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08-06-2008, 03:18 PM | #1 | ||
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locating the genes associated with the early onset of Bipolar Disorder
I just got off he phone with a lady at Johns Hopkins who I had emailed regarding a genetic study. I found the study on the CABF website and emailed to the address there and she actually called me and interviewed me a little while later. So my son and I may be going to Maryland for some genetic testing and interviews. They foot the bill. Sounds very interesting and when the testing is all over at about the end of the year they publish the results. You have to request them I believe as everyone is only referred by a number. One more interview and we should know.
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08-06-2008, 03:57 PM | #2 | |||
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Legendary
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Dear Christina,
This is pretty amazing. When do you leave? Are you driving? Mari |
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08-06-2008, 06:08 PM | #3 | |||
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Grand Magnate
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WoW! that is fantastic.
befuddled |
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08-07-2008, 08:51 AM | #4 | ||
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I have one more interview by someone in charge of the study for some more in depth questions then if she decides we are right for the study she will choose us to come there. They pay for the flight and the hotel if we stay overnight and it should be within the next month or so. They have an airline that they work with and they just get a time line that is good from us and then they make the arrangements. I told her I would prefer to fly in on a Thursday night, stay at their hotel and then next morning they pick us up for the interview and blood tests, then back to our hotel for our things, then the airport and back on Friday night. That is perfect for us as my fiance wouldn't have to take any time off of work. Kind of a whirlwind type of thing but I think it would be exciting to participate in something like that.
If we wanted we could fly in very early Friday morning and then back Friday night but I think that is just too much for my son. He needs some rest in there. He gets very impatient and cranky, nothing worse than a cranky Bipolar teen lol. Besides I haven't been out of the state in I don't know how many years so I would like to drag it out a little lol. Maybe we could see a little on Thursday night. Krikey even if I have to stand outside the hotel building snapping pictures of the facade lol. I really hope they choose us. I need some.....I don't know.....I don't dare say excitement, stuff happens when I do that lol, ooohhh I am afraid to say the words so I will leave it.
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08-08-2008, 12:55 AM | #5 | |||
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Legendary
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Hi,
Take a few extra hours or even a day. You'll need the time to rest and if you feel energetic, you'll need the time to explore. I remember that Baltimore is famous for its steamed crabs and other seafood. And you are there at a good time of year for crabs -- August and Sept. It's so cool to be part of a study. You'll learn lots of things while you are there and learn something about yourselves perhaps when they send you the results later. What does your son say about this? Do you know folks who have traveled by plane in the past year? The rules for stuff you can travel on board with got tighter. http://www.tsa.gov/travelers/airtrav...ted-items.shtm The person at Hopkins arranging your travel should be able to provide info. Also the airlines are sometimes helpful. I know about the no liquid (i.e. no water bottles) rule. And stuff like toothpaste or shampoo or handlotion have to be in a three ounce containers -- but don't take my word for it. Is he finished with summer school yet? I got my GED too. We were moving a lot because of my Dad's military. But I hated hs anyway. After the GED, I went to college and did all right. (I did not get symptoms of mental illness until I was in my 20s so I can't imagine how hard school is for someone who does have an mi.) I hope he is ok. Mari |
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"Thanks for this!" says: | houghchrst (08-08-2008) |
08-08-2008, 10:14 AM | #6 | ||
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Mari, I don't know if they would let me have an extended day. I don't see why not but quite frankly I don't think my son would tolerate it. The only reason he was amenable to it is because the duration of stay is so short. He is attached to his girlfriend right now and can barely spend an hour without her. Not to mention I don't really have the money, oh they are also paying us for the study. Only a hundred dollars each but money is money. His drug addict dad will be thrilled!
Summer school is over, yesterday was the last day. I don't know how he did, he thinks not so good. I mentioned personal curriculum to the principal and now I have people from the school crawling out of the woodwork to call me. Of course the main guy I wanted to talk to calls while I am gone and says he won't be back until the 18th, yeah, that will be plenty of time. They are telling me that if they offer the class on campus then they will not allow him to take it online and transfer credit to the school which is stupid because they are part of GenNet which is an online educational network. I don't know we will see. He is back home so hopefully we can get his meds better regulated and get his school schedule going.
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08-08-2008, 05:44 PM | #7 | |||
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Legendary
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I remember being 17 and not wanting to be away from my BF for a minute.
Quote:
These people are supposed to provide an environment for your son that helps him learn. Surely some one in your town/city would advocate for you for free. Mari |
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"Thanks for this!" says: | houghchrst (08-20-2008) |
08-20-2008, 02:44 PM | #8 | ||
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Well we got the second phone call from someone directly involved with the study and she asked me a zillion of questions re: my son from early childhood behavior on up to today and she informed that he does not sound as if he is Bipolar but more as if he suffers from Generalized Anxiety Disorder with ADHD. Who knows what else.
The inability to sleep, the grandiose thinking, just a bunch of the major symptoms were missing and then there were some that they both have in common that could be mistaken. I realized after talking with her that his current pdoc is going on a diagnosis that was made by a combination of pdoc and therapist that I wouldn't send my dog to. So I am looking forward to seeing the pdoc on the eighteenth and seeing what he says. You know, we have been through all these meds and while we have seen some relief here and there from different symptoms there was never an over all relief. He has never been on an antidepressant. Always mood stabilizers. He has been telling me for 3 years that he wanted to try an antidepressant but of course you know how leery docs are about bipolar and ADs so I never said anything, just relied on the doc. Yeah now I feel stupid and ineffectual. In the meantime our name is on a list that is open for any other studies that may come along and she is checking to see what is available now. There is one on Bipolar Disorder but they want to follow you around for like the rest of your life. No thank you lol. I am not so sure I want to follow me around for the rest of my life lol.
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08-20-2008, 07:37 PM | #9 | |||
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Wisest Elder Ever
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Wow, this is quite a story christina.
That they think that your son is not bipolar! Please let us know how your pdoc says about this...bet it doesn 't go over well. bizi
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. Hattie the black and white one wrestling with hazel, calico. lost hattie to cancer..... Happiness is a decision.... 150mg of lamictal 2x a day haldol 5mg 2x a day 1mg of cogentin 2x a day klonipin , 1mg at night I will not give up in this weight loss journey, nor this need to be AF. 3-19-13=156, 6-7-13=139, 8-19-13=149, 11-12-13=140, 6-28-14=157, 7-24-14=149, 9-24-14=144, 1-12-15=164, 2-28-15=149, 4-21-15=143, 6-26-15=138.5, 7-22-15=146, 8-24-15=151, 9-15-15=145, 11-1-15=137, 11-29-15=143, 1-4-16=152, 1-26-16=144, 2-24-16=150, 8-15-16=163, 1-4-17=169, 9-20-17=174, 11-17-17=185.6, 3-22-18=167.9, 8-31-18= 176.3, 3-6-19=190.8 5-30-20=176, 1-4-21=202, 10-4-21= 200.8,12-10-21=186, 3-26-22=180.3, 7-30-22=188, 10-15-22=180.9, |
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08-21-2008, 04:30 PM | #10 | ||
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The therapist that helped the pdoc come up with the bipolar is one that says one session after asking his first five routine questions, how do you feel, have you thought about cutting yourself, have you thought about suicide, yada yada yada, well your son seems to be doing well so we can cut our visits down to once every month or two. My son and I looked at each other and it was all we could do to not burst out laughing. So at the check out window I filled out the form to transfer. The pdoc kept wanting me to take my son to the hospital and have him admitted. They were both a couple of quacks and they agreed on the diagnosis and that is what we have been going on since.
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