Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 -Hello. My name is Elvia, mother of Alyssa, 8mo. I was reading your message and wanted to know when did your daughter start being aggressive? Is there such thing as starting very early. I know my daughter is very young, but, she seems to get very angry, she hits her head with her fists, pulls her hair, bangs her head,etc. Are these some of the things your daughter did? Are these signs? I have 3 other children and do not recall them behaving like this. Should I be worried? -- In CHARGE , CARL SIEBER wrote: > > has been on three different meds for her behavior. First, we tried Abilify which kept her up at night and made her feel comatose, the second one was generic Cylexa which made her more aggressive, and now she is on Resperdal, which also seems to amplify her aggressive and obsessive compulsive behavior. I just don't know what to do. I know every CHARGE kid is different, but is there anyone out there who has been there done that? is 10 1/2 years old and this is our first try on any meds for her behavior because things were really escalating fast. I do homeschool her so therefore, we are together 24/7. I am trying to get her into a school that will meet her needs (which we all know is very difficult). I have been homeschooling for 2 years now and am quite burnt out! She is very smart, but needs a different approach with things. She reads and writes and gets on the computer. The reason I HAD to homeschool her was because our school system failed her in a > big way, and I was so exhausted from fighting the system. She loves to be with other kids and I feel guilty that she cannot be with them as much as she would like to. She was in the public school system here in Florida in a deaf-ed program, and they could not or would not deal with her. I tried to fight for an intervener to no avail. No one here even knows what an intervener is! Florida is so far behind!!! Anyway, that's my story (sorry it's so long!) > > Thanks for listening. > > Sieber (Mom to CHARGER 10 1/2 years old) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 Elvia, I remember so little about infant development and won't comment on that. I do know, however, that the outward " symptoms " you describe correlate perfectly with what we saw from a very early age when our daughter was apparently in pain (almost certainly from her ears at that point). It was many (too many) years later that we saw the correlation between anger, self-abuse and pain. You haven't been on list long enough to know that often exhibited (oh, may it be the past tense) these behaviors days or weeks before a dr. could see the problem. In other words, we were often told things such as, " oh, that's just ; the ears look pretty good for . " Humbug. I'd hit the pain possibilities hard and don't give up. is now 22, and it's taken an ever-growing faith in what she's saying by her pain behaviors to allow adults to help her. My hope is that this understanding from parents of older CHARGE kids will make it easier for new parents to pound the table just a tad while explaining the pain problem that seems to go along with CHARGE. Martha By the way, should you discover that ear infections are the problem, I strongly urge you to buy a professional otoscope and get to know your child's ears intimately on almost a daily basis. That's how we became convinced of the problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 Bear with me - I lost much brain ability when was born! I do remember her hitting her forehead and pulling the hair on the top of her head and I always thought it was pain related. When she was between 2 and 3 years old she was diagnosed with cyclical vomiting and migraines - she would hit her head and scream when it was bright. I still believe that her aggression areas derive from where she hurts (her head and eyes / sinus pain). She would also vomit when an ear infection or something was coming on. I have gotten to understand her " sick " body well and use those signs to get her to the pediatrician before the infection starts raging (low patience tolerance, fit and cry easily, very tense)! Another funny thing used to do when she was getting sick was refuse to take off her pj's. (She did it yesterday!) 's pediatrician has learned to trust my instincts and these signs from . Unfortunately for us it takes a CT scan to diagnose a sinus infection! I would follow the advise of Martha and check these behaviors out - it sounds to me like you have a child who is in pain. Lori Myers Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (4). Dallas, Texas ...... Re: Antipsychotic Drugs -Hello. My name is Elvia, mother of Alyssa, 8mo. I was reading your message and wanted to know when did your daughter start being aggressive? Is there such thing as starting very early. I know my daughter is very young, but, she seems to get very angry, she hits her head with her fists, pulls her hair, bangs her head,etc. Are these some of the things your daughter did? Are these signs? I have 3 other children and do not recall them behaving like this. Should I be worried? -- In CHARGE , CARL SIEBER wrote: > > has been on three different meds for her behavior. First, we tried Abilify which kept her up at night and made her feel comatose, the second one was generic Cylexa which made her more aggressive, and now she is on Resperdal, which also seems to amplify her aggressive and obsessive compulsive behavior. I just don't know what to do. I know every CHARGE kid is different, but is there anyone out there who has been there done that? is 10 1/2 years old and this is our first try on any meds for her behavior because things were really escalating fast. I do homeschool her so therefore, we are together 24/7. I am trying to get her into a school that will meet her needs (which we all know is very difficult). I have been homeschooling for 2 years now and am quite burnt out! She is very smart, but needs a different approach with things. She reads and writes and gets on the computer. The reason I HAD to homeschool her was because our school system failed her in a > big way, and I was so exhausted from fighting the system. She loves to be with other kids and I feel guilty that she cannot be with them as much as she would like to. She was in the public school system here in Florida in a deaf-ed program, and they could not or would not deal with her. I tried to fight for an intervener to no avail. No one here even knows what an intervener is! Florida is so far behind!!! Anyway, that's my story (sorry it's so long!) > > Thanks for listening. > > Sieber (Mom to CHARGER 10 1/2 years old) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 .....and may I add here that Martha and Andy's skill with the otoscope saved many a bad day and ear infection. They are so proficient that they know the slightest color change in her ears can signal something coming and get treatment for it to save everyone the pain and heartache. pam Re: Re: Antipsychotic Drugs Elvia, I remember so little about infant development and won't comment on that. I do know, however, that the outward " symptoms " you describe correlate perfectly with what we saw from a very early age when our daughter was apparently in pain (almost certainly from her ears at that point). It was many (too many) years later that we saw the correlation between anger, self-abuse and pain. You haven't been on list long enough to know that often exhibited (oh, may it be the past tense) these behaviors days or weeks before a dr. could see the problem. In other words, we were often told things such as, " oh, that's just ; the ears look pretty good for . " Humbug. I'd hit the pain possibilities hard and don't give up. is now 22, and it's taken an ever-growing faith in what she's saying by her pain behaviors to allow adults to help her. My hope is that this understanding from parents of older CHARGE kids will make it easier for new parents to pound the table just a tad while explaining the pain problem that seems to go along with CHARGE. Martha By the way, should you discover that ear infections are the problem, I strongly urge you to buy a professional otoscope and get to know your child's ears intimately on almost a daily basis. That's how we became convinced of the problem. Quote Link to comment Share on other sites More sharing options...
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