Monday, April 13, 2009

The Doctor Is Wrong - And Wrong Again!

The difference in birth weight between Hari and her twin sister was exactly two pounds. Hari was the smallest at three pounds five ounces. She was very slow to gain weight and I could see no obvious reason for this. I was convinced that there had to be a medical reason for her slow weight gain and growth.

Early on various doctors, including Peter Fleming, repeatedly told me that the smaller twin usually catches up with the larger one by their first birthday and that Hari was expected to do this. They always added that if she didn't catch up by the one year milestone they would investigate to ascertain a medical reason for this.

I was not convinced that she would catch up as her growth rate was so slow. Foolishly I actually believed the doctors when they promised that they would investigate this when she was one.

So when Hari had an outpatients appointment just before her first birthday I was keen to discuss her continued short stature and low weight. I knew there had to be a medical reason for this and clearly it was in Hari's best interests to have this investigated and diagnosed.

There was also another issue that I was keen to discuss.

When Hari had been on Intensive Care she had experienced some fits, for which she was prescribed Phenobarbitone. I had recently been given a copy of a scientific paper which concluded that this drug should not be given to children due to the various known adverse effects. It also concluded that it should certainly never be given to children with Cerebral Palsy as it hampers development and this is the last thing these children need!

So I raised both issues at the appointment.

Peter Fleming's response, when I showed him the paper on Phenobarbitone and children, was anger that I had gained access to a paper from a medical journal. He demanded to know where I had got it from!

Medical knowledge was still jealously guarded in the early eighties. Information for patients was limited and access to medical journals and libraries was restricted.

These days all you need is Google!

The genie is out of the bottle and it isn't going back in!

I had expected that he would simply take Hari off Phenobarbitone and replace it with another medication. Instead his response was an irate - 'Take her off it if you want -she'll be straight back on it!'

Don't you just love it when they're wrong!

With no official guidance on how to take her off Phenobarbitone I gradually reduced the dose until it was stopped completely. She has never needed it since! She had a few fits some years later, following a car accident (our small car was hit by a very large coach!) but apart from that has been fine - with no need for this medication.

Now as if this request wasn't enough, I then had the audacity to remind him that I had been told that Hari's growth problems would be investigated if she was still small at one year old. (According to her records at the GP surgery Hari was just under nine and a half pounds and her height was also below what was expected.)

This didn't go down too well!

He informed me that it wasn't worth investigating.

Well we all know now that he was wrong about that too!

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