several months, we expect that it will eventually be necessary with a shorter period of retraining to maintain the effect. However, if WM and executive functions improve by practice, as this study indicates, then we would expect some degree of practice effect also from everyday activities with very high WM loads, such as mathematics and other demanding academic activities.

 

Um, DUH! You mean, if I give my kid highly demanding work every. single. day. in a methodical fashion, then I will be duplicating your highly funded research for your incredibly expensive program? Thanks for telling me that!

 

It is theoretically possible that improvement of WM and executive functioning by an intensive training program would enable the children to perform better and hence to participate more in such WM demanding activities. This would lead to more WM practice in everyday life, and the children would enter a positive feedback loop that would reduce the need for retraining with a training program.

 

Believe me - I'm not here to step on anyone's Twinkies. I read stuff like this every day. It sickens me sometimes how well it is written to couch the "maybe" "could" "might" "theoretically" etc. within the hope that we all grasp for.

 

It also sickens me that drug companies pay huge honorariums to doctors and therapists to present their medications and therapies at "conferences" that are honestly no more than glorified versions of an ex-cheerleader drug rep showing up at a doctor's office to drop off samples of Zyprexa.

 

/rant

 

 

asta

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For the record, this wasn't posted by me:

 

Originally Posted by asta

 

I think this is a good point. I think there is a continuum of ADHD. My dh and I both have traits, but not the fullblown syndrome, as current standards mean it had to cause dysfunction as a child. Oldest ds is similar. Younger ds may or may not be able to get by without meds. We've chipped away at a lot of it through OT (that helped more than anything we've done. Took off the hyperactivity and a lot of the impulsivity), nature time, attending to need for proprioceptive input, etc. We need to get back to fish oil. (I let that lapse). Cogmed may be enough to enable him to function without too much stress with the ADHD.

 

And ADHD does have some good sides!

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Does anyone know how Cogmed compares to BrainSkills?

 

On the Cogmed webinar, someone posed a question about another program: Lumosity and about BrainSkills. This is basically the answer that was given:

 

While the Cogmed rep cannot/will not comment on other programs, she will stand by the fact that Cogmed addresses Working Memory specifically and Cogmed has the double blind study to support their studies.

 

Not specifically addressing Lumosity, Brainskills, or other programs, she did say that she does not believe that there are double blind studies involving those programs AND, more importantly, one might find that other programs 'train' inhibitory control which is not the same as correcting working memory deficit.

 

I am just passing along what she said -- I have not looked at anything other than Cogmed.

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I'm not going to try and quote b/c with all the cutting and pasting that has gone on, I cannot get the quote thing to do what I want....anyway......

 

I just wanted to include that the cost of the program ($1500 per individual) includes 100 hours of training that can be done at the individual's discretion after the program is completed (the program itself is 5 hours a week for 5 weeks). The 100 hours can be done or ignored depending on what the individual and the coach have discussed.

 

I cut and pasted this from Asta's post: Um, DUH! You mean, if I give my kid highly demanding work every. single. day. in a methodical fashion, then I will be duplicating your highly funded research for your incredibly expensive program? Thanks for telling me that!

 

I am not being snarky and I certainly do not want to start an argument or debate or anything that becomes unpleasant b/c I value the information you have provided here, but I do give my kids highly demanding work every. single. day. in a methodical fashion. We hit the same brick walls every day, and I have tweaked, and examined what we are doing, and we still hit the same brick walls.

 

I am intrigued by Cogmed's stating that their program 'specifically' trains working memory -- that's why I will probably move ahead with it.

 

I agree with you about the 'would,' 'maybe,' 'might,' language,' but I am still fairly certain I am going to go forward with this.

 

And, I also agree with you about the drug rep thing -- I come from a family of doctors and chemists who work with pharmaceutical companies (I am clearly the underachiever in the family) -- I certainly knew that Tuesday at a certain family member's office was 'free lunch day.' Drug reps put out lunch spreads that were nicer than some weddings I had attended.:glare:

 

And, incredibly expensive is a relative thing.

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Originally Posted by MariannNOVA viewpost.gif

One of the things to remember is that, when a person has a lifelong condition (bipolar, ADHD, epilepsy) - it is, truly, lifelong. Do lifestyle changes help? Of course. Proper diet, exercise, and behavior modification will ALWAYS help with chronic problems / disease. But they are only one part of the puzzle. Some people have very mild forms that can "get away with" just lifestyle alterations or extra Omega-3s. A huge number of people, however, cannot. For them, living without medications simply is not an option. Are there risks and side effects from these medications? Yes, there are. And sometimes they are quite serious. It comes down to a "what sucks less" equation: life with the medication or life without it.

 

The red italic quote wasn't posted by me and it is not my quote. Just want to clear that up.

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Asta said:

Um, DUH! You mean, if I give my kid highly demanding work every. single. day. in a methodical fashion, then I will be duplicating your highly funded research for your incredibly expensive program? Thanks for telling me that!

 

Not to beat a dead horse or anything but this is exactly what Audiblox does and the whole program cost only around $150. I, too, demanded what I thought was methodical work every day but it seems like things did not stick regardless of how many times I went back and retaught. I know others can relate when I say I was incredibly frustrated that my son could not master simple arithmetic after several YEARS. Nothing stuck until we did Audiblox which worked on sequencing, short term and long term memory, pattern recognition, among other things.

 

I am just throwing it out again because sometimes more $$ does not mean something will be better.

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Asta said:

Um, DUH! You mean, if I give my kid highly demanding work every. single. day. in a methodical fashion, then I will be duplicating your highly funded research for your incredibly expensive program? Thanks for telling me that!

 

Not to beat a dead horse or anything but this is exactly what Audiblox does and the whole program cost only around $150. I, too, demanded what I thought was methodical work every day but it seems like things did not stick regardless of how many times I went back and retaught. I know others can relate when I say I was incredibly frustrated that my son could not master simple arithmetic after several YEARS. Nothing stuck until we did Audiblox which worked on sequencing, short term and long term memory, pattern recognition, among other things.

 

I am just throwing it out again because sometimes more $$ does not mean something will be better.

 

Thanks for sharing - point well made -- Audioblox is one I have not looked into, but I certainly will now.:)

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The OP mentioned that Nordic Naturals were recommended. Does anyone know which ones are better than others? When I go to their site, there are MANY products. Some are Omega 3's, others are combos. Can someone share what has worked... or any suggestions? Also, when looking at the ingredients, most are well under the 1000 mg...?

 

I know--confused me too!

She recommended them because Norway supervises production of supplements and the US doesn't, so you can know that their processes eliminate heavy metals and other contaminants. She didn't recommend a certain ratio of EPA to DHA( are those the right initials?) I think her recommendation was based solely on product purity. She recommended that brand in the overall context of recommending "pharmaceutical grade." In the US, the certification by an outside lab is voluntary, but some companies do it.

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nevergiveup and Kai,

 

Can you two (and anyone else who knows) elabortate on Audiblox, please. There are different programs for different problems that they sell (the way I understand it). Which specific program did you use with success? Any background on your child's situation and how it specifically improved and after how long would be great...plus anything else you want to add!!! Thanks!!

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I learned of Green Pasture from someone on this board - they meet criteria to be a Weston A. Price http://www.westonaprice.org/ recommended provider. If you are not familiar with WAP, I highly recommend the website.

 

 

We use supplements from www.greenpasture.org All three children take Fermented Cod Liver Oil and Butter Oil (two capsules = 750mg) (two oils in one capsule) AND Fermented Skate Liver Oil (two capsules = 500 mg) (:ack2::ack2:) (one capsule)BTW: THE CAPSULES HAVE NO TASTE AND MY KIDS DON'T BALK AT TAKING THEM AT ALL - IT'S THE IDEA OF SKATE LIVER OIL FOR THE YUCK FACES) -- They take a capsule of each at each meal -- so that would be 2250mg of clo/bo and 1500mg of slo -- a day. Yes, dh and I both see positive results -- in fact, I have noticed this morning, that I am going to cut their adderall back to 5mg from 10mg as it seems to be hyping them up in the a.m. as opposed to calming them down as it had been doing. If this turns out well, then I would be even more convinced that these two supplements are definitely working the way I want them to work.

 

HTH -- PS - Green Pasture ferments their cod liver oil and skate liver oil - fermentation is a powerful process and, imo, promotes efficacy in a product.

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Asta said:

Um, DUH! You mean, if I give my kid highly demanding work every. single. day. in a methodical fashion, then I will be duplicating your highly funded research for your incredibly expensive program? Thanks for telling me that!

 

Not to beat a dead horse or anything but this is exactly what Audiblox does and the whole program cost only around $150. I, too, demanded what I thought was methodical work every day but it seems like things did not stick regardless of how many times I went back and retaught. I know others can relate when I say I was incredibly frustrated that my son could not master simple arithmetic after several YEARS. Nothing stuck until we did Audiblox which worked on sequencing, short term and long term memory, pattern recognition, among other things.

 

I am just throwing it out again because sometimes more $$ does not mean something will be better.

 

This was kinda sorta my point.

 

 

a

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Originally Posted by MariannNOVA viewpost.gif

One of the things to remember is that, when a person has a lifelong condition (bipolar, ADHD, epilepsy) - it is, truly, lifelong. Do lifestyle changes help? Of course. Proper diet, exercise, and behavior modification will ALWAYS help with chronic problems / disease. But they are only one part of the puzzle. Some people have very mild forms that can "get away with" just lifestyle alterations or extra Omega-3s. A huge number of people, however, cannot. For them, living without medications simply is not an option. Are there risks and side effects from these medications? Yes, there are. And sometimes they are quite serious. It comes down to a "what sucks less" equation: life with the medication or life without it.

 

The red italic quote wasn't posted by me and it is not my quote. Just want to clear that up.

 

Yes, that was weird. I quoted Asta and it came out as you with a little thingee above it as Asta. I have no idea if I did something or if something got caught in the "busy server" and spit out funny! Very weird, however it happened!

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Yes, that was weird. I quoted Asta and it came out as you with a little thingee above it as Asta. I have no idea if I did something or if something got caught in the "busy server" and spit out funny! Very weird, however it happened!

 

I was picturing Lucy and Ethel on the candy assembly line - :lol:. And if I DO picture that, I tend to become less irritated at the 'busy server.' :D

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  • 2 months later...
Guest tware
No, I realized she was the psych, I was wondering what her name was. This is the field I research. Whenever I come across information such as your post, I get the names of the speakers and the researchers and back track to the original research.

 

It's not a slam against you, it's that people ask me about this stuff all of the time on the site where I work, and I have to be able to physically cite studies. I can't do that without names and journal citations.

 

 

a

 

ps: Strattera is kind of hinky. It can fall into the anti-depressant class since it is a reuptake inhibitor, but since it hits epinephrine directly (even in the form of norephinephrine) it has the effect of a stimulant that is bypassing all of the "gates" so to speak and going right to the source or spot or whatever where it is utilized. That is why it tends to work for people who don't tolerate traditional stimulants.

 

 

 

Apologies for inadvertently eavesdropping. I am always researching something and literally tripped over this thread while researching a Cogmed related topic. I am very glad that Laurie took the time to share information from one of my talks. I have no idea if anyone is still subscribed to the thread but the request for a reference definitely deserves a response.

 

 

Amphetamine treatment similar to that used in the treatment of adult attention-deficit/hyperactivity disorder damages dopaminergic nerve endings in the striatum of adult nonhuman primates.

 

 

 

Ricaurte GA, Mechan AO, Yuan J, Hatzidimitriou G, Xie T, Mayne AH, McCann UD.

 

 

 

J Pharmacol Exp Ther. 2005 Oct;315(1):91-8. Epub 2005 Jul 13.

 

 

Two quotes from the paper:

 

“Here we demonstrate that amphetamine treatment, similar to that used clinically for adult ADHD, damages dopaminergic nerve endings in the striatum of adult nonhuman primates.â€

 

“Furthermore, plasma concentrations of amphetamine associated with dopaminergic neurotoxicity in nonhuman primates are on the order of those reported in young patients receiving amphetamine for the management of ADHD.â€

 

 

 

 

 

 

 

This appears to be limited to the amphetamines. The study used Adderall. As the active ingredient is the same, it is presumably true for any of the amphetamines including Vyvanse.

 

The FDA does not require a warning for permanent damage on the ritalin meds.

 

 

Oh and the Karolinska group did actually answer the "why doesn't it help to just give more challenging work" question this past December. It was the final piece in the puzzle for those of us raising kids with ADHD and feeling like we are beating our collective heads against the wall.

 

The short version is that the genetic variants responsible for ADHD usually impact the dopamine transporter. When the DT doesn't work right, that area of the brain is unable to build normal working memory capacity under everyday circumstances - even challenging ones. The kids basically don't make maturational gains in working memory. Without adequate working memory they fall further behind and are seriously impaired with regard to higher level executive functioning. Cogmed Working Memory Training is like a mack truck pushing whatever capacity the children or adults do have until it is significantly improved.

 

Refererence for the answer:

 

Neurosci Lett. 2009 Dec 25;467(2):117-20. Epub 2009 Oct 9.

Working memory plasticity modulated by dopamine transporter genotype.

Brehmer Y, Westerberg H, Bellander M, Fürth D, Karlsson S, Bäckman L.

Aging Research Center, Karolinska Institute, Stockholm, Sweden. Yvonne.Brehmer@ki.se

 

Tracy A Ware, MD

 

PS - Laurie - I don't know if you are still out there, but I am happy to explain the curves again. Just send me an email or call my voicemail.

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Dr. Ware,

 

Thank you very much for taking the time to answer my question.

 

I realize that I come across brashly on message boards, but it is primarily out of frustration from the lack of clear information and a plethora of misinformation.

 

I have read of so many children hurt by quack "cures" pursued by desperate parents that I am immediately skeptical of (pretty much) anything w/o solid research (vs "testimonials") to back it up.

 

v/r

 

a

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This would be my question for this study:

 

Neurosci Lett. 2009 Dec 25;467(2):117-20. Epub 2009 Oct 9.

Working memory plasticity modulated by dopamine transporter genotype.

 

A group of younger adults received 4 weeks of computerized adaptive training on several WM tasks. All participants improved their performance as a function of training. However, DAT1 9/10-repeat carriers showed larger training-related gains than DAT1 10-repeat carriers in visuospatial WM. By contrast, the two groups were indistinguishable in baseline WM performance as well as in a variety of tasks assessing different cognitive abilities. This pattern of results provides novel evidence that WM plasticity is a more sensitive indicator of DAT1 gene-related cognitive differences than single-assessment performance scores.

 

(Given that I cannot access the article, only the abstract.)

 

A non-9/10 repeat carrier will have a lower training-related gain in visualspatial WM? At what point does a 10-repeat carrier plateau out?

 

If both groups have indistinguishable baseline WM performance, how much higher does the 10-repeat carrier rise/gain vs the 9/10 repeat carrier?

 

IOW, would it not be prudent to determine if a child was a 9/10 repeat carrier prior to starting the program?

 

JMO

 

 

a

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