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Post by weskie on Jun 9, 2004 9:10:37 GMT -5
Hi, I just bought Dr. Amen's book "Healing ADD" yesterday. Although I have two kids with ADD, DD 25 and DS 21, Dr. Amen's work is new to me. DS, 21, still has major problems with ADD. He has seen psychopharmacologists and has tried many different combinations of drugs (starting in third grade), and he is--and has been--in therapy off and on since first grade. Still, he is depressed, discouraged, and isolated. (It sounds like he has "limbic" ADD.) He just doesn't know how to make friends. Though he can be difficult, he is greatly loved at home, and it makes me so sad to see him struggling. Does anyone know of a doctor in the Boston area who is trained in the Amen approach to ADD? The book doesn't list any local doctors. Has Dr. Amen's approach helped someone in your family? Any and all help would be appreciated....  |
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Post by catseye on Jun 9, 2004 10:01:40 GMT -5
I believe Ohmama, has had quite a bit experience in dr amens approach... Ring of fire I believe is the type ohmama is dealing with... Hopefully she will see this post... Good luck!
cat
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Post by ohmama on Jun 9, 2004 10:56:08 GMT -5
weskie, Have you looked at Dr. Amen's website? www.amenclinic.com There is a new clinic that opened in Reston, Va. that serves the entire east coast. I'm sure if you called them they could refer you to someone in the Boston area that is familiar with the Amen approach or possibly has SPECT imaging equipment so you wouldn't have to necessarly go to the Va. clinic. The listed number is 703-860-5600. I went to the clinic in Fairfield, Ca. This is closest to me (about 6 hours away) and found it was so worth the drive and the cost. My son has been correctly diagnosed with overlapping disorders that the standard doctor (or even one who specializes in add/adhd like we had been seeing for years) would have probably never been able to see or put together. This is the advantage of the brain scans. You get the correct diagnosis. You can see it for yourself on the scans! It's amazing, scary and wonderful all at the same time. Armed with this you now have the key to a proper treatment approach. The guess work is taken out of it as far as knowing what is really wrong. This narrows down the medication issues also. It is more involved than I ever realized as to what meds to give as well as in what order to give them. It all makes a big difference. It has changed my sons life and given us hope even though I was devistated to find the dx of ring of fire at least now I know and can work toward helping him. |
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Post by weskie on Jun 9, 2004 21:58:21 GMT -5
Thanks, Cat and ohmama! I went to the website and looked for doctors in New Hampshire, Maine, Vermont, Massachusetts, and Connecticut...I got one name in Connecticut, Dr. Henry Mann in Stonington. That's only about 1 1/2 hours from me...but I'll try calling the clinic in Virginia to see if they know anyone else. At this point I feel as if we've tried everything (I'm sure you all know the feeling!), and I am willing to travel even to Virginia if we could get some real answers! Ohmama, when you went to the California clinic, did your son have the brain SPECT imaging? I'm heartened to hear that you think the clinic was totally worth it!! Did insurance pay for it or did you have to pay? I'd love to hear more about it!  |
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Post by ohmama on Jun 10, 2004 0:40:49 GMT -5
Yes, he had the entire evaluation. It took 3 days total. There were 2 scans, 1 was called the baseline or resting scan that showed the basic brain health. Then the active scan that showed what was going on in his brain when he was involved in an activity. By comparing the two they were able to see a complete picture of what happens with him when he tries to do something. It's a little hard to explain but I believe there are some details given in the books, "Change your Brain Change Your Life" and "Healing ADD". You can also see some pictures of the various scans on his website of the different conditions.
Having a doctor that will work with you on this is great! An hour and a half drive is not bad. A lot of the doctors won't give these scans any credit. They call it experimental and dismiss it. The more you look into it I think you will see there are politics involved.
The total cost was $3,000 and it was the best money I have ever spent. It wasn't covered by my insurance but from what I have been told some insurances will cover it. Any meds or blood work would be covered by your insurance though.
Let me know if I can answer any questions.
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Post by weskie on Jun 10, 2004 11:32:20 GMT -5
Your experience is inspiring! I'm definitely going to pursue this. I'll let you know what happens!! |
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lisle
Full Member
Posts: 142
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Post by lisle on Jun 10, 2004 23:32:53 GMT -5
Oh Mama:
sounds as if things are going well for you? I am curious what meds you wound up using and what you meant by the order in which you use them matters. Are you referring to using a mood stabilizer before a stimulant or other adhd drug? Please clarify.
Thanks,
lisle
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Post by ohmama on Jun 11, 2004 0:38:03 GMT -5
Lisle,
I am giving my "fire boy" only Depakote at this point. The dose that is working is 750mg, this brings his blood level up to a more therapeutic level of 62. I found out only after going to the clinic that since he is in the bipolar range it would be necessary to stabilize the temporal lobes before adding any other med.
It seems our behavioral ped only wanted to give a stimulant. All he was able to recognize was the adhd. When this didn't do any good and in fact made his symptoms worse I was told to increase the dose!! Big mistake, this would only make his condition worse. I'm glad I didn't listen to him but instead went to the clinic and got the real diagnosis from the scans.
Now that the temporal lobes are stable it is safe to add a stimulating antidepressant to enhance prefrontal cortex function and calm limbic hyperactivity. I'll do this when school starts again in Sept. We may have to add a psychostimulant if there remain signifgicant attentional difficulties and/or hyperactivity after improvements in the mood and behavioral problems have been addressed with the two prior medications.
The order of what was needed first with his treatment made all the difference in the world. I wonder how long it would have taken our doctor to get it right? From reading Dr. Amen's books I see this needs to be a consideration with other disorders too.
They also gave me dietary strategies and nutritional supplement recommendations that I am happy to say I had been using all along. There was advice that went into what school accommodations and help I should be asking for. Also sleep strategies, exercise, and biofeedback.
I was told that given this pattern of symptoms and scan findings, there is hope for significant improvement with a combination of medication, diet, and therapy to properly optimize brain function. The progress has been slow, mostly due to not having a doctor that will follow the simple instructions from the clinic. I am still in the process of finding a new doctor now.
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