Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Hi Jackie, in a few cases I recall from the listserve, including Chantelle the young adult with CHARGE, the seizure activity had occurred more in the frontal lobe. Chantelle reported that they were not able to identify her seizures until they placed the electrodes low on the forehead during the EEG test. Dr. Jules Constantinou (neurologist) who presented in INDY commented that many of the behaviour parents were describing would indeed involve frontal lobe activity. Also, do you have Jude Nicolas paper that applies to the neurological maturation of the brain, affecting teens with Congenital Rubella? The aggression and self abuse you reported somewhat mirrors what also happens in the latent manifestations of Rubella. Is there any recent Vaccine history relationship to any of the onset? (particular Hep I have seen vaccine reactions but so hard to prove due to the complex medical make-up of CHARGE. Other CHARGE issues: migraines, food allergy, intestinal and colon issues, wisdom teeth, latex allergy. Judith Bluestone (HANDLE) would probably comment on cranial nerve issues due to the maturation of the unique CHARGE cranium. Many parents found success in CST or AK therapy or HANDLE. There was a recent study done in Calafornia on the use of the drug in marajuana, (baked in Brownies) successfully combating aggressive episodes in autistic individuals. No side effects, and also addressed any OCD tendencies. Brown will like that one, I know they could legally use it in Denmark! I will scan my paper, case study CHARGE behaviour (from the 99 Canadian conference) as I also promised Martha. Tim Hartshorne also will be a great help I'm sure. ANN GLOYN, Deafblind and Special Education Specialist Teacher, Canada Jackie Kenley wrote: > Forwarded for Brown..any suggestions? > Many thanks, > Jackie Kenley in San Francisco > > Dear list members. > > > > I am currently working with a young man (24) who has CHARGE. Over the past > > few months his behaviour has changed dramatically. He used to be a > > passive person who was a challenge to engage, whilst he continues to be > > passive he has recently developed some quite aggressive behaviours > > which are > > directed towards both himself and others. His team and Mum are finding it > > increasingly difficult to support him. > > > > The behaviours appear to start as a 'seizure' of types with the young man > > raising his arm to his head and touching his forehead with the bottom > > of the > > palm of his hand. After the 'seizure' he would then go through a > > period of > > time where he appears confused and if staff approached him he would attempt > > to grab or scratch them. There would then sometimes be a noticeable change > > in his demeanour where he would either smile or appear to come out of the > > confusion where staff could approach him without risk of injury. > > > > The behaviours over time have increased in intensity and frequency in both > > the 'seizure' stage and the young man's subsequent behaviour after. The > > 'seizure' now takes form of the young man again raising his hand to his head > > but he now vigorously rubs the front section, to a point where he is > > loosing hair in a specific patch. He is also vocalising very loudly, almost > > a roar. (he is an individual who does not communicate vocally in any other > > circumstance other than specific vocalisation sessions). The behaviour > > after the seizure has also developed into grabbing anyone who is around, > > including Visitors and other people who use the service. He has also begun > > to self abuse in the form of slapping his face, punching his body and > > scratching / digging his nail into his arm. He has also thrown objects and > > lifted tables he has been sitting in front of. Associated demeanours for > > the young man while the episodes are occurring can range from smiling, > > grinning, frowning and staring into space to crying. The approach > > agreed to > > be used by all has been to give him space while providing reassurance > > at the > > same time. > > > > The episodes have also occurred in the community with his mother and staff > > as well as while in the cab to Day centre, on weekends as well as in respite > > I.e. The episodes occur in all aspects of his life. > > > > In an attempt to cover all aspects of what could be the cause of the > > behaviour he has been regularly attending appointments with the Neurology > > department at his local hospital in London. In the appointments with > > Neurology he was prescribed with Carbamazepine in an attempt to see if the > > seizures were epileptic activity occurring in his brain. The young man > > has > > had a MRI scan in which no activity was monitored. Medicating the > > young man > > was thought to be the most effective way of determining if the cause of the > > behaviours were due to epilepsy. After initially starting the > > medication a > > decrease in the amount of seizures / behaviours was noticed by us and his > > mother. However over the past two months the frequency of the behaviours > > have increased to an extent that filling out an ABC chart for every incident > > is an operational impossibility and young man has been receiving higher > > amounts of staffing than he is funded to receive. In his most recent > > appointment at hospital he was assessed not to be suffering from epilepsy > > and a way of determining for certain reduction of the amount of > > Carbamazapine administered was decided to be the best course of action. His > > dose of 600mg per day was reduced to 400mg. This appears to have had a > > detrimental effect in that the frequency of the behaviours has further > > increased and he appears now to be having body convulsions and jerking > > as if > > he were surprised or scared. > > > > From the information gathered in the ABC charts we have established no > > pattern to the episodes, leading us to believe that it is most probably > > medical in nature. We are however going to carry out a full functional > > analysis of the behaviours. > > > > I am firstly asking you for any help you can offer, in particular I am > > looking for articles that we can use to inform doctors and specialist about > > CHARGE and in particular any formation about the links between behaviour > > and CHARGE and any successful interventions either medical or behavioural. > > My feeling at the moment is that there is a degree of ignorance / lack of > > understanding from his current doctors. I appreciate completely > > that it is a very complex medical condition with a huge variety of > > presentations but would like to feel that I have tried and maybe > > educated a > > few health professionals along the way. > > Anyone else that you could suggest who maybe able to provide some insight > > into this young man's current situation? > > Many thanks > > Clair Waterman > > Practise Development Worker > > Sense South East Outreach Team > > London > > 0 > > > > e-mail address: cwaterman@... > > -- > Jackie Kenley, CDBS > (inside CA only) > ext 21 > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2002 Report Share Posted October 3, 2002 Hello, Oh my gosh that e mail really got to me. I know how difficult the behaviors are to analyze and get the proper help for! It can be very draining on the staff and families too. I sure hope they get to the bottom of this. I also think they could be medical in nature. Possibly he needs an exam to rule out problems with the ears, or sinuses, and some blood work done. I sure hope it doesn't escalate before an answer is found please keep us posted. I have went through some similar things with my son who is 19. It is a true heartbreaker. 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.