TOTS 100 - UK Parent Blogs

Wednesday, 22 December 2010

Occupational therapy report

B was referred to children's occupational therapy by his physiotherapist with the reason for referral as sensory processing and play skills. We received a report in December 2010.

B has ongoing input from paediatric physiotherapy, speech and language therapy and is under the care of consultant paeditrician. He started nursery on 20 September 2010 and has also started input from Portage.

Ensure B has all the appropriate input to meet his fine motor and sensory development needs both at home and within the nursery setting.

Assessment took place at home using a variety of non-standardised and informal observations. B has recently learned to walk. He previously mobilised for a long time by walking on his knees. He requires close supervision due to his decreased ability to employ saving reactions when he falls. B demonstrates an unusual dyskinetic movement patterns. B is able to independently stand up in the middle of the room and will squat to pick up objects off the floor. He is less confident outside and tends to hold an adult's hand.

We are using the Mclaren Major special needs buggy outside which is working well to meet his outdoor mobility needs. B frequently w-sits and sacral sits (sitting back on his pelvis). B is able to ascend stairs on all four limbs but does not yet attempt to step. Nor does he attempt to descend stairs.

B engages in fine motor skills very well. B plays parallel to others. If he wants something he will make eye contact but this is minimal. He can use a shape sorter and puzzle. B's sense of exploration has improved. He posturally tires more easily than his peers and this is due to his low tone. We go over some self care - eating, drinking etc.

B uses vocal sounds to communicate but does not yet use words. He turns when his name is called but not consistently. He smiles and laughs. He displays hand-flapping movements when excited.  

B presents with mild delay in his fine motor and perceputal skills. B's gross motor skills have improved however he still struggles to negotiate stairs, walk outdoors and experiences regular falls. These are secondary to an ongoing decreased core stability.

Recommendations going forward occupational therapy to continue. Provision of a Heathfield chair to promote posture and functional development.

Thursday, 11 November 2010

Portage Summary Report

B was referred to Portage in July very kindly by A's school Inclusion Manager. Reason for referral was global developmental delay. Portage is a home visiting teaching service for children from 0-5 years of age who are delayed in their development. They report B as having hyper-flexible ankle joints andunsteady  when standing and walking. He often falls and wears a protective helmet. General health is good with no concerns regarding hearing or vision.

B is described as being a delightful happy and busy little boy. He understands the routine of the Portage visit. Showing an interest in toys. Not yet toilet trained. Language for communication is the area B is most delayed in. He makes his needs known by a mixture of vocalising, passing objects, eye contact etc. B sometimes looks up when his name is called. He can make a choice between two objects. He is unable select a name object. He likes looking at books and mark making.

B understands that things exist even when they are out of sight. He looks for hidden objects. He can post shapes in a shapesorter. He can complete inset puzzles. He can build a tower. B loves to explore. Push and pull things, press buttons and switches.

B can crawl fast. He has poor coordination and falls often. He can stand at a table. But in unable to move from sitting to standing or climb. He cannot go up and down stairs. I want B to stay at pre-school then attend his sibling's school.

B is now almost age appropriate in his personal social and emotional development and understanding of the world but delayed by 6-9 months in his physical development and 1-1 1/4 years in his communication and language. B is making good progress.

Sunday, 31 October 2010

Bastian takes his first steps

Bastian now aged 2 and half takes his first steps unaided on Halloween night in front of the whole family. Enticed by the sweeties available he does the one thing we feared he might never do -walk!

Wednesday, 8 September 2010

Paediatrician appointment

We're back at the paediatrician's today regarding delayed walking and abnormal brain MRI scan.

B is still not walking independently although recently he has started to take about 2 to 3 quick steps which are poorly co-ordinated. He is also delayed in other aspects of his development including his speech and language. He has made some progress in his play however it can be repetitive and he needs help to move on to a different activity. He has started using motoric type of communication such as using our hands to indicated what he wants. His eye contact is fair and he responds to his name but inconsistently.

Neurological examination is the same as before with asymmetrical brisk deep tendon reflexes and globally reduced muscle tone especially in his lower limbs. He is now beginning to stand, knee walking very well and when led by both hands he walks with a wide base gait and tends to drag his left leg.

B's MRI has shown some generalised non-specific abnormalities (gee that's helpful) with slight prominence of his ventricles and thin, featureless corpus callosum. There was also limited preriventricular signal change around the trigones of both lateral ventricles.

He has had some plasma amino acids and organic acids done. Initial blood tests showed a generalised raised amino acid pattern and therefore this was repeated. His repeats have shown slightly raised alanine and proline. She is unsure what the significance of this is.

In view of all of the above symptoms, and his abnormal investigations, b will be referred to the Neurologist for a second opinion to enable us to reach a more conclusive diagnosis.

Friday, 13 August 2010

Occupational therapy

B has his first occupational therapy appointment at home. Again she is a lovely lady. I feel so spoiled that B has so many fantastic professionals looking after home.

Wednesday, 21 July 2010

MRI Scan

Today is B's MRI scan. This is one of the scariest days of my life. We go to the big children's hospital instead of our local hospital and head for the Neuroradiology department. B's isn't allowed any food, only water in the morning and that's it. He is going under general anaesthetic and I'm terrified. When they put him under he goes all floppy and looks more asleep then when he's asleep (he normally fidgets in his sleep). He looks dead to me and I burst into tears. I know he will be fine but I don't like seeing him like that. I'm so glad B's daddy is with me for comfort. I would never have got through this appointment on my own. We have to wait patiently whilst they take our sleeping prince off for the scan. It doesn't take too long but when they bring him back to ward he is still asleep and has difficulty waking up. It's such a relief when he does wake up and gets back to his normal cheeky self. Now we have to wait again for the results of the scan.

Wednesday, 23 June 2010


We are at Orthotics today to collect B's crash helmet and new boots!. Yay

This is probably one of my favourite photos ever! Taken at Legoland. You can see both his helmet and his boots.

Wednesday, 9 June 2010


B has been referred by physio to Orthotics. He has an appointment today to be fitted for a crash helmet and special boots.

We choose black ones because they look like cool Dr Martins.

Tuesday, 25 May 2010

Blood tests

Bastian has to have loads of blood tests. They are looking for haemoglobin and full blood count. Thyroid function, urea and electrolytes, serum creatine kinase, plasma amino acids, chromosome analysis and search for Fragile X. Also urine tests for amino acids and organic acids. Getting urine off B is a real challenge. He absolutely does not pee on demand. I have to stick this bag thingy over his credentials and put a nappy on. Most of the time they leak and you have to do it again. So annoying. And then you have to squeeze the wee out of the bag and into a tiny pot.

Monday, 24 May 2010

Occupational therapy referral

I've got a letter today from children's occupational therapy service. B's Physiotherapist has referred him to OT about his difficulties with developmental delay. They offer an initial assessment and intervention in the form of therapy sessions and home or school therapy programmes. There is a high demand for this service and there is a long waiting list (bla bla bla- where have I heard this before!) They aim to offer an appointment within 18 weeks. I've got to fill out a questionnaire and send it back.

Wednesday, 21 April 2010


We're back in the paediatric today for a review of B's motor progress. He is just over 2 years old now. Pulling himself up to stand and cruising around furniture. He takes some steps when held by both hands but his gait is asymmetrical with a slight dragging of his left leg.

He has marked hyper-mobility and his reflexes remain exaggerated. Muscle tone is slightly low but  this might be related to his hyper-mobility.

I've been researching cerebral palsy and ask the paediatrician about this. She decides to organise an MRI brain scan and do creatinine kinase enzyme levels. Physiotherapy to continue and a review of B once the results of the tests have been received.

Tuesday, 20 April 2010

Hearing test take two

B has another hearing test today because they had trouble testing him the first time. In the Audiology Clinic they put him in a box like the TARDIS but it's not bigger on the inside. It's sound proofed inside. I had no concerns about his hearing but he is still not saying any words. He vocalises sounds when interacting. He passed the distraction test today with better and faster responses then his first test in December 2009. Consultant Community Paediatrician in Audiology says B's hearing appears to be adequate for his speech to progress further and he is discharged from the Audiology Clinic.

Wednesday, 24 March 2010

Speech and language initial assessment

B was referred to speech and language in October 2009. He was on the waiting list for a long time and seen on 24 March 2010 (day before his 2nd birthday).

B was referred by his consultant paeditrician for assessment of his communication skills. The following results were recorded.

B can stand but is currently unable to walk unsupported. He is late achieving all his developmental milestones.

Hearing checked and passed. He appears to be hearing. Short attention span but consistent with global developmental delay.

Mimicked using a phone. Hugs a teddy and pretends to feed a doll. B understands familiar routines and situations. Has not yet made link between words and objects. I do Makaton with him but he does not copy.

B says "ga" when he puts a phone to his ear. But otherwise is very quiet.

No concerns regarding his use of language and communication skills.

B's pre-language skills are developing in expected order but are delayed. He needs to be taught everything specifically as he has not learned to generalise.

Encourage pretend play. B would benefit from a group for children at his level and will be placed on list for a group. Then we are given a 'care plan'.

Speech and Language assessment

B has his first speech and language assessment today. He will be joining an early language group. The group will focus on his vocabulary skills, develop his comprehension of language and improve his ability to follow adult led activities. It's quite far away and I'm not happy about driving so far for a half an hour group.

I manage to persuade them to change his appointments to a more local clinic.

Thursday, 14 January 2010

Delayed Motor Milestones

We're back at the consultant Paediatrician today for a review. The problem is still 'delayed motor milestones'. Thank goodness they have given up on the old faltering growth angle.

B is one year and nine months old now. He is pulling himself up to stand, cruising around furniture and walks when led by both hands. However he is still not walking independently. He is crawling well although this is slightly asymmetrical with his left leg lagging behind.

He passed his audiology hearing test and he is on the waiting list for speech and language therapy.

Clinical examination was similar to previous findings with hyper extensible knees, ankle joints as well as mildly asymmetrical brisk deep tendon reflexes. There is no ankle clonus and plantars are down-going. She wants to keep observing him. And see him again at age 2 years. Considering doing creatine kinase enzymes and a CT brain if his motor skills have not made the anticipated progress. I'm happy with the current plan. He should continue physiotherapy.

Wednesday, 6 January 2010

Swine Flu

I've got a letter this week from the Department of Health recommending children at risk of contracting swine flu aka H1N1 are vaccinated as a matter of priority to protect them from the swine flu epidemic. That's nice.

Your child may qualify if they have one or more of the following conditions and then a long list of conditions. I'm presuming B got in the list under the "children with significant chronic neurological conditions such as children with cerebral palsy"

It's interesting that B has been included without a diagnosis of anything in particular. I'm glad they aren't leaving him out just because he does not have an official diagnosis.