Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 Dear Ronda, I'm so sorry to hear of the difficult times. That would be too bad if you had to quit your job. It really is nice your Mom has been helping. I have a couple of thoughts. First (and I'm sorry as I know I've written this before - I don't want to bore anyone) we put Kendra on Anafranil when she was 10 years old for obsessive behavior and lack of sleep (hers and ours) and some agressive behavior. It was very beneficial and stopped tantrums immediately, started to sleep better and started to communicate more effectively. She is still on a low dose but I do not wish to increase it if I do not have to. She still has some problems with attention and some obsessive behaviors and picking at her skin. I feel they would diminish if I raised the dose but I do not wish to do that as I prefer to see if we can find other ways to address the issues. Second, I'm really curious about strep infections sometimes causing these types of behaviors that you mentioned. Our doctor is looking into this. I'll let you know if we discover anything that is helpful. In terms of things that seem to help Kendra, visiting the HANDLE Institute in Seattle helped because they look at many issues that may be affecting a child and also cranial sacral therapy helped Kendra. I'm wondering if a relaxing activity might be helpful to Keresa? Does she have some activities that always seem to put her in a calm state of mind? I was wondering about swimming or other exercises? Exercise bike? Some form of massage? Has she had sensory integration therapy? Since we live so close maybe we could meet and the girls could meet someone a similar age going though similar things??? I hope you find a way to lessen some of these behaviors sometime soon. Best wishes, wendy Mom to Kendra, 12 CHARGE, , 18 and Camille 21 Portland, OR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 Rhonda, Behaviors are the hardest things sometimes to deal with. NO clear cut answers. Have you tried any medications? Several of our Chargers are on meds for behavior control with great success. V. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 Ronda, I'm sorry to hear of your behaviour troubles. I really can't give you much advice as I'm still relatively new to this whole CHARGE thing, but has anyone ever looked at Keresa's diet? Maybe there's certain foods that set off certain behaviours. It's worth a try maybe if there are any docs around that area who can do that type of testing. I really hope you don't have to quit your job, especially after just starting. I know it's hard to have to leave your work, I had to leave after Kennedy was born, to take care of her and our income is below poverty now. It's really hard, she's worth it and it's worth it to me to stay home with her, but life is a constant juggle. Today she needs a glycerin suppository really bad and I have no money at all til Friday. Fun fun fun... Good luck with the behaviours, & I'm sure there are others on the list who can help more than me. Mom to Kennedy 16 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 I am having alot of problems with Keresas behavor, at first these >things were small but it has gotten worse over the last few years. >She is now becoming agressive to others (hitting, bitting, scatching, >pulling other peoples and her own glasses off and trying to break then >throughing things) she has done self abuse for years (pulling her hair >out, scatching her self raw on her hands arms and face, teeth grinding >poking at her eyes hitting her knuckles on her teeth there is a callus >on it now) there is i'm sure many i have forgotten to mention today we >saw her Peds. DR she feels it could be the terrible 2s at hte age of >11 and lack of good communication Keresa does know alot of signs but >she will ignore you when she gets mad we have been trying to teach her >the feeling sign for a couple of years now but it is slow going. >her DR. is going to call our local childrens hospital for in put as to >what more we can do such as behavior modification that we haven't >already tried at school and home, theapys and medication. >I told her I was connected to this list and I would ask for your guys >input on what has worked or not. >She also does a lot of obsessive behaviors playing with her spit, >rolling her bottem lip to the point of being chapped, rocking, banging >of her head or fist, sucking her thumb, rubbing her head, staring at >lights, obsessing over certain clothes to wear or certain toys to play >with for hrs. on end. >Because of the new law and some new insurance I had to quit working in >April a job I had only started in oct 1998 the first work in 8 years >because of being single and caring for her but just last month my Mom >quit her job to stay home and care for my Gramdma and said to get a >job she would watch my girls while I worked before and after school >and for the summer but I dont think she knew how bad the behavior had >gotten she asked me yesteday is there something that can be done she >doesn't know if she can handle a whole summer of this If it doesn't >get better I will have to quit my new job I started at the end of May. > >Sorry to ramble on so hard to stop when you get started, I want to >thank every one in advance for there in put and for listening to me, >I'm glad to know you guys are here when info. is needed. > >Ronda miller >mom to Keresa 11 CHaRgE and Krystle 9 >Kent, Washington > >------------------------------------------------------------------------ >Where do some of the Internet's largest email lists reside? >http://www.onelist.com >At ONElist - the most scalable and reliable service on the Internet. >------------------------------------------------------------------------ >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 June 16, 1999 Report Share Posted June 16, 1999 - I've got some extra glycerin suppositories here now. Wish I could send items thru email!!! Even overnight express mail wouldn't get them there before Fri! Hang in there1 Michele mom to Aubrie (18 mos) CHaRgE and (7 yrs), wife to DJ, in IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 1999 Report Share Posted June 17, 1999 behaviors Hi: I'm not sure what Keresas' vision and hearing is but this information may be important to know. These behaviours all sound too familiar and I think all of us on the list agree that there is a another pysiological element involved; besides the child having partial sight or hearing. (ie. some of the children with the CHARGE behaviour has been described like a little of OCD, Tourettes, ADHD, besides that which is simply related to the lack of non-distorted sensory information) Read the web sites on Tourettes and relationships to diet. Read the information out of the allergy research center in Buffalo (Practical Allergy Research Foundation, PoBox 60, Buffalo, N.Y. 14223-0060) Consider talking with Doc about some of the medication in low dosage like Anafranil, Clonodine, Sertaline. (last one just came out in Canada) Also many of the behaviours you discribe may be self-stim. in nature so may have a great deal with the partial information she is getting and the lack of stimulation. Intervention: Does she have any leisure interests that are not repetitive in nature? Does she play functionally with toys or uses them to stim. with? How does she relax? (This is an important thing to look at as it may show how she is taking in information.) Does she have intervention at school? (ie. a one on one person who helps supply non-distorted visual/auditory/tactual information; explores the environment together hand-over-hand; creates problems to solve, motivation to learn, reasons to initiate; attatches language to routine activitiy; etc. ) Re communication: What are her representational skills like? Does she relate objects in the environment to their meaning? Can she label in sign objects in the environment? Can she identify herself in pictures? Can she understand symbols in print or braille and know the meaning? Using other options to enhance expressive communication may be beneficial in her environment. For example, the computer program using " Boardmaker pic " symbols in different areas of the home (food in kitchen, clothing and feeling signs in bedroom, etc.); or pictures of familiar activities, also feeling pictures. If the meaning of pictures are not developed, you can draw pictures together after doing an activity to draw meaning to it. You can use catalouge pictures. You can use objects if there is no vision for pictures. Choice making can be enhanced with concrete forms ( " this or this, which???) Develop choice making gives some control to the child. In other areas where there are obsessions maybe there should be no choice...a picture calendar of clothing tomorrow you will wear ________??? You could hang only the two choices in the closet and put the rest away. Insist on only 1 or 2 changes of clothes per day but maybe she could have a doll she could cange the clothes on instead. Anyway ... Developing an environment where choices are encouraged and Keresas can react to the environment rather then have the environment react to her. This will help develop language as well by giving her a reason to communicate. Use problem solving to work through things in routine using support not assistance... (ie don't give care, care to give information so that she may follow through with as much independance as possible) This may also enhance a sense of self, competancy, and pride. Ensure that the behaviour expressed is not because of a lack of control is felt by her? Ensure input, choices, and decisions are happening with small things. Mediation possibilities: separate on paper what you think the simply rotton stuff is from what you may think is due to " tics " , " obsessions " , " repetetive patterning " . Are some of the behaviours attatched to the same activity/people/way of coming in a room....sometimes its hard to see patterns. Is the anger often when you try and stop a repetative or compulsive thing? Does she react first with behaviour and then process the information? Video taping may help as you do not always see these things when interacting yourself. Some suggestions: Avoid confrontation, use time out area if control will not be maintained through language mediation then come back to the issue in sign, use key words to trigger the " control " like " remember to sign... " , make responsibility a priority, ie. break/fix, hurt someone/buy gift or do favour, sorry sign, letter, etc., name tics and obsessions so that there becomes an awareness of them and try and give options to replace them not take them away totally. (show spinning of hand vs. fisting, give lolipop vs. knuckle lick, etc...) Give time to do obsessions in a more socially acceptable perameter with time limits. " Time to lick now, here is your lolipop. Remember we will not chew knuckle later. " Then go on to structured activity. (ie. bake cookies together, do a craft, massage, etc...) When more structure is created they have more ability to control because it reduces some of the stress. A predictable routine helps. Also, lots of prep. work before going out in car. ie, pictures, cues where we will go, what we will do, " and then.... " so that the sequence is understood. Use reminders before going out in public, " now you can hit this little pillow for a bit and then we will go in the store " or " here is you basket of toy glasses. Do you want to bend them/ break now? " (Perhaps you could get discards somewhere or find something similar...maybe it is just the obsession to break something so sticks may even work...OCD's sometimes are bizzare!) Have all people involved with her react consistantly ie. don't over react, use time out chair in same place, keep confrontation low, give her time to reprocess, etc.. Hope some of this helps!! Ann Gloyn, D.B. Specialist Teacher, Canada > > > Hi I am having alot of problems with Keresas behavor, at first these > things were small but it has gotten worse over the last few years. > She is now becoming agressive to others (hitting, bitting, scatching, > pulling other peoples and her own glasses off and trying to break then > throughing things) she has done self abuse for years (pulling her hair > out, scatching her self raw on her hands arms and face, teeth grinding > poking at her eyes hitting her knuckles on her teeth there is a callus > on it now) there is i'm sure many i have forgotten to mention today we > saw her Peds. DR she feels it could be the terrible 2s at hte age of > 11 and lack of good communication Keresa does know alot of signs but > she will ignore you when she gets mad we have been trying to teach her > the feeling sign for a couple of years now but it is slow going. > her DR. is going to call our local childrens hospital for in put as to > what more we can do such as behavior modification that we haven't > already tried at school and home, theapys and medication. > I told her I was connected to this list and I would ask for your guys > input on what has worked or not. > She also does a lot of obsessive behaviors playing with her spit, > rolling her bottem lip to the point of being chapped, rocking, banging > of her head or fist, sucking her thumb, rubbing her head, staring at > lights, obsessing over certain clothes to wear or certain toys to play > with for hrs. on end. > Because of the new law and some new insurance I had to quit working in > April a job I had only started in oct 1998 the first work in 8 years > because of being single and caring for her but just last month my Mom > quit her job to stay home and care for my Gramdma and said to get a > job she would watch my girls while I worked before and after school > and for the summer but I dont think she knew how bad the behavior had > gotten she asked me yesteday is there something that can be done she > doesn't know if she can handle a whole summer of this If it doesn't > get better I will have to quit my new job I started at the end of May. > > Sorry to ramble on so hard to stop when you get started, I want to > thank every one in advance for there in put and for listening to me, > I'm glad to know you guys are here when info. is needed. > > Ronda miller > mom to Keresa 11 CHaRgE and Krystle 9 > Kent, Washington > > ------------------------------------------------------------------------ > Where do some of the Internet's largest email lists reside? > http://www.onelist.com > At ONElist - the most scalable and reliable service on the Internet. > ------------------------------------------------------------------------ > 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...
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