Constantly feeling tried after my teenager had a tonic clonic seizure when she was having a 1-to-1 consultation session with psychologist yesterday.


Yesterday afternoon, I had slept together with my girl (as she felt extremely tired and headache after an attack), and slept at 9pm at night.

This afternoon, took two 1 hour light nap, near where my girl is.

Now, I am still feeling restless, tired and sleepy. Am I mentally tired or depression?

Thanks.

How is your friend’s daughter condition? Is she seizure free?

My daughter follows the medication (i am there to make sure), sleep early (i am there to remember her everyday at 1030pm), but stress wise, quite tough as her school wk and her coming national exam.

Her neuro still titrating her medication. Her tonic clonic seizure is not quite under control.

Is your friend willing to know me? I am keen to be friend with her.

Like to know any parent who teenager kids are diagnosed with epilepsy.


Like to have support from one another as well as vent out our frustration.

Thank and appreciate.

Estéema:

@ ksptan


You might want to get in touch with following:-

EPILEPSY CARE GROUP (SINGAPORE)
2 Kallang Avenue
#08-08 CT Hub
Singapore 339407
Tel: (65) 6358-0566

Do read more abt epilepsy, as a parent’s way in handling affects how your child perceive herself.

https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents

Thanks.
I had called the epilepsy care group and email them last week.
Have read lot of articles already.

Anyone know any whatsapp support chat group for Singapore epilepsy? Like to join one.


Trying to find one but in vain. Have email the Singapore epilepsy society but they reply do not have one.

Too tired/No time to attend any gathering.
When my girl is at home, I need to look after. When she is at school, I try to do all the washing/cleaning housechores done and take a small nap before she is back.

MrsKiasu:

ksptan :snuggles: so sorry to hear that..my initial thought was to as much as possible make your home environmentally safer for your dd..not sure if she boils water etc..maybe if just get hot water, use hot water dispenser, dispense hot water/make drinks and drink at the same table so that she doesnt need carry the hot water to another point..the toilet, try to cover those sharp corners/edges and maybe anti slip floor mat(?) so that if she falls kinda cushioned, ask you dd not to lock the door from inside..so sad to hear that..it must be very difficult on you..please dont give up..look forward..that one day she may overcome it and emerge stronger..best wishes to your dd.

Thank for the encouragement. She was standing dispersing hot water to a cup and it happened. Just luckily I was passingby the kitchen, sensed unusual pause of her action (less than a min) and quickly push the cup further and hug her tightly with all my strength. A few second later, she became unconscious and started jerking.

But I cant covered all my house floor with carpet.

And I am worrying everyday when she travelled back home from school. Cant do anything and keep looking at the clock until I saw her at the doorstep.

We let her live as normal, but cannot stop worrying.

Ksptan:

KTPH.

Too be honest, my girl is diagnosed with epilepsy seizure on Aug 18. She had experienced a total of 9 fits between 5Oct to 28 Nov (every week).
Every time we admitted her to A&E, the doctor took her blood test and urine test , all no problem. They keep increasing the dose of kappra fr initial 250mg to now 1500 mg twice per day. We only managed to get hold of the neurologist 2Nov when she is warded on 30Oct . And she is discharge after the neurologist increase the medication to maximun.

Life is tough. No Chinese New Year mood at all. I have try to be patience with the titrating of the medication.

My girl had seizure once every week for Oct and Nov and none during Dec. Thought all go well. But when school reopen , back to the same. Additional new medication is added during Dec.

She is taking her A level this year. Wondering her seizure is due to stress and tiredness. Just saw her new timetable from next week onwards, long hour of lesson almost thrice every weeks.
Cannot start to worry.

She injured herself (with bruises on the chin and forehead) when she experienced seizure at toilet. Recently , I managed to get hold of her before it happened, preventing her from falling and scald by hot water.

Do not know how long will it take to find the right combination medication? And don't know how long can I withstand this type of stress? No mood to do anything (watching tv, eating, sleeping).

Trying to find a support group (through email) with the same experience but in vain.

lee_yl:

Ksptan,

I have asked around and got a contact for a private neurologist through a friend in the medical line. But the thing is, I cannot guarantee that after you have forked out the money you will get the results you want and it won’t be cheap. Does your child have medical insurance coverage?

My friend who is working in the health line said that as kids grow, their medication need to be finetuned in order to be more effective in controlling the condition. Meanwhile, you take a breather and wait for the specialist to take a look at her.

If your daughter can walk, another way is to walk in to TTSH emergency dept and tell the doctor she has fits and you can’t handle and request for a NNI neurologist to see her. I personally think TTSH is better than KTPH.

What we are looking for is a one time consult with the experience pte neurologist.
To confirm that the way the drug are introduced are correct, increasing seizure is not due to overdosage of drug, no much brain damage to the child for having fits every week.
I know that may not be able to get much info, but still like to try for once to feel more secure about what hospital is doing.

Btw, the neurologist appointed to us is associate consultant, not much experience.

Which hospital has a better service? In term of getting apptment done faster, fast/able to communicate with other wards/depts/clinics/A&E, etc.


Or like what my friend told me all govt hospitals are the same - slow, do not communicate with other wards/depts/clinics/A&E.

Like to hear more views and personal experiences.

Thank and appreciate.

Is TTSH service the same as KTPH?

My friend told me all Govt hospitals are the same. No point transferring.

Like to hear more views and experience.

Appreciate and thanks