CHAPTER 1

INTRODUCTION

This book is not intended to be a Medical Treatise but rather a book for parents to introduce them to the medical problems relating to irritable and distressed babies and the middle ear and related problems of infants and children. It also offers information about the possible later problems for many of these infants and children.

The information comes from more than 25 years of my experiences working with the infants and children; from listening to their parents and reading the literature related to their issues. Working as a GP seeing children only has been a unique experience and has given me the opportunity to follow these children, some for many years.

The book aims to provide a working knowledge of the medical terms that may be used about the infants, so parents understand the terminology when talking to their doctors.

The book is intended for use mainly by parents, but I hope that some health professionals might find the information useful.

Anecdotes about infants and children are included to illustrate the information discussed.

I apologise for repetitions of information. I wanted each chapter to stand alone, but that has meant that some subjects have been repeated in different parts of the book where it seemed relevant to that section. However a fuller discussion of the subject may be found in another part of the book. I thought it was helpful to include this information, as I don’t expect anyone to read the book from cover to cover—rather to look at chapters they feel may be useful at the time. There is a comment about where in the book more detailed information about the subject can be found.

I refer to studies done about particular issues being discussed. However I decided not to include references as information is now so readily available on the internet.

The term ‘he’ is used when talking about infants—except when an anecdote is about a girl. This is done for simplicity rather than using ‘he/she’ or alternate chapters with ‘he’ and ‘she’ [as many writers of books about children do]. This definitely does not mean that all of the children I describe are male. The numbers of boys and girls is nearly equal for most aspects of this book–except for children with Central Auditory Processing problems where the boy to girl ratio is 2:1.

The plight of distressed babies first interested me when I began working in private general practice, seeing children only. Before that I had worked at Princess Margaret Hospital [PMH]—the children’s hospital in Perth, Western Australia—for several years, both before and after working for nearly seven years in country general practice in Victoria, with my husband, who is also a GP. I had worked as a medical resident then paediatric medical registrar at both PMH and King Edward Hospital [the largest Perth maternity hospital] looking after newborn infants. I then spent time working in the Department of Psychiatry at PMH followed by working in the Primary Care Department for several years.

The time I spent working in the Department of Psychiatry changed my style of history taking and I began listening more intently to what mothers, and sometimes fathers and grandparents also, were telling me about their babies. When I began working in my own practice, I began seeing children with problems that were time consuming to assess and manage. And so my special interest in distressed babies started and continued to expand.

From listening to the stories parents told, a pattern of behaviour of the infants began to emerge. It wasn’t just that the babies cried a lot, although that was the reason most of them presented. There were often problems with sleeping and feeding as well. As the pattern of symptoms began to develop, it seemed that many babies had very similar patterns of behaviour and I became concerned that I was reading the same problems into every infant I saw. Eventually a mother pressured me into accepting that her baby really did fit the picture I was describing–and I accepted that he was yet another child with this condition. I decided that the condition really did exist.

Next I tried to find effective ways to treat the problem.

It also seemed helpful to find a name for the condition and after much deliberation I decided to call it Eustachian tube Irritation [ETI].

The name ETI, seemed appropriate to explain why the condition develops—as I believe it is caused by irritation of the opening of the Eustachian tube [ET] in the back of the nose/throat. However the name doesn’t give any indication of the symptoms it produces, explain why some infants are susceptible, or give an indication of the longer term ramifications of the condition.

The families of ‘my’ children/patients have taught me a huge amount and I consider myself very lucky to have been involved with them.

Many of the mothers tell how their concerns about their babies had been ignored, played down or even ridiculed. They were told that the crying was normal, that ‘all babies cry’ and they just had to put up with it until the baby’s system became more mature. For others, explanations that the baby is ‘high needs’, ‘fussy’ or even ‘naughty’ were given. Others were told that ‘they hadn’t learned to read the baby’s signals’ and even more distressing–that the mother hadn’t ‘bonded’ with her baby. First-time mothers were told that they hadn’t understood what having a baby was like and needed to change their expectations. Many mothers were labelled as having postnatal depression, and who wouldn’t be depressed with the severe lack of sleep, the constant crying and the mother’s inability to settle the infant? Nothing is designed to make a mother feel less competent or have less self-esteem than having a distressed baby, with no acceptable explanation for the distress.

When the infants were still having significant problems, many parents decided that they would not have another baby as there is a significant risk that subsequent babies will have the same problems.

However once the baby had settled and was progressing well, most parents decided that they would risk having to go through the sleepless nights again and had another baby and I began to follow the progress of these new infants. Most parents found dealing with the problems a second [or third or fourth or fifth time] was not as much of a problem as they knew what to expect, what to do and how the baby needed to be treated.

As I began seeing the next infants in some families, a whole new set of issues began to arise.

Some infants followed exactly the same pattern as their siblings. Others followed virtually the same pattern but responded differently to treatment. Other infants developed similar middle ear problems but didn’t really show the pattern of distressed behaviour of their brothers and sisters. This was really worrying as the parents had no symptoms, very few or only very subtle indicators to suggest that the baby had ear problems. We knew there were problems because I followed the baby’s progress, checking their ears regularly.

Some of the older children in the families I was seeing were having problems with language development and later school learning problems. Their parents described these children as having been distressed as babies but no cause had been found at the time.

 One of the best, most natural mothers I know has had five children–all with ETI. With her first child she was distraught that she had listened to people who insisted that she not pick the baby up to comfort her when all her instincts wanted to pick her up, hold, cuddle and comfort her. When she discovered that the baby had severe middle ear problems and needed to be upright to reduce her pain, she was guilt stricken. She described her next babies as like ‘koalas on a branch’ as they each spent their first few months upright and cuddled into her—-and rarely cried despite having major ear problems.

It also became apparent that the younger the child when diagnosed and effective treatment given, the less likely the child was to have problems later. For children who were treated later, the problems included behavioural and developmental problems, especially speech and language delay. Other developmental  problems were often present as well. These included gross and fine motor skill issues, visual processing problems and the huge problem of Central Auditory Processing Disorder. These issues will be discussed in detail later.

There were other features that became obvious as I followed the behaviour and development of these infants. Sleeping problems were very common as part of the original presentation. If ETI was diagnosed and treated adequately before the infant was seven or eight months old, the sleeping problems usually resolved spontaneously, but if the infant was older, the sleeping problems often persisted and remained significant–even after the ETI was treated.

There were also some patterns of behaviour for which I had no explanation–and still don’t–and would appreciate any suggestions! There was sometimes, but not always, a story that the infant became distressed while travelling in the car. The only way to stop the crying was to stop the car, take the child out of the car and walk around until the baby settled. The crying would start again within five to ten minutes of restarting the car. Some children would arch their backs and scream when the parent attempted to put them in the car. As the child improved with treatment, the time before becoming distressed increased, until eventually the crying no longer occurred.

For some infants sucking a dummy will stop the distress in the car, and some distressed babies would only be taken in the car if there was another person available to sit next to them and keep putting the dummy back in.

Several mothers brought their infants to see me with the only symptom being distress while travelling in the car. They had heard about the possibility of the distress being related to middle ear problems from other mothers via the mother’s grapevine. Travelling in a car with a screaming infant is distressing for the mother and really dangerous.

The more interested and involved I became with the ETI concept, the more anxious I was to discuss it with my colleagues, in the hope that others would help extend my knowledge, explore the concept further, and offer suggestions about management. I hoped we would be able to organise a proper scientific study so the idea would be accepted by my exacting medical profession.

Unfortunately there have been many reasons for not being able to do a study to explore the ETI concept. As well as opposition from some members of the medical profession, I found it impossible to get funding for a study because I am a GP and was not affiliated with any official institution. This meant that there was no set up to obtain Ethical Approval or to administer and audit funding. Another factor causing problems with a study was my refusal to accept using a placebo instead of active treatment for any of my patients. I believed that I owed it to my patients to do what I believed was best for them. Also, each child is individual and that made designing a study really difficult.

Later, some medical friends in senior positions at medical institutions offered to try to help. Together we wrote a paper looking at the tympanometry findings in 50 infants presenting as distressed babies [as evidence of middle ear or Eustachian tube problems] but could not find a medical journal that would publish the article. The editors of one journal suggested that a ‘letter to the editor’ about the ETI concept might be accepted and I did have a ‘letter to the editor’ about the ETI concept published in the British Journal of General Practice, many years ago. Even with support from an institution to set up a study some years later we were unable to obtain funding.

Some years ago I was seeing an infant who came from Geraldton [a five hour drive from Perth]. The parents would have to stop the car every twenty minutes to take the baby out and walk around until she settled. We gauged her progress by how far they could drive without having to stop. By the time her ear problems had resolved they could drive the whole distance without having to stop.

 One mother used to arrive at kindy to drop off her older child with her baby screaming in the back. Another mother noticed that the infant was always screaming and suggested it might be worth having his ears checked–and he certainly exhibited the whole ETI picture.

Another problem that made setting up a suitable study impractical was that what I was trying to prove did not fit the criteria for any study design. I wanted to prove that the combination of reflux and allergy produces ET dysfunction and that infants with this combination of problems present with a particular pattern of symptoms. There are no study protocols designed to show this combination of problems and effects. Scientific medical studies are designed to show that A is related to B, not that A plus B produces C.

Some years ago I was invited to join the Otitis Media group in Western Australia. The members were very receptive to my ideas, giving me confidence to restart working after several years not working because of illness. I returned to working specifically with distressed babies and children with all the issues of otitis media. I also did some lecturing to GPs, child health nurses, lactation consultants, teachers, etc. I greatly appreciated the influence of the group on my understanding of the wider issues of otitis media, rather than just the medical issues I had been involved with previously. Recently I received a grant from the group to help with the publishing costs of this book and appreciate their faith in me and my ideas.

I eventually decided that my role would have to be to treat as many of the infants as time allowed, rather than try to prove existence of the condition.

My only hope for acceptance of the ETI concept is for people to look at the number of patients I have treated [now about 2000] and accept that this combination of issues does exist….


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