Multidisciplinary screening clinic assessment report - 31.08.06


Background: Medical History: Isla was born via an elective caesarean for placenta praevia at 35 weeks gestation. Her Apgar scores were 9(1) and 9(5) and her birth-weight was 2585g. Her mother experienced multiple (12 in total) haemorrhages during her pregnancy, with the onset being at 22 weeks. There were no complications during the delivery.


Isla began sitting (“w” sitting) at 11 months and crawling at 12 months. Her paediatrician is Dr F. She has been seeing Dr L, rehab specialist for Botox and Dr A, neurologist.


She has been diagnosed with spastic diplegia. She is an only child.


ASSESSMENT Isla’s was assessed using the Bayley Scales of Infant and Toddler Development 3rd Ed. This test looks at different areas of development, and gives a picture of the child’s skills at one point in time, providing information to guide intervention. Repeat assessment at a later age gives further information about the rate of development.


1. Cognitive skills (Occupational therapy) The cognitive scale looks at how your child think, reacts and learns about the world around him/her. Tasks measure interest in new things, attention to familiar and unfamiliar objects and play with toys, problem solving, puzzle skills, pretend play and pre-academic skills.


Isla performed at a 16-18 month level which was on the 25th percentile for her corrected age, and within the normal range. Isla was able to place pegs in a pegboard, blocks in a cup, and place a single puzzle piece. She enjoyed listening to a story , and demonstrated relational play on herself. She had some difficulty with finding hidden toys, and was not able to complete puzzles.


2. Speech and language skills (speech Pathology) The language scale has two parts. Receptive Communication looks at how well your child recognises sounds and how much your child understands spoken words and directions.


Expressive Communication looks at how well your child communicates using sounds, gestures or words. Overall Isla displayed skills on the 8th percentile representing average development. Today Isla presented as a bubbly little girl, who was very communicative with the therapists. She readily performed for social attention and had engaging interaction skills.


Receptive Communication (Understanding): Isla performed at a 10-12 month level. Today Isla showed that she could understand the meaning of “no!” and respond to simple social requests (eg “blow a kiss”). Isla did not identify any of tour toys (eg ‘ball…cup…doll”) , but she did identify familiar people/things (eg “where’s your Mum?”). Isla is not yet able to identify pictures in books when named by an adult, although at home Isla is beginning to find familiar pictures (eg “cat”) in her favourite book.


Expressive communication (talking): Isla performed at a 16-18 month level. Today Isla used single-word approximations (eg “tuh-dah”), babbled in play (eg “ba-ba” and readily imitated babble and words. Isla said 3 words for us today (ie “Mum”, “ta”) and at home she has a reported vocabulary of approximately 15 words. She shakes her head and says ‘no!” to protest. Isla combines gesture and words to communicate her needs (eg puts hands upwards and says “Mum” to be picked up). Isla did not name any of our toys/pictures today. She was unable to answer “yes/no” questions correctly.


Feeding: Isla eats a variety of textured family foods and can drink from a sipper cup/pop top. She is also learning (open) cup drinking, which is a fantastic skill for building tongue-tip strength. Today Isla was observed to drool saliva more form the right side of her lips, because she is teething.


3. Motor (Occupational therapy & Physiotherapy) The motor scale has two parts. The fine motor part looks at how well your child can use his/her hands and fingers to make things happen. Tasks include reaching, grasping, block building and drawing. The gross motor part looks at how well your child can move his/her body. Skills include rolling, sitting walking, climbing, balance and ball skills.


Overall Isla displays skills on the 5th percentile representing low average development. This is a combination score reflecting average fine motor development, and delayed gross motor development.


Fine Motor (Occupational therapy) 17-19 month level. Isla demonstrated a mild increase in tone in her upper limbs, presenting as a stiff quality, and clumsiness rather than abnormal patterns of movement. Currently she is managing age appropriate activities, but may have difficulty as the requirements for precise control increase. Isla is able to hold a pencil in her palm, and scribble spontaneously, she can copy a stroke but not with direction. Isla is able to isolate her index fingers to point, and use a pincer to place pellets into a container, and post coins into a money box. She does not have the motor control to stack blocks on top of each other.


Gross Motor (Physiotherapy): Isla is a charming little girl who is using crawling as her main form of mobility. She crawls with an increased lumbar lordosis and with her legs abducted and externally rotated. When she sits she tends to “w” sit and is unable to sit with her legs out in long sitting or with her legs crossed . She occasionally walks up on her knees. Isla can pull herself up to stand but not yet through ½ kneeling. She was previously up on her toes when she stood or cruised but it was difficult to assess today as Isla was in bilateral short leg casts. She did however, display a tendency to incline forwards in an attempt to stand up on her toes. She has two more weeks of serial casting at PAHU and then is scheduled for a review with Dr Lowe (paediatric rehab specialist) in Botox clinic. She has increased extensor tone with the lower limbs having more tone than the upper limbs and her right side is slightly more then the left. Her deep tendon reflexes are brisk. She is currently receiving Physiotherapy with Michael in Campbelltown. Isla would benefit from ongoing physiotherapy to improve her gross motor skills as well as continue to monitor her tone.


4. Social - Emotional (occupational therapy): Isla is a delightful little girl who was a little unwell and irritable today. She tries to feed herself with a spoon and fork, and can drink small amounts from a cup. Isla assists with dressing, enjoys her bath, but W-sits for stability. She attends Family Day Care 2 days a week.


Summary and recommendations: 1. Discussion with Michael , treating Physiotherapist, regarding ongoing Physiotherapy management. Attend Botox Clinic at PAHU on the 20.09006 and AFO Clinic on 26.09.06 2. Isla will be offered Occupational therapy and Speech Pathology intervention through Campbelltown PAHU. She will be placed on our waiting list as high priority

Wednesday, September 20, 2006


Dr L was running late as usual...we didn't get in to see him until 12 and our appointment was for 10.45!


Anyway he's happy with the progress Isla has made since he saw her last time (in June I think) He said that the casting made a real difference so he's not going to go ahead with Botox just yet because Isla responded so well to the casting he's going to wait and see what the AFO Clinic says next Tuesday and try to get her into some AFO's ASAP. He wants them to have a fixed hinge so that she can wear them like her Thermoplastic Splints that Michael made her, but they'll also be able to move freely when she's built her confidence up more.


He was very pleased with her knee walking because he said that she's opening up her hip joint well (most kids with Spastic Diplegia can't do this) so he said it's a good sign (he smiled a lot while she did it!) He thinks she'll do well with the AFO's and will see her again at his next Clinic which isn't until March next year!


He explained that it's better for us to try the AFO before the Botox because she'd need to wear the AFO's once she's had the injections anyway (and will probably need injections in her ankles as well to stop them from rolling) so she'll need to be used to it - and also because it's non-invasive.


So it all went pretty well. Michael and Dr L said to just continue putting her boots on her (will have to get her another pair, these ones are ruined already!) and encouraging her to walk!

Wednesday, June 07, 2006 First off the bat, I really like the Dr. He is really lovely and meticulous - what I like!!


He observed Isla for a while while she played with myself and Michael (physio). He looked at her hip xrays and said they were not valid because she was twisting so much when she had them taken in January (with three people holding her down!) he cannot rule out dysplacia in the right hip. She will need to have another set of hip xrays done but we're not sure when.


He felt her legs, Isla surprised us all by not fighting him like she always fights Michael! He noticed that her right leg is still significantly stiffer than her left. Both legs, however, are not loosing spasticity - they are actually becoming more spastic - that's so disheartening. Isla is also now standing higher on her tippy toes.


She is still cruising but won't stand unassisted. Isla *let* Michael pick her up again!! He held her hands above her head and walked behind her - she was actually taking steps - you should have seen the smile on Michaels face! he was beaming!! It's something that she's only recently started doing, but not very often. He said that it was a very good sign.


Also, Isla showed off her knee walking (another new addition) and Michael was very impressed, as he said it indicates that her pelvic stability is improving (phew!) meaning she'll better be able to stand/sit etc. Previously, her pelvic muscles were weak and she would fatigue quickly.


Dr L noticed that her thumbs are sitting at a strange angle, thinking that she may have spasticity in her hands as well, but her fine motor skills are fantastic, so it isn't a real concern of his at the moment.


What is the main concern to Dr L is contracture. Contractures occur when a muscle is not put through it's entire range of motion, causing tendon shortening. If this is what's happening for Isla, it means there will be less that they can do to help her.


Isla is a fantastic candidate for the Botox injections, however, because she seems to be going slightly downhill, he wants to give her the injections before she turns 2, which isn't government approved, however, there are many injections/medicines that children are given without Government approval.


It's a bit scary to take this next step into having the injections, but if it's going to help, then how can we not? For the injections, Isla will have to be admitted into the Children's Hospital at Randwick for the day. She will be given Laughing Gas while the procedure is done - that will be awful. The injections take about 3 weeks to start working and last about 6 months. She will more than likely have the serial casting (weekly) after the injections to maximise their effect. We see Dr L again when he gets back from Overseas.


Our next step is serial casting. Isla will be in plaster probably to the knees only, with her feet at 90 degree angles. We're still waiting to hear when and where we'll be having the casting done, it will more likely be at the hospital so that Michael has more people to help him as Isla was a tad difficult when having her thermoplastic splints made.


Dr L and Michael seem confident that Isla will get out of the plaster, they said it's not uncommon in children with the same sort of spasticity as Isla - so that'll be something to watch out for. Isla will have to have special orthotics made, called AFO's (Ankle Foot Orthotics) which will need to be made in the hospital by an Orthotist. They are really expensive (over $500 each) and will need to be altered in the hospital as well. We've filled out an application for funding for the splints, but, understandably, there's a subsantial waiting list for the funding. The AFO's will be the next step after the casting, but we have to wait for Isla's feet to grow big enough to fit into "proper" shoes as the AFO's need to be worn inside boots.


So, that's the story so far. As for me, feeling quite overwhelmed. Everything seemed really positive leading up to this appointment, and it's all quite crap now really. I'm not worried about the financial side of things, because we'll be able to pay for it all, with no drama's, but I'm just concerned that all her wonderful progress has stopped.


I'm sad because Im doing this all alone (so it seems as Ian forgot about her appointments) and I seem to be forever taking her to this specialist and that specialist, it's really exhausting - not physically but emotionally. Ian doesn't seem to understand, and nobody but the EB Forum girls really understand or appreciate what the CP rollercoaster is like.


I know that we are incredibly fortunate in how mild Isla's CP is, I saw first hand just how bad some children are while at the Paed Allied Health unit, but it doesnt stop the hurt inside. I just want my little duck to have every opportunity in life and I want her to be happy and healthy. I want to stop going to specialists, I want to stop trying to put her stupid splints on her, I want to be able to sit her on the floor and not have her fall backwards. I want her to be able to stand up properly. I want her to not get cramps in her legs. I want her to stop having brusies on her legs. I want her to be able to run and jump.

Monday, March 20, 2006


Missy Moo had her appointment with the Opthamologist Dr H today, who we had to wait 2 1/2 hours to see - *insert cranky smilie here* Lucky he was really nice!


She was a very brave girl, despite the fact that he literally had her eye ball pushing out of her eye. Poor little mite soldiered on, although Mummy's ears are still ringing!!


The good news is that he said that her eyes are fine WOOT WOOT!! One worry to cross off the list! She is slightly long-sighted (just like her Mummy) but he believes that it will correct itself by the time she's ready for school!


We don't have to worry about having her eyes checked for another 3 1/2 years - thankfully, we're in no rush to go through it again!


We're waiting to be contacted by the Co-ordinator for Pathways so we can get involved with the Spastic Centre and then hopefully be accepted into the Cerebral Palsy Clinic at either Sydney Children's Hospital or Westmead. Fingers crossed we get in so we can kiss the Paed goodbye!


She's doing really well in all departments now, eating is still an issue, but Isla now has 11 teeth - with another 2 on the verge of cutting through! She's sleeping like a bandit now, so I think that's helping her keep the weight on!


Still trying to walk, little dare devil is even standing without holding on - I think she'd like to see her Mum with a pace-maker by the time Im 25!


Will post another physio update soon!