Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 In a message dated 11/19/2006 2:50:44 PM Eastern Standard Time, olydani@... writes: > He is now 15 years old and within the last month he has begun to show signs > of aggression. He is not only going after other people but he is hurting > himself. I was hoping someone out there may have had similiar experiences and if > so, how did you handle it? He has limited language but he does do some sign > language! However signs about emotions and pain is something he has never > understood. > Dani, We started to go through this same thing with my son Mark now 23. The sad thing is that he still has this problem but has gotten slightly better. He did show marked improvement in the self abuse after starting a medication called Trazodone. He has broken in own hand hitting when he is upset. He did also hurt his hand again last week which was frustrating. My son will go off at times and we are not sure what has triggered it. He used to smack his forehead severely but has slowed down a bit on that. It is almost like they can't help themselves. I know this isn't much help but it is common in Charger's as they get older. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 Hi, my name is Dani. I have been working for the last four years with a boy with Charge. He has come so far with his education and his social skills. He is now 15 years old and within the last month he has begun to show signs of aggression. He is not only going after other people but he is hurting himself. I was hoping someone out there may have had similiar experiences and if so, how did you handle it? He has limited language but he does do some sign language! However signs about emotions and pain is something he has never understood. He is such a GREAT kid and I hate to see him go through this. Things that he used to enjoy, he doesn't want to do anymore. I don't know if this is common for teenagers with Charge or not. Any advice you could give me would be greatly appreciated! Thanks, Dani --------------------------------- Sponsored Link Mortgage rates near 39yr lows. $420,000 Mortgage for $1,399/mo - Calculate new house payment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 Dear , Thank you for your reply. I will pass on the medication recommendation to my students mother. She if very hesitate to put her son on medication but maybe with proof that it has helped other children with Charge, maybe she will consider it! Like your son, my student will take his closed fist and hit his head hard. It is so hard to watch him hurt himself and not know what is causing him to be so angry! I am encouraged by your sons progress on the medication. Thank you! ~Dani KAV427@... wrote: In a message dated 11/19/2006 2:50:44 PM Eastern Standard Time, olydani@... writes: > He is now 15 years old and within the last month he has begun to show signs > of aggression. He is not only going after other people but he is hurting > himself. I was hoping someone out there may have had similar experiences and if > so, how did you handle it? He has limited language but he does do some sign > language! However signs about emotions and pain is something he has never > understood. > Dani, We started to go through this same thing with my son Mark now 23. The sad thing is that he still has this problem but has gotten slightly better. He did show marked improvement in the self abuse after starting a medication called Trazodone. He has broken in own hand hitting when he is upset. He did also hurt his hand again last week which was frustrating. My son will go off at times and we are not sure what has triggered it. He used to smack his forehead severely but has slowed down a bit on that. It is almost like they can't help themselves. I know this isn't much help but it is common in Charger's as they get older. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 Dani, In addition to 's great advice, my guess is that other parents will also chime in regarding medications. Many of the kids and young adults need them--all related to the neurological/biological issues related to CHARGE. Good luck and your " guy " is lucky to have you! pam Re: Teeanage boy with Charge Dear , Thank you for your reply. I will pass on the medication recommendation to my students mother. She if very hesitate to put her son on medication but maybe with proof that it has helped other children with Charge, maybe she will consider it! Like your son, my student will take his closed fist and hit his head hard. It is so hard to watch him hurt himself and not know what is causing him to be so angry! I am encouraged by your sons progress on the medication. Thank you! ~Dani KAV427@... wrote: In a message dated 11/19/2006 2:50:44 PM Eastern Standard Time, olydani@... writes: > He is now 15 years old and within the last month he has begun to show signs > of aggression. He is not only going after other people but he is hurting > himself. I was hoping someone out there may have had similar experiences and if > so, how did you handle it? He has limited language but he does do some sign > language! However signs about emotions and pain is something he has never > understood. > Dani, We started to go through this same thing with my son Mark now 23. The sad thing is that he still has this problem but has gotten slightly better. He did show marked improvement in the self abuse after starting a medication called Trazodone. He has broken in own hand hitting when he is upset. He did also hurt his hand again last week which was frustrating. My son will go off at times and we are not sure what has triggered it. He used to smack his forehead severely but has slowed down a bit on that. It is almost like they can't help themselves. I know this isn't much help but it is common in Charger's as they get older. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 My son is 24 and he goes through phases of hitting himself, i.e. slapping the right side of his face and using his fist to hit his head, biting himself. I have tried various medications and the one that has worked the best for him has been Naltrexone. I can't leave him on it for long periods, as it diminishes his appetite, but it works well during his phases after I have ruled out/or treated any illness. I have learned that most of his is brought on by constipation. That is the first thing I determine. I track his bowel movements. My son too is limited in vocabulary, being non-verbal. It is very frustrating to see your child hurt themselves, when you have done everything you can think of to no avail. I am finally now going to have a team with a behavioral specialist and OT that does sensory integration work together to help my son, and help me help him. My prayers are with you. Have a happy Thanksgiving. - Mom to ph 24 - cHaRGE'r Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 I forgot to mention too that my son also doesn't do what he used to enjoy either. It's like we lost all of it and I don't know how to get it back. - Mom to ph 24 - cHaRGE'r Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 dani i and many other chargers have done this to soem atribute this to pain has he got pain anywhere with me i used to get bad tummy probs but once they put me on sipramil years ago now my anzious hair pulling all that stopped well still do it but not as much LOL other things can b heat and stuff liek that ellen 21 year old charger aus > > Dani, > In addition to 's great advice, my guess is that other parents will > also chime in regarding medications. Many of the kids and young adults need > them--all related to the neurological/biological issues related to CHARGE. > Good luck and your " guy " is lucky to have you! > pam > > Re: Teeanage boy with Charge > > Dear , > Thank you for your reply. I will pass on the medication recommendation to > my students mother. She if very hesitate to put her son on medication but > maybe with proof that it has helped other children with Charge, maybe she > will consider it! Like your son, my student will take his closed fist and > hit his head hard. It is so hard to watch him hurt himself and not know what > is causing him to be so angry! I am encouraged by your sons progress on the > medication. Thank you! ~Dani > > KAV427@... <KAV427%40aol.com> wrote: > In a message dated 11/19/2006 2:50:44 PM Eastern Standard Time, > olydani@... <olydani%40yahoo.com> writes: > > > He is now 15 years old and within the last month he has begun to show > signs > > of aggression. He is not only going after other people but he is hurting > > > himself. I was hoping someone out there may have had similar experiences > and if > > so, how did you handle it? He has limited language but he does do some > sign > > language! However signs about emotions and pain is something he has > never > > understood. > > > > Dani, > We started to go through this same thing with my son Mark now 23. > The sad thing is that he still has this problem but has gotten slightly > better. > He did show marked improvement in the self abuse after starting a > medication > called Trazodone. He has broken in own hand hitting when he is upset. He > did > also hurt his hand again last week which was frustrating. My son will go > off at > times and we are not sure what has triggered it. He used to smack his > forehead severely but has slowed down a bit on that. It is almost like > they can't > help themselves. I know this isn't much help but it is common in Charger's > as > they get older. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 , Will you let us know what happens at/after the consult with the Behavior Specialist and OT? I know for many of our kids (still in school, ages 3 to 22 but those that have graduated, too) these issues persist and also wax and wane. During their school careers here, we have the on-going benefits of OT, Behavior, consulting psychiatrist, etc., but once school is over, it becomes another story and one where parents often start all over again. I would love to hear your results and what you think, etc. > > > -- Pamela J. , M.A., CAGS Licensed Educational Psychologist Deafblind Program Perkins School for the Blind 175 N. Beacon St. Watertown, MA 02472 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 Pam, I will be happy to let you know what happens with the consults. We have added the Behavior Specialist to 's Medicaid Waiver, and she will see him at least once a week, I found out she also works with an adult female here in town with CHARGE. I didn't know there was anyone else in this town with CHARGE. I am so anxious to meet her, and the behavior specialist is going to see if that can happen. Just so the OT can bill for sensory integration, she has to put it down as " motor incoordination " , because Medicaid doesn't pay for sensory integration (like that's a surprise). I am very excited about the prospect of getting the therapy he needs and the support I need. Being a single parent with this amount of responsibility can be overwhelming, especially when I am taking on the added responsibility of caring for my 94 year old aunt with dementia, who is moving in. It may be January before I will get the meeting in place, as we are waiting for the new Plan of Care to be approved. It is suppose to start January 1. Thank you for your interest, and I look forward to telling you how it's going. - Mom to ph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2006 Report Share Posted November 21, 2006 I'm late joining this thread - and pardon my lack of experience - I've only been a CHARGE mom for 6 years - but this all sound like it could be pain related. Why would it just start up? 's self abuse and aggression is so directly related to sinus/ear infections. She currently has a sinus infection near her brain and the only way we can diagnose it is through multiple CT scans (she's having surgery for it on Monday). One of 's therapist is pushing hard for behavior meds but I'm scared to death of them because this behavior and vomiting are the only signs I have that she is hurting. 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 Teeanage boy with Charge Hi, my name is Dani. I have been working for the last four years with a boy with Charge. He has come so far with his education and his social skills. He is now 15 years old and within the last month he has begun to show signs of aggression. He is not only going after other people but he is hurting himself. I was hoping someone out there may have had similiar experiences and if so, how did you handle it? He has limited language but he does do some sign language! However signs about emotions and pain is something he has never understood. He is such a GREAT kid and I hate to see him go through this. Things that he used to enjoy, he doesn't want to do anymore. I don't know if this is common for teenagers with Charge or not. Any advice you could give me would be greatly appreciated! Thanks, Dani --------------------------------- Sponsored Link Mortgage rates near 39yr lows. $420,000 Mortgage for $1,399/mo - Calculate new house payment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Lori, You've voiced something more directly than I've been unable to articulate. , too, has " behaviors " when she feels pain. I hate it, but the self abuse over the years has been THE way to determine that there's an ear problem, etc. For the first time in months upon months, was crying (a new sign?) and hitting herself today. She told me (still won't tell her aides) that her stomach, " bm " , and ears hurt. I think it's just very hard for our kiddos, but we must respect and pay a great deal of attention. Martha Quote Link to comment Share on other sites More sharing options...
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