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“My Misdiagnosis Nightmare Came True”

Every mother agonizes about whether to put their child on medication to treat ADHD. But what if you did, then found out it wasn’t ADHD after all? It happened to us.

How chilling it was to find out my daughter didn’t have attention deficit disorder (ADHD or ADD) after she was already taking medication to treat it. Was I ecstatic or furious, thankful or bewildered? All of the above — and much, much, more. Questions raced through my head. How could this mistake happen? If it happened to her, how many other children are living with an ADHD misdiagnosis?

My daughter suffered from a mood disorder and was diagnosed early on, taking Prozac faithfully every day. Then, two years ago, a well-known psychiatrist diagnosed Jessie with ADHD. It’s common knowledge that ADHD is a co-morbid disorder, meaning it often occurs at the same time as one or more other conditions. So, I was reasonably comfortable with the assessment because I knew there was a high chance something else was going on.

After a few months of taking ADHD medication, something was off, and suddenly her temper would rage out of control for the least little thing. She was moody, irritable, and just plain miserable. Something was wrong. All of my mom radar was signaling that my sweet daughter was not only looking different but also feeling horrible almost every single day.

Hindsight is 20-20 and I should have taken action more quickly than I did. I am a firm believer in Western medicine, and why should I — of all people — doubt what the psychiatrist diagnosed? It took me almost a year to challenge the medical authority and get a second opinion, a year my daughter wasted taking medication that wasn’t needed and could have done her harm.

We went to an ADHD clinic in Southern California to have brain scans performed. This procedure was completely harmless and almost entirely non-invasive except for some dye injected into a vein to illuminate parts of her brain as they worked. The results were remarkable.

[[Self-Test] Could My Child Have ADHD?]

After thousands and thousands of scans performed researchers can tell when a person has ADHD because research tells them that certain parts of the brain will fire and light up for certain reasons. When areas fire too little or too much there is a problem.

My daughter does not have an ADHD brain. Instead, she has all the common signs of a mood disorder and someone who has suffered a previous concussion.

Our first order of business was to stop the ADHD meds, continue Prozac, and add a SAM-e supplement to her regimen to aide depression. We also added extra Vitamin B, Omega 3 and GABA to help her mood disorder. Believe me when I tell you that she noticed a difference in herself after one day, and I noticed a difference after one dosage.

My internist would not perform many of the follow-up medical tests the clinic recommended. She said they were a waste of time and money. We paid out of pocket to have an in-depth blood, saliva, and stool testing done ourselves.

[Free Expert Resource: Unraveling the Mysteries of Your ADHD Brain]

The stool test showed that my daughter’s GI system is loaded with Candida yeast, which we will eliminate holistically. There’s no telling what the rest of the tests will say about her system, but it feels so encouraging and hopeful to know we are finally moving closer to wellness.

I don’t intend to insult the medical profession, or shame people who take medication for ADHD. If you actually have the condition, it can be very helpful!

I share our story to remind all parents to be aware and advocate for your child, no matter what her age, if you feel something is not working or if her symptoms are getting worse. People are misdiagnosed all the time, and many symptoms mimic other conditions. Moms, listen to your gut, and follow your instincts — they won’t steer you wrong.

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6 Comments & Reviews

    1. You’re looking for the Amen Clinics, started by Dr. Daniel Amen. What he does is absolutely fascinating and should be a standard of care for folks with mental disorders. His technique was dismissed early on, but he persisted and is a well-known expert in the field now. He also has children with differing needs, giving him another perspective on this type of issue.

      1. Actually, most experts in the field still think Dr. Amen is full of it.

        “It would be remarkable for any doctor to achieve the degree of notoriety that belongs to Dr. Amen. But what is perhaps most striking about his remarkable success is that it is built on claims, most notably the extraordinary, near-miraculous benefits of SPECT, which have been dismissed as medically worthless by a veritable who’s who of eminent, mainstream psychiatrists, neurologists and brain-imaging specialists.”

        Brain scans (but not SPECT ones, which use radiation and are less sensitive than functional MRIs which don’t use radiation) are useful for researchers to find patterns across many people, but they are not actually useful to diagnose individuals.

        Based on the comment dates this article is at least a couple of years old; I hope the author’s daughter is doing well!

  1. I’m so sorry this happened to you. ADHD can be misdiagnosed, no doubt!!!

    Adhd isn’t a perfectly straightforward diagnosis because it is largely clinical. Brain scans and neurofeedback can *help* diagnose ADHD but they are FAR from standard of care. In fact, not one of the therapists or doctors that my child sees, that I see for my ADHD, or my mom sees (it runs in the family!) has said it has been shown to be helpful for individuals. Remember, too, that our brains and psyche are complex and one person can have several diagnoses. She may have a mild ADHD and the medicine she was on during the brain scan helped (or the brain waves that demonstrated ADHD on neurofeedback were dampened). Obviously not true if she wasn’t on meds at the time!

    I will also say that the reason most doctors don’t encourage lab tests is because they are generally not needed or because they aren’t good tests. Many of the tests you mentioned aren’t ordered by doctors because they just aren’t standardized or reliable tests. It’s like paying 23andme for genetic testing instead of seeing a Genetic Counselor and running real Exome testing. Some are commercially available to patients but aren’t standardized or FDA approved tests! If your physician will not order tests, it might because they aren’t standardized, reliable tests (hair testing, saliva testing are rarely useful, folks!!). You will always have to pay out of pocket for things that aren’t approved by the FDA. No insurer is going to pay for a psychic to read your future. And they shouldn’t pay for non- standardized tests either. That’s on you, sistah!

    Keep in mind that this writer may have moved pretty far from western medicine at this point! But we are all a part of the puzzle, a part of the world and our decisions should be respected. Just make sure, as a parent, you are getting treatments that ‘work’ (clinical studies demonstrate that they are helpful and safe).

    And if you are going to try something a bit more off the beaten path, make sure it is safe and worth the money. There are many centers, therapists, even doctors who will take your money for testing, diagnosis, treatment, etc. that are unlikely to help. (There have been whole books written about the false prophets and false treatments for Autism, it is similar with ADHD!)

  2. The author wrote: “suddenly her temper would rage out of control for the least little thing”…
    The interaction between Prozac (or Paxil) and some ADHD stimulants is known to cause this kind of reaction. By blocking the metabolism of amphetimenes (Adderal, Vyvaanse, etc.) in the liver, the stimulants slowly build up to toxic levels. This can happen even if the diognosis of ADHD is correct.
    FWIW, I consider myself an Amen Clinic survivor. I spent two years and over $4000 working with them, without getting any help for my ADHD or anxiety symptoms. Your mileage may vary. But they are either on the fringe or the cutting edge, depending on your point of view, and certainly outside of mainstream medicine. As far as I know, all their SPECT scan research is in-house and self-published, outside of the peer review process. The writer doesn’t mention them by name, but it sure sounds like the way they work. My Amen Clinic doctor did catch a severe vitamin D deficiency that had already cost me several teeth, so there’s that.

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