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Post by DanielsMomNDad on Jul 16, 2004 23:52:36 GMT -5
Hi Everyone, I wanted to update you on our History appointment at the Amen Clinic today. It went very well. They mailed us quite a lot of information to fill out before the appointment. When we got there the Historian reviewed all of it for about 45 minutes and then brought me in for further questions and details. After about 30 minutes my husband and Daniel were asked to join us. The Historian asked Daniel some memory questions and observed him for awhile. Daniel was in full color and gave quite a performance. I don't know if this is typical for your children but, when in an uncomfortable or new situation Daniel gets really overloaded and behaves very strange (making strange noises, laughing inappropriately, repeating words, burping, etc)  . It is always difficult to see Daniel like this but on the other hand necessary for the doctors to see what he is going through. After our questions the Historian took us to see the SPECT imaging machines. Daniel was quite impressed with them and is looking forward to his appointment on Monday. We watched a video about the brain and looked at images of healthy vs damaged brains. Daniel was full of questions about how his brain is going to look. It was all very interesting. Dr. Amen says as far as using medications, "you would not repair your car without first looking under the hood, we should look at how the brain is functioning before attempting to repair it." That is exactly how I felt before with the trial and error technique the other doctors have been using. We got our magnesium and vitamin E in the mail today. Catatonic the vitamin E is Acetate from Kirkman. I am so used to seeing it in an oil. Is the acetate appropriate? I am so happy with the Kirkman brand. Both products are pure no other ingredients are present and do not contain casein, gluten, soy, wheat, corn, milk, sucrose, artificial color, flavorings, preservatives or yeast!  Even our local vitamin store had nothing that compared to Kirkman. |
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Post by catatonic on Jul 17, 2004 9:33:22 GMT -5
Are you getting medical insurance support for your Amen Clinic visit? I know our insurance is annoyingly conservative on what they'll cover...won't even pay for the developmental optomotrist!
OhMama, what's your progress been like since you went there? I'd love to hear a comprehensive update.
On the Vitamin E, overall I generally like the Kirkman Labs supplements. Synthetic Vitamin E is perfectly appropriate, but somewhat different from the natural tocopherols. The main difference is that synthetic Vitamin E contains all 8 isomers of the vitamin, whereas the natural form contains only those that are most bio-available. The result is a somewhat lower potency. A 100IU capsule of natural tocopherols will contain 67mg of bioavailable alpha-tocopherol. A 100IU capsule of synthetic Vitamin E will contain 45mg of usable alpha-tocopherol.
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Post by ohmama on Jul 18, 2004 0:31:23 GMT -5
I think I would have better results if my doctor (not from the Amen Clinic) would give me some of his precious time and attention and follow through with what the clinic recommended. He keeps trying to shove Strattera on us. I refuse to give that. We already tried it two years ago and it didn't work then, why try it again now? I can't help but think he is getting a kick back on it. It's not what the clinic says to do and doesn't even make sense with the diagnosis from the scans.
So far, the clinic said to give Depakote and I did. Oddly enough my current doctor agrees with the diagnosis from the clinic but has his own ideas on what meds to use. He did agree to prescribe the Depakote though. We are still working on the correct dose. The new dose starts tomorrow. As it stands right now I found that what I was told about treating the temporal lobe problem first made sense and it has worked to the point of my "fire boy" being more in control of his emotions and temper. The fire is almost out!!
Because of the scans, the clinic doctor was able to "see" what all the overlapping problems were and was able to give us the direction needed. His advice proved to be the best to follow. Now if only I could find a doctor who will cooperate with the recommendations from the Amen Clinic I think I would be the happiest mom ever.
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Post by songwriter on Jul 18, 2004 9:37:48 GMT -5
ohmama-
Have you checked the list of recommended docs. in the back of Dr. Amens books? That's how I found my psychiatrist.
I have not read through all your posts so forgive me if I'm asking a question that has already been addressed.
Paul
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Post by catatonic on Jul 18, 2004 9:38:00 GMT -5
Do you go back for a second set of "after" scans to see if the treatment has achieved what it has been intended to do? To me that would be fascinating to see the two side by side, and also very comforting in terms of reassuring me that treatment is working.
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Post by ohmama on Jul 18, 2004 10:24:10 GMT -5
Songman, I checked that but couldn't find any in my area. I would also like to find one that takes my insurance. Guess I'm asking too much. Cat, I would love to do this but think the expense would not allow it in my case. At least not for a while. If finances change this will be something I will do. There are before and after scans you can view at www.brainplace.com/bp/atlas/default.asp of those in treatment that did this. I hope to be able to see the results in behavior and figure if it's working I'll be convinced and can save the money. |
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Post by DanielsMomNDad on Jul 21, 2004 17:35:12 GMT -5
Hi Everyone,
Well, we went to the Clinic on Monday night for Daniel's scan. As soon as he saw the needle for the IV he totally freaked out! After many attempts and 2 hours of bribing we had to leave.
But, are returning tonight for another try. We have told Daniel he could have anything if he does this. He is very excited because I gave in and bought him 2 decks of YuGiOh cards, which have been banned from our home. He will get them tonight after the scan. Yes, I gave in, but for a good cause and it is so worth it!
Wish us luck, happy thoughts and many prayers, please.
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Post by rosyred45 on Jul 21, 2004 18:04:41 GMT -5
Good luck Danielsmomndad, They are banned at our house as well, but something that important, I would probably let the kids watch Rugrats for  And as far as the scans go, they are quite impressive to see, almost want a scan of my brain, out of curiosity of course. Yeah, then they'll tell me there's no brain or something  |
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Post by catatonic on Jul 21, 2004 18:40:53 GMT -5
Good luck. My thoughts and prayers go out to you. Let us all know how it goes.
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Post by DanielsMomNDad on Jul 22, 2004 10:44:37 GMT -5
Hi Everyone, Well, they were able to do the scan last night!!!! Daniel really tried hard to be brave and let the guy put in the IV needle but everytime he would come near his arm Daniel would pull it away. He went back and forth for about an hour until we finally decided he would not do it on his own. Tim held him on his lap in a bear hug and I held his elbow and arm straight. He really put up a fight and screamed so loud all the people in the waiting room could hear him. It was heartbreaking! But, as soon as the IV needle went in he quieted down and gave in. When he could see that it was finished he shouted "I did It!! That was all there was to it?" I am really glad we did this for him. He was really feeling like a failure and a chicken because he couldn't do it. I would hate for him to have that as his memory of our attempt. But, instead, he is thrilled with himself because he did it (with some help) and everyone is proud of him. Then he had to lay on the scan table for about 12 minutes with his head taped down. He did so good and didn't move at all which is saying a lot for Mr. Squirmy Pants. Now we just have to wait for the results. Our appointment is in September but may be sooner if there is a cancelation. Thank you for your prayers and support. I really don't know how I could have gotten through this week without prayer! My anxiety is up again and have been having panic attacks.  I hate taking the medication (Klonopin) that the doctor has prescribed so I have been trying to manage without it with much prayer and happy thoughts . |
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Post by willoweezie on Aug 6, 2004 14:58:03 GMT -5
Hi there, I don't post much here, spend most of my time at millermom's board and have a hard time keeping up with both, but Mayleng sent me a link to this post... Oh Boy! Can I relate! My daughter was scheduled for her scans in June and is highly needle phobic, after a few hours there, trying different things to get her calm enough, the doctor sat me down and said there really didn't seem to be anything else they could do to convince her to go through with it. Luckily, the new clinic they opened on the east coast is 10 minutes from my house (there was a little girl there the same day from London...imagine coming all that way and having to give up!) We resceduled for August and the scans are coming up next week. We had weaned of zoloft for the first scan appointments and I could tell S was feeling really anxious in general, so we started her on 3 mg lexapro and she's been on it for about 5 weeks. She's still saying she doesn't want to have anything to do with it, won't do it, etc. But I'm ready to resort to bribery to get this done!! The doc also wrote her a small script for Xanax and told me to give her one about an hour before we go in. I hope it works out this time!! I hate to say anything negative, because they went out of their way last time to help, and the historian spent a long time going over her paperwork and history, but I was a bit annoyed that about a month after the original appointments, they cashed my check, which I was totally not expecting!  (good thing the $ was still in my account!) If we arend successful this time and have to re-reschedule, I am going to ask for a refund until such time as we are able to have the scans done. Like I said, I don't like to be negative, because I really believe in Dr. Amen's work and knowledge, but this did bother me... but perhaps it was just an accounting error. |
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Post by rosyred45 on Aug 6, 2004 19:51:03 GMT -5
Danielsmomndad: I'm glad he made it though it  I get he same way sometimes, just the thought of things makes me chicken out of alot  Let us know what the results are, I'd love to hear them, if you don't mind sharing. Willoweezie, how ya been? If I were you, I would have fought the charges, but like you said, you believe, but think about if they really need that money, o rdo you. I hate to see people cheated out of money. An allergist refunded my money when I took Mikey for the last visit to him because I didn't like the outcome>>>>> >:(didn't tell me the insurance didn't cover it and still had to shell out $200 to his office....... Oh the things we go through Take care all!  |
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lisle
Full Member
Posts: 142
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Post by lisle on Aug 9, 2004 0:05:59 GMT -5
-Excuse my ignorance on this, but what is being injected into the child at the Amen Clinic? Is it a radioactive isotope? I have read that some studies use fmri and don't require radiation, and for some reason I thought Amen did that. Is it dangerous, maybe not now, but ten years hence? lisle
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Post by DanielsMomNDad on Sept 10, 2004 20:23:33 GMT -5
Hello Everyone, Well, we went to our appointment yesterday and are feeling quite overwhelmed by all the information. The doctor spent 3 hours with us and, thank God, he recorded much of it onto audio. The brain scan pictures were very amazing! The official diagnosis is Aspergers Syndrome with Bipolar subtype. We should be getting a thorough report in about 3 weeks with recommendations. But, the doctor did suggest Trileptal and/or Abilify. We are going to try the Trileptal first and see how it affects Daniel. We have been very faithful with the omega 3 and magnesium everyday. Making sure he is getting a lot of protien also. There has been significant improvement with these efforts. But, Daniel still seems very internal (meaning he sometimes gets stuck in his imagination, lack of concern for social appropriateness and others, and easily frustrated and irritable) and not really externally aware. The doctor hopes to the medication will help draw him out more and calm down his over reactive mind. Another concern of the doctor is a disorder called PANDAS. Lets see if I can remember....pediatric auto immune deficiency associated with strepticoi (?). We need to get a blood test to determine if Daniel has this  Has anyone ever heard of this?? I highly recommend the Amen Clinic and feel much better about the possibility of giving him medication after seeing the pictures of what is happening in Daniel's brain. Jenny |
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Post by rosyred45 on Sept 10, 2004 20:57:09 GMT -5
Hi Jenny, glad to hear you have gotten so much accomplished. If you remember I work in a before and after school program. One of our kids has been DX'd Asperger's. Believe me when I tell you that when everything started to go right it went and still is. I have known the little boy for a bit of 2 years, BUT his change in EVERYTHING is tremendous. Special Ed, his IEP, everything was better suited when they put the finger on it.
Of course now, they still have to deal with dyslexia, btu they are coping.
As far as Pandas I have heard it hear and there, but I don't personally know that much about it. I have seen it talked about here though, maybe if you when through the search here, it might help to find something about it.
Good Luck
(((((((((((hugs))))))))))))
Kaiti
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