Thanks For All The Advice...And We've Decided

[witzend]

Pretty much anecdotal.

Thank you.

 

[Sara PA]

And, of course, logic and common sense. Considering the existence of antidepressant induced mania/bipolar, it's a pretty safe bet that a child who experiences initial hypomania/mania is going to have a mood swing into depression somewhere down the road. How rapid that shift occurs and how severe it is depends on the person. Hypomania may be followed by a swing into a dysthymic period rather than full blown depression or a hositility phase.

Could be that antidepressant poop-out is merely a swing from a hypomania phase into a dysthymic phase.

 

[ML]

I look forward to hearing how he does on this. My difficult child has some similarities with yours. My prayers and good thoughts are with him. I sure hope it makes all the difference!

 

[flutterbee]

Oh, geez. Now I have something else to worry about. difficult child had immediate improvement on lexapro. The psychiatrist said that the anxiety portion kicks in right away and that the AD side of it takes longer. I hope that's what I'm seeing and not a swing into hypomania. I don't think it's hypomania, but I'll definitely keep my eyes open.

She's yet to hit the 3 month mark of consistently taking it. She's always stopped taking it in the past. Sigh....

 

[witzend]

Pretty much anecdotal.

And, of course, logic and common sense. Considering the existence of antidepressant induced mania/bipolar, it's a pretty safe bet that a child who experiences initial hypomania/mania is going to have a mood swing into depression somewhere down the road. How rapid that shift occurs and how severe it is depends on the person. Hypomania may be followed by a swing into a dysthymic period rather than full blown depression or a hositility phase.

Could be that antidepressant poop-out is merely a swing from a hypomania phase into a dysthymic phase.

Sara, I'm sure that you feel that you have a strong basis to believe these theories for yourself. Your conclusions are very broad for the limited amount of factually based information available to anyone. I'm concerned that you may be overstepping the bounds of your profession, as you are not a pharmacist, and that some parent here might deny their child treatment that could make their life better based upon your very strong feelings about these medications.

Don't get me wrong, I strongly resisted medication with M for my own reasons about diagnosis'ing. But, I have to wonder, where do you get the expertise to tell someone who is working with a number of doctors something like this? What if you stopped a parent from saving their child?

Anyone who is much happier within hours or days of starting an antidepressant is displaying an adverse reaction.

How do you know it's not a placebo affect? How do you know it's not just feeling better that they have made a decision to take control of their lives? Your theories are not absolute and it scares me that someone might make the wrong decision based upon your theories that because a drug company may or may not have done a study that they definitely didn't release, you can paint the effectiveness of these drugs and their possible side affects with such a broad brush. Honestly, the things you say sound more like conspiracy theories than fact. If you are so concerned and feel that your theories will hold water, why not help present it to the NIMH and get a study done? You're smart and articulate enough. Then everyone will know the answer.

I'll tell you something about anecdotal theories on medications. I have FSH Muscular Dystrophy. About 10 years ago, a lady with a Phd who also has the disease began posting articles that she knew of three people who were "asymptomatic" because they had been taking a supplemental drink called "glyco-nutrients" (sugar water) from "Mannatech" in a controlled study. Doris began publishing this as a "cure" for her FSH. She then began giving presentations, and you could be allowed to watch a videotape, but only so long as she was there to explain it. She refused to allow literature out of her possession unless she could explain it to you, and you couldn't keep it after she left because she "was being persecuted by the government."

About this time, someone pointed out that Doris was on the Board of Directors of Mannatech, and was being compensated with stock options. But really these three study members were cured! She began to propose NIH studies on her theory. There's lot's of money in studies. And since "Glyco-Nutrients" are available without a prescription, 10s of thousands of people would buy them and try them until the study was completed.

Doris and her husband had a small bunch of FSHD patients who were their groupies. They politicked for them with the NIH. Around then it came out that the three test subjects were actually Doris, her brother, and her son. Their groupies persisted and soon many of them were following this regimine. It seemed harmless enough, until intitial real and anecdotal studies of 6 months showed it wasn't working. Well, then Doris comes up with "we were taking diltiazem, a calcium channel blocker as well. That's what made it work for us and not you. So, these hundreds of middle aged groupies who are using canes or in wheelchairs for a majority of their personal mobility start conning their doctors into taking that drug. They also decide that if they're taking "calcium channel blockers" they should also stop all intake of calcium. No more milk or dairy. No more fortified foods, no more daily vitamins, no more fish. Unfortunately, now instead of falling and hurting themselves and having difficult PT recoveries, they're falling and breaking bones, no recovery, and a couple died. NIH tries the double blind study for 6 months on 200 patients. There's no indication that it will change anyone's symptoms for the better, let alone "cure" them. The groupies came up with their next theory, that the study should have been 24 months, and that they didn't really need the Glyco Nutrients, just diltiazem. And it isn't actually a cure, it can keep your disease from progessing for a while. Which would be great except a symptom of the disease is that you can go for years and even decades with no progression of the disease. So, what this has come around to is she is saying it does exactly for you what would happen without it.

All this because some lady who stood to gain a lot of money from increased sales of diltiazem, whose company has been investigated and fined for financial fraud on shareholders, said that she and her brother and her son were "asymptomatic" after a couple of weeks on this stuff. Yet you can look at any picture of her and she clearly still has symptoms. If she had just done it to herself, I wouldn't have cared. But hundreds of people I knew and cared about and who were desperate for a cure for themselves and their children cut a basic nutrient completely out of their diets for years and many harmed themselves. We won't know for a while what will happen to the children and teens whose parents fell for this load of crock.

So really, you worry me for people when you make such broad unfounded statements, and tell them to go against what they and their doctors have decided. Maybe a positive attitude on their part might be what is needed.

 

[Janna]

Thank you, everyone, for all your input. Witz, thank you for such a thought out post, even though it's not directed for me LOL, but brings good points up, and I appreciate them.

I know this is a website and I take everything I read here for what it's worth ~ an opinion. That's not to say that something someone says about a medicine may or may not be true. But, I've read things here from others that our own psychiatrists have completely discredited. There have been people here that have praised certain medications that our psychiatrists are not willing to try.

And there's been tons of good information too, that has really helped me (I remember Chris bringing up the Lithium/Tegretol issue to me, and I had no clue).

As with every other medication, we are moving slowly with Dylan on this drug. I have concerns, but I have had them with the other 32 medication trials, also. Risperdal, an atypical antipsychotic approved for children, that has had AWESOME effects on many, caused my son hallucinations and increased "mania" (I say that loosely, but increased hyperactivity).

Dylan is on a very low dose, only 25 mg. This is a new type of drug that we really should try, because Dylan needs help in so many areas, and none of the other drugs are working or have fizzled out. We will take this day by day, and see how it goes. It may go to hell in 3 months. It may not. All we can do is try.

Dylan is a VERY happy child as is. He is not depressive, nor has he ever been. So, when I say he was happier on the Wellbutrin (which he was only on about 4 weeks), I mean his spirit and mood seemed a little brighter, but he was not overly elated or anything else that I would have considered "manic" (thinking back to him dancing down the boardwalk like a ballerina in the summer time). He was just a little happier. I dunno LOL. But not crazy happy.

My son is really complex. Those of you that have been around since the beginning should know this already. His chemistry is, VERY OBVIOUSLY, not the norm, and he can't tolerate alot of medicines.

Witz, I appreciate your concern, and understand your post. I think that's a good statement for the general community, and although I appreciate and value Sara's opinions on medications, the bottom line does, and always will, come from a board certified M.D. psychiatrist. And every person that comes here should follow the same rule.

Janna

 

[Sara PA]

Your conclusions are very broad for the limited amount of factually based information available to anyone. I'm concerned that you may be overstepping the bounds of your profession, as you are not a pharmacist, and that some parent here might deny their child treatment that could make their life better based upon your very strong feelings about these medications.

The information about drugs that is available to doctors and pharmacists is available to everyone. Most of it is contained in the prescribing informations which are required and approved by the FDA. The rest is available in peer review journals.

The only secrets are the ones the drug companies keep and they don't keep ones about positive response to their drugs.

 

[Sara PA]

and although I appreciate and value Sara's opinions on medications, the bottom line does, and always will, come from a board certified M.D. psychiatrist. And every person that comes here should follow the same rule.

Medication mismanagement by a board certified child and adolescent psychiatrist almost killed my son. She failed to recognize psychiatric adverse reactions to the drugs she was prescribing despite those reactions being reported in the prescribing information and the literature. I trusted her. She ruined my son's life.

 

[ML]

Sara, I'm sorry that you had to go through misdiagnosis with your son. Sadly it seems to be pretty common. I still don't have a diagnosis with my son that fits completely. I used to call his diagnosis aspolaradd. It must have hurt terribly to see your child suffer and to find out later that it was the supposed cure that did the most damage. I'm glad to read on your profile that he is doing much better.

Anyway, I appreciate that your intentions are good and that you just want to help others avoid what you went through. It took me a long time to become willing to try medication. It came to the point where I realized that not medicating was causing bad side effects like a diminished quality of life because of difficult child's crippling anxiety. I do have days where I question my decision to medicate. But then again all those years of not medicating, I questioned them too :smile:

Someone once told me a long time ago to just make sure that the ultimate motive to medicate was for his own good and not mine LOL. I know most of us here fall into that category.

Thanks for your perspective

Hugs,

MicheleL

 

[witzend]

Medication mismanagement by a board certified child and adolescent psychiatrist almost killed my son. She failed to recognize psychiatric adverse reactions to the drugs she was prescribing despite those reactions being reported in the prescribing information and the literature. I trusted her. She ruined my son's life.

Thank goodness your case was the rare exception rather than the rule.

 

[Sara PA]

Thank goodness your case was the rare exception rather than the rule.

Unfortunately the psychiatric adverse reactions aren't rare and are a very big part of why most antidepressants aren't approved for use by children and adolescents. And probably even more unfortunate is that many doctors still don't recognize psychiatric adverse reactions.

 

[witzend]

Unfortunately the psychiatric adverse reactions aren't rare and are a very big part of why most antidepressants aren't approved for use by children and adolescents. And probably even more unfortunate is that many doctors still don't recognize psychiatric adverse reactions.

I'm sorry that you and your child were hurt so badly Sara. It doesn't make it an absolute certainty for everyone else, and many more people need and benefit from medication than will suffer the severe reactions you raise the alarm about. It might be better if you did not speak in absolutes when there is no study to back up your conclusions. If you know of studies that back up your conclusions, perhaps you should lobby to have them published.

 

[Sara PA]

I'm sorry that you and your child were hurt so badly Sara. It doesn't make it an absolute certainty for everyone else, and many more people need and benefit from medication than will suffer the severe reactions you raise the alarm about. It might be better if you did not speak in absolutes when there is no study to back up your conclusions. If you know of studies that back up your conclusions, perhaps you should lobby to have them published.

I'm sorry but you are mistaken. The double blind clinical studies on children and adolescents conducted by the manufacturers of the antidepressants failed to show a positive risk/benefit ratio. That's why the drugs aren't approved by the FDA and most other countries' drug regulation agencies for use by that population. I'm not sure why you aren't familiar with that information. I have posted exentsively about it over the years including links to articles. I know I've even mention the volume of The Lancet in which the negative studies previously unreleased by the drug manufacturers were reviewed by independent researchers. The drug companies are unable to conduct a studies which demonstrate the level of safety and effectiveness required by the drug regulatory agencies, which for the FDA at least is very much higher than the level of a placebo. Most antidepressants are statistically likely to fail at safety and/or effectiveness for children and adolescents, particularly for the treatment of depression. Short term studies for the treatment of Obsessive Compulsive Disorder (OCD) have been somewhat more successful.

The information from those unpublished studies was made available to the researchers who reviewed them under the orders of the British government during an investigation into the safety of the drugs. Under normal circumstances, clinical studies are proprietary and drug companies are not required to release negative findings.

And I have never spoken in absolutes.

 

[witzend]

Sara, perhaps we should agree to disagree. My disagreement with you isn't necessarily in your opinions or conclusion about theses drugs, but in that you present them as known fact that doctors are too stupid to know.

Anyone who is much happier within hours or days of starting an antidepressant is displaying an adverse reaction.

This is absolute, extreme, unfounded, and untrue in my case and my children's case. It may be true in some cases. It may be true in many cases. To say it "is" is unreasonable and irresponsible.

Please remember that this discussion began with my asking if your conclusions were based upon studies or anecdotal reports. You stated they are "pretty much anecdotal", based on "logic and common sense", "may be followed by", "Could be... merely a swing from hypomania." This would not be so bothersome to me, and maybe I'm the only one who notices it, but you do not present your conclusions with these qualifications unless pressed.

The only secrets are the ones the drug companies keep and they don't keep ones about positive response to their drugs.

Can you please site a reputable source for that comment? If what you are speaking of is 'anecdotal, based on common sense, may be, could be, etc.' are your posts in response to confused upset parents couched in terms of absolutes really any better than alleged reports that haven't been written or published?

Please note that I haven't made any comment on my views on medicating children. I am very concerned that drugs have and are being wrongly prescribed and overly prescribed. I tried therapy for M for 5 years before I allowed medications in spite of repeated recommendations. In my case I shouldn't have waited. If you are going to give these parents information with which to protect their children, shouldn't you site case studies so that the psychiatrists don't think they're nuts who got rumors off of the internet, or at least be up front and say "it's possible" instead of "it is"? Our battles with these so called "professionals" are difficult enough without looking like we're trying to trump their medical degree with anecdotal evidence from a woman on the internet who heard something from their friend who heard it from their doctor in England. It just plain doesn't impress them, and makes them less likely to listen to the parents.

In any case, I've made my point and don't feel a need to debate it with you further. You either can see the other side of the coin or you can't.

 

[LittleDudesMom]

I believe that this topic has reached a point where further discussion is not necessary. I believe Janna and the docs have made a decision regarding her son's treatment plan and I know we all wish for the best possible outcome for Dylan.

I will now lock the thread.

Sharon