CHAPTER 16

IN CONCLUSION

We all know that times have changed. They have changed for doctors as well as for parents and families. In the city, doctors now tend to work in large practices. Many work part time, particularly female doctors who also look after their own families. Doctors expect to have a life apart from their medical practice and are happy to only work ‘after hours’ at specific times when ‘on call’, rather than be available twenty four hours a day, seven days a week. The freedom to not have to worry about the financial side of a medical practice is an added advantage to this type of work situation.

For many reasons medical practices are too busy and there is limited time and financial incentives to seeing patients quickly rather than spending a long time working through many issues and complex problems.

Distressed babies often have a complex group of problems. My Eustachian tube Irritation [ETI] babies have reflux, atopy and Eustachian tube [ET] and/or middle ear [ME] problems. Working with tired parents who may have trouble giving a coherent and well organised description of the baby’s history and behaviour is time consuming. The easy way out seems to be to assume that the baby has ‘colic’ and parents can be told that they will get better in time.

I apologise for my cynicism but have seen the situation frequently.

Many years ago, children were not taken to the doctor for minor illnesses, as parents knew that there wasn’t any specific treatment and were comfortable to nurse the child at home, expecting them to get better in a few days with rest, fluids, and time.

Nowadays, parents often wonder whether a treatment is available that will improve the child’s illness. They are also worried that a severe illness such as meningitis will be missed or the treatment delayed if the doctor doesn’t see the child. Many mothers have careers apart from their family responsibilities and are working at least part time and keen that the child recovers as quickly as possible so they can return to work. They have commitments to their work as well as their family. Grandparents who might have been available to care for a child are often still working themselves so do not have as much time as previously to help out with young children. However, many do take time from work or other activities to help out as much as possible.

Children’s illnesses tend to come on quickly so that booking an appointment to see the doctor in three or four days time is not helpful. For this reason children with an illness often do not see the same doctor on every occasion. The child may see another doctor in the same medical practice, so notes should be available about the illness, but they may also be seen at an ‘after hours’ medical clinic, the Emergency Department of the Children’s hospital or a local or regional hospital. This means that no one doctor is aware of the frequency of the child’s visits or the nature of the problems. Many doctors will be happy to treat the current illness and not take responsibility for the child overall. Often the doctor does not know the family or have any rapport with the parents. He/she does not know their history, their strengths or weaknesses and the time constraints, especially in the situation of an ‘emergency visit’, make it all the harder.

The incidence of middle ear problems has risen greatly over the past two decades. This appears to be for several reasons. The use of large day care centres is thought to be the most important reason, as mothers struggle to continue a career and help the financial circumstances of the family. The increase in the incidence of allergy related conditions are also a factor in many families.

I suspect that when treatment for an ear infection is given it may not always be adequate, risking the infection not resolving completely and recurring more often. When an antibiotic is needed, the dose should be higher for an ear infection than for most other infections, and the course continued for longer. Doctors are discouraged from using antibiotics to treat most ear infections and tend to use these recommendations for all children regardless of age, frequency of infections, etc. This may be acceptable if the follow up of children was routine, including tympanograms, but in the circumstances of current general practice this is not common. Few general practices have a tympanometer available and many doctors are reluctant to use it for young infants as they are told that tymps are unreliable before about five months of age.

The parents I see are highly intelligent, motivated and keen to understand their child’s problems. They want to understand how I am hoping to help the child and want to be involved in making decisions about treating them. To do this they need to have an understanding of the conditions and a working knowledge about medicine, anatomy and physiology in this area, so that they are able to make appropriate decisions for their children. Without this background knowledge they are only influenced by what they have heard from their parents and friends and their own access to information.

Parents’ information and concepts vary enormously, and with it their bias about treatment methods including the use of medications [particularly antibiotics], management of allergies, surgery, etc. The internet is a superb tool for seeking information but is often skewed by people who have had bad experiences as they are often the most vocal about particular subjects. Deciding which information is unbiased and medically based isn’t always easy for parents.

I set out to write this book, as I wanted to put on paper what I had learned from many years working with these babies, children and their extraordinary families. My information comes from being involved with the children and parents as well as extensive reading on and around the subject, attending seminars, etc.

I also wanted to give parents written information about the problems involved with ETI so they were comfortable in their understanding—so they could talk to the doctors with the assurance that goes with knowing what they are talking about. Understanding and correctly using medical terms helps the doctor accept that the parent understands and can ask appropriate questions. Importantly, I hope that this information will make it easier for parents to ‘pressure’ the doctor to treat the children’s problems energetically.

The book became longer than I originally intended, but it was hard to know what to leave out. Some chapters may have too much detail but I hope that parents will skim through those parts when they don’t want so much detail and read more carefully about the areas when they do want extra information. I apologise for the repetition from chapter to chapter but wanted parents to gain most of the information within each chapter, rather than constantly needing to go back to a different area of the book. However there are frequent references to where a more detailed explanation can be found if parents wish to follow it up.

It never ceases to amaze me how parents cope with the difficulties of these infants, the love they have for their children and the concern and outlay in time, effort and the financial costs involved. They are keen that their children are given every opportunity to reach their potential.

Writing the book has stirred many memories about children and their parents and I have enjoyed reliving the incidents that are described in italics throughout the book. I hope that these incidents help the reader understand that my knowledge is based on experience working with these children, not just at academic level. Similarly my recommendations are not always accepted by my colleagues as they are not always ‘evidence based’ [which is the ‘in’ term medically]. However the information is ‘evidence based’ for me, in that it is based on the experience of working with these children.

Each child I have worked with is different to some extent, as are their parents, and I continue to learn about different presentations, progress and the different strategies, issues and management techniques that work for these infants and children. There have been many challenges working with the infants and just when I think I understand them, something else happens and I have to rethink and work through new aspects.

My thanks to the parents [and grandparents] whose observations of the behaviour of their children has led to the concept of ETI being developed. My thanks also for their patience while we work through the children’s problems together, to develop a full understanding of the many ramifications of the children’s issues. My thanks also to the many parents who have been concerned for my health and my thanks for the wonderful collections of photos that they have allowed me to use in the book. Without these photos, children’s drawings and sketches, the book would be very dull.

I hear on the grape vine that the term ‘Eustachian tube Irritation’ is being used in the community from time to time. I wonder whether that is from my ‘coining’ the name or for some other reason. I hope that eventually the concept of ETI will become well established and accepted, even without my being able to do a formal study. The concept seems to me to be logical and perhaps doesn’t really need a formal study to explain the problems of the approximately two thousand infants I have worked with.

My major regret about the ETI condition is that there is a limit to the number of infants I could work with. My apologies to those who I have been unable to see, despite requests from child health nurses, speech pathologists, occupational therapists, parents and grandparents.

The book has taken more than three years to write, taking most of my spare time. In that time I have had to go back many times to add new information and update some areas. Medicine develops very rapidly in our era.

I can’t say that writing the book has been a ‘labour of love’ as I am not a writer by choice as will be obvious to those with literary skills, but hope that the information will be helpful to the parents [and other family members] of these babies and children….


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