Hi everyone here, I'm new to this thread.
Some background, my little girl was diagnosed with TS, as a result, she has infantile spasm.
First diagnosed when she was 6 months old when I spotted her with some weird staring in space look, and light hand movement.
This was something that even when I brought her to a PD, he find the action not specific enough as a sign of infantile spasm.
But still I decided to bring her to KKH A&E to have double check, which I thank God that was the right decision to make.
It was a hard fact to accept but reality still has to set in. So for all parents reading now, we are stronger than what we think. We need to be strong for our kids.
She's on vigabatrin now, which she's accepting well. We are seeing Dr Terrance from KKH, very nice and patient doctor.
I'm very impressed by the service quality of KKH. It may be a public hospital, but the nurses and doctors are experience and patient.
Just a note, I'm not sure how the hospital system works, but since I admit my girl via A&E, she was admitted to Class B ward, subsequent doctor consultation and test were subsidized accordingly.
Sadly she had an attack in end Dec due to fever, and the episode last for more than 1.5 hours. Went into ICU. Thank God again that she recovered soon.
I was at work at the time when it happened, and thankfully in law was around and quickly send her to KKH.
Although we were told it will have been better we called the ambulance instead, as they can administer her on the spot. Lesson learnt.
Now she's turning 1 soon, and she crawling around, can stand with support. But when we attempt to let go of our hand, she seems to be aware and start to squat down.
But any little milestone is a great achievement to us.
Some questions to ask fellow parent:
1) Anyone registered with Epilepsy Care Group Singapore? Is it good for use to join them?
2) Any constraint that we might meet in this society, e.g.
- Going to mainstream childcare/kindergarten/primary school
- Travelling overseas
- Insurance coverage
3) Any good early intervention program to recommend
4) Any mom who is a SAHM? I'm considering but thinking when is the right time. I salute all SAHM, cause I know working at home is far more tiring than working at work.
Let's keep this forum alive, and continue to give support to one another.
God bless!