Five year follow-up with Neurosurgeon

Connor is a beautiful looking four and a half year old, progressing like any other child his age.  I had however, been worried about a kind of half egg shaped lump on the top of his head.  Unless I rub his head I cannot notice it.  He has thick hair so any small head shape imprefections probably wouldn't be very obvious anyway.  I did remember though that Dr Jeffrey Wisoff (http://www.med.nyu.edu/biosketch/jhw1), our fabulous Pediatric Neurosurgeon at NYU had mentioned at our one year surgery follow-up appointment that ordinarily, should we remain in the US, we would have a five year follow up appointment with him.  This would be the last appointment required.  It would usually be just a formality to ensure the head was shaping correctly in the growing child.  As we were moving back to Australia, we asked if he could recommend a Neurosurgeon in Australia, knowing that he had recently travelled to a worldwide conference.  He recommended Charlie Teo.  At the time the name meant nothing, but now that I am back in Australia, I know Charlie Teo as a bit of a media personality, probably the reason Dr Wisoff recalled his name as a recommendation also.

In any case, after Connor turned four I mentioned to our family doctor that I would like a referral to a local Pediatric Neurosurgeon in Melbourne, where we are now living in Australia.  He referred me to the Royal Children's Hospital, which has an excellent reputation, particularly in the area of craniofacial work.  The recent separation of conjoined twins from Bangladesh had brought quite a bit of attention (http://www.theage.com.au/national/beginning-life-apart-20091118-ikzz.html).  I had also read an article in the paper about work they had done with children with Scaphacephaly, so I was quite looking forward to the appointment and their view of Connor's New York operation.

I was really thinking of the appointment as a formality.  A final sign-off.  I was quite taken aback when, on meeting Dr Patrick Lo (http://www.laccon.com/about.html), the Pediatric Nurosurgeon to whom I was referred, he seemed concerned about the shaping of Connor's head.  He said that although, as a Neurosurgeon, he can say that the surgery looks fine, it is not the type that they perform at the Royal Children's, as they prefer to insert springs to allow for brain growth.  He said that we really needed a referral to the Craniofacial unit to see a Plastic Surgeon.  Although Connor looks fine now, it is important to confirm that the lump on his head and general skull shaping will not have any detrimental effect on skull or facial shape in future as Connor grows.

Needless to say, I was a little concerned and my husband was very worried about the possibility of the prospect of new surgery.  I have since received my referral to the Plastic Surgeon for an assessent on 9 September 2011.  In the meantime a Pediatric Neuropsychologist from the Royal Children's Hospital called me up to determine if we should make an appointment with her prior to the Plastic Surgeon appointment.  This appointment would be to conduct a developmental assessment to ensure that the head shaping issue is not also causing an kind of brain pressure affecting development.  This would also, of course influence any further surgery decisions - being in addition to cosmetic concerns.  This appointment will be on 31 August.  She sounded interesting as she works with children with craniosynostosis and had a few developmental traits that she said were common.  Language, concentration and self-regulation of moods were some areas she said she had noticed. 

I figure the Neuropsychologist is an interesting thing to do anyway.  No harm really.  But I am not looking forward to the Plastic Surgeon.  Oh well, here we go again.

Speech progress

I thought it might be relevant to include an update on any developmental issues we had encountered with Connor.  I have no idea if this is related to Connor's scaphacephaly and any possible pressure on the brain.  But nonetheless, I mention it in case it resonates with anyone else reading who knows a cranio child.

At 3 years and 10 months, I decided to take Connor to a speech pathologist recommended by our local Maternal Health nurse, for the purpose of having his progress assessed prior to his commencing pre-school the following year.  At that stage Connor's speech definitely lagged behind his peers at playgroup.  I could understand him but people outside the family had difficulty.  The speech pathologist was kind enough to send me an email report summarising her opinion following our visit.  I have pasted it in below, together with her six month follow up opinion. 

Speech Pathologists opinion - First visit - 8 December, 2010 - age 3 years, 10 mths:

Thankyou for bringing Connor to speech pathology today for assessment.

I assessed Connor for speech articulation but we also discussed some other areas of his development.

1. Speech Articulation

Connor is presenting with a mild delay in phonological development. It is not clear whether the tongue tie is contributing to this delay but is possibly mildly affecting 'l' at this time. Errors noted were:

deleting consonants at the end of words (eg. bus to buh)
deleting consonants in the middle of words ( eg. window to wi - oh)
deleting the weak syllable (eg. flower to flow, matches to mat)
substituting 'w' or 'y' for 'l' (age appropriate but consistent)

I did feel that Connor is not yet attending well enough socially to benefit fully from therapy for these errors and it is still possible that some self correction may occur. Connor was able to produce an approximation of 'l' which is encouraging as far as future progress is concerned.

We agreed that I will review Connor in 6 months.

2. Social development

Connor presented with mild delays in this area and this was evident early in the session. He was hypersensitive to my approach and showed limited eye contact throughout the session. He was also less responsive to my direct questions and praise feedback than would typically be expected. However, he appeared to enjoy the task, he know many of the words and did complete the testing with help. He was generally compliant which was great! You also mentioned that Connor has some history of hesitations or sensitivity in his social peer group.

I would recommend that we discuss this area again when you return in 6 months. At that time he will have had an opportunity to show how he is doing within his age peer group. His teacher may also be able to make observations about this area as she will have extended observation opportunities. I would recommend that you consider an OT assessment at any time if you feel that his sensory processing is making things more difficult than they need to be and I can direct you to my preferred colleagues if you wish.

Please contact me if you have any questions or feedback following our consultation today. I look forward to seeing you again in 6 months and for the time being, I have place Connor on my waiting list for therapy.

Speech Pathologists opinion - Follow-up visit - 3 June, 2011 - age 4 years 4 months
 
Thankyou for bringing Connor back for review today. He has shown rapid improvement over the last 6 months in his speech clarity and falls within the average range now. He has corrected his pattern of dropping syllables and end sounds from words and has all of the sounds present (except L) which we would expect for his age. He replaces L with W or Y which is very common in this age group. This will probably self correct but if still present in 12 months, you are welcome to bring him back for another review.


I was pleased to hear that Connor is settling well socially at kinder. He certainly listened well to me during the session and responded more rapidly than when I saw him late last year. Of course if you or his teacher have any more concerns about his social use of language you can get back in touch anytime.