A couple of weeks ago my son nearly died. He was given a drug that he has had before but this time he had a massive allergic reaction. A “dodgy dose” was one of the explanations. The problem is that it’s not possible to trace batches of pharmaceuticals like it is to trace foods like salamis or eggs.
Recently my son went into hospital for a relatively simple surgery. What was meant to be routine quickly turned into a life and death crisis when he had an allergic reaction to one of the drugs he was given. Once he was resuscitated, stabilised and handed over to the Intensive Critical Care Unit (ICU) people started asking questions.
What was strange was that he had already had all the drugs before without any adverse effects. Normally if you develop an allergy to a drug it builds up over time. In just one dose my son had gone from experiencing no negative reaction to a deadly reaction. Apparently this can happen from time to time but it’s pretty rare. “Pretty rare” should be translated from Doctor speak to “almost unheard of”. The anesthetist with 20 years of experience had only had it happen to him four times one of which was my son.
One of the other possible theories of what went wrong was that one of the drugs he received might have been “dodgy”. Now if this drug was a salami, an egg or some other regulated food and we started to see a number of cases of food poisoning then very quickly the government would be able to take action. First the source of the outbreak would be identified and then it would be traced back to the producer. From there the extent of the problem would be assessed and if necessary there would be some sort of recall. Whether it be just a batch recall or shave a wide scope would depend on the situation. That is not possible with pharmaceuticals.
Apparently there are suspicions that one of the drugs my son was given is linked to some troubling reactions during surgeries in other Melbourne and Sydney hospitals. There has now been a number of cases of unexplained reactions and those cases share this drug in common. Doctors when discussing these cases have theorised that they might be caused by a dodgy batch of this drug. It is not possible for Doctors to be more than suspicious because its not possible to trace the drug used during a surgery where there was an adverse or life threatening reaction because it is not possible to trace the batch numbers of the drugs.
Believe me? Probably not. I didn’t believe it either.
When these carts are restocked the batches of drugs get mixed up. When a drug is taken from the cart by a doctor or nurse the “use by date” is checked but there is no record kept of its batch number. This breaks the chain a traceabilty between the manufacture and the patient.
Due to the way drugs are distributed from pharmacy to drug rooms to drugs carts to patients its is not possible to match the drug given to a patient with its batch number. For that to happen the Doctor or nurse administering the drug would have to make a note of the identifying information which includes the batch number. Since this is not standard practice even if this information is noted it’s rarely recorded in the patients records. I don’t know how systemic this practice is but I do know that for the drugs given to my son, one of which nearly killed him, we can’t trace any of them to a batch number.
Without the ability to gather that evidence its not possible to investigate whether there was a problem with one of the drugs he was given. The bigger concern is that its not possible to know whether there IS a problem with a particular batch of drugs.
21/10/2016 Update.
Had another appointment at the Children’s Hospital today. It seems most likely that the drug that caused the reaction was an antibiotic. We believe this because since the massive reaction he has had a series of milder but still concerning reactions to another antibiotic from the same drug family as the antibiotic he had while being prepped for surgery. He is going to be checked in for tests to confirm this.
The potentially dodgy drug is unlikely to be the cause because the dodgy batch went through a while ago and this drug gets used a lot so its unlikely that there was any of the dodgy batch left in the drug cart. However, we can’t be sure of this because while the hospital has records of drug batches delivered to the hospital no one keeps a record of the batch number of drugs once they are dispensed to the drug carts and drug rooms. This means that theoretically a there could have still been vials of that dodgy batch present in the drug cart from where my sons dose was drawn.
At the next appointment I’ll be asking if this risk has been removed. Ie has the pharmacy department checked every dose of this drug in every drug room and cart to ensure that there are no vials of the dodgy batch left at large.
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I’m mostly writing this blog to show people what I think, how I think and what I’m doing and planning to do based on all that. I generally don’t speak about my family situation that much because while disability is no longer the tabo subject it used to be the stigma persists. My fear has been that bankers and investors may consider the disability of my son and hence my family situation an “unquantifiable risk”.
I get that people are not comfortable with disability because I’m not comfortable with disability. The thing is, that rather than being a risk my son’s disability is a motivator. He and the rest of my family are my “skin in the game”. I have to make Fish Farmers work because if we don’t we are stuffed.
Parents living with the disability of a child often struggle to just keep going but it gets worse when they turn their kids turn 18. Once a child with a disability turns 18 services and support are reduced. The primary purpose of Fish Farmers is to make money producing food more sustainably but the greenhouse environment lends itself to providing supported employment for people with special needs. My son is too disabled to be helped by such a program but many of his friends at school could be. I would love to be able to offer support but I can’t do that unless we get our first greenhouse up and running.
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