Feel No Pain

If there is one thing that I have learnt about threats it is that you should never bluff. With self-confident children like mine it is crazy-important that you only say what you are prepared to carry through. My children have learned the hard way, at a very young age, that Mum means business.

Well, today I needed to made a threat (or perhaps a promise) to an adult that I needed to be sure I was prepared to carry through. This was the most thought out decision that I had ever had to make because the threat was to abandon my own child.

Before you gasp and jump down to the comments to abuse me you should probably get some context by reading through the 'feel no pain' category history because you need to understand that this is a culmination of having to put our lives on hold until we have to opportunity for PJ Bear to see a Paediatric Neurologist.

It has played havoc with Sir Sonic's home schooling as PJ Bear demands so much time and can be extremely disruptive if you are not constantly mindful of his sensory needs and his current 'sensory desire level' for a lack of better terminology to describe it.

Well, yesterday, we were meant to be seeing the neurologist that we had been referred to for the very first time. It was a week that ramped up with excitement right up until the day before. Immediately after checking our mail my husband called me to let me know there was a letter from Women's and Children's Hospital addressed to me which he opened and read to me over the phone. We had been bumped again. Not for a month like last time but for another five. This brings our waiting time to 11.5 months from the referral date, just a week longer than the wait list in the public system.

I, of course, spoke to the medical secretary of that area of the hospital and she promised to get back to me with some options and then left me to kick myself for not also putting the referral through to the public neurology clinic when I first received it too. That afternoon I mulled over what options may exist and felt totally option-less for what else I could do. After the last time I was bumped and another trip to emergency I got a referral to the only other paediatric neurologist in the state and our appointment with him was for a week later than our new 'bumped' date.

The following morning, at the time when our appointment was originally supposed to be, the secretary rang. There were no appointments available at all before the end of the year at all with their paediatric specialists. She, however, made some calls within neurology and the only neurologist with an appointment before Christmas was a 'specialist specialist' which meant that our letter of referral was not good enough because it came from our GP and not another specialist. She said that we would need to see a specialist who could make a referral. Her first suggestion was a paediatrician but when said that we did not have one for him and we were still waiting to hear back from the Paediatric Pain Clinic too. Her only other suggestion was an emergency doctor otherwise we would just have to wait.

Now there is something I need to contextualise here too. I home school my eldest child by choice. However, at this stage, home schooling PJ Bear is not a choice but rather a forced hand because in South Australian the Education Department's responsibility to cater for special needs only legally goes as far as 'diagnosed' medical conditions. So, until PJ Bear gets to a neurologist, goes through thousands of dollars worth of patented genetic tests that can take up to 12 months to get the results for and, maybe, actually comes out with a diagnosis the Education Department has no obligation to meet his needs. We tried to push them as a 'moral' or 'ethical' obligation in Term Two this year and were royally shut down, leading to more damage to our home through his late afternoon meltdowns from under-stimulation during the course of the day.

The toll of his needs has been wearing me down for a long time now. Because whatever he has is so uncommon it is unlikely that there is even an Australian support group, let alone a lobby group that will obtain funding for education support for him and respite for me as a parent when and if a diagnosis comes.

I was upset, almost beyond reason, thinking about the average three times a fortnight where an 'incident' occurs leaving me humming and harring about whether I need to take him to emergency or whether I just let it run its course. Let alone, condsidering some of the possible long term consequences from his active antics like jumping down our staircases, now from the top step but from higher up on the hand rail adding the strain of a twisting motion to his act too.

I needed that referral. I needed someone to give me a glimmer of hope. A glimmer that showed that there may just be light sometime in the journey would be bring me the strength to keep going in spite of all the challenges I faced each week. So, I decided that I needed an emergency doctor to get me that referral now.

So, I turned up to an Emergency Department and made the threat. Either I see a doctor who can get me that referral or I leave PJ Bear there for them to take care of. It was the quickest I have seen a Peadiatric Emergency Doctor in my life. I explained that I could not wait another five months to see someone knowing that it would most likely be at least a year beyond that again before we may know what is going on in his body and even longer before we found a treatment program that would minimise his symptoms. She checked him over made some calls and got referrals off to both their general Paediatric Clinic, with a hope of getting the ball rolling with them sooner, as well as to the super-sized-specialist.

I had never made a threat that big before and it scared me doing so. I seriously considered what would happen if they called me on it. It was scary and deeply saddening. I cried on the way to emergency, I cried whilst I made the threat and I cried the entire time I waited to see the Doctor. How could our first-world system be so bad that a parent needs to force the hands of Doctors in order to get the medical needs of their children met?

With all that is going on in the life of PJ Bear at the moment I can't help but wonder what makes him the way he is. Whilst we play the 'wait to see' game with the neurologist my thoughts have been with possible causes of his situation. It has made for interesting discussion with Child of Nature.

Of course, when we get to the appointment the paediatric neurologist will look at our genetics, will look for nerve damage, including the insulating layer, they will also look for things like tumours. But for the last few days I haven't been able to help wondering whether the intervention at his birth may have something to do with it.

The whole train of thought was kicked off with a discussion about the wiring of the brain from birth into adult years. You see, PJ Bear was not the most settled child in the world and he was very demanding in his first year. It was a hard slog, especially at night in those early years. (Quite similarly to what I am going through now with Princess Poppy).

We discussed it in car on the way home tonight. The thing that I had to ask was whether the lack of stimulation went back further than we thought, that his need for sensory input and lack of pain sensation went back as far as birth but possibly without a genetic cause.

This made me wonder if the early induction of labour with the use of syntocin drip had anything to do with the child I am dealing with today. We know that the long contractions of a syntocin induced labour can lead to oxygen deprivation - often leading to other interventions.

Lack of oxygen can do all kinds of funky things to the brain. I remember clearly the midwife coming in and checking the CTG (foetal monitor) and specifically saying, "Your baby is showing signs of distress, so we are going to see what is going on *now*." Yes, those five minute long contractions from hell, with the epidural that only took on one side, were equally as ill-received by PJ Bear.

It felt for that first year that his life was a daily reflection of the day that he was born - full of stress to mother and baby alike. So now I wonder whether my accepting my Obstetrician's recommendation for the induction (due to a DVT in my calf) was really necessary. I wonder whether my decisions were the cause of all that lies on the road we have travelled with him.

What if an induced labour and intervention can cause neurological problems? I don't know myself, right now, if that is possible but would be interested in what research is out there about this.

This week, for some of us, has not just been a rendition of 'Memories of the Way we Were'. No, this week I have been reading into Congenital Insensitivity to Pain, a topic for which there is very little information available online. For this reason, many thanks are offered to the person from Sydney Children's Hospital for getting it to us so that we could consider the full range of possibilities that we will be facing when PJ Bear sees the neurologist for the first time in November. (Yes, we've already been bumped to the next month).

I feel like I am wading through lots of unanswered questions with him at the moment. I can honestly say that I cannot understand his thought processes sometimes, especially when quirky behaviours find their way into his day. On Friday, the last day of his forth week of school, he received his first notice of time in the 'Focus Room'. I expect it to be the first of many as we get to the bottom of the things that are going on in his little life so that we can manage it in the best way possible. In the mean time, I wonder how much the school will tolerate. I guess time will tell.

In a previous post about PJ Bear's broken radius and ulna I said that there would, no doubt, be more about his lack of pain at the time. We have discovered that our little PJ's high pain threshold explains a lot but raises more questions all at the same time. Thus, making this post. PJ Bear lives in a world without pain, at least, without physical pain.

PJ Bear has always been a risk taker. His very methodical brother pulled off interesting climbing feats as a toddler and preschooler using a logical process of furniture arrangements. His brother watched and copied but lacked the same finesse and often took a fall. He would often cry and we assumed it was out of pain but have now discovered that it is more about the 'shock' of the fall than the sensation of pain in the same way that my 7 week old baby girl will cry when her startle reflex is tested by allowing her torso to drop with gravity.

In hindsight, we should have picked this up much earlier as many, many years ago he was part of a vaccination trial and comment was made then about how well, as a toddler, he managed the process of having blood tests without crying or squirming. If only we knew then what we know now.

It explains his total lack of fear of injury. It explains many incidents including his wilful climbing of the pergola and refusing to get down until I had Dad on the phone so that he could tell him of his achievement. Thank goodness for bribery, that Milo was worth it just for the fact that it lowered my anxiety levels.

So, with the new level of mindfulness that came after the accident we have watched PJ Bear closely and the fact that his pain response is primarily emotional rather than physical has become painfully clear. (Excuse the pun). We are now the proud owners of a referral to a neurologist but have the long wait till October to be able to exchange it for an appointment.

This potentially explains so much of his behavioural issues that we have faced also. One of his compensations seems to be his heightened emotional response to circumstance. Everything in PJ Bear's world is surrounded by triumph or tragedy with no middle ground. For over a year now we thought there was perhaps a sensory (aural) processing disorder meaning that he did not hear all that we said. (This may also still be the case). Nonetheless, his reaction to 'yes' and 'no' responses to his requests are extreme. The other issue is the ineffectual nature of most discipline measures either because physical punishment, such as a smacked hand, is a pointless punishment because there is no significant sensation of feeling associated with it and the emotional response is so extreme that it makes his behaviour worse not better.

But, for those who are fans of 'non-violent parenting' don't be fooled into thinking that non-violent techniques are any better. Due to PJ Bear's emotional sensitivity non-violent consequences are the equivalent cutting him with a knife. Non-violent techniques that we would support in normal circumstances have led to responses such as, 'I hate you,' and, 'Leave me alone. I want to die.' For this, we have been seeing a peadiatric psychologist for some time now, well before PJ Bear's broken arm. Believe me, I am a proponent of non-violent parenting techniques as PJ truly is an exception.

So, where does that land us now?

Well, on Good Friday PJ Bear took a fall off a 1.8 meter high Hills Swing Set onto his back. He cried from the shock and came for a cuddle. We checked his back which showed no bruising at the time and as routine asked if his back hurt to which he said 'no', asked if he hurt anywhere else to which he responded by grabbing the break site of his arm. His memory tells him that this is a place where pain exists or existed though he felt no pain there on this day. So, we reassured him and off he went as normal.

Then yesterday, when changing his shirt after church for lunch a bruise was noticed on his back. Closer examination showed the protrusion of three vertebrae in his lower back when he bends forward. As a result he was taken to hospital[1]. I didn't take him myself, and I am glad I didn't, as I probably would have been quite curt with some of the staff. One staff member commented that, 'It had been a week so it couldn't be that bad'. Now, correct me if I am wrong but I would expect that 99.9% people that turn up conscious at Emergency have pain assessed as part of triage. The location and level of pain is then used as an indication the potential injury and it's severity assisting in the determination of priority for treatment. So, when you present with a child who cannot indicate the location of pain you are in a pickle to begin with.

Later, when my husband commented about PJ's lack of pain, another medical staff member was so brazen to comment, 'Well lepers don't feel pain...' Clearly, this person has no idea of the severity of the injuries that people with leprosy face! My sentiment was shown by the character 'Perry' in Scrubs when asked being stupid question by an intern led to him yelling the question again out loud to all in ear shot followed by, 'Potential doctor people! Potential doctor!'. Except, in this case the person seeing PJ was a Doctor! (Season 9, Episode 9)

So, PJ Bear was dismissed without so much as an x-ray. How very helpful the staff at this hospital were! (Please read the sarcasm in).

This morning I arranged for him to see a physiotherapist tomorrow. The physio is also arranging for a chiropractor, who works in paediatrics, from the practise to also be there for the consultation, if possible. They will arrange x-rays if necessary at the time.

In the mean time, PJ was taken to an appointment with his Orthopaedic Surgeon as a final follow-up visit for his arm. The Surgeon specialises in extremities and does not work in back injuries. When it was mentioned, he took a look anyway, and observed swelling on either side of the bruising. Apparently, our worst case scenario is a fractured vertebrae, which in a child, would naturally heal anyway. I rolled my eyes and responded, "Great!" when dear husband relayed this to me after the appointment.

So, today I find myself in the world of the unknown. We prayed over PJ Bear at Church that he would be filled with a spirit of knowledge of safe and unsafe situations for his body and that he would choose to remove himself from those that were unsafe.
There won't be much more to tell until October at this stage, unless another neurologist puts up their hand to see him sooner.

In the mean time, I am going to do my best to be a calm mother when it comes to PJ's energetic approach to play. I will also try to be accepting of Google's shortfalls as I can only find information about high pain thresholds as associated with Autism, Intrauterine Growth Reduction and Russell-silver Syndrome none of which are a diagnosis for PJ Bear. (For the record, doubling up on acronyms is a problem especially when trying to Google for the full text version of RSS in the medical variety).

I now have a book that I am after, if anyone wants to get it for me for my birthday then that would be awesome! It is called 'The Gift of Pain' by Dr Paul Brand and Phillip Yancey. Anything that can bring perspective between now and October is appreciated.

[1] Said hospital shall remain nameless.

I am not sure where the past few months have gone or what book I actually read in December. Can anyone remind me? I have recently finished a must-read book for parents that I acquired in January whilst on holiday interstate. (Forgetting to pack reading material is a great excuse to buy some).

The book is entitled "Calm and Compassionate Children: A Handbook" by Susan Usha Dermond and is an absolute must have for anyone who has a child who is not quite as settled or focussed as could be expected or alternatively has issues with stress or managing emotions and social circumstances as well as being an essential resource for equipping our children now to be able to handle stress and obstacles they will face, both as they grow as well as in their adult lives.