Any mummies whose child has Epilepsy ?

Prof Low is Prof Ong's teacher, I think. You can ask for Prof Ong but do check if you need to pay private rate if you do that. Having said that, my son's doctor-in-charge is Prof Ong but Prof Low, A/Prof Stacey Tay and other neuro paediatricians have seen him also ie the entire neuro paeds team. Prof Ong highly recommended by me on this thread so you see his name mentioned most often. Your son's assigned doctor should be the name written on the panel above his bed. Is it Prof Low?

Do note down your concerns, fears, etc, and communicate that to the doctor. You need to understand more about seizures and epilepsy in order not to feel fearful.

Has any video EEG been done?
 


Which ward is your son in? Last time, my son stayed in a 6-bedder ward. We asked for 4-bedder but not available. Later we realised how important the ward class is. The 6-bedder ward is cheaper in terms of hospitalisation bills. It also means that after discharge, the consultation, medication, and further tests are also subsidised. If we were to choose A class wards, after discharge, we would end up have to pay high charges for the follow-up events.

At that time (Sep 2008), the hospitalisation bill came up to $15k for 1 month in ICU + dependency ward (another room in ICU which is not charged the ICU rate), and 2 months in the 6-bedder ward (should be B2 ward, right). The charges per day have since increased.

Oh I remember, the rates at ICU/high dependency unit in ICU, is lower if you are initially from subsidised wards. If the child is warded in A1 ward and needs to be admitted to ICU, the rates will be much higher than if the child was warded in B2 and then admitted to ICU.

http://www.nuh.com.sg/patients-and-visitors/appointments/hospital-charges/inpatient-charges.html
 
Hi .. need some advise... my son had his first seizure in may 2014 for 5 mins. 2nd seizure was in june 2014 for about 3 mins. 3rd seizure was in feb 2015 for about 30 seconds. 4th seizure was just happened last wednesday for about 7 mins, and need to insert the medicine in his butt then stopped. All seizure happened while his sleeping. 1st and 4th time seizure he was admitted to KKH and under follow up with them. Recent admitted, the doctor advise us to let my son under medication - epilim. They also told us the common and rare effect. I am very stress up and helpless. I do not know whether do i need to give and do not. Btw, my son resistance is not so good. I am worrying that once his taking the epilim, his immuse system drop. I need advise. Thank you
 
Hi there. I totally feel for you as we are trying out Epilim too and are suspecting side effects. All anti-convulsants have side effects. I wonder what "common and rare effect" they mentioned? My son who is 3 years and a bit started Epilim 3 weeks ago and we have just started on the "therapeutic" level - but no respite on the seizures (we suspected over 100 per day and during sleep - he has absences, complex partial and myoclonic). Epilim is usually the first line medication prescribed, then If it fails then move on to try another. Unfortunately it seems it is all trial and error when it comes to getting epilepsy under control. I have to say usually (as I had learnt from googling) meds is prescribed after the second episode. I know how you feel - the helplessness etc. as our nightmare properly started 2 weeks before CNY.
 
Hi Darlingson, thkq for your reply. I think i will try my best to accept it...but in fact i am really cant think out why my son had it... epilepsy.. like those old folk say -let bb cry too much will cause this disease? Or when pregnancy time eat banana or lamb meat...
Btw, we had an appt in KKH on 07 april.. so, we need to let the doctor know our decision whether let my son under medication or not...
Anyway, thkq for ur reply once again...
 
no worries. It is not an easy thing to accept. I have to face it every day and night and watch him having seizures and can do nothing about it. I have started to question everything.
We were like you - the reason why we went to NUH was cos we needed a second opinion before putting him on the meds. Then the doc said, if someone has 6 seizures a year he would tell him to get on meds let alone my son who has so many a day, and that if my son were his, he would immediately put him on meds. We then realised the importance of getting the seizures under control as we read how seizures could harm the brain. As thia book said, for all parents with children with epilepsy and it is nothing but catch 22 when it comes to seizures vs. meds. Both are bad but which is the lesser evil. Good luck with your case. We have an appointment at KKH next week too.
 
Hi Darlingson.. thkq for ur advice. I might will seek for 2nd opinion before heading to KKH appt on 7 April. Btw, is ur son under subsidy? If yes, how do u went for 2nd opinion at NUH? Thanks.
 
I am no expert as this is still new to us (discovered in February). But from the research we have done, it sounds like medicaction is optional for your son which might explain why they asked you to go home and think about it. Though as mentioned our latest doc thinks medication should be started asap if epilepsy is diagnosed to improve the prognosis. Our first doc also sent us home to monitor for 2 months even though he captured abnormal activity in an EEG and my son has seizures so many times every day. Admittedly all very confusing. We are private patients currently but that was only cos we opted for a private ward when they admitted my son at A&E. If not via A&E, it will be a wait if you go down the private route at either KKH or NUH.
 
Had seeing doctor @ KKH yesterday. And had decided to give my son on medication. Will start on this Friday night. Very stressful and reluctant. Hope everthing goes well. And will need to back for review 2 months time together with the blood test.
 
Sharing though it's not kids but Both my mum and bro are diagnosed with epilepsy. I have witnessed the whole "fit process" when it happened, had to admit I was traumatised especially it only first happened to my mum when she's 58 years old (last year). It's dangerous though it's lasted only few mintues- my mum had a 2nd degree burnt on her hand when it relapsed one fine morning when she was preparing her tea for breakfast, was very heartbreaking.
I've googled and read up about this illness because other than suggesting long term medication, doctor can't seems to find anything wrong, I'm now getting them to use more natural remedy- frankincense
 
Dear Mummies,

Chance upon reading this old thread....

Would like to ask if any mummies out there are taking epilepsy medication while trying to conceive or during pregnancy?

I am currently on carbamazapine to control my seizure since 1.5yrs ago ( currently, i am 33 yrs old, my family do not have any seizure history at all))... My neurologist told me that it is the safest medication for me to take if i do have a family planning.
Beside carbamazapine, she also prescribed folic acid (5mg) per day. to me.

But, i am still very worried that if i conceive/ during pregnancy while taking carbamazapine which the medication will pass on to my baby, hence i am in dilemma...

Can any mummies give me your advice, please ?

Thank you so much.
 
Dear Mummies,

Chance upon reading this old thread....

Would like to ask if any mummies out there are taking epilepsy medication while trying to conceive or during pregnancy?

I am currently on carbamazapine to control my seizure since 1.5yrs ago ( currently, i am 33 yrs old, my family do not have any seizure history at all))... My neurologist told me that it is the safest medication for me to take if i do have a family planning.
Beside carbamazapine, she also prescribed folic acid (5mg) per day. to me.

But, i am still very worried that if i conceive/ during pregnancy while taking carbamazapine which the medication will pass on to my baby, hence i am in dilemma...

Can any mummies give me your advice, please ?

Thank you so much.

Hi Mummy_SW,
Do you want to consider looking into aromatherapy with oils like Frankincense and Sandalwood?
 
Hi,

I was epileptic myself since primary three and faced multiple absence and myclonic seizures, I was constantly on medication throughout my life and have since stopped now that I am 22.
Common problems my parents faced was keeping track of my seizures when I slept as well as medicine compliance.

I am currently a year 4 Industrial Design student at NUS. In essence, I am in the field of product design and for my final year project I am working on designing innovations to help epileptic patients and their caretakers with their everyday lives. I am wondering if anyone is willing to talk to me so that I can design a solution for a problem you currently face or provide me with insights into your experiences so that I can design a product that will be truly useful for epileptic patients.

I am currently in contact with doctors but would like to speak to actual patients and parents to see how I can help.

Thank you :)
 
Hi, has anyone tried ketogenic diet? can i please get any opinions from any mother who had tried ketogenic diet on their child?

thanks in advance
 
Hello blueshell, sad story mommi :( , i wish you guys to be strong and go through that, you have to speak to neurologist, he will give you suport in your case! Hope you and your baby will be better!
 
Dear Mummies,

Chance upon reading this old thread....

Would like to ask if any mummies out there are taking epilepsy medication while trying to conceive or during pregnancy?

I am currently on carbamazapine to control my seizure since 1.5yrs ago ( currently, i am 33 yrs old, my family do not have any seizure history at all))... My neurologist told me that it is the safest medication for me to take if i do have a family planning.
Beside carbamazapine, she also prescribed folic acid (5mg) per day. to me.

But, i am still very worried that if i conceive/ during pregnancy while taking carbamazapine which the medication will pass on to my baby, hence i am in dilemma...

Can any mummies give me your advice, please ?

Thank you so much.

Hi mummy,

Just happened to see this post, even though was posted 2 years ago.
How's everything?
 
Just wondering, why epilepsy can't be detected during the detailed scan during pregnancy similar to Down syndrome?
Hi,

I was epileptic myself since primary three and faced multiple absence and myclonic seizures, I was constantly on medication throughout my life and have since stopped now that I am 22.
Common problems my parents faced was keeping track of my seizures when I slept as well as medicine compliance.

I am currently a year 4 Industrial Design student at NUS. In essence, I am in the field of product design and for my final year project I am working on designing innovations to help epileptic patients and their caretakers with their everyday lives. I am wondering if anyone is willing to talk to me so that I can design a solution for a problem you currently face or provide me with insights into your experiences so that I can design a product that will be truly useful for epileptic patients.

I am currently in contact with doctors but would like to speak to actual patients and parents to see how I can help.

Thank you :)
 
Hi,

I was epileptic myself since primary three and faced multiple absence and myclonic seizures, I was constantly on medication throughout my life and have since stopped now that I am 22.
Common problems my parents faced was keeping track of my seizures when I slept as well as medicine compliance.

I am currently a year 4 Industrial Design student at NUS. In essence, I am in the field of product design and for my final year project I am working on designing innovations to help epileptic patients and their caretakers with their everyday lives. I am wondering if anyone is willing to talk to me so that I can design a solution for a problem you currently face or provide me with insights into your experiences so that I can design a product that will be truly useful for epileptic patients.

I am currently in contact with doctors but would like to speak to actual patients and parents to see how I can help.

Thank you :)
Hi ! MY 9 YR OLD has been having seizures from Feb this year 3 times the last one was a multiple one.Can you advise me what to do ?
Wish this thread was active would like to reach out to parents of kids in similar situation

Thanks
 
Hi ! MY 9 YR OLD has been having seizures from Feb this year 3 times the last one was a multiple one.Can you advise me what to do ?
Wish this thread was active would like to reach out to parents of kids in similar situation

Thanks

How's your child now? It's been more than 1 year from your posting. So sorry I didn't see this earlier.
 

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