Guest guest Posted June 19, 2005 Report Share Posted June 19, 2005 Hi Sheryl, I don't have a lot of time to post, but I do try to read and keep up with everyone. I had to take a minute to let you know that I think you are on the right track with concerning her meds. Four years ago when Jeff was having severe behavior problems, the neuro psychiatrist recommended exactly what you are doing. He gradually took him off all medications so they could look at his base behavior. Once having done that, they would introduce one medication at a time, that way they could determine it's effects on Jeff. Fortunately for Jeff and us, it worked for him. I hope you and get the same results. Wishing you the best in finding what will help her the most. Smiles from Baker - Mom to Jeff (20 yrs. CHARGEr), Steve (22 yrs.attending BYU-Provo), and others married with families of their own, providing me with four handsome and active grandsons, and two beautiful, curly haired granddaughters - one a special angel with CdLS. Preston, Idaho, USA http://www.caringbridge.org/me/jeffbaker [spam] Re: going off of meds---help!-Bonnie > Bonnie- > > I agree that meds can't fix. I have seen some work and some not work > and it is horrible when that happens. I have hope that the meds don't > change 's abilty to function, but give her the ability to > function with minimal frustration. You are fortunate that Patty is > verbal and can express what is going on. I listen to your posts with > great interest as I sometimes wonder what Patty is expressing might be > what is feeling. > > I felt that by going off of all the meds would give me a baseline of > " who " really is again and what areas do I need to address. I > felt that if I just started to change I wouldn't know if the new med > was the cause of it not working or it it the mix with what she is > already on. In the past, we have always tried replacing but I didn't > feel that was the best move this time. Jess maxes out on meds very > quickly as we start with a low dose and then to keep them working we > have to keep increasing them so often. If I can find another good > mix, I might have a chance that once she maxes out on these, we can go > back to the other mix we knew worked and see if the low doses can be > effective again. > > I'm glad you mentioned Quanfacine and Lexipro. Those two were > mentioned by the psych when we discussed this med change. We'll see > how this goes. Her 1:1 at respite this weekend called this afternoon > and said that she was having really high highs and very low lows > today. But, she said the highs are outweighing the lows for today. > Lacey is great with her and I trust that she is being well taken care > of this weekend. > > Anyway, I will keep you posted on how this goes. I'm glad Patty is > starting to feel better. > > Sheryl > Mom to Mitch 19 & 18 CHARGEr > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at www.chargesyndrome.org or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
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