Guest guest Posted July 31, 2000 Report Share Posted July 31, 2000 Cheryl, You will find there are MANY challenges with the CHARGE'rs when they get older and a lot of them are behaviors. It can be a rough rough road. My Mark is a real sweetie but at times his behaviors can be exhausting and he is 16 to be 17 in a month. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2000 Report Share Posted July 31, 2000 In a message dated 7/30/00 8:43:38 PM US Eastern Standard Time, cloumorgan@... writes: << A lot of days I go to bed feeling very guilty because my patient level has not been very good. Is it something that I am not understanding or has anyone have any ideas or similar problems? She really is a loving child,but I need to do something different. >> Oh, I can totally relate (even though Tryny is only 6). Tryny has these mood swings everyday, now mostly due to the seizure medications. But before the medications were so massive, he had them due to not being able to communicate his thoughts. He knew what it was he wanted to say but didn't have enough sign language words in his vocabulary to express himself so he would get " nasty " and usually vented it towards me. I can understand his frustration and why it was directed towards me, but it didn't really make it any easier. Some ways I helped him to work through his " nasty periods " was to try to avert his attention, bring out a book (his favorite past time), talk about something he really likes ( " bugs " has always been one of his favorite things) or just hold him. I found that trying to get into his mind is the key. And when it deals with " doing something he was told to do " (such as pick up toys, etc. and he would throw a tantrum) I use the 1-2-3 method. In that I tell him that if he doesn't want to pick them up right now, then pick 2 things he does want to do right now and picking up the toys will be number 3. He can do one of his " wants " , then pick up the toys, then do the other of his " wants " . That way he thinks he is getting over on me ( & he still has to do what he was told to do and didn't want to ) before he gets the other of his " wants " . It usually works like a dream. Now most of the nasty periods are from the medications and there is " no " way to avert them, I basically have to hold him in a full body hold until it passes, as they are physical nasty periods now. He still has the " tantrums " but the 1-2-3 method is still working for those, thankfully. Don't know if I have been much help, just some suggestions I have found to work. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 - You could be talking about my typical 8-yr-old son! He knows exactly how to push my buttons. Maybe what you're dealing with is just "normal" stuff complicated by the "special" considerations you've had along the way in raising Tim. You are definitely not alone in dealing with behavior issues in kids! I don't have any advice, but wanted you to know you're not alone... Michele W mom to Aubrie (2.5 yrs) CHaRgE and (8 yrs), wife to DJ, in IL west@... maria halloran wrote: Tim, thanks for the support. Tim understands everything I tell him and CAN be reasoned with, it's just he's so darn stubborn, and so am I, that we end up butting heads. And he definitely communicates well, the fresh talk is there, alot. I just need to pick my battles more carefully, and not get so frustrated. Easier said than done sometimes. For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Hi Cheryl, My name is Chip, and I'm 21 years old, I also have Charge Syndrome. Well, sometime I have that problems too. My friends and my mom usually tell me that I'm stubborn, sometime I like to do what I want. But, I guess that I'm not the patient type. Maybe Cassie get easily impatient at something, or maybe she have ADD (Attention Defeict Dosorder) In another word, Hyperactive, too much energy in herself. That happen to me all of the time! Oh Well, I hope this will help you answer your question. You can type me back at: chip0616@... Talk to you later! Chip > >Reply-To: CHARGEegroups >To: CHARGEegroups >Subject: question >Date: Mon, 31 Jul 2000 01:42:38 GMT > >I have a question for those of you that have CHARGERS that are 9 or older. >Our Cassie as she has gotten older seem to be getting more exhausting to >handle. She says things without thinking, sometimes it is either very rude >or very mean. We will tell her one thing and the next minute she is doing >exactly what we have told her not too. A lot of days I go to bed feeling >very guilty because my patient level has not been very good. Is it >something >that I am not understanding or has anyone have any ideas or similar >problems? She really is a loving child,but I need to do something >different. >Thanks Cheryl >________________________________________________________________________ >Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Hi , Yes, all children misbehave, and it is actually a good sign when our children with CHARGE start to. If they were always sweet, that would probably mean there was not a lot going on in their heads. What makes it challenging with children with CHARGE is all of the communication difficulty. Even with my two year old, when he misbehaves we can talk about it and my expectations. With (11) that is very hard to do. Hang in there. Tim Hartshorne maria halloran wrote: Hi, we have a soon to be, 5 year old, 8/15, who thinks he's at least 25, and driving us nuts. He never used to misbehave or very seldom, now it's several times a day. Trying out his independence, I guess, seeing what he can get away with, and torturing his 2yr. old brother--just to hear him scream. I guess it's natural and "normal" behavior, but I too feel guilty at the end of the day sometimes. it seems all I do is correct him and get to the point where I am yelling half the day, or he's in time out. I guess it's a problem with all kids I just didn't expect it from my sweet Timmy, who always did whatever we told him, with the exception of picking up toys. Now I get a taste of a real child and moods, control issues etc. This to shall pass----I hope!!!!! , mom to Tim 5 on 8/15, Keegan 2, wife to Pat, and due 10/8--no clues for names yet still struggling with that--it's a boy.For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Thanks to all who responded, to my questions about behavior. Part of the problem is it's summer, and we are not as much in a routine as he likes us to be. He is forever asking what we are doing next, it drives me nuts. Is Sept. 6th here yet? School, riding and pt as well as playgroup will help keep us so busy we won't know if we are coming or going, and then the baby comes and it starts a whole new ballgame. Again, thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 I was on paxil cr 12.5 and felt way to drugged up so I ask my doctor to take me off. I have no drug coverage so my doctor said just to take the CR and skip every other day then every two days and so on. She didn't want to do that but with my no insurance she did the best she could. Well I start not knowing where I was or who I was panic attacks back to back all day just about everyday and anything would set me off. I went to a holistic doctor who had a friend who help my anxiety attacks with sound therapy. But I was still feeling clueless. So I got enough money together and had my doctor write me for 10mg regular paxil and I took 10mg for a week and 1/2 and still clueless but not as much as before. Then I cut to about 8mgs and I have been on that for about 6 days now and slowly things have been getting better for I am so tired and I breaking out on my face. I think it is due to my body detoxing but I am not sure. Now I would like to start taking 5mgs a day for a week or so. Do you think that is too fast and the drop in mg is to much. Thanks, P.S. do you know what the title of the message was so I can read it I can't seem to find it ..Maybe I overlooked it. I will look again.. Thanks everyone for being there for me in my time of confusion.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 I am sorry I just found the message.. I am sorry I over looked the message #.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 : I'm sure the wierd feeling will go away, yes. I'm sure it won't be overnight. One thing that helps a lot that most people find it hard to make themselves do, including myself is excersise. Walking mainly. The few times I have done it have been my best days throughout this withdrawal process. The days I haven't have been extremely hard. Just hang in there and it will get better. Put it this way, it can't get worse. Dawn.62879@... wrote: Hello my name is . I am 26 and trying to get off paxil. I was wondering if anyone else out there get weird feelings like you don't know where you are or who you are kinda a lost and lonely feeling like things just don't feel the same as they once did? Will the weird feeling go away and will I level out soon so I can function in everyday like again? I am really afraid and confused can someone shine some light on this for me? Thanks, Yahoo! FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 Dear , You said: <<I am 26 and trying to get off paxil. I was wondering if anyone else out there get weird feelings like you don't know where you are or who you are kinda a lost and lonely feeling like things just don't feel the same as they once did? Will the weird feeling go away and will I level out soon so I can function in everyday like again? I am really afraid and confused can someone shine some light on this for me?>> ** You're not experiencing anything that isn't normal for withdrawal from and antidepressant (or any other psychotropic drug). However, I'm willing to bet that the extent to which these symptoms are present are due to a withdrawal schedule that has been too aggressive. If you are cutting more than 5-10% at a time you are going too fast. Just a few days ago I detailed for someone how to safely decrease a psychotropic drug. You can find that post by going to: http://health.groups.yahoo.com/group/Withdrawal_and_Recovery/messages [you have to be signed into Yahoo Groups to access this] At the top of the page there is a small box labeled " Message # " . In that box put the number 18252. Read this post slowly and completely for information on how to properly reduce a psychotropic drug. It doesn't matter that the drugs mentioned in the post are not Paxil. The basic way to get off one of these drugs is the same for all. Specifics can be dealt with later. Though I have no details from you on where you are in this process of withdrawal, if you are feeling the way you noted above and it's been more than 5 days since you last decreased the drug, you may want to consider raising the dose somewhat (NEVER beyond what you normally took) in order to stabilize. Without details from you(you'll see what I mean by this in the other post), I can't really tell you much more. BTW, the philosophy here is you can never provide enough details so don't ever be concerned that you are giving too many details. Welcome to the list! Please take th3e time to read the material you got upon joining and make sure you look at our other files at: http://health.groups.yahoo.com/group/Withdrawal_and_Recovery/files Regards, (co-moderator/list owner) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 , That is good you switched to the regular paxil and got off the extended release. Time release drugs are impossible to taper. However, it still sounds like you are going too fast. Paxil is very difficult to come off of. Yahoo! FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
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