Gifted Issues Discussion homepage Forums Twice Exceptional Rhodiola success

Thought I would update on my DD9, who I have posted about quite a lot. We started her on 500 mg of Rhodiola Rosea daily about 2 months ago, going on a tip from someone here. It is an herb with a long history of usage for depression and anxiety and some studies showing some efficacy (eg: http://www.ncbi.nlm.nih.gov/pubmed/17990195).

While it has not been a wonder drug, we really have seen improvement. I would estimate that DD's # of "bad days" has decreased by at least 50%, if not more. She is still cranky and sharp around the edges at times, but we see significantly fewer major meltdowns and less existential sadness. It's possible that summer break is the reason for the improvement--she has done some really good camps and has also been very physically active--but last summer was quite bad.

Just thought I would update. It has been a good couple of months!

I'm so glad you are having an easier summer than last! I don't know much about Rhodiola but I know what a wonderful thing it is when you start to realize you are seeing fewer "bad" days than before. I'm happy for you all!

I too am really glad that something is helping!

Whatever the cause, progress is to be relished! Good for all of you!

DeeDee

I think that tip probably came from me! I use it for my DS and EVERYONE (who had been complaining and dealing with his crankiness) noticed a significant difference quite quickly. I took him off of it for the summer but plan to start him on it again in the winter (I think I read it has it's origin in Russians using it to help them with the long dark (depressing) winters). I have to say we saw a definite, significant improvement. It is the only thing that I have used with DS that made such a clear cut difference. And not just me wanting to see it - grandmother and teacher (both who had no knowledge that I started givibng it to him) noticed it immediately. It really seemed to help with his stress level. I have also heard vitamin D can help so you may want to get her levels checked. I am so glad someone else is benefitting from this!

Irena, it may have been you--if so, THANK YOU!! Really, it was just a whim to try it. We are not "herbal supplement" people at all, but I was impressed by the studies. I really feel it has "taken the edge off" for DD and made it easier for her to function day to day. She seems happier, less stressed, and less anxious. I guess the real test will come when school starts again.

Very interesting... I might have to look into this. DS9 is on two other meds though, so I'd want to talk to his psychiatrist first.

I'd love it if some of the very smart people here would look at the studies. I wish there were a few more.

DH and I are toying with doing our own "study" where she is off or on the med for a few weeks and only one of us knows it. Of course, it would be even better if we gave her an identical-looking placebo during the off weeks, so she didn't know either, and even BETTER if we somehow triple-blinded it so that NONE of us knew which one she was taking. Even BETTER, we could program some device to "beep" at randomized times during the day so we could record her mood/behavior at random intervals...(geeking out)

Of course, this doesn't take the very real placebo effect into account...maybe no placebo is better...

After following along on the ivy admission thread, I think that I need some myself j/k

Seriously, though, would you mind sharing the brand that you have been using, please? Feel free to PM me. DD still has extreme reactions to seemingly in innocuous things so I would be willing to try this. How should it be dosed, by weight?

Actually, that's when a placebo is MOST needed; when the effect could conceivably mostly/entirely attributed to such effect, that is.

Unfortunately, not a lot of the pharmacognosy/ethnopharmacology work from the former Soviet bloc is... er... reproducible, let's just say. Hard to know if it's just the placebo effect or not. I presume that you've done sufficient hunting down of adverse effect and toxicology hypotheses regarding Rhodiola, yes?


I tend to be pretty wary of herbals because of the lack of oversight in the US (as compared to either foodstuffs or pharmaceuticals, it's very much the honor system in a lot of ways).


The real question is-- if it WAS merely placebo effect, would you really want to know that? If it seems to help, and you're all happier, and there seems to be no long-term usage red flags health-wise, then little harm in not knowing, IMO.

You might want to look at this information from the NYU Medical Center.

As for your own study, remember that any result would be purely anecdotal, and you can't really draw conclusions from a study of one in this kind of subjective situation.

Sorry I can't be more positive.

I am generally wary of herbals and supplements too... But it definitely wasn't placebo effect with my kid... People who had close contact with him for many hours a day every day and who had no idea I had started giving him the herb noticed a difference. Seriously, of all the therapies and such we have done - this was the only thing I could say that about. I am not sure about claims re "mental acuity" and such... he was just noticeably more cheerful, less fatigued, less rammy and less stressed. He also had no idea what he was taking - I just told him it was a vitamin. I breathed a deep sigh of relief!

Oh and I use New Chapter Garden of Life Rhodiola Force, 100 http://www.newchapter.com/force-of-the-whole/rhodiola-force-100 ; supposedly it is harvested from Siberia, etc. etc. I would not buy just any old brand or anything that comes from China. I give him one (100mg tablet) a half an hour before breakfast and one right when he gets in the car after school (half hour before snack).

Val, yes, of course I'm aware that one person doth not a study make.

I don't find that link particularly damning as far as mainstream med evaluations of supplements go. Honestly, it borders on chipper, barring the "this adaptogen concept is crap" bit, which, well, I can grant that. This study:


was not performed in the USSR or China--some Scandinavian country, I think? Frankly, given the less than impressive record of pharmaceuticals for depression and their potentially frightening side effects in kids...

I believe there were a few more studies on depression, but I could be wrong. I do intend to do some more research.

FWIW, there are no other herbal remedies in use in our household.

Sorry, I was making sense only in my own head. I was referring to the difficulty of determining whether the difference we are seeing is caused by the supplement, environmental changes (summer, no school, etc) or the actual placebo effect (she thinks the pill is "doing something" and/or so do we). So really, we'd also want to try her off of ALL pills, including placebo.


I've hunted around and find nothing indicating any dangers of toxicity. FWIW, the depression study is not from former Soviert bloc countries.

Re dosage, I said 500 mg/day but realized that is incorrect. It is a 250 mg capsule. Dosage recommendations seem to really be all over the place. She has not noticed any side effects at all, btu she is not sensitive that way.

Here's another article: http://www.sciencedirect.com/science/article/pii/S0165032710004234

It was done in Armenia, a former Soviet republic. Two of the authors were Swedish, but it was done in Armenia.

Two ideas:

I understand the frustration of wanting to help your child and feeling powerless. It sucks.

Evidence-based medicine can't always help or can be a painful route to (maybe) getting better (think cancer treatments here). This also sucks.

This situation can leave people looking for other treatments, even if they haven't been tested as objectively as possible. Unfortunately, many people who sell these treatments have a conflict of interest (they're making money from selling them). So they take advantage of people in numerous ways, including persuading (or simply paying) people to extol their virtues.

Yes, the drug companies have these problems, but the drug companies also have the FDA and other non-US regulatory bodies keeping tabs on them, and independent researchers checking up on them. No, the system isn't perfect, but it's WAY more scrutiny than the CAM practitioners get.

But the CAM crowd is nice. They have better bedside manners and are gentle and very optimistic. When the evidence-based crowd is negative about treatment options and also criticizes untested remedies, the evidence-based folks come across as being shrill and mean and unsympathetic. And the CAM practitioners come across as being picked on for only trying to help when the other crowd doesn't care (the opposite is usually true, IMO.)

Yes, Lorenzo's oil was a wonderful treatment created by people who were operating outside the mainstream. But their treatment was also tested eventually, and AFAIK, those people weren't trying to make a profit. And they were a very rare exception.

You asked if anyone could look at the studies and provide information. I found some information that I felt was relevant to helping you understand the envirnoment around this herb.


In this case, there isn't a lot of evidence showing that the herb has toxicities, but AFAIK, it also hasn't been tested in children (the study at Penn is in adults, as was the Armenian study). I may be overcautious, but I would be very careful about administering an untested compound to a child (anyone really) when it's deliberately being used to alter brain chemistry. This is because I don't know what it might do.

So, sorry if I'm coming acorss as a bummer. I'm not trying to be mean or pick on you or anything like that. I'm only trying to say "Drug unproven, caution warranted, here's why."

Ultramarina, I personally agree with this. After resarching it, I'd give my kid this herb rather than the drugs out there if I see a positive difference and based on the studies. I worry much less of the effects of this herb than I do the pharmaceuticals. I am more comfortable with it than using melatonin for him quite honestly, which I do give him during school season during the week. By the way, in terms of whether I 'really' see a difference when he uses it, I would liken it to the melatonin. People could say I only 'think' I see a difference in how easily he falls asleep when I give melatonin but we do see a huge difference when I give him melatonin and when I don't - it's really clear. Same with the rhodiola - it was that obvious. Interestingly, and another aside, I have noticed that in many countries the use of melatonin is much more restricted and much more caution is issued against kids using it than here in the States (in most of Europe I believe a 'prescription' is needed to obtain it? so I was told anyway; in contrast, here I have been encouraged by more than one doc to use it and my friends with children with ASD are also encouraged to use it and do use it for their kids). After working in pharmaceutical litigation for a number of years, I also do not buy into the mindset that our country is better at warning and protecting re drugs and supplements than other countries. I have worked on more than one case in which very dangerous pharmaceutical drugs were black-boxed and restricted in many other (what some may deem less-than)countries and side efffects were properly discussed and warned about and were covered up here and the FDA just dropped the ball. Anyway, just some rambling thoughts.... Even though I do use melatonin out of what I feel is necessity only during school weeks, I am not that comfortable with it. I am actually more comfortable giving him rhodiola than melatonin. In my opinion, I think it helps with fatigue and stress and I think the reason it helps with my son is because he is mentally and physically fatigued and stressed during school due to his 2e issues. Summer is more relaxed so we take a break from it then but will start it again in the fall when school starts. I think the studies look promising, the results I have had with it are good and there is no evidence that it is toxic/bad at all. Again, just my thoughts and experience.

Oh I also agree with Val's last post and appreciate the insight & thoughts!

You won't find me extolling CAM. I'm not particularly a fan. I personally take an array of mainstream meds, and my kids (not that one, currently) have been on and off them as well for a variety of things. You don't need to give a lecture on why CAM appeals yet can be risky, believe me. I have been down this road with friends who have pursued remedies for their children that were very expensive and, I thought, dangerous and utterly unproven.

This herb is on its way to being an evidence-based remedy. I personally think there is a middle ground and that it is foolish to completely ignore that possibility. I completely agree that there is a VAST amount of charlatanism out there. This one happens to look fairly promising. I understand the concern about possible toxicity, but research indicates no known or suspected safety risk. As for no research in children, can I tell you how many meds my children have been prescribed where there was "no research in children," "no established dosage for children" and the doctor just gave some standard off-label dose based on weight? That research is very rarely done. It's a problem, for sure, but does not indicate very much.

One other insight about herbals (as compared to extracted active components or to synthetic pharmaceuticals)-- they tend, on average, to be less "clean" from a pharmacology standpoint.

They frequently have several mechanistic effects at multiple receptor types, and often have variable activity depending upon season and location of harvest, age of plant material harvested, etc. etc.

Foxglove, anyone?

The actual problem, though, is that as often as not, the active principal is unknown-- at best, it may be assumed based on structure-activity analogies.

Hawthorn would be a 'cardiac' drug cocktail in this category; unknown mechanism, unknown active agents, unknown concentrations, unknown, unknown, unknown... all that IS known about it is that the action seems to be "not ____" (since it doesn't 'compete' with a number of other known drug classes), and that the known components don't explain its activity by any stretch.

Okay, so if you assume that "molecule A" is the active ingredient, and you standardize on that basis, what happens if you're... er.... well, wrong? What if it is actually molecule H that has the activity that is desirable?

That concentration might vary WILDLY in an herbal preparation if it isn't even being evaluated, leading to study results which really ARE merely anecdote and placebo effect.


So that is reason number one why I'm personally not a fan of any herbal that isn't already a widely used foodstuff. I make an exception for, say, cranberry juice capsules or fish oil.

The other reason why I'm particularly wary is that, as Val indicated, the neuropharmacology of many pharmaceuticals is simply not well-studied in children to start with. What is known about that pharmacology suggests very strongly that neurochemistry and receptor populations can be permanently altered by the administration of some substances (including some natural ones).

Okay-- back to 'pharmacological cocktail, much of it unknown' for a moment:

the reason why toxicity/adverse event reporting is often so scarce with herbals is that they aren't well-studied to start with. Most of the people doing the research studies in this field aren't looking for those effects. Nor are they looking longer-term.

This is the reason why I'm wary of newly approved mainstream pharmaceuticals, too. I consider the first five years of rollout to be another clinical trial phase. LOL.

The difference is that at least there IS an agency keeping track of that stuff for pharmaceuticals. There isn't one for herbals.

The problems have to be massive in scope and in scale for an herbal to be pulled from the market. (Ephedra, for example.)

http://www.ncbi.nlm.nih.gov/pubmed/22928722

http://www.ncbi.nlm.nih.gov/pubmed/10948380

Please note what the FDA recommends for toxicity studies in herbals:

http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/ucm070491.pdf

but bear in mind that this is VOLUNTARY. I know of no company actually doing all of those things to the extent that it probably should be done.

While not all of the best quality in terms of citations, this is a good starting point for anyone considering an herbal as a DIY intervention:

http://en.wikipedia.org/wiki/List_of_herbs_with_known_adverse_effects

Don't misunderstand me-- I'm all for risk-benefit analysis. If I were ever in a position where I had no modern pharmacology to rely upon, I'd certainly use what I know about ethnobotany to improve the health of my family with herbals. As noted above, we already do use a select handful of things. The more I understood about the pharmacology/toxicology, though, the smaller that number of trusted herbals became for me personally. MOST herbals (and not a few vitamin supplements) are in the "not worth it" pile for me personally at this point.

Would I give my own child Rhodiola? Probably not. But I'm not someone who is seeing potential benefit as being worth the risk that I know about for any herbal product. I'm not living in Irena or Ultramarina's shoes, though.

Ultramarina-- I'm really not questioning your decision to try this with your child. I'm just providing information based on my professional opinion re: herbals/supplements as opposed to pharmaceuticals.

The level of scrutiny of the one versus the other is really huge, and that is something that it's important to weigh in decision-making.

You've clearly done that. But I know that you aren't necessarily endorsing this for anyone else, right?

Well, I'm certainly not selling the stuff. Nor am I wildly recommending it, a la "You all should go out and buy this ASAP."

In this case, I feel encouraged by what appears to be hundreds of years of folk use. It's not a new remedy by any means.


Right. There does appear to be some understanding of this with Rhodiola, but I'll freely admit that I'm in no position to judge if it's correct.

I guess I'll just reiterate that this herb appears to have had far more scrutiny than most and to have come out looking better. But I agree that it's a calculated risk. Is it more or less of a risk than RX meds for depression or anxiety for her? I personally believe it is less of one. YMMV, obviously.

this herb appears to have had far more scrutiny than most and to have come out looking better

I disagree. (With all due respect-- this is an area that I've worked professionally in, and rhodiola seems to me to be rather typical for a well-known folk herbal.) I would say that it has a long history of ethnopharmacological use in traditional herbal practice. But so do many Ayurvedics and TCM's that have recently uncovered toxicity or contraindications, too. It's probably okay since there doesn't seem to be any ACUTE toxicity noted. However, that says nothing about chronic toxicity or clearance times.

Mechanism is unknown. It's assumed, but unconfirmed. (And honestly-- in some cases, actively contradictory from one study to the next.)

That means that any suggestions about what the active component actually is are conjecture at this point. You can't really "standardize" what you can't identify.

There are some disconcerting reports in the older literature that indicate that it might be pretty dirty stuff from a pharmacology standpoint. Antiarrhythmic affect may well indicate cardioactive principles such as beta-blockers or MAO/ACE inhibitors.

http://www.drugs.com/npp/rhodiola.html

http://altmedrev.com/publications/7/5/421.pdf

Even the fairly generous (IMO) latter review uses terms like "purported," "assumed" and "putative" when describing activity and mechanism.

This is more concrete-- but as a parent, this would scare me, honestly, more than it would reassure me:

http://www.ncbi.nlm.nih.gov/pubmed/23430930

A lack of toxicity data doesn't mean that it is safe-- only that nobody has examined it and published those findings.


Other reviews that I think are well worth looking into:

http://www.ncbi.nlm.nih.gov/pubmed/19468971

http://www.ncbi.nlm.nih.gov/pubmed/22643043

"Rhodiola rosea has an excellent safety profile, according to a the study reported in "The Journal of the American Botanical Council. The lethal dose of rhodiola rosea has been determined by animal toxicity studies to be 3,360 mg/kg. The toxic dose for an average 70 kg adult would be around 235,000 mg, and with clinical doses around 200 to 600 mg per day, patients likely have no need to worry about a fatal overdose."

Not sure if that is the toxicity data you mean.

I appreciate the additional studies. I can't actually make head or tails of this one: http://www.ncbi.nlm.nih.gov/pubmed/23430930

but the last two are certainly far more comprehensible to me, and meaningful.

Ultra, I'm not second-guessing your choice for your DD, but wanting to know your logic here. I have always felt in making these (harrrrrd) choices for my DS that it's a safer bet to go with RX meds that have been long studied, known to not be addictive, etc. rather than unregulated and less-studied herbals/naturals. Can you explain a bit more?

DeeDee

Well, that certainly suggests that acute toxicity is not a problem under ordinary conditions.

But that is the kind of thing that usually would already be well-known about a botanical which has as long a history as this one does.

That study is one that I find a bit worrisome. The same researcher is cited in most of the studies that show efficacy over the past decade, which is not a good sign when coupled with the observation that other labs seem to not always reproduce those results.

There is tissue culture work that seems to reflect G-coupled receptor signalling up-regulation (and down-regulation, fwiw)... but that system is so complicated that it's hard to say what else is happening as a result.

There are a lot of feedback loops in whole organisms surrounding that signalling pathway. If you tweak one side of it, the whole raft moves, basically, and there's no way to shut off that connectedness.

Renin-angiotensin is another one like that, which is why I look at any agent that purports to have cardiotonic or hepatotonic benfits and think... Hmmmm... really? So what else is it doing, then? Ohhh.... nobody has looked. GREAT. (Not.)

Agents that act in the renin-angiotensin pathway have a tendency to do things downstream that work on the cardiac muscle receptor subtypes for a whole host of ligands. For example, I mean.

Many of the kinds of things that I worry about here are the sorts of things that eventually result in black box warnings on pharmaceuticals, or lead to them being pulled off the market. Mostly its related to unintentional downstream effects that are intrinsic to the class of molecules. The COX-2 inhibitors are a good example, as is a drug like Avandia.

The things that I really stay away from are those that seem-- really-- too good to be true. That's because I know in my heart of hearts that nothing is really that effective AND that 'clean' and that the truth is probably that they just don't (yet) know what it is doing otherwise.

Elidel is a great example of one of those.

The thing that freaks me out about herbals as a class is that the majority of them are like those drugs. Only partially elucidated mechanisms, no real idea about dosage (because you can't quantify something if you don't even know what it is) and a lack of long-term safety data. Ethnobotany has a real problem in collecting safety data for traditional remedies; the reason is that in traditional herbal practice, it was very likely that a condition which was serious enough to require intervention was: a) already life-threatening to start with, so little additional harm in trying other approaches, and b) already treated in a variety of other non-allopathic ways. So if a person dies after treatment with Ma Huang, there's little to suggest that it wasn't the asthma that did them in, and the threshold for establishing that something is "risky" long-term is VERY VERY high, because in the traditional cultures where such medical practice developed, life-expectancies weren't that great to begin with, and "long term" might mean something different than it does to modern first-world residents.

It's worth recalling that Coca was initially greeted with many of the same-- in fact, the EXACT same-- support and claims as Rhodiola; improvement in stamina, "balancing" neurotransmitters, better focus and concentration, sense of well-being, etc. etc. There is a lot of hand-waving surrounding the pharmaceuticals which impact the biogenic amine neurotransmitter systems, too-- but I'm suspicious of ALL of those claims on the basis of what I know about that system. ALL of them come as a package deal with permanent changes in neurotransmitter kinetics, and induce dependence, and the reason is that the two parts of the molecules that seem to do those things... overlap. No way to separate them.

Same red flags for dirty pharmacology here, too. In other words, I'm suspicious that it seems to do too many different things that have little to do with one another at the molecular scale. It has to be a cocktail if it's really doing that stuff. If it's a cocktail, then that increases the risk that it's doing something harmful.

Acute toxicity data doesn't pick up mutagenic, carcinogenic, or teratogenic effects very well.

Nor does ethnobotanical history, which is by definition a collection of anecdote.

DeeDee: The well-known increased risk of suicidal behavior in children and teens taking antidepressants is why I do not want my DD taking these medications. We have experienced self-harm talk from our DD (not in a long time, fortunately) and I do not want to mess around with this risk.

At this time, we believe DD's primary problem to be depression. The main RX prescribed for her age is Prozac:

http://www.netdoctor.co.uk/depression/medicines/prozac.html

Further, though I have not done extensive research on this, I understand there is increasing evidence that the actual efficacy of Prozac may be significantly less than once thought.

Absolutely. Most of the SSRI's (as well as the less-selective ones) don't really alter the underlying affective problems appreciably. They just move the temporary setpoint-- but the system tends to respond by regulating to offset the changes anyway.

(Not to get too far off track, but this is another reason why I have some skepticism about medications in this class or related ones-- for ANY pediatric condition, actually.)

I can't answer for ultra (obviously! LOL) but this http://www.health.harvard.edu/newsweek/Should_children_take_antidepressants.htm is just one of many scary things I have read about anti-depressants and anti-anxiety meds for children. After reading everything here - the rhodiola still seems safer and more mild to me... My DS doesn't seem to strenuously need a particularly strong rx for anxiety and honestly from everyhting I have read and been advised by medical professionals he just isn't close to bad enough to take the risk. On a whim I tried the rhodiola on the advice of another mom in a similar situation with a 2e kid (who incidently is American but with Russian parentage and well you get the idea). I researched it, read about it, talked with her... tried it. And it worked - and I didn't notice any side effects and he seemed fine when I weaned him off in May. That's just my non-scientific, personal perspective. My poor kid is very stressed honestly. I know that sounds ... well I am not sure ow it sounds but he is. He's hard on himself and being 2e as many of you know can really be anxiety produicng and stressful... he was sad and irritable but not so bad off that I thought he needed some scary prescription antidepressants. Personally I think my little guy will be okay as he 'grows into' his diability and as he gets to an age when things like handwriting stop being such a big deal, ykim? In the meantime, using rhodiola temproarily to help him through the stressful months seems harmless and it did work. So, totally not arguing here and not going back on firth or who has more scientific evidence in their favor or anything like that... just giving you personal experience and feelings to your question of 'why.'

Oh and sorry for typos ... I am a terrible typist

Oh and I see we cross-posted!

Updating on this:

I realize this thread became somewhat controversial, but wanted to provide an update. DD9 is still taking the rhodiola and still doing MUCH better. We have had a few minor hiccups on return to school, but overall I would still say her issues are 50-60% improved, if not more. It is, of course, possible that there is some other reason behind this--maturation? Better teacher fit? (she does have a GREAT teacher this year) Alignment of the stars? But it's hard not to attribute it to the rhodiola. We did take a one-week break last month (this is recommended as an occasional "reboot") and it was a harder week than usual.

I have found this page and suspect it is probably overcautious, but am keeping it in mind for any time DD takes other medication:

http://www.sharecare.com/health/herbal-supplements/what-medications-interact-rhodiola-supplements;jsessionid=40F10C30976AE214814B4DD885DE5467

It's really lovely to be enjoying our time with her more and to see her happier.

What is interesting is that DS5's behavior seems as though it had deteriorated since DD has been "better." I almost feel like he notices there is more "space" for him to act out and takes it accordingly. I know her behavior was very hard on him because he used to talk about this and how it made him sad. In a way this may be healthy so that he has less "best little boy in the world" syndrome, but I worry a little that it may be going too far in the other direction. His behavior at school is uniformly excellent, though.

Glad to hear you guys are doing well!

We've been trying rhodiola for a month or two now, DS11 and me both, and I'm cautiously optimistic. I feel like it helps me, and my impression is that it helps him. We are continuing to take it, and we'll see what we think as it goes along.