30 October 2012

So Much Happening

Dear concerned friends and family who have been wondering about the lack of posting,

We're dealing with quite a lot right now regarding Daen's condition. It has spread, despite the steriod injection and oral anti-inflammatory medication. This has made me rather reticent of late so. There are a lot of decisions needing to be made regarding vaccinations and new injections. I am also channelling my time and energies into learning from other mums about how best to manage his arthritis. We are also bracing ourselves for the start of a new injection regime for him (once a week injections of Methatrexate).

Sorry if you're reading this while having your meal!
Meanwhile, Vera has come down with 4 consecutive days of persistent diarrhea (up to 10x/day) and has just had 2 days of high fever. At the A&E, I made the call yesterday to nurse her at home (we were already booked for a bed when I did an about-turn). We've completely cut her milk intake and put her on just rice water and pedialyte, SMECTA, Lactofort, and fever meds. She is better today but still not in the clear. Kudos to Beth for single-handedly nursing her while I went to work.

We are keeping our fingers crossed that the diarrhea is a viral infection that will go away, and not a long-term side effect of her seizure medication Epilim.

03 October 2012

Not Fits, Not Spasms

Just 4 good days of Vera back to her normal self and we’re back with her in the hospital.

She has started having the 'Episodes' again: Eyes looking to the corner, hand jerks, stiff legs.

Consistently once a day, each lasting for up to 1 and a half hours.

This time round, the EEG was put on her for a longer period, and managed to capture an Episode.

I am calling it an ‘Episode’, because, as it turns out, what we are seeing above turns out not to be fits. No seizure activity shows up on the EEG when she was having the Episode.

So what is it then?

The senior neurologist’s take is that this is a development of her Trisomy 18 brain. Making her lose some control, or altering some of her ‘regular’ movements. This may become her 'new normal'.

The good news is that, since it is not seizures, we need not panic each time it occurs. This takes a great weight off our shoulders. (If it were seizures, we have to give medication in 5 minutes, or there will be some brain damage.)

The good news is also that the EEG shows that it is not spasms.

However, it is clear that her EEG is not normal – which is totally expected due to Trisomy 18. There is evidence of seizure-triggering activity, which means she is highly prone to having seizures. She will be on anti-epileptic medication Epilim for a minimum of 2 years.

Daen’s Arthritis

Meanwhile, the swell on Daen’s ankles have subsided, I would say by 70%. It remains to be seen if it will go away completely. He still walks with a visible limp.

Daen is also getting well acquainted with hospitals. He looks forward to going to “chea chea Vera’s hospital” NUH, and knows his hospital is KK.

The pronunciation bee can, at 2 and a half, say the word ‘Rheumalogist’ & 'Photosynthesis'. Perhaps a career in medicine or botany (think long big words) may be suitable for him.