Tuesday, June 30, 2009
This is the letter that arrived after our review with Dr L, one month after Botox.
"Isla had the botox injections on 21 May 2009. Repeat xrays were done at the time and showed RMP of 11% and LMP of 4.5%.
Although it took a little while for Isla to wake up, she went home that day.
Her parents report that it was easier to get her into orthotics for the first week, but she was a bit wobbly on her feet. Now, she is not falling as much. She can heel-toe walk.
Isla's parents report that Isla has been reviewed by Dr B, and in his assessment, Isla is suitable for mainstream school. He is happy with her results.
When I saw her today, she was still tight, particularly in the right gastrocnemius and soleus, more than the left. She will need casting. Gastocnemuis length was just on plantargrade on the right and +15 on the left, with initial at -10 and plantigrade respectively. Soleus length was +15 on the right and +25 on the left, with initial catch at plantigrade and +10 repectively. Isla was walking straighter with her right leg, with positive progression angles bilaterally.
She will be reviewed in 2 months time".
Again, no idea what it all means, but will endeavour to find out today at Michaels.
Tuesday, June 23, 2009
We had physio for the first time since Botox yesterday.
Michael is VERY pleased with the results from the Botox (which are supposed to peak 3-4 weeks after injections). Her range of movement on the right went from -10 degrees to +2 degrees. She is also walking flatter than ever, and has less swing with her hips.
As expected, Isla went into plaster on her right leg again - to help maximise the stretch in the muscles while the Botox is taking effect. She stunned us all by picking green plaster, we all expected her to go with pink or purple.
She's such a trooper, I can't remember how many times she's been in casts now, and she never complains.
Pics to come soon.
Thursday, June 18, 2009
After the appointment with Dr L, we head down the road to the Prince Of Wales Hospital to collect Isla's new orthotics. We get there, and Isla LOVES the purple butterfly design I picked for her *phew*. The Orthotist still needed to cut them down etc so we go back tomorrow to collect them, but we did bring home the above-pictured wrap around braces.
Monday, June 15, 2009
Isla did really really well.
Dr B said that there's absolutely no reason why Isla shouldn't go to kindy next year. Hooray!
The assessment had to go as long as Isla could keep answering questions correctly. Dr B said that in our area, he'd never had a child as young as Isla get so far through the test. There were pieces from the test kit that he had never used before, because no one had reached that far :)
So, we'll get a copy of the report when it's ready, so will the DET and we'll set about finding a school for Isla.
Friday, June 12, 2009
Today Isla has her appointment with Dr B, the one I had so much trouble organising earlier in the year.
So, they sent a letter the other week asking me to confirm the appointment by a specific date. With all the goings on with Botox and me going back to work, you guessed it, I forgot to confirm. I called them up and told them I received the letter after date (ha ha!) and they said no problem - excellent.
Inside the envelope with the letter of appointmnet was a questionnaire. 10 pages worth that I have to fill out and take with me to the appointment. Quite generalised questions, but it makes me wonder the actual point of me filling out the damn thing when they're going to be assessing her anyway?
I wonder if they read my answers first whether it will sway their thinking in anyway? Will it have a bearing on her results?
The questions go like this: (and I'm jotting down some of my answers for future reference too!)
REASON FOR REFERRAL:
Who suggested your child be assessed by this service? Our Paed, Dr F.
What are your main concerns, if any? Isla has Cerebral Palsy. We'd like to have her assessed to see whether she's physically ready for school in 2010. Concerns: Fine & Gross motor skills.
Are your child's difficulties causing problems within the family? Please explain. No
What do you think are your child's strong points and good qualities? Isla is very thoughtful and caring. She is very affectionate towards family and friends. Isla has good communication skills and a large vocabulary.
What are you expecting from the clinic? Some indication on where Isla's development is at, what things we should watch out for in the future, and help with finding assistance for Isla.
Was your child born in Australia? Yes.
What languages are spoken at home? English.
Other children in the family. Sister, Harper.
Primary carer. Mother.
Who lives in the family home?
Any other learning problems in the family?
Medical illnesses on either side of the family? Diabetes on both sides of the family.
Were there any medical concerns during the pregnancy? Please describe.Grade IV Placenta Praevia. 12 haemorrhages, 1 clot betweeen 25-35wks gestation. Bedrest from 26 weeks.
Did the child's mother take any medications or other drugs during the pregnancy? Please describe. Intramuscular steroids at 28 weeks.
In which hospital was your child born? Liverpool.
Was the child born full term? How many weeks early? No, 35+2wks.
How was your child born, eg normal delivery, caesarean etc? Emergency caesarean.
Where there any complicaitons with your labour? N/A
Birth weight? 2585grams
Birth length? 49cms
head circumference? 34cms
Was your child unwell following the birth? Jaundice.
Do you know the baby's APGAR scores? 1min? 9 5 mins? 9
How many days old was your child when discharged from hosptial? 6 days.
Immunisations up to date? Yes.
Please list any medical information regarding your child: Past and present health, include details of any illnesses, congenital or medical conditions, accidents or operations, seiaures, hospitalisations, head injury, headache, febrile convulsions, constipation, diarrhoea, etc. Cerebral Palsy. Suspected blank seizures. Tonsilitis. Occasional 'flu (including fever & vomiting).
Medications? please list. N/A
Does your child have any allergies? Drugs? Food? N/A
Have hearing and vision been assessed? Hearing at birth - passed. Vision with Dr H in 2006.
Have you ever had any concerns about your child's hearing? No.
If you were able to put an age to your child's current skills, what would it be?
Rolled over - what age? Not sure.
Sat alone without support - what age? 10 months.
Crawled - what age? 11 months.
Pulled to stand - what age? 12 months.
Walked alone - what age? 2years 2 months.
Run - what age? 2.5 years
Jump - what age? 3.5 years.
Walked up stairs - what age? 3.5 years.
Tricycle - what age? 3 yrs 4 months.
Babble - what age? 6 months.
Said first words - what age? 9 months.
Put two words together - what age? 18 months.
Speak in sentences - what age? 2 years
Used a spoon him/herself - what age? 12 months.
Dress him/herself without help - what age? Still unable 4.5 years.
Toilet trained - bladder day/bladder night/bowel - what age? 3 years 7 months.
Does your child use both sides of their body equally? No.
What was your child's first word? Isla - 9 months.
Does your child point to indicate their needs? Yes.
Does your child have a preference for the: Right Hand, left hand or no preference? Isla has better control with her right hand and usually picks up pens/scissors etc with the right, but will often swap hands mid-activity.
Please describe how your child helps you with dressing him/herself? Isla tries to do up and undo buttons but doesn't have enough fine motor control. She also tries to put on pants and jackets but does not have the flexibility to bend/stretch to do it unaided.
Please describe how your child helps you assist with feeding him/herself? Isla is able to feed herself all sorts of food with minimal difficulty. She is learning to use a knife properly.
Does your child know any: numbers? Yes, Isla can count to 20 and to 10 in Spanish. letters? Isla knows the alphabet by heart and can identify letters by sight. She can also identify some words. shapes? Isla knows a number of different shapes. colours? Isla knows lots of different colours.
Are there any skills which your child used to have that he/she no longer has or any that have deteriorated? If yes, please explain? No.
Does your child use a feeding tube or a special feeding method? No.
Does your child have a special type of diet or a food allergy? If yes, list reason or diet type. No.
Does your child have problems sucking, swallowing or chewing? No.
Is your child a fussy eater? Yes.
Does your child have any problems with constipation, diarrhoea or vomiting? No.
Does your child eat 3 times a day? Yes.
Is your child eating chopped soft foods? Yes, and hard food also.
Is your child drinking from a cup? Yes.
Is your child eating meat, chicken, fish or eggs most days? Yes.
Is your child eating fruit and vegetables most days? Yes.
Please describe your child's behaviour at home? Isla is generally very well behaved. She happily plays on her own with her toys, uses the computer, and colours in. She is a little defiant at times, particularly at bed time.
Please describe your child's behaviour at preschool/school or away from home? Isla varies from being clingy with the teaching staff to very well behaved and follows directions without problems.
Describe your child's current sleeping pattern:
Does your child sleep too little or too much? No.
Does your child snore? Yes.
Does your child have disruptive sleep behaviour? Yes.
Does your child make normal use of eye contact? Yes.
Does your child play with toys imaginatively (eg pushes toy cars around, feeds dolls, tea parties etc)? Yes, Isla has a very vivid imagination and is often found in her room hosting tea parties and role playing with her toys.
Does your child enjoy lining up toys? Yes - Isla especially likes to line up fridge magnets and pegs.
How well does your child play with other children? Isla plays well with her peers - although she is very selective who she'll play with.
Does your child seek comfort if they get hurt? Yes.
Does your child show affection towards other people? Yes, although she is generally very shy and reserved upon meeting new people.
Does your child bring you objects to show you? Yes.
Does your child use his/her index figer to point or ask for something? Yes, and sometimes her thumb.
How does your child react to loud noises? Isla is scared of loud things such as lawn mowers , hand-dryers etc. Upon seeing such items, Isla's first reaction is to cover her ears and hide from the item until the noise is removed.
Does your child have any obsessions or strict routines? please describe. No.
Does your child have excessive tantrums? If so, in what circumstances? No.
Is your child overly aggressive or destructive? please describe. No.
Is your child overactive? please describe. No.
Does your child have poor concerntration? please describe. No.
Has the long daycare, childcare, kindergarten or school indicatied any concerns to you about your child? Only about Isla's occasional toileting accidentgs and general clumsiness.
Has your child ever repeated a year at school? No.
Has your child had any previous assessments related to their development, learning or behavious? if yes, please provide the details. Isla had a Bayley scale assessment at 20 months by the MCAT team. Peabody Fine Motor Assessment by OT in Feb 09.
What other agencies or professionals have been involved with your child?
Have there been any major events, changes or traumas that have occurred wihtin your family, recently, or in the past? Arrival of baby sister in November 2008. Mum has gone back to work as of May 09 after Maternity Leave. Isla seems to be distraught with me leabing her at daycare and dancing lessons.
Is there anything else you feel may be valuable for us to know for the assessment and treatment of your child. Isla can walk approximately 100 metres before tiring (at most). She generally falls over every 15-20 metres. She cannot go to the toilet without assistance (cannot get on to the seat).
Considering the issues/concerns you have identified, what do you believe is the cause? Obviously Isla CP is the cause of her main problems, but I do wonder about learned helplessness - with Isla insisting that she can't walk very far (at the shops for example) or can't dress herself.
Are there any further problems that you believe stem from these issues/concerns? As above.
What do you fear moset about these issues/concerns? That Isla will struggle with day-to-day tasks at school (particularly navigating school yard/playground) and toileting.