Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 , Behaviors are definitely a problem for the older CHARGER. I think some of the same traits which enable our kids to endure so much when they are small turn into the stubbornness as they get older LOL. On a serious note I had the same problems with my son now 15. His current medications are Depakote-to keep him on a more even keel, and Catapres to slow him down to a more normal pace. They have helped him a lot. I was finding that aside from being so stubborn if he did become upset he could escalate quickly and become self abusive which really tore me up inside. He will occasionally stomp around but more easily settles down. Unless he doesn't feel well then LOOK OUT! V. Mom to Mark 15. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 , Hi there! I hope you can find some answers to 's difficulties at school, I won't be much help as Kennedy is only 14 months old. I have to tell you though, that the room you described scares the heck out of me, I think I'd have to teach her at home before letting someone put her in something like that! I don't blame you for feeling " no " ! Anyway, Kennedy is not on any behaviour drugs but I'll give you her meds... Propranolol <heart regulator> .45ml twice a day. This is a really miniscule amount, she is actually outgrowing her dose right now. Docusate <stool softener> She only gets this occasionally when needed. That's it for now! We used to do cisapride & zantac as well but she's been off them for quite a while now. Good luck with getting things sorted out, I hope you write back and let us know how things turn out. Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >Hello all: > >This past school year my daughter 's behaviors have negatively >impacted her education. She had a complete deafblind educational >evaluation at Perkins (Boston) School for the Blind in September. Many >recommendations have been incorporated into her program at the American >School for the Deaf here in CT. She has a wonderful team of educators and >support service providers, yet they are hard pressed to find a strategy or >behavior modification program that works. > >Her behaviors include impulsivity (i.e. entering a room and knocking things >off the table because she thinks it is funny), perseveration (insisting of >talking about the months of the year, holidays, in the middle of reading a >story with her class), and refusing to transition to another activity when >she is given lots of information to help her anticipate the change. She >has also approached other students and shoved them thinking it is funny. >She will explain why these things are " bad behaviors " and she will " try >again tomorrow " but she doesn't seem to have the internal " OFF " switch in >order to control these impulses. We have tried music, all sorts of >motivating reinforcement, yet she really seems to struggle with these >behaviors. Like many of our kids she is a very loving child and a part of >me feels that maybe a medication could help ease these impulses. Another >part of me says, " Don't jump the gun! " > >The school called me asking to give them permission to use the time out >room. This is a padded, locked room with one small window which is up on >the door much higher than she is. It can be bolted closed. I am so afraid >of her reaction, I think she would be frightened. I told them I would >think about it over the next week because the kids are on vacation. This >really needs to be a PPT decision, but they told me they could use the room >with my permission. It sounds extreme, yet it would definitely pull her >away from to much stimulation if she is having difficulty integrating it >all. I just worry about her initial reaction. A big part of me says " no " . > >I don't write on the list very often but I read all messages. I know that >'s sensory impairments greatly impacts her behaviors but no one seems >to be able to decifer what her behaviors are telling everyone. They have >tried many different interventions and I couldn't ask for a more caring >group of people working with her. > >She has an appointment with her pediatrician this week. We also saw a >developmental pediatrician for her first five years, but he moved to Yale >New Haven hospital. I made an appt. with him because he has many kids with >CHARGE as patients. He was always there those early years with the right >decisions, he never steered us in the wrong direction. He can't see us >until June. I'm going to have my pediatrician call him so maybe we can see >him sooner. > >This is my question. Many people mention different medications, but do we >have some sort of listing of the major medications our kids are on and the >reasons for taking them? I'm wondering now, " what works best for our kids " >so that if her MD's suspect some type of chemical imbalance, ie. >serotonin?, then what might work best? And because so many different >medications interact with each other, what meds work best when it is >necessary to take them with other meds such as heart, seizure, respiratory, >GI meds, etc.. Basically, I don't want to reinvent the wheel and I know my >MD's always consider any input I can bring to the table. I would like to >compile my own list using our listserver and you can do the same if >interested. Maybe an entry could include your child's age, medication, >dose, and reason for medication. Many medications are mentioned on our >listserver, but they are usually scattered throughout many messages. I >have read that some of you want to seek out medication info on the net or >in books. Perhaps it would help to have a concise list to discover just >what our kids respond well to. Looking forward to hearing your replies. > >My list includes: >Pepcid 20mg G-tube twice/day for reflux >(for a period of 6 months only* she used Prevacid (lansoprazole) to heal an >esophageal ulcer - *this medicatin carries a risk of cancer) >Flouride 1mg daily - we have a well - no flouride in our water supply >Tums 1 extra strength daily - as a supplement because she is allergic to >all milk products >Osmolite RTU (ready to use) adult soy formula 5 cans daily given in (6) >bolus tube feedings throughout the day. She also eats blended, milk free >diet for meals > >Thanks in advance of your responses! Garewski >wife to Jeff, mom to Dan 14, Ali 11, and 8 CHaRGE (no atresia, but >cleft palate and choanal stenosis) > > >------------------------------------------------------------------------ >You can now easily share photos and documents with your fellow list members >http://www.ONElist.com >Check out our homepage for details on how to use our new shared files feature! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 , Wow, your plate is really full w/ ! Destiny, my 6 yo w/ CHARgE, has many of the same acting out problems, but on a smaller scale. She is not dealing w/ deaf/blind issues (no colobomas, but cranial nerve damage w/ swallowing problems) so when she acts out like that I have come to realize that she is having a personality conflict w/ the teacher. It has happened twice. When we changed teachers to a less domineering personality she calms right down. You are not alone w/ 's problems--from what I have gathered many Chargers act out this way. I do not have any suggestions as to how to deal w/ 's acting out except to say I will always be here to listen to you w/o judgment. When Destiny was really bad many people looked at us like what are we doing to cause this--even members of our own family (yeah, like I enjoy watching my child act out hurting herself esteem and others!?!). What ever you decide about the time out room is up to you. One thing someone said to me that made all the difference was that when she acted out she was trying to tell me something. She didn't have spoken language yet so she had to tell me in other ways. It took me YEARS to realize she was " saying " in her own way " I'm unhappy. Get me out of here. " I do not know what may be trying to tell you, that was just Destiny. Anyway, to answer your question--Destiny (6) takes Albuteral and Vanceril inhalers for asthma, 2 puffs each twice a day. She's been taking them since she was 2 3/4 years old. Hope this helps. I'll be thinking of you. You and are not alone. (Destiny 6 CHARgE, Zachary 4) NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 , I am continually amazed at how similar the problem behaviors are in many of the CHARGE children. I realize the connection to " dual sensory impairment " but in some cases the behaviors are incredibly similar yet the types and severeity of sensory impairment are not! This is an area I would really like to see addressed, either by a survey or as you say, a study of medications that seem to work. My son is now 12 years old and also knocks things down and laughs, slams doors, is obsessed with his " calendar " and other things. Several years back, we finally decided to try medication since, like you, all behavioral techniques failed. He was becoming more and more out of control and the behaviors were affecting his ability to learn. He was very frustrated and extremely unhappy. At first the behaviors were classified as autistic-like but now it is pretty obvious they are actually Obsessive-Compulsive behaviors. began on a low dose of Risperdal and showed improvement immediately. Recently we have added a second medication Anafranil specifically for the OCD, and have seen more improvement. I know this is an uncomfortable topic for many and I was very resistant to these medications for years - but after seeing how much more comfortable and happy he is with the medications I believe it is the right thing for us. Good luck. Medication details are: Risperdal (antipsychotic-general behavior control)(2mg 2x day - breakfast and bedtime) Anafranil (antidepressant specifically for OCD) (25mg at bedtime) Joanne Schifano - Wayne,NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 : Thank-you for your speedy reply. It really helps to know that our kids share qualities. I do anticipate that her behaviors will need attention for a long time, and vigilance, and the " best and most consistent " approach. This consistency I know will comfort her. I really do believe that at the times these behaviors escalate are the times that she is seeking out the people around her to help push the " stop " button because she can't. I have one question for you. Does Mark have seizures? Thank-you again, wife to Jeff, mom to Dan 14, Ali 11, and 8 CHaRGE At 08:20 AM 4/19/1999 EDT, you wrote: >From: Kav810@... > >, > Behaviors are definitely a problem for the older CHARGER. >I think some of the same traits which enable our kids to endure so much when >they are small turn into the stubbornness as they get older LOL. On a serious >note I had the same problems with my son now 15. His current medications are >Depakote-to keep him on a more even keel, and Catapres to slow him down to a >more normal pace. They have helped him a lot. I was finding that aside from >being so stubborn if he did become upset he could escalate quickly and become >self abusive which really tore me up inside. He will occasionally stomp >around but more easily settles down. Unless he doesn't feel well then LOOK >OUT! V. Mom to Mark 15. > >------------------------------------------------------------------------ >Has ONElist changed your life? >http://www.ONElist.com >Visit our homepage and share with us your experiences at ONElist of the Week! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 , Excellent message. I think you pointed out the conflict we all feel. I agree with you that medications should be a last resort intervention. But there does come a time when many of us may not feel we have any alternatives. It is good that you have an excellent team and pediatricians available to assist. I'll be addressing behavior at the conference. The problem is to understand the purpose of the behavior and try to change it from there. But perseveration makes it very difficult. Just off the top of my head, in terms of knocking things off the table, I'd try either not having a table with things on it, or else presenting her with a table that has things it is OK to throw. Sometimes, once they get a chance to engage in the behavior like knocking things off the table, they are more willing to go on to something else. The problem is that we often step in to try to prevent their doing the behavior, and that causes them to want to do it all the more. It's like having a compulsive ritual. I know I have some that I sometimes get in to. I try not to look at the clock when I am on the ski exercise machine, but sometimes the harder I try to not look, the more compulsively I do look. The key is to not spend a lot of energy in not looking. Then my need to look is diminished. If I go ahead and look, then I can get on to other thoughts. I think time out can be an effective tool for purposive behaviors. But compulsive behaviors will probably not be too affected by it. Thanks for highlighting so well the conflict we all find ourselves in. I hope that at the conference I can give some basic principles that may help people to think through strategies to modify behaviors. I should hasten to say that if they all worked really well, would show perfect behavior, and as those of you in Houston will note, he does not! Tim Hartshorne (father of ) Garewski wrote: > > > Hello all: > > This past school year my daughter 's behaviors have negatively > impacted her education. She had a complete deafblind educational > evaluation at Perkins (Boston) School for the Blind in September. > Many > recommendations have been incorporated into her program at the > American > School for the Deaf here in CT. She has a wonderful team of educators > and > support service providers, yet they are hard pressed to find a > strategy or > behavior modification program that works. > > Her behaviors include impulsivity (i.e. entering a room and knocking > things > off the table because she thinks it is funny), perseveration > (insisting of > talking about the months of the year, holidays, in the middle of > reading a > story with her class), and refusing to transition to another activity > when > she is given lots of information to help her anticipate the change. > She > has also approached other students and shoved them thinking it is > funny. > She will explain why these things are " bad behaviors " and she will > " try > again tomorrow " but she doesn't seem to have the internal " OFF " switch > in > order to control these impulses. We have tried music, all sorts of > motivating reinforcement, yet she really seems to struggle with these > behaviors. Like many of our kids she is a very loving child and a > part of > me feels that maybe a medication could help ease these impulses. > Another > part of me says, " Don't jump the gun! " > > The school called me asking to give them permission to use the time > out > room. This is a padded, locked room with one small window which is up > on > the door much higher than she is. It can be bolted closed. I am so > afraid > of her reaction, I think she would be frightened. I told them I would > > think about it over the next week because the kids are on vacation. > This > really needs to be a PPT decision, but they told me they could use the > room > with my permission. It sounds extreme, yet it would definitely pull > her > away from to much stimulation if she is having difficulty integrating > it > all. I just worry about her initial reaction. A big part of me says > " no " . > > I don't write on the list very often but I read all messages. I know > that > 's sensory impairments greatly impacts her behaviors but no one > seems > to be able to decifer what her behaviors are telling everyone. They > have > tried many different interventions and I couldn't ask for a more > caring > group of people working with her. > > She has an appointment with her pediatrician this week. We also saw a > > developmental pediatrician for her first five years, but he moved to > Yale > New Haven hospital. I made an appt. with him because he has many kids > with > CHARGE as patients. He was always there those early years with the > right > decisions, he never steered us in the wrong direction. He can't see > us > until June. I'm going to have my pediatrician call him so maybe we > can see > him sooner. > > This is my question. Many people mention different medications, but > do we > have some sort of listing of the major medications our kids are on and > the > reasons for taking them? I'm wondering now, " what works best for our > kids " > so that if her MD's suspect some type of chemical imbalance, ie. > serotonin?, then what might work best? And because so many different > medications interact with each other, what meds work best when it is > necessary to take them with other meds such as heart, seizure, > respiratory, > GI meds, etc.. Basically, I don't want to reinvent the wheel and I > know my > MD's always consider any input I can bring to the table. I would like > to > compile my own list using our listserver and you can do the same if > interested. Maybe an entry could include your child's age, > medication, > dose, and reason for medication. Many medications are mentioned on > our > listserver, but they are usually scattered throughout many messages. > I > have read that some of you want to seek out medication info on the net > or > in books. Perhaps it would help to have a concise list to discover > just > what our kids respond well to. Looking forward to hearing your > replies. > > My list includes: > Pepcid 20mg G-tube twice/day for reflux > (for a period of 6 months only* she used Prevacid (lansoprazole) to > heal an > esophageal ulcer - *this medicatin carries a risk of cancer) > Flouride 1mg daily - we have a well - no flouride in our water supply > Tums 1 extra strength daily - as a supplement because she is allergic > to > all milk products > Osmolite RTU (ready to use) adult soy formula 5 cans daily given in > (6) > bolus tube feedings throughout the day. She also eats blended, milk > free > diet for meals > > Thanks in advance of your responses! Garewski > wife to Jeff, mom to Dan 14, Ali 11, and 8 CHaRGE (no atresia, > but > cleft palate and choanal stenosis) > > ---------------------------------- > ------------------------------------- > You can now easily share photos and documents with your fellow list > members > http://www.ONElist.com > Check out our homepage for details on how to use our new shared files > feature! > -------- > --------------------------------------------------------------- > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a > member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 << I was very resistant to these medications for years - but after seeing how much more comfortable and happy he is with the medications I believe it is the right thing for us. Good luck. Medication details are: >> Joanne I agree with you about the resistance. 's Non-CHARGEr twin is on 20 mg of slow release Ritalin 1X per day. I really beat myself up about it, but we saw much improvement in his ability to attend in the classroom. My MIL is really beating us up about this (and that is why I didn't want to tell her but Matt said it came up because his nephew is on adderall). She is insisting that kids who take Ritalin *will* become drug addicts when they grow up, etc. etc. We know there are no studies to back this up but she can be so difficult! You would think we just decided to give him this medication for the fun of it. He was having a very difficult time in Kindergarten last year and then when he started 1st grade in Sept. it was apparent that he had attention problems. We balked at medication and tried the other methods (helping him to organized, signals for speaking out, etc.) but they just didn't work. In January we started him and the improvement has been slow but steady. Janet Wife to Matt Mom to & (CHaRGEr) 7 on 5/7, nne 2, and Mom to 11 months, and 19 months. Weymouth, Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 I just wanted to say that this must be a major component of CHARGE when you read that so many of the kids are exhibiting the same behaviors. All of the kids are millions of miles away so it can't be our parenting techniques. I know how frustrating it is, my daughter also does the same similar things. The only downside for nne, is that she was just kicked out of a private school in December. This is the first time I have talked about it on the list with anyone, but in reading a couple of the e-mails this A.M. I decided to share. (though painful). Everyone in nne's school also seemed to be very caring also. We tried different medications which I read about from Bernstein from the Perkins School for the Blind. She said all kids with CHARGE suffer from anxiety. She listed a few of the medications that were used on students she was involved with. One was zoloft. nne's principal at that time approached me and suggested that we try medication to see if it would help. Ironically, I already had an appt. with her neurologist already set up. I was excited to try this zoloft or whatever. I had all this information, finally, confirming that this was indeed part of the CHARGE component. Actual facts for the doctor instead of speculation. Well, zoloft didn't work for nne. Instead it brought out more unwanted behaviors. She became more stubborn and seemed to get pleasure of aggravating people. When you mention about the time-out room at your daughters school, it brought alot of memories. It sounds like your daughter is very smart and is good at making people jump threw hoops. nne didn't mind being put in time-out at all. In fact, she even did a little remodeling of the room while she was in there. She loves helping her DAD at home so she knows where things are. One day I got a phone call from school asking that I take nne home because she almost disconnected the entire SCHOOL TELEPHONE SYSTEM!!! She had the entire school staff up in arms in not knowing what they should do. Also, if your daughter wears hearing aides, you might want to make sure they take them out before your daughter goes in there. In one school, they left nne in for over 30 minutes (found out from her aide) and nne took her hearing aides apart and swallowed the batteries. (She ended up in the hospital because the staff wasn't sure where they were). When the school nurse called me I told her she had to go to the hospital right away. The x-rays confirmed the batteries were in her stomach. She had so many days to pass the batteries before they would surgically remove the batteries. After many days of mineral oil, she finally passed them. We are currently seeing a doctor to find the right combination of medication to help her. She is taking trazadone and anafranil. She just started doing a funny kind of breathing about 2 weeks ago. We are not sure if it is due to the medication or not. She went for an EKG Thursday to see. She doesn't do it all the time, but enough to make you wonder. At least she did it in the doctors office. She goes again Tuesday. I have been sharing alot of the different e-mails related to this problem so that the doctor can understand more. Good luck with your daughter, I know how frustrating this can be. nne also can be a very loving child and seems to have a sense of humor. In June she won a gold medal at the regional Special Olympics for the 400 meter fast walk. She went on the the State Championship and took a silver there. She was very proud of herself. Celeste - nne (15) Garewski wrote: > > > Hello all: > > This past school year my daughter 's behaviors have negatively > impacted her education. She had a complete deafblind educational > evaluation at Perkins (Boston) School for the Blind in September. Many > recommendations have been incorporated into her program at the American > School for the Deaf here in CT. She has a wonderful team of educators and > support service providers, yet they are hard pressed to find a strategy or > behavior modification program that works. > > Her behaviors include impulsivity (i.e. entering a room and knocking things > off the table because she thinks it is funny), perseveration (insisting of > talking about the months of the year, holidays, in the middle of reading a > story with her class), and refusing to transition to another activity when > she is given lots of information to help her anticipate the change. She > has also approached other students and shoved them thinking it is funny. > She will explain why these things are " bad behaviors " and she will " try > again tomorrow " but she doesn't seem to have the internal " OFF " switch in > order to control these impulses. We have tried music, all sorts of > motivating reinforcement, yet she really seems to struggle with these > behaviors. Like many of our kids she is a very loving child and a part of > me feels that maybe a medication could help ease these impulses. Another > part of me says, " Don't jump the gun! " > > The school called me asking to give them permission to use the time out > room. This is a padded, locked room with one small window which is up on > the door much higher than she is. It can be bolted closed. I am so afraid > of her reaction, I think she would be frightened. I told them I would > think about it over the next week because the kids are on vacation. This > really needs to be a PPT decision, but they told me they could use the room > with my permission. It sounds extreme, yet it would definitely pull her > away from to much stimulation if she is having difficulty integrating it > all. I just worry about her initial reaction. A big part of me says " no " . > > I don't write on the list very often but I read all messages. I know that > 's sensory impairments greatly impacts her behaviors but no one seems > to be able to decifer what her behaviors are telling everyone. They have > tried many different interventions and I couldn't ask for a more caring > group of people working with her. > > She has an appointment with her pediatrician this week. We also saw a > developmental pediatrician for her first five years, but he moved to Yale > New Haven hospital. I made an appt. with him because he has many kids with > CHARGE as patients. He was always there those early years with the right > decisions, he never steered us in the wrong direction. He can't see us > until June. I'm going to have my pediatrician call him so maybe we can see > him sooner. > > This is my question. Many people mention different medications, but do we > have some sort of listing of the major medications our kids are on and the > reasons for taking them? I'm wondering now, " what works best for our kids " > so that if her MD's suspect some type of chemical imbalance, ie. > serotonin?, then what might work best? And because so many different > medications interact with each other, what meds work best when it is > necessary to take them with other meds such as heart, seizure, respiratory, > GI meds, etc.. Basically, I don't want to reinvent the wheel and I know my > MD's always consider any input I can bring to the table. I would like to > compile my own list using our listserver and you can do the same if > interested. Maybe an entry could include your child's age, medication, > dose, and reason for medication. Many medications are mentioned on our > listserver, but they are usually scattered throughout many messages. I > have read that some of you want to seek out medication info on the net or > in books. Perhaps it would help to have a concise list to discover just > what our kids respond well to. Looking forward to hearing your replies. > > My list includes: > Pepcid 20mg G-tube twice/day for reflux > (for a period of 6 months only* she used Prevacid (lansoprazole) to heal an > esophageal ulcer - *this medicatin carries a risk of cancer) > Flouride 1mg daily - we have a well - no flouride in our water supply > Tums 1 extra strength daily - as a supplement because she is allergic to > all milk products > Osmolite RTU (ready to use) adult soy formula 5 cans daily given in (6) > bolus tube feedings throughout the day. She also eats blended, milk free > diet for meals > > Thanks in advance of your responses! Garewski > wife to Jeff, mom to Dan 14, Ali 11, and 8 CHaRGE (no atresia, but > cleft palate and choanal stenosis) > > ------------------------------------------------------------------------ > You can now easily share photos and documents with your fellow list members > http://www.ONElist.com > Check out our homepage for details on how to use our new shared files feature! > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 I have a question regarding behavioural meds, Kennedy is only 14 months old, so I know nothing of them so far, but I wonder if/when she'll need them. Has anyone ever looked into " natural " remedies? I don't know, but I was just wondering if there were any kind of herbs or naturalistic medicine to help with behavioural difficulties. Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >From: salshif@... > >, > >I am continually amazed at how similar the problem behaviors are in many >of the CHARGE children. I realize the connection to " dual sensory >impairment " but in some cases the behaviors are incredibly similar yet >the types and severeity of sensory impairment are not! This is an area >I would really like to see addressed, either by a survey or as you say, >a study of medications that seem to work. My son is now 12 >years old and also knocks things down and laughs, slams doors, is >obsessed with his " calendar " and other things. Several years back, we >finally decided to try medication since, like you, all behavioral >techniques failed. He was becoming more and more out of control and the >behaviors were affecting his ability to learn. He was very frustrated >and extremely unhappy. At first the behaviors were classified as >autistic-like but now it is pretty obvious they are actually >Obsessive-Compulsive behaviors. began on a low dose of >Risperdal and showed improvement immediately. Recently we have added a >second medication Anafranil specifically for the OCD, and have seen more >improvement. I know this is an uncomfortable topic for many and I was >very resistant to these medications for years - but after seeing how >much more comfortable and happy he is with the medications I believe it >is the right thing for us. Good luck. Medication details are: > >Risperdal (antipsychotic-general behavior control)(2mg 2x day >- breakfast and bedtime) > >Anafranil (antidepressant specifically for OCD) (25mg at bedtime) > > >Joanne Schifano - Wayne,NJ > > >------------------------------------------------------------------------ >You can now easily share photos and documents with your fellow list members >http://www.ONElist.com >Check out our homepage for details on how to use our new shared files feature! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 Celeste, Thank you for sharing your story about nne, is she going to school anywhere now? I hope you guys can find a solution about her behaviours soon. I am really hoping that by the time Kennedy gets older and if she runs into difficulty, all the hard work the older CHARGErs parents have done in trying to find solutions to these problems will make it easier. I appreciate your sharing with us. Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >I just wanted to say that this must be a major component of CHARGE when you read that so many of the kids are exhibiting >the same behaviors. All of the kids are millions of miles away so it can't be our parenting techniques. I know how >frustrating it is, my daughter also does the same similar things. > >The only downside for nne, is that she was just kicked out of a private school in December. This is the first time >I have talked about it on the list with anyone, but in reading a couple of the e-mails this A.M. I decided to share. >(though painful). Everyone in nne's school also seemed to be very caring also. We tried different medications >which I read about from Bernstein from the Perkins School for the Blind. She said all kids with CHARGE suffer >from anxiety. She listed a few of the medications that were used on students she was involved with. One was zoloft. >nne's principal at that time approached me and suggested that we try medication to see if it would help. >Ironically, I already had an appt. with her neurologist already set up. I was excited to try this zoloft or whatever. >I had all this information, finally, confirming that this was indeed part of the CHARGE component. Actual facts for the >doctor instead of speculation. > >Well, zoloft didn't work for nne. Instead it brought out more unwanted behaviors. She became more stubborn and >seemed to get pleasure of aggravating people. > >When you mention about the time-out room at your daughters school, it brought alot of memories. It sounds like your >daughter is very smart and is good at making people jump threw hoops. nne didn't mind being put in time-out at >all. In fact, she even did a little remodeling of the room while she was in there. She loves helping her DAD at home >so she knows where things are. One day I got a phone call from school asking that I take nne home because she >almost disconnected the entire SCHOOL TELEPHONE SYSTEM!!! She had the entire school staff up in arms in not knowing >what they should do. Also, if your daughter wears hearing aides, you might want to make sure they take them out before >your daughter goes in there. In one school, they left nne in for over 30 minutes (found out from her aide) and >nne took her hearing aides apart and swallowed the batteries. (She ended up in the hospital because the staff >wasn't sure where they were). When the school nurse called me I told her she had to go to the hospital right away. The >x-rays confirmed the batteries were in her stomach. She had so many days to pass the batteries before they would >surgically remove the batteries. After many days of mineral oil, she finally passed them. > >We are currently seeing a doctor to find the right combination of medication to help her. She is taking trazadone and >anafranil. She just started doing a funny kind of breathing about 2 weeks ago. We are not sure if it is due to the >medication or not. She went for an EKG Thursday to see. She doesn't do it all the time, but enough to make you >wonder. At least she did it in the doctors office. She goes again Tuesday. I have been sharing alot of the different >e-mails related to this problem so that the doctor can understand more. > >Good luck with your daughter, I know how frustrating this can be. nne also can be a very loving child and seems to >have a sense of humor. In June she won a gold medal at the regional Special Olympics for the 400 meter fast walk. She >went on the the State Championship and took a silver there. She was very proud of herself. > >Celeste - nne (15) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 , No Mark does not have seizures his eeg showed " random firing " (and that does seem similar to the way he behaves) This topic is a big concern for me because it impacts the ability for our kids to function with others Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 Janet, tell your MIL that there ARE studies that show that ADHD adults that were NOT treated with medication are far more likely to end up in jail. That should do it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 1999 Report Share Posted April 19, 1999 << Janet, tell your MIL that there ARE studies that show that ADHD adults that were NOT treated with medication are far more likely to end up in jail. That should do it. >> If you could direct me to them, I would *love* to give her a copy! Thanks. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 1999 Report Share Posted April 20, 1999 Hi , nne is being homeschooled right now. We have a deaf education teacher who comes to the house right now. This was only supposed to me until this past March, well, now it looks like until June. nne is caught in the middle of a few different agencies. She has been in 7 different schools so far. We are in a new school district because she is high school. Our new district rep. is appalled at how much she has been pushed around. He wants to find a better placement for her, but alot of political garbage is going on right now. At nne's old school she was caught in the middle of a problem between her teacher and her interpreter. The school wanted to get rid of her interpreter because the school felt she was the source of nne's problems. Well, the interpreter found out, called the teacher at home to say how unprofessional she was etc. The interpreter's supervisor told her to call a meeting with the school administrators, which she did, again talking about unprofessionalism etc. A week later the school district got a letter saying they wouldn't keep nne anymore. There is so much, I could write a book. Celeste - nne 15 Graeme & Weir wrote: > > > Celeste, > Thank you for sharing your story about nne, is she going to school > anywhere now? I hope you guys can find a solution about her behaviours > soon. I am really hoping that by the time Kennedy gets older and if she > runs into difficulty, all the hard work the older CHARGErs parents have done > in trying to find solutions to these problems will make it easier. I > appreciate your sharing with us. > > Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme > New Brunswick, Canada > > Visit the " Weir's homepage " at: > http://www.geocities.com/SunsetStrip/Palms/5716 > ICQ #1426476 > > > > > > >I just wanted to say that this must be a major component of CHARGE when you > read that so many of the kids are exhibiting > >the same behaviors. All of the kids are millions of miles away so it can't > be our parenting techniques. I know how > >frustrating it is, my daughter also does the same similar things. > > > >The only downside for nne, is that she was just kicked out of a > private school in December. This is the first time > >I have talked about it on the list with anyone, but in reading a couple of > the e-mails this A.M. I decided to share. > >(though painful). Everyone in nne's school also seemed to be very > caring also. We tried different medications > >which I read about from Bernstein from the Perkins School for the > Blind. She said all kids with CHARGE suffer > >from anxiety. She listed a few of the medications that were used on > students she was involved with. One was zoloft. > >nne's principal at that time approached me and suggested that we try > medication to see if it would help. > >Ironically, I already had an appt. with her neurologist already set up. I > was excited to try this zoloft or whatever. > >I had all this information, finally, confirming that this was indeed part > of the CHARGE component. Actual facts for the > >doctor instead of speculation. > > > >Well, zoloft didn't work for nne. Instead it brought out more > unwanted behaviors. She became more stubborn and > >seemed to get pleasure of aggravating people. > > > >When you mention about the time-out room at your daughters school, it > brought alot of memories. It sounds like your > >daughter is very smart and is good at making people jump threw hoops. > nne didn't mind being put in time-out at > >all. In fact, she even did a little remodeling of the room while she was > in there. She loves helping her DAD at home > >so she knows where things are. One day I got a phone call from school > asking that I take nne home because she > >almost disconnected the entire SCHOOL TELEPHONE SYSTEM!!! She had the > entire school staff up in arms in not knowing > >what they should do. Also, if your daughter wears hearing aides, you might > want to make sure they take them out before > >your daughter goes in there. In one school, they left nne in for over > 30 minutes (found out from her aide) and > >nne took her hearing aides apart and swallowed the batteries. (She > ended up in the hospital because the staff > >wasn't sure where they were). When the school nurse called me I told her > she had to go to the hospital right away. The > >x-rays confirmed the batteries were in her stomach. She had so many days > to pass the batteries before they would > >surgically remove the batteries. After many days of mineral oil, she > finally passed them. > > > >We are currently seeing a doctor to find the right combination of > medication to help her. She is taking trazadone and > >anafranil. She just started doing a funny kind of breathing about 2 weeks > ago. We are not sure if it is due to the > >medication or not. She went for an EKG Thursday to see. She doesn't do > it all the time, but enough to make you > >wonder. At least she did it in the doctors office. She goes again > Tuesday. I have been sharing alot of the different > >e-mails related to this problem so that the doctor can understand more. > > > >Good luck with your daughter, I know how frustrating this can be. nne > also can be a very loving child and seems to > >have a sense of humor. In June she won a gold medal at the regional > Special Olympics for the 400 meter fast walk. She > >went on the the State Championship and took a silver there. She was very > proud of herself. > > > >Celeste - nne (15) > > ------------------------------------------------------------------------ > Tired of empty chat rooms and out of date bulletin boards? > http://www.ONElist.com > ONElist: Making the Internet Intimate > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 1999 Report Share Posted April 20, 1999 Celeste, I really hope you can get something going for the fall, it sounds like a terrible predicament for you to be in. This whole thought of " school " has frankly got me in a nervous wreck. { & Kennedy isn't even 1 and a half yet!}. I just hear all the under-funded over-worked stories, and I'm thinking, my god, I'm going to send my baby, " my wonderful-special-my-whole-life- is-taking-care-of-this-sweet-beautiful-pampered-little-precious-baby " to the LION'S den... I really don't know how you guys cope. I hope I'm a tenth as strong and tenacious when it comes to Kennedy's IEP's etc... Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >Hi , nne is being homeschooled right now. We have a deaf education teacher who comes to the house right now. >This was only supposed to me until this past March, well, now it looks like until June. nne is caught in the >middle of a few different agencies. She has been in 7 different schools so far. We are in a new school district >because she is high school. Our new district rep. is appalled at how much she has been pushed around. He wants to find >a better placement for her, but alot of political garbage is going on right now. > >At nne's old school she was caught in the middle of a problem between her teacher and her interpreter. The school >wanted to get rid of her interpreter because the school felt she was the source of nne's problems. Well, the >interpreter found out, called the teacher at home to say how unprofessional she was etc. The interpreter's supervisor >told her to call a meeting with the school administrators, which she did, again talking about unprofessionalism etc. A >week later the school district got a letter saying they wouldn't keep nne anymore. There is so much, I could write >a book. > >Celeste - nne 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 1999 Report Share Posted April 20, 1999 , thanks for the support. Your right, just when you think you are over all of the medical issues then other things seems to always be creeping up on you. I guess the only thing you can do is to carefully watch over your child's school programs, whatever they may be. Sometimes that even included making unexpected visits. When nne was a baby I really thought school was going to be the most wonderful experience for her. Preschool really was good for her, but from our experience, sometimes all of the people involved in Special Education aren't always as caring a you would like. It has been our experience that teachers of the hearing impaired aren't willing to take a child whose needs are different than just the " normal deaf child " . In the past, we were told by other people that we could have went to " DUE PROCESS' and would have won. But from past experiences that nne was put into, would she have really been the WINNER??? When you have people that are so reluctant to work with someone, if they are forced to do it, will they really try? Now we are in a position that we have to fight for nne's rights. Our district knows where we are coming from and we have people on nne's side (at least it appears that way). Do you have a parent infant program in your area? nne received those services when she was 5 weeks old. They used to come to the house so she wouldn't have to be exposed to all the germs at school? Don't get me wrong, there are alot of good people out there. It seems like we run into them every few year. Celeste - nne (15) Graeme & Weir wrote: > > > Celeste, > I really hope you can get something going for the fall, it sounds like a > terrible predicament for you to be in. > This whole thought of " school " has frankly got me in a nervous wreck. { & > Kennedy isn't even 1 and a half yet!}. I just hear all the under-funded > over-worked stories, and I'm thinking, my god, I'm going to send my baby, > " my wonderful-special-my-whole-life- > is-taking-care-of-this-sweet-beautiful-pampered-little-precious-baby " to the > LION'S den... I really don't know how you guys cope. I hope I'm a tenth as > strong and tenacious when it comes to Kennedy's IEP's etc... > > Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme > New Brunswick, Canada > > Visit the " Weir's homepage " at: > http://www.geocities.com/SunsetStrip/Palms/5716 > ICQ #1426476 > > > > > > >Hi , nne is being homeschooled right now. We have a deaf > education teacher who comes to the house right now. > >This was only supposed to me until this past March, well, now it looks like > until June. nne is caught in the > >middle of a few different agencies. She has been in 7 different schools so > far. We are in a new school district > >because she is high school. Our new district rep. is appalled at how much > she has been pushed around. He wants to find > >a better placement for her, but alot of political garbage is going on > right now. > > > >At nne's old school she was caught in the middle of a problem between > her teacher and her interpreter. The school > >wanted to get rid of her interpreter because the school felt she was the > source of nne's problems. Well, the > >interpreter found out, called the teacher at home to say how unprofessional > she was etc. The interpreter's supervisor > >told her to call a meeting with the school administrators, which she did, > again talking about unprofessionalism etc. A > >week later the school district got a letter saying they wouldn't keep > nne anymore. There is so much, I could write > >a book. > > > >Celeste - nne 15 > > ------------------------------------------------------------------------ > Looking for a new hobby? Want to make a new friend? > http://www.ONElist.com > Come join one of the 115,000 e-mail communities at ONElist! > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 , Some of the behavior meds some CHARGERS are on are due to " compulsive " behaviors. Marks attention span is great for things he is interested in ! But some of his compulsive behaviors were escalating a bit much before meds. I held off on the meds for a long time but when we finally decided to give them a try after a " crisis " we saw a significant improvement. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 1999 Report Share Posted April 26, 1999 Celeste, Yes, Kennedy is in an infant program for Deaf and Blind through APSEA <Atlantic Provinces Special Education Authority - www.apsea.ca> I have a VI and an HI teacher who come together to my home every two weeks. They are wonderful! Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > >Do you have a parent infant program in your area? nne received those services when she was 5 weeks old. They used >to come to the house so she wouldn't have to be exposed to all the germs at school? Don't get me wrong, there are alot >of good people out there. It seems like we run into them every few year. > > >Celeste - nne (15) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 1999 Report Share Posted April 27, 1999 , I'm glad you have these services. Great web page - it must have taken alot of time. Kennedy is adorable!! - Celeste Graeme & Weir wrote: > > > Celeste, > Yes, Kennedy is in an infant program for Deaf and Blind through APSEA > <Atlantic Provinces Special Education Authority - www.apsea.ca> I have a VI > and an HI teacher who come together to my home every two weeks. They are > wonderful! > > Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme > New Brunswick, Canada > > Visit the " Weir's homepage " at: > http://www.geocities.com/SunsetStrip/Palms/5716 > ICQ #1426476 > > > > > >Do you have a parent infant program in your area? nne received those > services when she was 5 weeks old. They used > >to come to the house so she wouldn't have to be exposed to all the germs at > school? Don't get me wrong, there are alot > >of good people out there. It seems like we run into them every few year. > > > > > >Celeste - nne (15) > > ------------------------------------------------------------------------ > Looking for a new hobby? Want to make a new friend? > http://www.ONElist.com > Come join one of the 130,000 e-mail communities at ONElist! > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 1999 Report Share Posted April 30, 1999 Celeste, Thanks, it's my only hobby I have left <besides this list!>. Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >, I'm glad you have these services. Great web page - it must have taken alot of time. Kennedy is adorable!! - >Celeste Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 Hi V.: Thanks for the response. I havent't been on the list in about a week. Lots of messages! This is something I will ask the developmental pediatrician about when we go next month. The only testing has had on her head was an ultrasound which appeared normal. I was always fully aware that there still could be anomalies and abnormal brain activity but we and our physicians always felt that if symptoms were not apparant and not directly impacting her life, then we would wait see. Besides, she always seemed to have so many other medical issues that need to be resolved. These behaviors very much affect the ability to function with others and it often breaks my heart. We will keep trying and will let you know how it turns out. G. wife to Jeff, mom to Dan 14, Ali 11, and 8 CHaRGE At 07:51 PM 4/19/1999 EDT, you wrote: >From: Kav810@... > >, > No Mark does not have seizures his eeg showed " random firing " (and that >does seem similar to the way he behaves) This topic is a big concern for me >because it impacts the ability for our kids to function with others > > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? >http://www.ONElist.com >Come join one of the 115,000 e-mail communities at ONElist! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.