Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 Jeanne, You've very nicely posed the question we're all wondering about. Those behaviors you describe are very typical of CHARGErs. They are also typical of children with autism, deaf-blind children, and I have also heard the notion about early hospitalizations. The hospitalizations would make children somewhat defensive, but there are other children who do not have CHARGE but still have early hospitalizations who do not show the behaviors, and so while I think it contributes, it doesn't seem like enough to me. On the other hand, I think some of the tactile defensiveness could relate to the hospital experiences, and to some extent that could contribute to the behaviors, but,again, I doubt it can account for all of it. Autism is a tough one because we don't know what it is exacty or what causes it. But it is predominently a male thing (75-80%) and is not associated with other medical problems, and so I would prefer to not confuse CHARGE with autism. It's like having a headache. Could be caused by a brain tumor or by constriction of the blood vessils, and might feel the same, but the cause is different. That leads to the sensory problems. If all children with CHARGE were deaf-blind, it would be easy. But we still find that a lot of children who are not deaf-blind like Caitlyn, nevertheless have auditory and visual problems. The important thing about deaf-blind is that it is not deafness plus blindness, because if you put the two together you have an entirely different category of problems. Add to that problem the vestibular problems, and then I think we get to the source of the difficulty. Do we have any CHARGERs without vestibular problems? I don't believe I've ever known one. If we do, do they have behavior problems? If they do, what are their other senses like? I hope this makes some sense. Tim Jeanne McMullen wrote: > > > Tim > > I have a question for you. I thought of this question partly because > of > your latest post on behaviors and partly because I finally got a > chance to > view the videos of the conference in Boston and was watching the part > about > CHARGE behaviors. > > Both you and the person in the video referred to the behaviors being > common > in CHARGErs who are deaf-blind. However, my daughter has the typical > CHARGE > behaviors yet she doesn't have colobomas and her hearing loss is only > mild > and in upper frequencies where the audiologist doesn't feel it would > affect > her ability to function. > > Let me go on to explain that Caitlyn has crossed eyes (has had 3 eye > surgeries and they're still not fixed), a nystagmus, visual processing > > problems (mild cortical visual impairment), and severe auditory > processing > problems. > > I explain these things because though Caitlyn is not considered deaf > or > blind, she does have problems with her vision and hearing, and so this > may > actually strengthen your opinion. > > I'll also explain her CHARGE behaviors (or what the docs consider > PDD/NOS). > Very short attention span (can be counted in seconds), difficulty > making > eye contact, cannot interact with peers, (though she's improved her > interaction skills with adults), severe echolalia, inability to > understand > others emotions, repetitive behaviors (constant chewing, constant > echolalia), severe auditory defensiveness and other sensory > integration > problems. > > The latest we've heard from the docs is that these problems are most > likely > due to Caitlyn's medical history where she's spent most of her life > sick and > some times even critical. So she hasn't had much opportunity to be a > kid or > to be with other kids. > > Sorry to go on so, but I'm really wondering. Should we say that these > > behaviors are typical of CHARGE, or typical of kids with an extensive > medical history, or typical of kids with any type of visual and > auditory > involvement (or all of the above)? > > Thanks for letting me bend your ear a bit. > > Jeanne mom to Caitlyn age 3 1/2yrs cHaRgEr > > _______________________________________________________________ > Get Free Email and Do More On The Web. Visit http://www.msn.com > > > ----------------------------------------------------------------------- > > Wanting to get back in touch with old friends? > http://www.onelist.com > Get re-acquainted through a ONElist community. > ---------------------------------------------- > ------------------------- > 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 May 3, 1999 Report Share Posted May 3, 1999 , It sounds like your Aubrie is a lot like my Madison, who just turned 20 months old. I looked at your highlighted letters of charge and Madison's are the same. She sees out of one eye and appears to have no hearing problems. Is your Aubrie verbalizing a lot? Madison has just started to learn to babble, she has been saying mama and dada for a few months, but never really uses it to get our attention. Probably because she doesn't need to. Her birth to 3 teacher has had us using sign lang. for a couple months, however I was not to thrilled to do this. But last night she signed " more " !!! I'm not sure if she understands, but has done it today also. Our main concern is with her eating (she weighs 20 lbs or so and is only 29 1/2 inches tall). She just started to walk, but still crawls about 70 % of the time. Maybe now that she has the walking down, she will start to more. She sounds like she is trying to repeat what I ask her to sometimes, but is still hard to tell. However, she has just started to grind her teeth. I tell her no no and she usually stops. She has just gotten 2 molars in , so I am wondering if this could be phase because this was something she could not do before when she had no teeth. She is the happiest little girl and rarely cries. She plays on her own just fine, but likes to watch other kids too, but does not really play with them. I don't think that should happen anyway until at least the age of 2. Am I right? I think that there must be other Charge kids out there that do not have behavior problems. Anyway, all kids, normal included, have behavior problems during their childhood. So, I guess we'll just have to wait and see. Ugh!!! Just my $.02 Jodie mom to Madison CHaRgE- one floppy ear, no hearing loss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 My daughter caitlin is almost 8 and was always a sweet well behaved child and she still is. Thank God. She does act bad sometimes like any kid but nothing out of the ordinary. She is a little obsessive at times, about what type of clothes she wants to wear. She is much better behaved than my 'normal' daughter!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 Tim- I also share Jeanie's questions about behaviors being related to medical history, deaf-blind issues, etc. Are there older CHARGE children *without* these types of behaviors? Do we know why they've escaped them? How soon do you see evidence of these behaviors? Aubrie is a delight right now. She is social and interacts with others. Her play interaction is not " typical " of a 17 mos old, but it's not severely atypical either. She enjoys the company of other kids altho she mostly just observes. Anyway, I guess I'm really wondering if her pleasant disposition now can give me some hope, or if I need to be aware that these other behaviors can still crop up at any time. BTW- Aubrie's medical issues are mostly resolved. Her biggest concerns are the health of her eyes (muscle alignment, glaucoma, cataract, preserving the vision in her good eye, etc) and weight gain. We still don't know for sure the level of hearing impairment, if any. Right now, she seems to have monocular vision with a mild hearing impairment. Michele mom to Aubrie (17 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 May 3, 1999 Report Share Posted May 3, 1999 Caitlin has a coloboma in her right eye with no vision. her left eye vision is 20/70. she has nystagmus and optic nerve hypoplasia??. Moderate to severe hearing loss, it really fluctuates. She talks fine, some speech problems. Vestibular? i am not sure, she has a little problem with balance but not much. More of a depth perception problem. I was not sure what vestibular meant. She has alot of stomach problems. so far not really diagnosed except possible reflux. Hope i answered all your questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 Hi Michele, The problem behaviors tend to crop up when the child's problems with communication cause frustration for them. The world for them is confusing enough when there are problems in sensing what is going on in the world. Add to that the need for stimulation when your normal channels for obtaining stimulation are impaired. Then trying to get your needs met and wants communicated to other people who do not understand what it is you are saying, and you have a recipe for behavior problems. My sense is that the sweet disposition, that most of our CHARGEers have as young children, continues, but that disposition is accompanied now with behaviors that are problematic. But nothing is preordained. And there may be kids with CHARGE who never develop the behavior problems. I think the best preventative is a good communication system. Tim Michele Westmaas wrote: > > > Tim- > I also share Jeanie's questions about behaviors being related to > medical > history, deaf-blind issues, etc. Are there older CHARGE children > *without* these types of behaviors? Do we know why they've escaped > them? How soon do you see evidence of these behaviors? > > Aubrie is a delight right now. She is social and interacts with > others. Her play interaction is not " typical " of a 17 mos old, but > it's not severely atypical either. She enjoys the company of other > kids > altho she mostly just observes. Anyway, I guess I'm really wondering > if > her pleasant disposition now can give me some hope, or if I need to be > > aware that these other behaviors can still crop up at any time. BTW- > Aubrie's medical issues are mostly resolved. Her biggest concerns are > > the health of her eyes (muscle alignment, glaucoma, cataract, > preserving > the vision in her good eye, etc) and weight gain. We still don't know > > for sure the level of hearing impairment, if any. Right now, she > seems > to have monocular vision with a mild hearing impairment. > > Michele > mom to Aubrie (17 mos) CHaRgE and (7 yrs), wife to DJ, in IL > westml@... > > ---------------- > ------------------------------------------------------- > Have you visited the new ONElist home page lately? > http://www.ONElist.com > ONElist: The Leading e-mail list and community 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 May 3, 1999 Report Share Posted May 3, 1999 , That is very encouraging. Could you remind me what CHARGE problems she has, and particularly how her communication skills are and what her vestibular problems are. Thanks, Tim Nairduelle@... wrote: > From: Nairduelle@... > > My daughter caitlin is almost 8 and was always a sweet well behaved > child and > she still is. Thank God. She does act bad sometimes like any kid but > > nothing out of the ordinary. > She is a little obsessive at times, about what type of clothes she > wants to > wear. She is much better behaved than my 'normal' daughter!! > > -------------------------------------------------------------------- > --- > 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 May 4, 1999 Report Share Posted May 4, 1999 Michele, My daughter Aubree does not have any behavioral problems. She is 14 years old and she is your typical kid when it comes to getting in trouble or having to go to her room. She will throw a fit when I send her to her room. I have to have my husband help and he even has a hard time. It is amazing the strength she has and she is only 62 lbs. That is what is so weird, she plays in her room, but when you tell her to go there when she's in trouble, it's like you are cutting her hand off. Wells Aubree - 14 Years (charge) Rhoni 16 Years ---------- > > To: CHARGE-List <CHARGEonelist> > Subject: Re: behaviors > Date: Monday, May 03, 1999 12:34 PM > > > > Tim- > I also share Jeanie's questions about behaviors being related to medical > history, deaf-blind issues, etc. Are there older CHARGE children > *without* these types of behaviors? Do we know why they've escaped > them? How soon do you see evidence of these behaviors? > > Aubrie is a delight right now. She is social and interacts with > others. Her play interaction is not " typical " of a 17 mos old, but > it's not severely atypical either. She enjoys the company of other kids > altho she mostly just observes. Anyway, I guess I'm really wondering if > her pleasant disposition now can give me some hope, or if I need to be > aware that these other behaviors can still crop up at any time. BTW- > Aubrie's medical issues are mostly resolved. Her biggest concerns are > the health of her eyes (muscle alignment, glaucoma, cataract, preserving > the vision in her good eye, etc) and weight gain. We still don't know > for sure the level of hearing impairment, if any. Right now, she seems > to have monocular vision with a mild hearing impairment. > > Michele > mom to Aubrie (17 mos) CHaRgE and (7 yrs), wife to DJ, in IL > westml@... > > > ------------------------------------------------------------------------ > Have you visited the new ONElist home page lately? > http://www.ONElist.com > ONElist: The Leading e-mail list and community 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 May 4, 1999 Report Share Posted May 4, 1999 , Aubree has coloboma in her left eye with little vision (double vision), severe hearing loss her speech is not good, she communicates with sign, her balance is better, but it used to be really bad. She could not walk 5 feet without falling. She can run, walk, jump and a lot of other things, but I feel like her heart surgery has corrected this problem (maybe I'm crazy) Aubree has absolutely no stomach problems. She eats anything and everything has never had any type of tube. Does Caitlin enjoy TV. Of course she is very young. But Aubree really enjoys watching movies, anything to do with dogs. Wells Aubree 14 Years (charge) Rhoni 16 Years ---------- > From: Nairduelle@... > To: CHARGEonelist > Subject: Re: behaviors > Date: Monday, May 03, 1999 4:57 PM > > From: Nairduelle@... > > Caitlin has a coloboma in her right eye with no vision. her left eye vision > is 20/70. she has nystagmus and optic nerve hypoplasia??. Moderate to severe > hearing loss, it really fluctuates. She talks fine, some speech problems. > Vestibular? i am not sure, she has a little problem with balance but not > much. More of a depth perception problem. I was not sure what vestibular > meant. She has alot of stomach problems. so far not really diagnosed except > possible reflux. Hope i answered all your questions. > > ------------------------------------------------------------------------ > Share the wealth! > http://www.ONElist.com > Tell a friend about ONElist's 130,000 free e-mail communities! > ------------------------------------------------------------------------ > 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 May 4, 1999 Report Share Posted May 4, 1999 Re: behaviors : This is great information! It just happens that one of the 19 year old students with compulsive-like behaviour does carry a strep and they have tried everything including hospitalization to get rid of it to no avail! The problem is due in part to the atresia and narrowing of the eustatian tubes. She does have alot of repeated discharge. Our moduale workers as well came down with strep before the break, and the our 15 year old's " tics " and behaviour were noticably different during this period. He was never swabbed for strep as we were. > > >Here are two more web sites that have some information on the *possible* strep connection to some behaviors: > >http:www.angelfire.com/il/TeenOCD/special.html > >http://mhsource.com/edu/psytimes/p980567.html > > >Kendra's Mom >Portland, OR >keedy@... > > >------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 Re: behaviors Kris: This study was 200 children and they have reported 85% success rate. The Secretin was also given with gingko biloba, echinacea, pancreas and Q-10 and some Vitamin and minerals. Information given from: Also Check web at <http://www.autism.com/ari/secretin.html> Ann Gloyn, D.B. Specialist Teacher, Canada >From: Kac425@... > >In a message dated 5/4/99 12:21:28 AM Eastern Daylight Time, >tgloyn@... writes: > ><< I was also reading the recent study already with an 85% > success rate on sublingual secretin (a hormone which stimulates the > pancreas to produce enzimes, which was usually given to help diagnose > digestive problems.) The study originated because a Mom of an autistic boy > in Bedford, NH pushed it. >> >i think this study turned out to be quite overenthusiastic! think about >it...if there was an 85% success rate EVERY child with autism would be given >the opportunity to be cured! i believe there were other secretin trials that >had MUCH lower rates of success...like under 5% improved...and only those >whom had an actual secretin deficiency. >kris >mom to michael (6.5) CHaRGE and kolleen (8 weeks) >long branch, nj > >------------------------------------------------------------------------ >Join the Star Wars craze! >http://www.onelist.com >Set up your Star Wars list 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 May 4, 1999 Report Share Posted May 4, 1999 Re: behaviors Jeanne noted some important examples of behaviour that we need to separate from simply behaviours caused by deafblindness or sensory loss. But I do not want a discussion of this to bring those with little babies or young children to feel it may happen, or feel discouraged. These things will not need to be an issue when their children grow up, as we will know so much more! Also, the little ones are getting such a great start on communication that it will help them better cope using language. We need to look at the comments about things like the teeth grinding. I think I have heard this alot on the list. (could be neurological, could be stress related, could be important...? I was reading how two University of Alabama doctors believe that it is a nutritional problem that can be helped with increased dosages of calcium and pantothenic acid.) I also hear things like " a little obsessive " . Could this be important? Could there be mild degrees of this obsessive-type stuff? With Caitlyn, the sensory integration problems and the auditory defensiveness could be because of the sensory loss. It is the following examples of behaviour in some children with CHARGE that concerns me: echolalia, the repetitive behaviours, the lack of attention span, the tendency toward obsessive behaviour, the lack of anger control, the hand spinning, the " tics " ... Anyway, not to relate any labels or assume that it is all connected but my " gut " instinct is that the " gut " has more to do with this type of behaviour then the difference in vestibular function. I notice my student " tics " alot more, is on edge and more aggressive, more spinning of hands, etc, before bowel mov'ts. I find the research on Tourettes and the success with the relationship to diet interesting. I find allergy and behaviour connections interesting. I was also reading the recent study already with an 85% success rate on sublingual secretin (a hormone which stimulates the pancreas to produce enzimes, which was usually given to help diagnose digestive problems.) The study originated because a Mom of an autistic boy in Bedford, NH pushed it. Her son is now is totally verbal, has eye contact, is sleeping all night, no more facial tics....etc..He had been given the medicine during an investigation into his diarrhea and vomiting which he had for 2 years! Two days later this kid was totally different. Listen to this concerning many of the children: " ...social skills (change), ....self stimulating behaviours seem to decrease, children with poor appetites take on new food interests, verbal skills improve dramatically, bowel movements and potty training improve, better eye contact improve as social awareness improve, .... One boy at our school got into the study. I'm not sure if they still need people for the study. I thought this may be interesting for us. Ann Gloyn, D.B. Specialist Teacher, Canada > > >Jeanne, > >You've very nicely posed the question we're all wondering about. Those >behaviors you describe are very typical of CHARGErs. They are also >typical of children with autism, deaf-blind children, and I have also >heard the notion about early hospitalizations. > >The hospitalizations would make children somewhat defensive, but there >are other children who do not have CHARGE but still have early >hospitalizations who do not show the behaviors, and so while I think it >contributes, it doesn't seem like enough to me. On the other hand, I >think some of the tactile defensiveness could relate to the hospital >experiences, and to some extent that could contribute to the behaviors, >but,again, I doubt it can account for all of it. Autism is a tough one >because we don't know what it is exacty or what causes it. But it is >predominently a male thing (75-80%) and is not associated with other >medical problems, and so I would prefer to not confuse CHARGE with >autism. It's like having a headache. Could be caused by a brain tumor >or by constriction of the blood vessils, and might feel the same, but >the cause is different. That leads to the sensory problems. If all >children with CHARGE were deaf-blind, it would be easy. But we still >find that a lot of children who are not deaf-blind like Caitlyn, >nevertheless have auditory and visual problems. The important thing >about deaf-blind is that it is not deafness plus blindness, because if >you put the two together you have an entirely different category of >problems. Add to that problem the vestibular problems, and then I think >we get to the source of the difficulty. Do we have any CHARGERs without >vestibular problems? I don't believe I've ever known one. If we do, do >they have behavior problems? If they do, what are their other senses >like? > >I hope this makes some sense. > >Tim > >Jeanne McMullen wrote: > >> >> >> Tim >> >> I have a question for you. I thought of this question partly because >> of >> your latest post on behaviors and partly because I finally got a >> chance to >> view the videos of the conference in Boston and was watching the part >> about >> CHARGE behaviors. >> >> Both you and the person in the video referred to the behaviors being >> common >> in CHARGErs who are deaf-blind. However, my daughter has the typical >> CHARGE >> behaviors yet she doesn't have colobomas and her hearing loss is only >> mild >> and in upper frequencies where the audiologist doesn't feel it would >> affect >> her ability to function. >> >> Let me go on to explain that Caitlyn has crossed eyes (has had 3 eye >> surgeries and they're still not fixed), a nystagmus, visual processing >> >> problems (mild cortical visual impairment), and severe auditory >> processing >> problems. >> >> I explain these things because though Caitlyn is not considered deaf >> or >> blind, she does have problems with her vision and hearing, and so this >> may >> actually strengthen your opinion. >> >> I'll also explain her CHARGE behaviors (or what the docs consider >> PDD/NOS). >> Very short attention span (can be counted in seconds), difficulty >> making >> eye contact, cannot interact with peers, (though she's improved her >> interaction skills with adults), severe echolalia, inability to >> understand >> others emotions, repetitive behaviors (constant chewing, constant >> echolalia), severe auditory defensiveness and other sensory >> integration >> problems. >> >> The latest we've heard from the docs is that these problems are most >> likely >> due to Caitlyn's medical history where she's spent most of her life >> sick and >> some times even critical. So she hasn't had much opportunity to be a >> kid or >> to be with other kids. >> >> Sorry to go on so, but I'm really wondering. Should we say that these >> >> behaviors are typical of CHARGE, or typical of kids with an extensive >> medical history, or typical of kids with any type of visual and >> auditory >> involvement (or all of the above)? >> >> Thanks for letting me bend your ear a bit. >> >> Jeanne mom to Caitlyn age 3 1/2yrs cHaRgEr >> >> _______________________________________________________________ >> Get Free Email and Do More On The Web. Visit http://www.msn.com >> >> >> ----------------------------------------------------------------------- >> >> Wanting to get back in touch with old friends? >> http://www.onelist.com >> Get re-acquainted through a ONElist community. >> ---------------------------------------------- >> ------------------------- >> 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@.... > > > > >------------------------------------------------------------------------ >Did you know that we add over 1,000 new e-mail communities every day? >http://www.ONElist.com >Explore a new hobby, discover a new friend, laugh at a new joke! >------------------------------------------------------------------------ >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 May 4, 1999 Report Share Posted May 4, 1999 Re: behaviors This may be too Canadian, but since we are still on the behaviour topic, I was just reading about the loon population exhibiting excessive preening and compulsive behaviour that is putting their population at risk. Biologists from Acadia University found high mercury levels in them. The farther east the more mercury content and the greater the behaviour change. ( Nova Scotia is then a tail pipe for airborne pollution form other areas of the continent they are thinking.) Not that this is connected to anything, just interesting... Ann Gloyn My niece went through a thing for about a month where the only thing she would eat was raisen brand cereal.. well.... it kept her cleaned out. <G> has gone through a grilled cheese sandwhich thing a few times and Ken never has eaten any kind of bean (green beans, pinto beans anything with bean in the name) Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey ------------------------------------------------------------------------ ONElist: the best source for group communications. http://www.onelist.com Join today! ------------------------------------------------------------------------ 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 May 4, 1999 Report Share Posted May 4, 1999 Ann Gloyn wrote: It is the following examples of behaviour in some children > with CHARGE that concerns me: echolalia, the repetitive behaviours, the > lack of attention span, the tendency toward obsessive behaviour, the lack of > anger control, the hand spinning, the " tics " ... > Anyway, not to relate any labels or assume that it is all connected but my > " gut " instinct is that the " gut " has more to do with this type of behaviour > then the difference in vestibular function. Ann, Regarding the 'tics' and some obsessive behaviors, I think there is some research out there that supports the idea that strep infections can contribute to these behaviors. I read about this a couple of years ago in the newspaper and searched on the web recently. At www.ocfoundation.org there is information about a condition called PANDAS that has to do with some children being genetically predisposed to have obsessive types of behaviors following certain strep infections. " Tics " can be certain impulsive or aggressive behaviors also. Apparently there are some adverse affects on the brain when this condition is present and there is some evidence that some treatments help significanlty. Because Kendra is very responsive to ANAFRANIL for obsessive types of behaviors, I'm always looking for information on this topic. Since some children are not good candidates for Anafranil or similar antidepressant medicines, or some medicines may have limited effectiveness, I always keep my eyes open for information on this topic. Soon after starting Anafranil at age 9 and 1/2, Kendra's temper tantrums virtually disappeared, and she started sleeping through the night. Several months after starting the medicine she started to use expressive sign language where before it had been a very infrequent occurance. Kendra was able to put down the book she always carried and this has helped her to be able to use her hands for signing. Language continues to be a very significant issue for us, but there are improvements and the improvements are related to several factors not only the Anafranil. Recently Kendra got glasses that improved eye contact and that has helped in language use also as eye contact is very helpful for picking up sign language. In other words, I also believe that behaviors can be attributable to a variety of circumstances and the more we learn the better. As Tim has stated, vestibular problems may significantly affect our CHARGErs and I think your comments about the 'gut' are also really important. I can't help but wonder about the connection of the strep infections and I sent for more information on this topic. 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 May 4, 1999 Report Share Posted May 4, 1999 Here are two more web sites that have some information on the *possible* strep connection to some behaviors: http:www.angelfire.com/il/TeenOCD/special.html http://mhsource.com/edu/psytimes/p980567.html Kendra's Mom Portland, OR keedy@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 In a message dated 5/4/99 12:21:28 AM Eastern Daylight Time, tgloyn@... writes: << I was also reading the recent study already with an 85% success rate on sublingual secretin (a hormone which stimulates the pancreas to produce enzimes, which was usually given to help diagnose digestive problems.) The study originated because a Mom of an autistic boy in Bedford, NH pushed it. >> i think this study turned out to be quite overenthusiastic! think about it...if there was an 85% success rate EVERY child with autism would be given the opportunity to be cured! i believe there were other secretin trials that had MUCH lower rates of success...like under 5% improved...and only those whom had an actual secretin deficiency. kris mom to michael (6.5) CHaRGE and kolleen (8 weeks) long branch, nj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 Michele, Jack has just recently started signing and has picked it up so quickly.It's amazing!! He signs more/again, bath, all gone/finished, good, yes,no. His new signs are teddy, book and car . We are using Makaton sign language. Would this be a possibility for Aubrie? If you want to know more about this let me know and I'll e-mail you privately. Elaine mum to Elise(6yrs) & Jack(21mths) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 Jodie- Aubrie says mama with some meaning. All of her other sounds are just babbling. She signs 5 words -- bye-bye, milk, eat, dog, want. We're trying to figure out the best communication method for her because oral motor skills are keeping her from talking and fine motor skills are holding back her signing. Next week, we'll be getting together the ST, OT, deaf therapist and me to talk it over. I think we're going to work on modified sign to accomodate her fine motor skills. We may use some pictures too to see how that works. Aubrie seems to hear just fine but consistently test with mild to moderate loss. Besides communication, our other big concern is also eating. Aubrie weighs just over 17 lbs and is 30.5 " long. We're weaning from the Gtube starting this week. She has been getting 8 oz of Pediasure over the night. We're going to give it orally during the day. She has been totally oral by day since Nov. Aubrie doesn't walk or crawl. She seems to be very afraid. She backscoots on her bottom in a sitting position. She can't get herself into a sit or a stand. She stands playing at the coffee table very well and is trying to cruise a bit. It's frustrating cuz I'm not exactly sure what's interfering with her getting to a sit and stand and crawling. She seems strong enough but afraid. Perhaps it's vestibular problems that we don't know about yet. Her disposition is delightful. I am just as worried as you about her developing unpleasant behaviors in the future. I have a hard time assessing her cognitive level because of her lack of communication and motor skills. For several weeks, she has been pretending to talk on her play phone. Pretend play is an important milestone, so I hope it is an indicator of good things. Let's continue to compare notes occassionally. It's great to have someone around the same age and with similar dx's. Michele mom to Aubrie (17 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 May 4, 1999 Report Share Posted May 4, 1999 & - Thanks for the glimmer of hope!! Caitlyn's impairments sound similar to Aubrie's. When said that Caitlyn is a bit obsessive at times, it made me laugh. I get really frustrated when I see " obsessive " or " compulsive " or " sensory defensive " behaviors in my friend's typical kids. If Aubrie did some of the things these regular kids do, it'd be major dx with special therapy, etc. Sometimes I think she just deserves a break! We know one 4-yr-old who can't eat anything that's broken (no partial french fries, no poptarts with the corner off...) and a 7-yr-old who can't tolerate elastic or lace on clothing. I can just see the goals on the IFSP if these were special needs kids :-) Michele mom to Aubrie (17 mos) CHaRgE and (7 yrs), wife to DJ, in IL westml@... Nairduelle@... wrote: > From: Nairduelle@... > > My daughter caitlin is almost 8 and was always a sweet well behaved child and > she still is. Thank God. She does act bad sometimes like any kid but > nothing out of the ordinary. > She is a little obsessive at times, about what type of clothes she wants to > wear. She is much better behaved than my 'normal' daughter!! > > ------------------------------------------------------------------------ > 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 May 4, 1999 Report Share Posted May 4, 1999 , Caitlin loves to watch tv and all of her assorted movies and videos. She also loves dogs, we have two and I swear she communicates with them. She is very loving and kind to them, and she tells me sometimes that they are smiling or telling her something. She is so funny!! Does your daughter seem to have a sixth sense? She does, and I trust it. Thanks for writing, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 hello, i'm regan's mom , regan has a very mild case, CHaRgE, but i was wanting to make a comment on the behavior also. Regan has been grinding his teeth so bad we noticed that he ground some of his teeth down, we're going to the dentist this week, also he just seems that he has to be moving constantly, it has affected his school a little, sometimes in reading he will get up and do pushups in the middle of the floor. He is in special ed. and they say he is a good kid, just its getting harder to keep his attention. His geneticist said that maybe by starting him on a very small dose of ritalin for school hours, he might be able to concentrate more, his neurologist the same, can anyone help me with some comments on this please? thanks, debbie and regan. Tom Gloyn wrote: > > > Re: behaviors > > Jeanne noted some important examples of behaviour that we need to separate > from simply behaviours caused by deafblindness or sensory loss. But I do > not want a discussion of this to bring those with little babies or young > children to feel it may happen, or feel discouraged. These things will not > need to be an issue when their children grow up, as we will know so much > more! Also, the little ones are getting such a great start on communication > that it will help them better cope using language. > We need to look at the comments about things like the teeth grinding. I > think I have heard this alot on the list. (could be neurological, could be > stress related, could be important...? I was reading how two University of > Alabama doctors believe that it is a nutritional problem that can be helped > with increased dosages of calcium and pantothenic acid.) I also hear > things like " a little obsessive " . Could this be important? Could there be > mild degrees of this obsessive-type stuff? With Caitlyn, the sensory > integration problems and the auditory defensiveness could be because of the > sensory loss. It is the following examples of behaviour in some children > with CHARGE that concerns me: echolalia, the repetitive behaviours, the > lack of attention span, the tendency toward obsessive behaviour, the lack of > anger control, the hand spinning, the " tics " ... > Anyway, not to relate any labels or assume that it is all connected but my > " gut " instinct is that the " gut " has more to do with this type of behaviour > then the difference in vestibular function. I notice my student " tics " alot > more, is on edge and more aggressive, more spinning of hands, etc, before > bowel mov'ts. I find the research on Tourettes and the success with the > relationship to diet interesting. I find allergy and behaviour connections > interesting. I was also reading the recent study already with an 85% > success rate on sublingual secretin (a hormone which stimulates the > pancreas to produce enzimes, which was usually given to help diagnose > digestive problems.) The study originated because a Mom of an autistic boy > in Bedford, NH pushed it. Her son is now is totally verbal, has eye > contact, is sleeping all night, no more facial tics....etc..He had been > given the medicine during an investigation into his diarrhea and vomiting > which he had for 2 years! Two days later this kid was totally different. > Listen to this concerning many of the children: " ...social skills (change), > ...self stimulating behaviours seem to decrease, children with poor > appetites take on new food interests, verbal skills improve dramatically, > bowel movements and potty training improve, better eye contact improve as > social awareness improve, .... > One boy at our school got into the study. I'm not sure if they still need > people for the study. I thought this may be interesting for us. > Ann Gloyn, D.B. Specialist Teacher, Canada > > > > > > >Jeanne, > > > >You've very nicely posed the question we're all wondering about. Those > >behaviors you describe are very typical of CHARGErs. They are also > >typical of children with autism, deaf-blind children, and I have also > >heard the notion about early hospitalizations. > > > >The hospitalizations would make children somewhat defensive, but there > >are other children who do not have CHARGE but still have early > >hospitalizations who do not show the behaviors, and so while I think it > >contributes, it doesn't seem like enough to me. On the other hand, I > >think some of the tactile defensiveness could relate to the hospital > >experiences, and to some extent that could contribute to the behaviors, > >but,again, I doubt it can account for all of it. Autism is a tough one > >because we don't know what it is exacty or what causes it. But it is > >predominently a male thing (75-80%) and is not associated with other > >medical problems, and so I would prefer to not confuse CHARGE with > >autism. It's like having a headache. Could be caused by a brain tumor > >or by constriction of the blood vessils, and might feel the same, but > >the cause is different. That leads to the sensory problems. If all > >children with CHARGE were deaf-blind, it would be easy. But we still > >find that a lot of children who are not deaf-blind like Caitlyn, > >nevertheless have auditory and visual problems. The important thing > >about deaf-blind is that it is not deafness plus blindness, because if > >you put the two together you have an entirely different category of > >problems. Add to that problem the vestibular problems, and then I think > >we get to the source of the difficulty. Do we have any CHARGERs without > >vestibular problems? I don't believe I've ever known one. If we do, do > >they have behavior problems? If they do, what are their other senses > >like? > > > >I hope this makes some sense. > > > >Tim > > > >Jeanne McMullen wrote: > > > >> > >> > >> Tim > >> > >> I have a question for you. I thought of this question partly because > >> of > >> your latest post on behaviors and partly because I finally got a > >> chance to > >> view the videos of the conference in Boston and was watching the part > >> about > >> CHARGE behaviors. > >> > >> Both you and the person in the video referred to the behaviors being > >> common > >> in CHARGErs who are deaf-blind. However, my daughter has the typical > >> CHARGE > >> behaviors yet she doesn't have colobomas and her hearing loss is only > >> mild > >> and in upper frequencies where the audiologist doesn't feel it would > >> affect > >> her ability to function. > >> > >> Let me go on to explain that Caitlyn has crossed eyes (has had 3 eye > >> surgeries and they're still not fixed), a nystagmus, visual processing > >> > >> problems (mild cortical visual impairment), and severe auditory > >> processing > >> problems. > >> > >> I explain these things because though Caitlyn is not considered deaf > >> or > >> blind, she does have problems with her vision and hearing, and so this > >> may > >> actually strengthen your opinion. > >> > >> I'll also explain her CHARGE behaviors (or what the docs consider > >> PDD/NOS). > >> Very short attention span (can be counted in seconds), difficulty > >> making > >> eye contact, cannot interact with peers, (though she's improved her > >> interaction skills with adults), severe echolalia, inability to > >> understand > >> others emotions, repetitive behaviors (constant chewing, constant > >> echolalia), severe auditory defensiveness and other sensory > >> integration > >> problems. > >> > >> The latest we've heard from the docs is that these problems are most > >> likely > >> due to Caitlyn's medical history where she's spent most of her life > >> sick and > >> some times even critical. So she hasn't had much opportunity to be a > >> kid or > >> to be with other kids. > >> > >> Sorry to go on so, but I'm really wondering. Should we say that these > >> > >> behaviors are typical of CHARGE, or typical of kids with an extensive > >> medical history, or typical of kids with any type of visual and > >> auditory > >> involvement (or all of the above)? > >> > >> Thanks for letting me bend your ear a bit. > >> > >> Jeanne mom to Caitlyn age 3 1/2yrs cHaRgEr > >> > >> _______________________________________________________________ > >> Get Free Email and Do More On The Web. Visit http://www.msn.com > >> > >> > >> ----------------------------------------------------------------------- > >> > >> Wanting to get back in touch with old friends? > >> http://www.onelist.com > >> Get re-acquainted through a ONElist community. > >> ---------------------------------------------- > >> ------------------------- > >> 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@.... > > > > > > > > > >------------------------------------------------------------------------ > >Did you know that we add over 1,000 new e-mail communities every day? > >http://www.ONElist.com > >Explore a new hobby, discover a new friend, laugh at a new joke! > >------------------------------------------------------------------------ > >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@.... > > > > ------------------------------------------------------------------------ > The possibilities are endless! > http://www.onelist.com > ONElist has something for everyone! > ------------------------------------------------------------------------ > 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@.... 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Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 A co-worker's sighted/hearing (non-Charger) daughter refuses to eat anything but WHITE foods right now. Crazy kids : ) Beth, Intervenor and Project Coord. DeafBlind Services MN RylandB@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 My niece went through a thing for about a month where the only thing she would eat was raisen brand cereal.. well.... it kept her cleaned out. <G> has gone through a grilled cheese sandwhich thing a few times and Ken never has eaten any kind of bean (green beans, pinto beans anything with bean in the name) Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 Tom Gloyn wrote: > > > > Re: behaviors > > This may be too Canadian, but since we are still on the behaviour topic, I > was just reading about the loon population exhibiting excessive preening and > compulsive behaviour that is putting their population at risk. Biologists > from Acadia University found high mercury levels in them. The farther east > the more mercury content and the greater the behaviour change. ( Nova Scotia > is then a tail pipe for airborne pollution form other areas of the continent > they are thinking.) > Not that this is connected to anything, just interesting... > Ann Gloyn > Ann, OH great. CHARGE, Asthma, Shuddering Syndrome and now pollution. We can't win down here. Jeanie & MacKenzie from Nova Scotia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 , this is so funny (and interesting!) because is totally into TV/video games and DOGS! He loves dogs much more than people, and this is the only creature he gives love to, hugs, etc....hmm, maybe Chargers DO have telepathy with doggies~! : ) Quote Link to comment Share on other sites More sharing options...
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