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

[Anonymous]

I'm the poster with the history of alcoholism in the family. I should also add that our child has a heart murmur and the medical folks were a bit vague as to whether or not we should be concerned about giving stimulants to someone with a heart murmur. No one was willing to tell us definitively that it was or was not dangerous, but it was a significant concern for us.

[Anonymous]

Anonymous wrote:

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.”

While that quote is very true, the goal of any study is to look for trends at the population level. No one study result or finding will work for everyone, but the goal us to find what is significantly beneficial relative to other options. For instance, if meds help 50% (meaning half don't see a benefit) and modifications alone help 20%, then meds are "better", even though half the population is without benefit. So of course at the individual level it is trial and error. But at a population level perspective, meds are helpful in many settings.

[Anonymous]

OP here -- since we're talking about studies, has anyone read the studies (albeit small sample size) of brain iron levels? The brain iron levels of the never-medicated children was shown to be significantly less than the children taking medication and the children without ADHD.

Apparently, brain iron facilitates dopamine production- insufficient dopamine is the underlying cause of ADHD. This study worries me because long term iron deficiency can cause brain damage-- although I don't know if that is the case with brain iron. Additionally, low brain iron in these cases may be unresponsive to iron supplements because it appears to be an uptake issue- not a diet issue. All of this if I've interpreted the studies correctly. NIH is still out on this, but I saw the study in several reputable spots.

The researchers are looking for a bio marker for ADHD (to prevent misdiagnosis) and this one is looking promising.

[Anonymous]

Anonymous wrote:OP here -- since we're talking about studies, has anyone read the studies (albeit small sample size) of brain iron levels? The brain iron levels of the never-medicated children was shown to be significantly less than the children taking medication and the children without ADHD.

Apparently, brain iron facilitates dopamine production- insufficient dopamine is the underlying cause of ADHD. This study worries me because long term iron deficiency can cause brain damage-- although I don't know if that is the case with brain iron. Additionally, low brain iron in these cases may be unresponsive to iron supplements because it appears to be an uptake issue- not a diet issue. All of this if I've interpreted the studies correctly. NIH is still out on this, but I saw the study in several reputable spots.

The researchers are looking for a bio marker for ADHD (to prevent misdiagnosis) and this one is looking promising.

I haven't read anything serious about iron & ADHD, but this is a wonderful article on nutrition & ADHD, based on a recent general review of all available high-quality evidence
http://sharpbrains.com/blog/2015/04/21/study-dietary-interventions-can-help-children-with-adhd-especially-with-proper-monitoring-and-adjustment/

"Exist­ing evi­dence points towards mod­est but sta­tis­ti­cally sig­nif­i­cant ben­e­fits of each dietary inter­ven­tion on ADHD. As indi­cated above, mod­est aver­age ben­e­fits can obscure the fact that some chil­dren show sub­stan­tial gains. If that hap­pens to be your child, the fact that most chil­dren may not real­ize large ben­e­fits would be less relevant."

[Anonymous]

Anonymous wrote:OP here -- since we're talking about studies, has anyone read the studies (albeit small sample size) of brain iron levels? The brain iron levels of the never-medicated children was shown to be significantly less than the children taking medication and the children without ADHD.

Apparently, brain iron facilitates dopamine production- insufficient dopamine is the underlying cause of ADHD. This study worries me because long term iron deficiency can cause brain damage-- although I don't know if that is the case with brain iron. Additionally, low brain iron in these cases may be unresponsive to iron supplements because it appears to be an uptake issue- not a diet issue. All of this if I've interpreted the studies correctly. NIH is still out on this, but I saw the study in several reputable spots.

The researchers are looking for a bio marker for ADHD (to prevent misdiagnosis) and this one is looking promising.

I'm the previous NIH poster. I just read some of these abstracts and they seem pretty interesting. It especially strikes me because my non-ADHD child had other issues that seemed to be related to deficient iron in some pathway level. While blood tests revealed normal iron, my child had a problem that scientific literature seemed to feel was somehow related to poor iron absorption despite normal levels--and that supplementation of therapeutic iron helped. Despite our do for knowing nothing about this (as is often the case with lesser known studies), we started iron supplementation and the symptoms resolved. Again, this wasn't for ADHD, but it wouldn't shock me if deficient iron uptake from the blood was involved.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here -- since we're talking about studies, has anyone read the studies (albeit small sample size) of brain iron levels? The brain iron levels of the never-medicated children was shown to be significantly less than the children taking medication and the children without ADHD.

Apparently, brain iron facilitates dopamine production- insufficient dopamine is the underlying cause of ADHD. This study worries me because long term iron deficiency can cause brain damage-- although I don't know if that is the case with brain iron. Additionally, low brain iron in these cases may be unresponsive to iron supplements because it appears to be an uptake issue- not a diet issue. All of this if I've interpreted the studies correctly. NIH is still out on this, but I saw the study in several reputable spots.

The researchers are looking for a bio marker for ADHD (to prevent misdiagnosis) and this one is looking promising.

I'm the previous NIH poster. I just read some of these abstracts and they seem pretty interesting. It especially strikes me because my non-ADHD child had other issues that seemed to be related to deficient iron in some pathway level. While blood tests revealed normal iron, my child had a problem that scientific literature seemed to feel was somehow related to poor iron absorption despite normal levels--and that supplementation of therapeutic iron helped. Despite our do for knowing nothing about this (as is often the case with lesser known studies), we started iron supplementation and the symptoms resolved. Again, this wasn't for ADHD, but it wouldn't shock me if deficient iron uptake from the blood was involved.

OP here- agreed. I tried to sort through the blood iron, ferritin levels, and brain iron. NIH essentially said that blood and ferritin iron differences between non medicated (stimulant naive) children with ADHD are insignificant, but they are leaving the door open on the brain iron connection. The researchers apparently used an enhanced scan that picked up the brain levels. If this study is replicable, it may be the thing that would change my mind about giving stimulant medication now rather than later.

Anyway, this thread has been 99.9% civil and thoughtful, and I can't thank everyone enough. In the next few months, I may post the brain iron study as a point of interest.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here -- since we're talking about studies, has anyone read the studies (albeit small sample size) of brain iron levels? The brain iron levels of the never-medicated children was shown to be significantly less than the children taking medication and the children without ADHD.

Apparently, brain iron facilitates dopamine production- insufficient dopamine is the underlying cause of ADHD. This study worries me because long term iron deficiency can cause brain damage-- although I don't know if that is the case with brain iron. Additionally, low brain iron in these cases may be unresponsive to iron supplements because it appears to be an uptake issue- not a diet issue. All of this if I've interpreted the studies correctly. NIH is still out on this, but I saw the study in several reputable spots.

The researchers are looking for a bio marker for ADHD (to prevent misdiagnosis) and this one is looking promising.

I'm the previous NIH poster. I just read some of these abstracts and they seem pretty interesting. It especially strikes me because my non-ADHD child had other issues that seemed to be related to deficient iron in some pathway level. While blood tests revealed normal iron, my child had a problem that scientific literature seemed to feel was somehow related to poor iron absorption despite normal levels--and that supplementation of therapeutic iron helped. Despite our do for knowing nothing about this (as is often the case with lesser known studies), we started iron supplementation and the symptoms resolved. Again, this wasn't for ADHD, but it wouldn't shock me if deficient iron uptake from the blood was involved.

OP here- agreed. I tried to sort through the blood iron, ferritin levels, and brain iron. NIH essentially said that blood and ferritin iron differences between non medicated (stimulant naive) children with ADHD are insignificant, but they are leaving the door open on the brain iron connection. The researchers apparently used an enhanced scan that picked up the brain levels. If this study is replicable, it may be the thing that would change my mind about giving stimulant medication now rather than later.

Anyway, this thread has been 99.9% civil and thoughtful, and I can't thank everyone enough. In the next few months, I may post the brain iron study as a point of interest.

should have said "between non medicated (stimulant naive) children with ADHD, children with ADHD and a history of stimulant medication, and children without ADHD" that could be confusing and it's a mouthful.

[Anonymous]

I haven't because my brother became depressed and suicial while medicated. I may change my mind but for now things are going well with supports at school and better tools we have learned.

[Anonymous]

I have 2 kids with ADHD. One is medicated, the other is not. The medicated one simply cannot not reasonably function in school or home and can be a danger to himself due to his extreme impulsivity. The other is getting along okay in school with just the 504. Does not cause chaos at home and is not a danger to himself. His ADHD would not be labeled as severe as his brother.

You just do what's best for your kid and your family.

[Anonymous]

My child is newly diagnosed (3 rd grader)-- I'd like to avoid meds. Do you all recommend a therapist-- like a ADHD specialist (is there such a thing?).

[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.

We made the opposite decision. On my side there's a strong family history of substance abuse, depression and suicide as well as undiagnosed ADHD (they're dead now and can't be formally tested). I'm determined my kids won't go the route my siblings did. We talked to the kids from an early age about how our brains are wired and the dangers of addiction/depression. They also know about the suicides in my family and the role our brains play in it. We talk a lot about mental health and mindset. I think this is the best tool we have to help keep our kids healthy.

As far as medication goes, we avoided it for a while. We started out doing what PPs have suggested, structure/routine/exercise/diet, etc. But, our DS continued to struggle and it affected his confidence/esteem. He'd be so very hard on himself. It was hard for me to see, especially since I know that's the road to depression. It was even harder for DH because he recognized DS's struggles. DH was diagnosed with ADHD after our oldest was. Watching DS struggle was like re-living his own struggles and he didn't want DS to go through what he'd gone through. DH also suffers from depression and given my family history, the comorbidity of depression and ADHD, we have legitimate grounds for concern. Our oldest DS had too many negative side effects with stimulants so he's on a non-stimulant. We're not looking for him to be in the top of his class. We want him to enjoy learining and do his best. ADHD medication helps him with that.

It sounds like you made the right medication decision for your family. Our situation is a little different with the history of depression/suicide. We see ADHD medication as a tool to mitigate the propensity for depression and self-medication.

This.
We were also hesitant to medicate our two ADHD kids (and we have one NT kid). They present very differently, and need different supports and take different meds. Medication is a tool that enables them to learn behavioral mods and coping skills so they can learn and grow and discover who they are. Otherwise they would be spending most of their energy masking their differences and working twice as hard to accomplish what they know they are capable of. It's not a matter of good grades or fitting into a mold, it's about functioning. They are now teenagers and do well in school and feel good about themselves. They are involved in different ECs, and are absolutely quirky, interesting, bright individuals.
No medication is a magic bullet, and you will need to monitor sleep, exercise , diet, etc very closely. And as they grow and change, the meds they need change as well. We work with a great team of docs, and they are closely monitored.

[Anonymous]

PP here - as a side note my 13 year old son participates in an NIH longitudinal study on brain dev and ADHD. It's eye opening to see first-hand the research showing that brain development in people with ADD/ADHD is markedly different than people with typical brain development. Frontal lobe anyone?

[Anonymous]

Anonymous wrote:

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.

This describes my experience and that of my son. He takes a stimulant medication now. He also has an anxiety diagnosis and those symptoms are exacerbated by the stimulant. He's a gifted kid and if he's unmedicated he is very unsuccessful in school. That makes him anxious too. It's a hard choice to make.

[Anonymous]

Anonymous wrote:My child is newly diagnosed (3 rd grader)-- I'd like to avoid meds. Do you all recommend a therapist-- like a ADHD specialist (is there such a thing?).

Therapy for what? Whether your DC has ADHD or not, she needs to learn to be organized, how to study, how to take tests, be able to plan and regulate emotions. Kids with ADHD tend to have difficulty learning those skills. They need additional instruction in those areas and repetition, repetition, repetition until it becomes 'routine-ized'. Emotional maturity is also a factor. Our DS has been practicing Cognitive Behavioral Therapy (CBT) for years. He could tell you what he needed to do in each situation but when he was in the 'middle' of things, it was often hard for him to access the skills he'd learned - until he matured a bit more. Most of this stuff you can start on your own. You can work with the school to reinforce it as well so you've got consistency across environments.

[Anonymous]

Anonymous wrote: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.

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I have a question about her self esteem, is it because she is embarrassed because she has to go to the resource room?