One Mother’s Experiences With The Amen Clinics

I recently met a very insightful woman (with whom I’ve had some just as insightful conversations!) and through her I’ve learned about the Amen Clinics, one of which provided her family with help during a troubled time for her son’s mental health.

You see, the Amen Clinics are brain imaging centers that offer “brain SPECT imaging, comprehensive psychiatric evaluations and treatment,” but rather than bog you down with my own highlights about the Amen Clinics (information you could gather on your own from the website), I thought it’d be great for Jane to share her experiences with and thoughts about them.

Don’t you agree?

Then read on!

For many of us, the most frustrating part of have a brain chemical imbalance is playing Medication Roulette. Doctors list symptoms and then guess which med (or meds) might help make things better, hopefully without too many side effects.

My older son, “Jeffrey,” was 12 when he began to develop depression, anxiety, and rude behaviors. Although he was identified as intellectually gifted, at puberty his brain chemicals had become very unbalanced. A mild head injury at the playground didn’t help things, either. At age 13 Jeffrey couldn’t stand it any more; he confessed that he was hallucinating 24/7! It was totally unbearable for him. He had a short in-patient stay at Spruce Pavillion teen psychiatric ward, and we found a psychiatrist after discharge.

We took Jeffrey for an independent evaluation with a respected neuropsychologist in our area, Margaret Kay. She did a complete learning evaluation. Dr. Kay told me that the one and only med he was taking, Abilify, was not providing adequate control of Jeffrey’s symptoms AND was causing significant cognitive dulling (brain working slowly and not able to hold much information at a time). He would probably not do well without the right medication. Our formerly gifted child was flunking most classes. Dr. Kay referred us to the Amen Clinic in Reston, VA for special brain scans called SPECT MRIs.

There are four Amen Clinics in the US. Three are on the West coast; the Virginia center (near Washington, DC) is the only clinic on the East coast. We live over 5 hours away from Reston, but we were determined to go. Jeffrey (then 14) didn’t want to go; he argued that there was nothing wrong with him, and no logical arguments would change his mind. It’s hard to motivate someone to participate in his care when he denies there is a problem!

I was able to convince our private insurance company to pay for 90% of Jeffrey’s testing, which was over $3,000. It still wasn’t cheap for us. You have to be at the clinic for a few hours, three days in a row. I was self-employed and missed three days of work (my husband took paid vacation). We had to pay for a hotel room and meals for our family of four (our other son was 4 at the time).

Day 1, we did a lengthy intake with one of the employees. Day 2 Jeffrey received two types of MRIs (resting and concentration). On the last day we met with the doctor to hear the results of Jeffrey’s testing and get our questions answered. We received a ring binder with a copy of this report, plus the brain scans themselves with written interpretation, and other information on how to understand and improve brain functioning. There was a long list of treatment ideas, with contact information.

One of the first benefits was that Jeffrey stopped denying anything was wrong. He had seen his brain scans and heard the doctor. He took his meds when asked after that.

There was a very long list of things we could do to improve Jeffrey’s brain functioning. Some included a special diet; hyperbaric oxygen therapy; cognitive therapy; pharmaceutical grade fish oil supplements; and med changes. We immediately contacted a dietician to work with us.

I would love to tell you that after this we lived happily ever after and one day was better than the last. That would be a huge lie. The worst was yet to come.

Since we lived over five hours from the clinic, we needed a psychiatrist nearby to be our partner. While the man we were seeing was extremely nice and agreeable about our plan, he did not have enough time to help us make big changes. Any time you are changing meds on an already unstable person with psychosis, you should expect the unexpected. We were given new prescriptions (the ones recommended by Amen Clinic) and told to return in three months!

Jeffrey’s mental status fell apart immediately; he was extremely paranoid, hallucinating, mostly out of control, and got in trouble at school for semi-stalking a female student. Our local psychiatrist wouldn’t return calls. I called the Amen Clinic in VA, in desperation. The first time the doctor was nice; the second time he told me in an unkind voice to not call him again. When we finally got in to see our own psychiatrist (took a week to get him to call us) he said come back in six months! I was flabbergasted.

We had already begun looking for a new psychiatrist and had an appointment with him (recommended by Jeffrey’s Mobile Therapist). But it wasn’t fast enough. By then Jeffrey had to be admitted to an in-patient psychiatric facility for teens. A friend recommended KidsPeace.

The doctor there refused to read the report from the Amen Clinic: “I don’t have time for that!” He thought he was God, so the brain scans and the Amen Clinic report were a bunch of crap to his way of thinking. That doctor proceeded to incorrectly diagnose Jeffrey; the main diagnosis was Asperger’s Syndrome, a form of autism. I told the doctor that I work with autistic children, and Jeffrey did not have autistic behaviors as a child so he couldn’t suddenly become autistic as a teen (after he developed psychosis he would sniff objects and show other autistic-like behaviors, but that doesn’t make one autistic). After 11 days we took him home against medical recommendation.

What followed were two months of suffering, a Hell I never knew could exist, called Living With An Out of Control Psychotic Person! The new psychiatrist worked with us closely, even gave us his own cell number. At the end of those two months I thought Jeffrey should be admitted to the teen residential facility where our psychiatrist worked. The three of us living with Jeffrey were exhausted, depressed, and anxious.

He suggested that we try changing meds from the ones prescribed at KidsPeace. We changed to Lithium, and stayed with the Seroquel the Amen Clinic had started him on. In only two days there was a positive change. After a month I cried tears of joy when I was able to have the first normal conversation with Jeffrey in quite a long time.

Over the next year, as Jeffrey’s brain recovered, he gradually returned to normal! Amen Clinic diagnosed him with ADD and recommended a med they thought was compatible with his type of ADD, as shown on the brain scan. Our psychiatrist wanted to try two other meds first, because they were non-stimulants. They made Jeffrey feel worse after only 2 doses. Since he was stable, he knew the difference. We started the med recommended by Amen Clinic, and it was perfect!

Jeffrey has been stable for almost two years. He has felt and acted normally for the last year ( the ADD med perked him up and compensated for the other drugs that made him tired). He had mostly B’s last school year and is learning to drive.

We are still using the results and the report from the Amen Clinic as a guide to what will help Jeffrey improve even more. Now that he is 16 and more mature he is willing to try things and stick with it long enough to see if they will help. He has started to exercise recently and is trying the fish oil, even though he’s a life long vegetarian. He is thinking of trying hyperbaric oxygen therapy over Christmas break, which means giving up a lot of free time with friends. That was his own idea, not mine. His goal is to improve his lifestyle enough to be able to decrease his medication levels a bit. They make him very thirsty. But he ALWAYS takes his meds, because he wants “to feel normal.”

SUMMARY:

• Amen Clinics are a place to get real answers about brain-related problems. If you live near one of the clinics you are incredibly lucky and should do what ever you have to do to get the money for the brain scans and follow-up care at the clinic! Have fund raisers. Have yard sales. Call Wal-Mart about donations. Have your doctor write a letter of medical necessity to the insurance company (that’s what we did). Get in the local newspaper. Humble yourself and ask people for money. It’s a medical problem when brain chemicals are not working properly!
• I strongly urge you to avoid fast med changes no matter how excited you are to try it, and no matter how much any doctor (even at Amen Clinic) urges you do to so. My son, and other teens/people I have read about, is very sensitive to new meds.There is that “recommended starting dose,” but Jeffrey does best when he starts with half of that. In the beginning of his illness the doctors wouldn’t believe me, none of them. When we got to the last psychiatrist (the GOOD one) I convinced him that Jeffrey would be totally destabilized unless we went about half as strong and half as fast as the average patient. And by following that course, all has gone well.
• Never give up! There are some great resources out there, but you have to keep looking and asking around.

© “Jane”

Stay tuned later today for a list of mental health websites and forums Jane recommends!

Image: SXC