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.

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.

Hearing test take 1

B has his first hearing test today at the audiology clinic. He will not cooperate though. I have no concerns about his hearing because he does respond to sounds but we've got to check his hearing to rule it out as a cause for delayed speech. We're in the TARDIS box (which is not bigger on the inside). They make sounds behind B's back and expect him to turn his whole head around to see the source of the noise. B chooses to flicker his eyes acknowledging the sound but refusing to turn his head. The staff know he can hear the noise but they don't pass him this time because he is not "ticking the boxes". He is like that B he is wants things on his terms and makes everything more awkward.

B gets referred to Speech and Language

I get a letter saying that B has been referred to Speech and Language Therapy for an assessment. The waiting time is currently 5 months. And they promise they are doing all they can to reduce the waiting time. Speech and Language Therapy takes a number of different forms. According to the child's needs, I might get general advice and support, a home programme, sessions of group or individual therapy or a combination of all the above.

Dietician

We are seen in the dietary clinic today by the dietician. I'm not feeling too happy about this appointment. I'm feeling a bit judged. I know my children are getting a good balanced diet and I don't need a professional to tell me if I'm doing it right or wrong. My feelings are confirmed when the dietician takes one look at B and wonders why we are wasting their time! I do so love being right.

Due to the lack of measurements it's difficult to gather a clear picture of his weight and length history and plotting errors on his chart (apparently). He has decreased in length which is not true! They made a note of his feeding history and we reported a good appetite and a detailed food diary. His diet is nutritionally balanced and varied. The dietician feels his diet his adequate for appropriate growth and therefore if his growth remains an issue then it may not be due to his eating problem. His weight gain is starting to increase and she hopes the trend will continue. The goals: include at least two iron rich foods per day and ensure regular meals are given including high fat foods such as oil, cream, full fat dairy products. They are satisfied and a follow up appointment has not been arranged.

I'm feeling slightly smug at this point but still none the wise as to what the true extent of B's problems are and it's back to the drawing board.

First appointment with the consultant paediatrician

We have an appointment with the consultant community paediatrician today. B has been referred by the paediatric physiotherapist and it's noted that the registrar in paediatrics reported his motor delay and faltering growth. His growth has now improved (hurrah)

B is 18 months old and he isn't standing or walking. He started to commando crawl at about 12 months. His fine motor skills are okay, he uses both hands well and he can build towers and finger feed himself. He has no recognisable words but he does babble. I'm in trouble again because B did not have the newborn hearing screen. He was born at home and I didn't see the point in taking him to hospital the day after he was born for a hearing test. I kind of had better things to do!  B's understanding is okay and he enjoys different toys and engages in pretend play. His general health is fine but he has had a urinary tract infection and had antibiotics. When held by his arms he bears weight on both feet flat to the floor. His toes are splayed bilaterally and there is some outward rolling of his feet. He has brisk deep tendon reflexes globally and his ankle joints are quite flexible bilaterally.

The paediatrician concludes that B can presently be described as a late walker, however in view of his abnormally brisk deep tendon reflexes weight bearing on the medial border of his feet with splaying of his toes, as well as hyper-flexible ankle joints, he will need to be kept under review because he might have an evolving motor disorder which is masked by his hyper-flexible joints.

She wants to review him in three months but in the meantime he will continue to receive physiotherapy input.

In view of his late speech and lack of uptake of newborn hearing screen (see they're at it again) a referral has now been made to Audiology. I have to report a history of hearing loss in my family. A referral to speech and language therapy will be made.

I go home a bit confused and Google the things the Paediatrician mentioned to me. I am starting to read between the lines. B has "hyper-mobility syndrome". Why can't they just tell me that instead of fluffing it up with techno jargon. I start to panic myself when I see mentions of Ehlers-Danlos Syndrome - hyper-mobility is a feature of this rare medical condition. I'm searching for answers myself.

Standing frame and walker

Today we are taking loan of a standing frame and walker for B to use. The aim of the standing frame is to ensure B has the opportunity to maximise his potential in an alternative position. To increase B's awareness of his lower limbs. To gain an understanding of the benefit of standing without being held. To aid his hip development and to enable B to participate in activities in a standing position.