Don't be concerned about this- it looks very black and white and doesn't describe all of me, but I thought I would share it in any case. It was written by the developmental paediatrician at the hospital whom I see every couple of years.
Rosie XXXXXXXXXXX
Child Development Team Report
20 September 2010
Problems:
1. Intellectual disability
2. Cortical dysplasia
3. Epilepsy
1. Topiramate
2. Lamotrigine
Report
I was delighted to see Rose again along with her mother, Philippa and Hannah, her speech-language therapist from Kimi Ora School. Rose has high needs ORRS funding but the application for Very High Needs was unsuccessful. The school has initiated a review of funding as Rose’s needs are definitely very high.
Regarding communication, Rose is trying to use a few key words but there is great inconsistency in the sounds that she makes for the same thing, indicating a significant motor planning or dyspraxia component to her expressive communication and articulation. She also has a lot of drooling which again reinforces her poor oro-motor control. Rose’s receptive language is also much delayed. She understands a few words and routine commands at the level of a 12-15 months old. Strategies being used currently for communication include PECS and a Super Talker communication aide.
Regarding her motor skills, she enjoys riding a modified trike. She tends to have jerky movements when she walks. She is able to jump on the spot and likes the trampoline. She is no longer using the AFOs as she has seen Mr Gregg recently. She does walk with a crouch gait with bent knees and this seems to be a strength issue. It is difficult to walk with Rose because she has no sense of safety and will walk across the road and likes to run when she gets the chance. She sometimes needs a leash to keep her safe. Regarding Rosie’s fine motor skills, she is able to make marks on paper but not write anything recognizable.
Socially, Rose makes eye contact. She waves ‘bye bye’ and she does imitate social gestures but there is often a significant time lag of several seconds before she can produce a response. Rose can get up to mischief and it is difficult to discipline her as she doesn’t seem to have an idea of consequences and she doesn’t seem to react if she is told off or senses disapproval.[1] However she is not aggressive.
Regarding self-care, she can try to pull her pants up or down but she is still dependant on dressing. She wears nappies. At school they take her to the toilet every hour and she wears underwear there but there are accidents. She also has learnt that making the sign for toilet is a good way of getting out of work and she is well versed in work avoidance techniques. She can use a spoon but she is very messy. It has been difficult to assess her developmental skills in the past because her skills are very dependent on her motivation. Rose is becoming interested in TV, whereas previously she has not really registered it. She likes Kid Zone and has just started to enjoy the Wiggles.
Regarding the therapy she currently receives, Rose loves RDS and is learning to trot on the horse. She has had twice weekly music therapy sessions since the age of 3 and now it is provided at school. She really responds to music and most of her learning occurs through music and often the teacher at school uses music to help ‘switch her on’. She loves music and can play instruments for prolonged periods, whereas otherwise her attention span is quite short. She is starting to be able to make singing sounds and can use PECS cards in music therapy to indicate what she wants to do.
Her epilepsy is managed by Dr Thorsten Stanley. She has seen him recently. He has also discussed scopolamine patches to manage the drooling and I indicated that I was comfortable with trialing this. Rose also sees Dr Esko Wiltshire, Paediatric Endocrinologist regarding her precocious puberty and she is on injections to suppress puberty until an appropriate time.
Regarding her physical health, Rose sleeps okay and eats well. She doesn’t gag or cough when she eats. She has also seen Mr Keith Maslin, Ophthalmologist regarding her squint. Over the past year she has chipped both her front teeth.
Regarding services and supports, Rose gets Child Disability Allowance and there is a respite care provision. The family is planning to use Oasis. Rose gets hospital nappy supplies.
Examination
Rose looked well. She had a brief seizure during the assessment.
Impression and Plan
Rose is doing well. Her developmental skills are around a 12-18 month old level with strengths in her social imitation and in her musical appreciation and ability. She continues to require the input of several paediatricians regarding her epilepsy and precocious puberty, and I will continue to see her approximately on an annual basis regarding her developmental skills and monitoring appropriate services and supports. Philippa indicated she doesn’t find it useful to see other doctors in our service, such as registrars and I indicated that because of demand outstripping supply, the annual review with me might end up occurring at 18 months rather than a year, but we will do our best to provide a developmental reviews service to Rosie.
[1] Parents note: though this is changing
