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On Sunday the 20th of December ,1998 our worst fears were realised.
Lauren developed pneumonia. It seemed so sudden, one minute she was well the
next minute she was desperately ill. We were devastated when our doctor advised
us that we may need to decide whether to ventilate Lauren if her condition
worsened. Little did we know that this was the beginning of a long series of
hospitalisations for aspiration pneumonia and respiratory infection. Some
of these were to result in Lauren’s admission to the Intensive Care Unit of the
Children’s Hospital. In June, 2000, after already spending a week in Knox
Hospital with pneumonia, Lauren was transferred to the Children’s Hospital. Her
condition worsened during the next week and she was admitted into Intensive
Care. While there for twelve days it was shown that she was refluxing her
stomach contents. We immediately decided to have a Fundoplication operation ,
hoping that this would stop these recurring aspiration pneumonias. The procedure
was performed laparoscopically but unfortunately it interferred with the
position of the gastrostomy peg. Infection developed and another admission to
hospital four weeks later resulted in the gastrostomy peg being replaced with
As fate would have it in August, 2001 we met a consulting naturopath at our local pharmacy. This was the first time we had discussed Lauren’s problems with an alternative type of health professional. We had nothing to lose and a lot to gain if we could help Lauren with a fresh approach using complementary preventative herbal medicines and supplements. Herbal preparations were formulated to try and improve Lauren’s immune system in order to make her less susceptible to respiratory and urinary infections. Other dietary supplements were recommended to enhance her nervous system and digestive system. Over the next ten months we monitored and modified these alternate medications. During this period Lauren developed a couple of colds where she was able to cope without being hospitalised and we actually experienced a six month period without a hospital admission. This was the longest period in over three years without being in hospital. She still develops urinary tract infections but these are probably less frequent than they were in the past and are most likely caused by the catheters. The use complementary medications in conjunction with the more traditional drugs appears to have produced very positive results and we are optimistic that Lauren will benefit greatly with this approach.
In September, 2001 while Lauren was in hospital we made contact via Email with Dr. Marjo van der Knaap in Amsterdam asking if she would review Lauren’s scans and medical records in order to provide a diagnosis. Dr. van der Knaap specialises in undiagnosed white matter disorders. She proved to be a delightful person to deal with and was very receptive to our request. Within a relatively short period of time she had reviewed Lauren’s medical history and returned her findings. She was unable to provide a diagnosis but stated that all testing that was possible at this time had been done and that it may simply be a matter of time before medical science is able to provide the answers.
The frequency of hospitalisations decreased after the Fundoplication was
performed but respiratory infections still occurred. Unfortunately the six month
period when no hospitalisation took place was suddenly disrupted with two very
unexpected admissions to hospital. Much to our horror there were a number of
occasions when formula came up when Lauren was suctioned. This meant that Lauren
was refluxing formula through her Fundoplication. After numerous tests were
performed including a barium meal, milk scan, gastric emptying study, 24 hour pH
probe and finally a Gastroscopy it was proven convincingly that the
Fundoplication was no longer functioning. So two years down the track after the
first Fundo the procedure is repeated but this time it had to be done by open
surgery technique. We were hoping that this would solve the problem of gastric
refluxing leading to aspiration pneumonia.
Within a couple of months we were back in hospital with another respiratory infection and a month later we were back again. But this admission was different. Lauren was transferred from the ward to ICU in the middle of the night with respiratory distress. Blood gases showed extremely high levels of carbon dioxide and a low pH. We were strongly advised by the doctors that Lauren needed to be intubated and connected to a ventilator. We reluctantly agreed to this because appearance wise she didn’t seem to be in too much distress. We were very relieved when she responded well to being intubated and was successfully extubated a few hours later.