Please remember, I am not a medical expert. This blog is record of my experience and the methods I use with my daughter. That is all.
In order, to assist with the ridiculous amount of jargon associated with a disabled child, I present the following glossary.
Please email me at firstname.lastname@example.org if I missed any terms requiring definition.
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Cerebral Palsy – an umbrella term for brain damage received as a baby or young child
EEG – (electroencephalogram) a test to detect problems, such as seizures, in the electrical activity of the brain; the test, which is painless, takes about an hour and reads her brain activity via by electrodes stuck to her head
Health Visitor - a nurse devoted entirely to new mothers and their babies
Lycra suit(ing) - (AKA Supergirl Suit) a snug lycra suit that is tailored exactly to May’s measurements; should stimulate her arms with sensory pressure and give her extra support to help her posture and (fingers crossed!) sitting; looks like an outfit one would wear if attempting to climb a French mountain on a bicycle
MRI – Magnetic Resonance Imaging – that enormous, white machine you see on TV medical dramas that looks like a whole body capsule, kept in a room on its own adorned with a one-way mirror, behind which doctors discuss all kinds of ghastly theories about the patient. In reality: a machine that uses powerful magnets instead of radiation to create an image of the internal structure of the body; particular good at visualizing the soft tissues of the body, like the brain.
Neurologist – doctor specializing in the brain; neurology – science studying the nerves and nervous system (brain)
NHS – National Health Service; the British health care system. I will go into more details in later posts.
OT – occupational therapist, assists with fine motor skills (smaller movements like picking up peas)
Phenobarbital – a barbiturate used to treat seizures in infants; May currently takes two doses a day.
Physio – physiotherapist, assists with gross motor skills (bigger movements like running)
Pyriodoxal Phosphate – vitamin B6 in its active, post-metabolized form. Though I wouldn’t quote me on that. Mock 2 of May’s pyridoxine dependency issues. Became a possibility as May responded to pyridoxine treatment, but did not register dependency when tested.
Pyridoxine – vitamin B6 supplement that May takes daily; B6 deficiency causes seizures in infants. Doctors thought May had a rare metabolic condition that meant she could not metabolize B6 properly. She showed an almost immediate response to this, though her test results on dependency came back negative.
Red Book – a red, medical record book given to all British parents when their baby is born; used to record measurements, vaccinations, etc.
SALT – speech and language therapist, assists with feeding and communication
SCBU – Special Care Baby Unit in the Neo-Natal Intensive Care Ward; the room in the hospital where May spent her first few weeks
Sodium Valproate – anticonvulsant drug used to treat seizures.
Splint – a foam glove that May wears around her hands to keep her thumbs out rather than fisted; some children also wear them on their feet
Statmenting or a Statement – After assessing a child’s special educational needs, the council writes a formal report called a “statement” detailing what she requires. This could be anything from equipment to help her sit to one-on-one care at nursery.
The Boss – May’s pediatric neurologist and also one of the directors of the hospital; not a nickname, that’s what the other doctors call him too
Tone – specifically “high tone” in May’s case, a stiffening of the muscles. Low tone means the muscles are floppy. Though it may not be possible to stop it entirely, if not treated, a patient can lose their full range of movements.
Toparimate – anticonvulsant drug used to treat seizures; may suppress appetite so one possible cause for May’s low weight.
VEP – (visual evoked potential) – a test like an EEG, that specifically reads the brain activity involved in sight; used mainly for people, like babies, who can’t tell doctors what they can or can’t see; lights are flashed into the babies eyes to see if the signals are reaching the brain