Child with ADHD-- if you decided not to medicate, why?

[Anonymous]

My dd is in 3rd grade. She was diagnosed in 2nd, but we suspected in first grade that she had ADHD. So far, we have had a lot of supports in school. We recently went from a 504 to an IEP. This change, which I thought was so beneficial for her, is actually really hard on her self esteem. She wants to stay in the regular class room, but her IEP calls for pull outs for language arts and math. Last night, she was crying because the regular class has no spelling this week, but she has to because she goes to the resource room.

I am finally at the place where we are going to take a look at meds. The school is going through monumental efforts to assist my dd. However, her teacher said that she was off task 63% of the time. That can't be a good thing. We are going to try meds for the end of 3rd grade and hopefully hit a good med without too much trial and error, but not sure how that will go.

[Anonymous]

Anonymous wrote:There is a very robust trial published in the scientific journal Pediatrics that compared outcomes of young kids with ADHD in 3 arms: 1) treatment alone, 2) treatment and behavioral modifications/therapy, 3) behavior alone. They found that treatment by far was the greatest cause of successful outcomes. In the arm of the study that combined it with behavioral therapy, they found that the behavioral interventions were also very helpful IF your child had other comorbidities such as anxiety, etc... But for ADHD, medication alone made the measurable difference.

I think it makes sense to be slow and deliberate about this decision, especially because about a third of kids mature out of the diagnosis as adults. However, I also know many adults who went I diagnosed and looking back it clearly had a major impact on their grades and subsequent life choices. If medication will help, that's a very good thing (unless side effects are too great). There are many things our kids are exposed to daily that we don't know the exact long term side effects of.

It's already curious to learn who funded such 'successful' medication studies.

Like they say, "Follow the money."

[Anonymous]

Anonymous wrote:

Anonymous wrote:There is a very robust trial published in the scientific journal Pediatrics that compared outcomes of young kids with ADHD in 3 arms: 1) treatment alone, 2) treatment and behavioral modifications/therapy, 3) behavior alone. They found that treatment by far was the greatest cause of successful outcomes. In the arm of the study that combined it with behavioral therapy, they found that the behavioral interventions were also very helpful IF your child had other comorbidities such as anxiety, etc... But for ADHD, medication alone made the measurable difference.

I think it makes sense to be slow and deliberate about this decision, especially because about a third of kids mature out of the diagnosis as adults. However, I also know many adults who went I diagnosed and looking back it clearly had a major impact on their grades and subsequent life choices. If medication will help, that's a very good thing (unless side effects are too great). There are many things our kids are exposed to daily that we don't know the exact long term side effects of.

It's already curious to learn who funded such 'successful' medication studies.

Like they say, "Follow the money."

*always, not already

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There is a very robust trial published in the scientific journal Pediatrics that compared outcomes of young kids with ADHD in 3 arms: 1) treatment alone, 2) treatment and behavioral modifications/therapy, 3) behavior alone. They found that treatment by far was the greatest cause of successful outcomes. In the arm of the study that combined it with behavioral therapy, they found that the behavioral interventions were also very helpful IF your child had other comorbidities such as anxiety, etc... But for ADHD, medication alone made the measurable difference.

I think it makes sense to be slow and deliberate about this decision, especially because about a third of kids mature out of the diagnosis as adults. However, I also know many adults who went I diagnosed and looking back it clearly had a major impact on their grades and subsequent life choices. If medication will help, that's a very good thing (unless side effects are too great). There are many things our kids are exposed to daily that we don't know the exact long term side effects of.

It's already curious to learn who funded such 'successful' medication studies.

Like they say, "Follow the money."

*always, not already

OP here- I worked at a university and the standard is that a researcher may have *no* financial interest in a company if they are administering human trials and negligible interest without human trials. In my opinion, I would consider the integrity of the research scientists before looking at where the money comes from. Unless the research is done "in house" of course. Then, it's conceivable that the company could apply pressure to achieve a favorable result.

[Anonymous]

My son had terrible side effects from 2 different drugs (became manic, abusive, violent, could not sleep with out sleeping pills, very thin, lost his personality and would not go outside, only wanted to be inside) he was 8.

I took him off after 1 year, we are working on using exercise, low carb/ high protein diet, consequences to manage it at this point.

He is now 12, we'll see about re introducing medication in a year or 2, if jr high becomes overwhelming.

[Anonymous]

Anonymous wrote:My son had terrible side effects from 2 different drugs (became manic, abusive, violent, could not sleep with out sleeping pills, very thin, lost his personality and would not go outside, only wanted to be inside) he was 8.

I took him off after 1 year, we are working on using exercise, low carb/ high protein diet, consequences to manage it at this point.

He is now 12, we'll see about re introducing medication in a year or 2, if jr high becomes overwhelming.

OP here-- I'm sorry that your son and your family went through that ordeal. It would break my heart to see my little boy suffer like that. Hopefully, there will be a more suitable medication for your boy if you decide to go that route.

[Anonymous]

I have two kids now in high school, both diagnosed with ADHD in elementary. We decided not to medicate because we didn’t feel the benefits were worth the risks, IN OUR SITUATION. I do believe that stimulant medications have risks and research has not shown that the benefits are clear over the long run. Again, this was our situation because our kids responded well enough to other interventions. They aren’t straight A students or even close (and I doubt they would be on meds) and they do struggle with concentration and getting assignments done but they have also had to learn some really good strategies to cope.

A couple of the studies that influenced our decision:
Medication: The smart-pill oversell. Evidence is mounting that medication for ADHD doesn’t make a lasting difference to schoolwork or achievement
http://www.nature.com/news/medication-the-smart-pill-oversell-1.14701



Large NIH longitudinal study found little benefit long term
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063150/
From the conclusions:
“Thus, although the MTA data provided strong support for the acute reduction of symptoms with intensive medication management, these long-term follow-up data fail to provide support for long-term advantage of medication treatment beyond two years for the majority of children—at least as medication is monitored in community settings. Decisions about starting, continuing, and stopping medication may have to be made on an individualized basis, avoiding untested assumptions about continuing benefit, and using periodic trial discontinuations to check for need and benefit.”

[Anonymous]

PP 10:46 here. One factor in our decision to medicate our 1st child was our long conversations with my SIL, who raised a teen w/ ADHD. We have seen the boy struggle through the young elementary age. I remember working on a simple reading assignment and he was just not comprehending the simple text that he read. I blamed the school, even the parents, secretly wondered if he could just be a bit dim -- I just could not understand it. He changed schools, and I assumed he was going to be doing better. But no, things were still hard for him. He also had feeding issues -- only white food, no veggies, no unprocessed anything -- and at this point I was firmly blaming my SIL for letting this silliness take root.

When DD tested on the ADHD scale, I finally got the whole story from them. They had a diagnstic early on bt fought, against meds until 5th grade, when they saw that he was really not getting any better. He started meds, was put on an IEP, started to get tutoring and is doing better. The food issue remains, and will be his cross to carry in life. Because of this, he fluctuates between obese and only overweight. He is better able to attend to academics, and is now starting college next year. He has a good understanding of his issues, but that does not mean compliance necessarily. My SIL is constantly worried about depression and has mandated that his college should be within short driving distance from home, and close to others in the family. Untreated ADHD does have profound effects, OP. Power to you if you can ensure your child manages things without meds, but know when to intervene.

Seeing the effect of ADHD on my own children, I am now understanding that the early years of education will not come back. DD is still struggling with focus in the classroom and needs to spend extra time organizing in her mind whatever was taught in school. She had to un-learn to be ignored in the classroom. She still needs verbal markers to extract important information. Active listening is what we're working on right now. With DS, I am watching like an eagle, to make sure he is able to learn *in the classroom*, not as a 1:1 session with me at home. As long as he can tell me the essence of what they learned, I'm not worried, even if I know he's the designated "runner" that always gets off his seat.

Someone posted that they are ok accepting their children for who they are, and that's ok. But the "inatentive" ADHD usually means that these kids learn to be "absent" and withdraw in their brain for long hours at a time. They learn to be systematically ignored in the classroom. Thay are often mocked by teachers and children alike. And often they end up struggling with depression. That is not an outcome I can accept. Zany -- ok, even encouraged. Lonely and depressed -- absolutely not.

[Anonymous]

Anonymous wrote:
I have two kids now in high school, both diagnosed with ADHD in elementary. We decided not to medicate because we didn’t feel the benefits were worth the risks, IN OUR SITUATION. I do believe that stimulant medications have risks and research has not shown that the benefits are clear over the long run. Again, this was our situation because our kids responded well enough to other interventions. They aren’t straight A students or even close (and I doubt they would be on meds) and they do struggle with concentration and getting assignments done but they have also had to learn some really good strategies to cope.

A couple of the studies that influenced our decision:
Medication: The smart-pill oversell. Evidence is mounting that medication for ADHD doesn’t make a lasting difference to schoolwork or achievement
http://www.nature.com/news/medication-the-smart-pill-oversell-1.14701



Large NIH longitudinal study found little benefit long term
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063150/
From the conclusions:
“Thus, although the MTA data provided strong support for the acute reduction of symptoms with intensive medication management, these long-term follow-up data fail to provide support for long-term advantage of medication treatment beyond two years for the majority of children—at least as medication is monitored in community settings. Decisions about starting, continuing, and stopping medication may have to be made on an individualized basis, avoiding untested assumptions about continuing benefit, and using periodic trial discontinuations to check for need and benefit.”

If you read the long term NIH study closely, it doesn't say exactly what you are saying. Their stats are complicated but essentially it is saying that initial improvements observed from treatments were sustained, but that ultimate outcomes were much more strongly predicted by other factors, one of which was the child's strength of symptom reduction from treatment. Also intensity of treatment beyond the initial trial period played a role in outcomes. Basically, this study was focused on how a one time intervention for a shorter duration of time (14 months or so) played out years later. This was not comparing continued, sustained treatments over a long period of time.

I am also the poster who mentioned the initial study that found medication to be highly effective in symptom reduction. I am a researcher at the NIH and that study was not one that was biased by funding in any way. Very difficult to publish in Pediatrics if there are concerns over financial interests!

[Anonymous]

Anonymous wrote:We don't medicate our D because there's a history of addiction, including alcoholism, in our family. I didn't want to run the risk of having my child become dependent on medications and I was concerned that ADD medication might be a gateway to other types of medication.

Honestly, we have just accepted that our child is not likely to be a strongly academic person. She has fantastic people skills, a summer job that she loves, a rich history of volunteer and service work and she can pull B's and the occasional A in subjects that she is passionate about. She got into a decent college -- with scholarships -- and is planning on a career that doesn't involve a desk. She'd like to be a wedding planner, do something with hotels or the travel industry, possibly be a flight attendant.

We also have some ASD in our family and I feel passionately that there are lots of variants in human behavior and that everyone doesn't need to look alike. My son meets the criteria for HFA, as did my dad, and I probably do as well. I think it's pointless to try to fix people who aren't broken, just different. Mostly I'm interested in accepting my daughter and everyone who doesn't fit the norm for behavior and function. We are more than just cogs in the US productivity machine.

interesting -- history of alcoholism is one reason why we medicate. I found lots of indications that kids with untreated ADHD are more likely to self-medicate/self-stimulate with alcohol, drugs, and risky behavior.

Not criticizing you, ust interested that we came to such different conclusions.

[Anonymous]

Anonymous wrote:

Anonymous wrote:
I have two kids now in high school, both diagnosed with ADHD in elementary. We decided not to medicate because we didn’t feel the benefits were worth the risks, IN OUR SITUATION. I do believe that stimulant medications have risks and research has not shown that the benefits are clear over the long run. Again, this was our situation because our kids responded well enough to other interventions. They aren’t straight A students or even close (and I doubt they would be on meds) and they do struggle with concentration and getting assignments done but they have also had to learn some really good strategies to cope.

A couple of the studies that influenced our decision:
Medication: The smart-pill oversell. Evidence is mounting that medication for ADHD doesn’t make a lasting difference to schoolwork or achievement
http://www.nature.com/news/medication-the-smart-pill-oversell-1.14701



Large NIH longitudinal study found little benefit long term
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063150/
From the conclusions:
“Thus, although the MTA data provided strong support for the acute reduction of symptoms with intensive medication management, these long-term follow-up data fail to provide support for long-term advantage of medication treatment beyond two years for the majority of children—at least as medication is monitored in community settings. Decisions about starting, continuing, and stopping medication may have to be made on an individualized basis, avoiding untested assumptions about continuing benefit, and using periodic trial discontinuations to check for need and benefit.”

If you read the long term NIH study closely, it doesn't say exactly what you are saying. Their stats are complicated but essentially it is saying that initial improvements observed from treatments were sustained, but that ultimate outcomes were much more strongly predicted by other factors, one of which was the child's strength of symptom reduction from treatment. Also intensity of treatment beyond the initial trial period played a role in outcomes. Basically, this study was focused on how a one time intervention for a shorter duration of time (14 months or so) played out years later. This was not comparing continued, sustained treatments over a long period of time.

I am also the poster who mentioned the initial study that found medication to be highly effective in symptom reduction. I am a researcher at the NIH and that study was not one that was biased by funding in any way. Very difficult to publish in Pediatrics if there are concerns over financial interests!

OP here- thanks for posting studies. There are a lot of studies, varying levels of quality and rigor, and conflicting outcomes-- part of the reason I asked this question. I will read the two posted- I have a lot of respect for NiH research. It's my first stop when something seems too good to be true. PP thanks for clarifying the portion of the NIH study. These aren't easy studies to wade through without a stats background.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

It's already curious to learn who funded such 'successful' medication studies.

Like they say, "Follow the money."

Then show us the evidence instead of postulating a conspiracy theory.

[Anonymous]

Evidence (And first of all, these are all from the same NIH cohort study!):

http://www.ncbi.nlm.nih.gov/m/pubmed/15060224/?i=53&from=pediatrics%20adhd%20treatment%20medication%20therapy&filters=RandomizedControlledTrial

More info in a q&a format:

http://www.nimh.nih.gov/funding/clinical-trials-for-researchers/practical/mta/the-multimodal-treatment-of-attention-deficit-hyperactivity-disorder-study-mta-questions-and-answers.shtml

This one shows that those in that study who stopped medication use deteriorated the most. Again, we are all talking about the same study as it was a cohort study led and followed by NIH (but many articles at various time points were published from it):

http://www.ncbi.nlm.nih.gov/m/pubmed/15060225/?i=52&from=pediatrics%20adhd%20treatment%20medication%20therapy&filters=RandomizedControlledTrial

Another study for those concerned about growth on meds:

http://www.ncbi.nlm.nih.gov/m/pubmed/25180281/?i=9&from=pediatrics%20adhd%20treatment%20medication%20therapy

[Anonymous]

Anonymous wrote:My child is newly diagnosed. He's eight and in the second grade. Medication is a difficult decision for us and after reading the thread about how particular children benefitted from meds, I am interested to hear another point of view. Also, if this goes sideways, I want to say that I respect parents' who are doing their best for their kids, period.

That said, cogent statements on why you didn't opt for medication for your school age children? What did you do instead that was effective?

I've read most of the articles in the syllabus for this course, and a common theme seems to be the need to sequence treatments properly, and to monitor the benefits (or lack thereof) of each treatment. For some kids it makes sense to try behavioral therapy, neurofeedback or diet first. If those don't work, then you try meds. For some kids it's the reverse.
http://sharpbrains.com/may-2015-course-how-to-navigate-conventional-and-complementary-adhd-treatments-for-healthy-brain-development/

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
I have two kids now in high school, both diagnosed with ADHD in elementary. We decided not to medicate because we didn’t feel the benefits were worth the risks, IN OUR SITUATION. I do believe that stimulant medications have risks and research has not shown that the benefits are clear over the long run. Again, this was our situation because our kids responded well enough to other interventions. They aren’t straight A students or even close (and I doubt they would be on meds) and they do struggle with concentration and getting assignments done but they have also had to learn some really good strategies to cope.

A couple of the studies that influenced our decision:
Medication: The smart-pill oversell. Evidence is mounting that medication for ADHD doesn’t make a lasting difference to schoolwork or achievement
http://www.nature.com/news/medication-the-smart-pill-oversell-1.14701



Large NIH longitudinal study found little benefit long term
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063150/
From the conclusions:
“Thus, although the MTA data provided strong support for the acute reduction of symptoms with intensive medication management, these long-term follow-up data fail to provide support for long-term advantage of medication treatment beyond two years for the majority of children—at least as medication is monitored in community settings. Decisions about starting, continuing, and stopping medication may have to be made on an individualized basis, avoiding untested assumptions about continuing benefit, and using periodic trial discontinuations to check for need and benefit.”

If you read the long term NIH study closely, it doesn't say exactly what you are saying. Their stats are complicated but essentially it is saying that initial improvements observed from treatments were sustained, but that ultimate outcomes were much more strongly predicted by other factors, one of which was the child's strength of symptom reduction from treatment. Also intensity of treatment beyond the initial trial period played a role in outcomes. Basically, this study was focused on how a one time intervention for a shorter duration of time (14 months or so) played out years later. This was not comparing continued, sustained treatments over a long period of time.

I am also the poster who mentioned the initial study that found medication to be highly effective in symptom reduction. I am a researcher at the NIH and that study was not one that was biased by funding in any way. Very difficult to publish in Pediatrics if there are concerns over financial interests!

OP here- thanks for posting studies. There are a lot of studies, varying levels of quality and rigor, and conflicting outcomes-- part of the reason I asked this question. I will read the two posted- I have a lot of respect for NiH research. It's my first stop when something seems too good to be true. PP thanks for clarifying the portion of the NIH study. These aren't easy studies to wade through without a stats background.

I'm a mental health professional and I try to read every study that comes out regarding ADHD. It’s very confusing with lots of conflicting info. I don’t think there is enough research to be able to make any conclusive decision pro- or anti-meds based on research alone. Also, I do wonder about the long-term side effects that haven’t been researched yet, especially with the newer non-stimulant meds. I think the decision should come down to how much the meds will help your child and how much your child is struggling. I think the quote from the NIH study is a great one:

“Decisions about starting, continuing, and stopping medication may have to be made on an individualized basis, avoiding untested assumptions about continuing benefit, and using periodic trial discontinuations to check for need and benefit.”