This week I digress!
Please bear with me… it has truly been a really shitty ride recently and in the spirit of disclosing it all, I’d like to share the bad and the ugly… not just the good. This is a story of how full and complicated this ride can be.
During August, Saskia had been having what I like to term “activity”. This means involuntary eye movement, hand movement and general out-of-character behaviour. Saskia has many good qualities but can be moody and stubborn at the best of times. Usually, it’s not too difficult to reason with her, but this time it was different. I contacted the various doctors and specialists, only to be told not to panic. Her ketones were within range and glucose was good.
Of course, to top off the stress, I had a two week business trip scheduled during this time and had to leave my poor partner to manage the fallout.
In the week before I left, Saskia had a mild break through seizure at school. I have a wonderful relationship with all of Saskia’s support team and most times I manage to see the paed even if it means waiting in her reception room for a bit … I don’t mind it’s a safe place. The visit revealed an ear infection and of course Saskia’s grommets had shifted so they were no longer draining the fluid. Antibiotic drops and fever control … followed by scheduling the ENT appointment.
This was made (whilst I was away), so Justin took her. The ENT told us her ears were clear and she didn’t need another set of grommets. I insisted that a grommets operation be scheduled for when I returned. Why, you ask? Well, ears are an Achilles heel for Saskia (ever since she was a baby). Plus she has the highest of pain thresholds (as is typical for SN kiddies) so by the time we know there is an ear infection she has already had break through seizures or twitches and it is so bad we have to resort to antibiotics (not the drop kind). These in turn lead to a horridly upset tummy… and I generally hate antibiotics so much!
Great! So I finally get home (hugely successful trip), daddy did a superb job of holding the fort and we have grommets fitted. Whilst in hospital, Amanda from Nutripaeds, comes to see us and gets a few tests done as Saskia’s iron readings were high the previous month and we wanted to ensure they have regulated.
On the Monday a week after the operation, Saskia’s school called to say she is not well. She had been complaining of pain and had a fairly large twitch. I tried to contact the paed but found she was in an ambulance trying to resuscitate a baby. I said a little prayer for the baby and all involved and then phoned the next doctor I could think of… my homeopath – a wonderful gentle soul. He found an ear infection and gave us the meds … but also said that Saskia wasn’t looking great and that he hopes she won’t break through …
Well, he called it. The next day, Saskia had two full length seizures at school! It has been a full 10 months since this has happened (she had seizures in May but it was a medicine mix-up so I don’t count that). I took Saskia home and ran the usual post-seizure sick child drill … temperature monitoring, ear drops and updating the seizure log.
The next morning, I planned to come to work, but after taking a glimpse at Saskia, I decided to phone my paed to see if she can see us. I live 35km from the paed and hospital so I like to be prepared. I got to the paed and Saskia had a seizure in the waiting room. Sounds horrid, but I was thankful it got us direct admission to the paediatric ward at Constantiaberg. For three days, they ran tests, EEGs and more tests. Luckily, she was found to be healthy but her meds levels were off and needed to be adjusted.
This is the day/ week/ life of a special warrior like Sassy… and of course her rather annoying sidekicks, Mom and Dad.
Next week back to the world of Keto – I promise ☺