The last few weeks have been interesting to say the least.
The tough guy is encased in plaster right up to the thigh of his left leg. This is proving to be inconvenient. Life isn’t easy with a baby and a big boy unable to walk.
Its the little things , like not being able to push a wheel chair and a pram at the same time that make life the hardest. Plus the hours spent waiting in casualty to repair a broken cast after only a few days. So hard for a 5 year old boy to keep still.
Adding to the dilemma this week was the little princes multiple appointments to try find out the cause of his recent seizures.
Seizures ….. Not something that anybody wants to deal with. Statistically 10% of children will experience a seizure at some time.
But only 1-2% will go on to have recurrent seizures.
Seizures can be caused by many things fever, infection, blood sugar, epilepsy, metabolic dysfunction, deformity in areas of the brain or lesions.
seizures also take on many different forms.
What we have seen the little prince do is have periods of limb stiffening and jerking ( tonic clonic movements) followed by unresponsiveness .
we have also seen him have spasms where his arms , neck and face go rigid and extend followed by unresponsiveness.
so far there have only been 3 known events.
In the past week we have seen our GP , had a EEG ( electroencephalogram) done, a ultrasound of his brain done ( via his still open fontanelle ) , had blood taken , urine tested and seen our paediatrician.
and the verdict is simply: we don’t know, we need to watch and wait and see if he has anymore episodes.
anyway this experience has led me to compile a list of things NOT to say when someone’s baby has had a seizure;
1 “oh that happens to lots of babies, its nothing to worry about”
2 ” did he/she have a fever?”
3 ” its ok you can grow out of seizures”
4 ” are you sure it was a seizure?”
5 ” its only a seizure and anyway he/she looks fine”
6 ” my uncles, cousins, sisters baby had a seizure and it turned out to be a fever/ Teething / nothing”
these are the sort of comments that made me see red. my beautiful boy was having unexplained seizures and i couldn’t shake the feeling that there was a ticking timebomb hiding inside his head. I didn’t sleep easy and nobodies cliched reassurances were doing any good.
Its human nature to want to help each other, to try lift the other persons burden with kind words.
but sometimes the other person needs you to hold their hand and say ” Im worried too”.
But I know Im one of the lucky ones. the ultrasound , the EEG were clear. My boy is healthy.
Many aren’t so lucky.
but Thats a topic for discussion another day……
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