Any mummies whose child has Epilepsy ?


Hi Catty,

I am already a member of Epilepsy Care Group. I joined in 2005.

There are several parents with children but if I am not wrong, quite a number of members are adults with epilepsy. I am not a very active member(as I am busy with 3 kids) but I try to particpate especially when there is any talk or activity relating to children with epilepsy.

Having a online support group for sharing/care may be helpful for parents who are too busy to meet up.
 
Hi Lishan,

Can I ask what happen if your son fits in class? Is the teacher prepared to assist him? Do you send him to school daily?

Definately we should start online support group dedicated to children with EP. How about if we start with Facebook?

@ Jacqueline, don't worry. Maybe just a small running nose.
 
Hi Catty,

When my son first had seizures, he was in a kindergarten. I pulled him out of the kindergarten when he was in K1 as his teacher/principal were not understanding of his condition and not supporting him in his learning needs. I managed to find a childcare centre where the principal & teachers were very supportive, helping to give him medicine (as he was there full day) and supporting him in his learning needs.

Now he is in a mainstream primary school and at the start of the year, I will advise all his teachers his medical condition, his seizure types & triggers, print out information about epilepsy, first aid, medical emergencies, etc. And I will meet the form teacher in person as well.

My son takes the school bus back. And I briefed the bus driver on his medical condition and what to do if he has seizures.
 
catty, ya even though its only flu now i also worried.. dunno if i over reacting anot... haiz cos now she teething n i also scared fever will attack her.. last time when yr gal was young does teething trigger seizure?
 
The thing is when a child is teething, they may have fever and discomfort.

Don't worry so much. If u notice she has too much discomfort and think fever is coming, give her some paracetamol to ease pain and as prevention first. That's what I do but I'm not a doc to advise. But I guess Prctml will not have much side effect.

When my girl is running a high fever, I would alternate nurofen and paracetamol, 4 to 6 hours interval to control the tempature. Ask ur doc if they advise same type of treatment.

Teething can be uncomfortable and irritable for a child. Give more water.
 
Missed out telling you that you just take it easy. Relax, If u r tense, I feel the child can feel too.
You have another kid to take care of also. Easy, steady, cool. If u r too stress, you will not be able to take care of the kids well.
 
Catty, ya try to give her water but sometime she drink 2 slip than dun wan already.. So I try to give her more often lor.. I been monitoring her temp everyday.. Hope I not overdoing it..
Ya I trying to ask myself to relax.. Cos I still bfing my #2 so whenever I stress up, milk supply drop n I even more stress.. Haiz.. Okie will try to stay easy, steady n cool...;)
 
Hi all... I'm a mummy whose girl are having uncontrolled seizure since month 7 till now 3 hrs old.. Seeing her with no improvement, Think for a change to TCM since western medicial can't help her...

Any recommendation pls pm me... Very much appropriated.
 
lisan, can i know which childcare you had enrolled your child to... I called many childcare center, when they heard epilepsy, they will reject our applictaion.
 
Anyone switched from tegretol to keppra? My kid has been taking tegratol for last 1 year, initially he used to have 1 seizure every month or so, now it has increased. One doc suggested eplim, another doc suggested keppra. We r confused. Please let us know if you have any experience with these medicines .... Please help...
 
Hi sukh,

Let me quote you a paasage from this book "Seizures and Epilepsy in Childhood - A Guide" by John M. Freeman, M.D. Eileen P. G. Vining, M. D. Diana J. Pillas:

(Chapter 9. Medical Treatment of Seizures)
<font color="0000ff"> " Most people's seizures can be controlled with a single medicine used in a proper dose to achieve a proper blood level for that individual. There is no correct dose of the given medication. The "proper" dose of medication is the dose that completely controls the seizures without causing significant side effects. There is not a "correct" medication as such. Some medicines work better for some types of seizures than for others. The correct medicine is the one that works.

The treatment of epilepsy is empirical. This means that the treatment of each person's seizures is a trial or search to find the appropriate dose of the best medicine for that individual. This "experimentation" is often frustrating to parents, since they are used to physicians' knowing, for example, the right antibiotic and dose to use for a child's ear infection. For antibiotics, we know the function, the proper dose, and the side effects. We know how much is necessary to kill the bacteria causing the infection. We can test the drug's effectiveness in the laboratory. We also know, for example, how "heart drugs" work and their side effects; we can use the electrocardiogram (EKG) to see if they are working or if they are producing toxicity. But, since, we do not fully understand how anticonvulsant drugs work, and since we do not understand the factors that permit a seizure to occur at a specific time, each child must be his own laboratory as a doctor attempts to find the proper dose of the best anticonvulsant. Side effects will vary with each child's metabolism and his individual reaction to the drug."</font>


What this passage says is that the doctor has to search for the medicine suitable to control your child's seizures. Both doctors are not wrong. My doctor told me that different medicines work on different receptors in the brain. The challenge is to find a right one. My son was on tegretol (carbamazapine) but he was a high metaboliser and the medicine did not reach therapeutic level and also he is prone to vomit the medicine out. So the doctor decided to switch to another medicine.
 
Sukh,

Did you go back to the doctor that prescribed tegretol to your child? Is he the one who has been seeing your child since the seizure started?
 
Hi all, Any one Faced similar situation as my child. She used to have 3-4 seizures in a year and was pretty well controlled by epilim. But this year her condition has taken a massive change whereby her seizures doesn't seem to respond to the medication which used to control her and neither does the new medications tt she is currently taking - phynetoin n keppra. Blood test was closely monitored to ensure her drug level is at it's optimal stage, however her seizures still not really responding well. Despite this, she is fitting 5-6 times in a day and this has been on- going for the past 1mth. As a result, my poor gal has been in n out of hospital bcos of this. As parents, it is v disheartening to see yr child going through this pain and there is nothing directly tt we can help.
Just wanted to check if there are any feedback or recommendations on docs at nuh or kkh. Tks
 
Just asking: some of you have 1 epileptic child. Are the seizures well controlled with medication? How about the siblings? Do they experience afebrile seizure or febrile seizures (with fever) at any point in their lives?
 
Hi

I am new to this thread. My 4 yo girl was diagnosed w epilepsy in oct last year. We have tried 5 medicine with various combinations but couldn't control her fits. Now on 6th medicine plus 2 others and for a week, it seems ok.

Our private neuro pd recommend us to seek 2nd opinion. So we will be seeing prof Ong at Nuh. Hope that he has alternative suggestions to control her fits without resorting to the ketogenic diet..

Lay Koon, I have a 10 mth old baby and so far no problem. I can't imagine if he will also have fits or epilepsy..
 
Hi driftingcloud,

When will your child be seeing Prof Ong? He is a very good and responsible doctor and very experienced. What type of epilepsy does your girl have?
 
Hi Lay Koon

We saw him this week. Yes he seemed very experience and could tell us our girl has frontal lobe epilepsy. We were thankful he spent quite a bit of time with us, explaining my girl's condition. In fact I was surprised cos I thought for public hospital, the docs won't spend so much time w a patient. Or maybe cos it's our first appt??

I read your previous posts. How's your son now? How old was he when he had his first seizure? Has he outgrown it yet?
 
Hi driftingcloud,

Prof Ong is a very good teacher and very patient. He is always like this. And there are some very good doctors at NUH too. Some doctors spend a lot of time explaining the condition and discuss the path forward.

My elder son was discharged from NUH in Sep 2008. He has been fine. In Sep last year (2012), he stopped taking medication. His medications were slowly weaned off since Sep 2008. We are still monitoring his condition. Hopefully everything will be fine.

And I asked about siblings because my younger son recently (in Dec 2012) had high fever (39.2C) and an episode of seizure followed. 1 min of absence seizure but that was enough to send us flying to NUH. His EEG showed some abnormalities in his brain waves. Prof Ong said to monitor. We hope and pray that that was an isolated case triggered by the strong virus and nothing more. Really shaken by this.

Anyone else has this experience?
 
Hi Lay Koon,

Oh dear, it is indeed very alarming to have a second child having seizure!! Hope that it's just a once-off incident.

So your elder son only had seizures for a few months? He just outgrew it? How old was he then?

Hope you don't mind me asking. Thanks and happy lunar new year!
 
Hi driftingcloud,

My elder son was 7 1/2 when he started having seizures. Things happened very fast. He had 2 seizures at home, separated by a few days. Then we went to A&amp;E to check what's wrong because there was really something wrong with him. He was virtually awake at night. Then at hospital, Prof Ong did a video EEG and concluded that his seizures were intermittent - i.e. comes and goes. Then he was put on medicine after medicine. We nearly quarrelled with Prof Ong at that time cos my son hallucinated. We thought it was due to the medications. But actually it was because the seizures had not been contained and spread to the sensory cortex.

After his discharge from NUH in Sep 2008, he has been seizure-free (touch-wood). He will be 13 at the end of this year.

Hope this helps. Have a great lunar new year! May everyone be blessed with good health!
 
Hi lay koon

Did your child has his education in mainstream school? My son was diagnosed with epilepsy at 7 mths. Fits free after 2wks n has been off med a few mths bk. He has been on med for the last 5 yrs. Academically he is slow n unable to catch up w his peers. I am so nerve wreck that he is unable to survive in mainstream yet really hate to see him in special school.

Need support. ...as frens ard me hv normal children.
 
Hi Lay Koon,

your elder son is fortunate that he's been seizure free for a few years already. My girl is still having seizures frequently and this journey to find the right med and dosage for her seems endless..

Hi Luv Mum,

Was your son lagging behind because of his epilepsy? or the medication he was taking caused him to be drowsy etc and couldn't pay attention? Just curious..
 
Hi luvmum,

My elder son is in mainstream school. So far the school and the teachers have been very accommodating about his condition. He is in P6 this year. In P4, he was awarded the Edusave Good Progress Award and that motivated him a great deal. At P5, he won the best improved student award in his class. That meant a lot to him too. His grades were not so fantastic in P5. He was failing or almost failing all of his subjects at the first semester. However, he made lots of improvements within the year eg. 20-30 marks per subject. He had difficulty in P5 primarily because the leap from P4 to P5 was huge (even for normal children).

Being on medication does have its adverse effects on studies. The medication slows down the brain and also affects his memory. He has improved the last 2 years primarily because:

1) I taught him in advance before the school teacher teaches it (just the basic concepts). That helps him to understand the topic. When the school teacher teaches the same topic, it will be a revision for him. And in the end, he does his homework a lot faster and correctly. That helps to lessen the stress on him. Before I embark on this tutoring method, he was really unable to catch up and sometimes got to do the maths question 3 times before he got it right.

2) medications have been reduced

3) his attitude towards studies have improved. He wants to learn and that helps to propel him forward.

Throughout these years, I have not scolded him even though he failed his subjects. He was getting 30/90 for his Chinese in P5 until the last SA2 in which he managed a 63/90 for the main paper. He really put in a lot of effort in this subject.

For normal school children, the support from parents is very important. For epileptic kids, we need to support them even more and be more understanding.
 
Hi luvmum,

How old is your son now? Which level is he in?


Hi driftingcloud,

Is your girl still under Prof Ong? The journey to find the right medication is sometimes long cos sometimes there is a preference for certain drugs or the body does not like certain drugs. My elder son was given carbamazepine but he keeps vomitting the medicine out. It was too yucky for him. So Prof Ong had to try other drugs.

I have heard from our family GP that epilepsy usually does not happen to siblings. Ours is the first case she has heard of in her many years as a family doctor. So not to worry.
 
Hi Lay Koon,

Yes, my girl is still under Prof Ong although we still keep contact with our private PD. It is indeed a long journey as my girl's case is quite difficult. She's now on 4 drugs and eventually we hope to drop to 3.

We are worried of the side effect and the long term impact due to her large dose of medication..now we can only focus on getting the right drugs and dosage to contain her seizures first, then think about the future.

Your son's story is inspiring..thanks for sharing. Your son is lucky to have such a patient mom
happy.gif
 
Hi driftingcloud,

Yes, controlling the seizures is of utmost importance. When the seizures are controlled, then after a certain time, the medication can be weaned off. Seizure medicines cannot be taken off like cold medications. They have to be weaned slowly following the doctor's instructions. Prof Ong is a very experienced PD neurologist and a very caring and responsible one. Your girl is in good hands. Do note down your concerns and talk to Prof Ong about them.

Just to share, my elder son was on 5-6 drugs when he was in ICU. Then at discharge, he was taking 3. When he went back to school, he was on 2. And the last one was epilim (or sodium valporate). He took seizure medicines from May/June 2008 to Sep 2012. We are still monitoring and making sure everything is ok.
 
Hi Lay Koon,

4 types of drugs proved too much for my girl..she was so sleepy and couldn't walk or sit up. So we has no choice but admit her to hospital again. Now she's on 3 types. Hopefully the 3 can contain her seizure. It's really a difficult balance to achieve.. Too little med she may have seizure. Too much, there are side effects..

Out of curiosity, how do you monitor your son?
 
My child first had seizure at 5 mths, now seizure free for 2 yrs but still on medication.

Now she has attention difficulties. Doc says common in child with epilepsy. She has problems in school, lagging behind peers, refuse to learn and recently she's very defiant. Refuse to do anything, refuse to shower, go for Chinese class, do homework, the only thing she does not refuse is candy.

So tiring. Any parent rocking the same boat?
 
Hi driftingcloud,

If the drugs are making the child drowsy, then it's good time to go to the doctor again. Sometimes, the child keeps sleeping and cannot eat. This is not a good sign. Whatever it is, please go to the doctor if you do not feel comfortable about the situation. After the seizures are controlled, the medications can be slowly reduced. Sometimes the doctor will switch medications so they are not so drowsy.

My friend's girl is under Prof Ong too (my recommendation). She was taking epilim but it made her so hungry she was putting on weight at an alarming rate. This made epilim not so suitable for her. Prof Ong switched her to another drug and she lost all the weight she gained during epilim but didn't get any thinner than her original self.

How I monitor my son? Well, nothing much in particular. I just go through day by day as per normal. I will ask him how he is. Tired? Feeling OK? Headache? I always tell him to tell me if he does not feel well. He will tell me if he feels sick etc. It helps that I have been a SAHM since he was born. I make sure I have time to spend with him.

Tell you a joke...not long after my elder son stopped his medication in Sep 2012, he told me he felt ants crawling on his arm. I thought, "numbness!" And its his left arm. My alarm went up cos his partial seizure was in his right brain and it affected the left side of the body. I kept asking questions and questions. He told me the sensation came after he stopped medication! Wah! I thought jialat liao! Maybe need to bring him back to hospital. Then after 2 days he told me he managed to beat the ant on his arms that day! So they were physical ants and not numbness. Wah lao! I told Prof Ong about this incident. He told us that if really the seizures were to be back, it would not be just slight numbness. It will manifest as something else too. So we concluded that those were really ants.

But it really shows up our fear of having to deal with another seizure. I really appreciate being alive and my elder son getting so much better. I felt really blessed, more so than before his illness. However, fear reared its ugly head again when my younger son had seizures last year. I feel that I have to be on my toes all the time. Hopefully, this feeling will subside as time goes by.
 
Oh driftingcloud,

i forgot to mention that I put my son on a fruits and vegetables supplement after he was discharged from hospital. This was recommended to me by another mummy whose son also had status epilepticus. He recovered fantastically well. Even did very well in his studies. I am so grateful to the mum for introducing this to me.

The supplement helps to boost his immune system and make him stronger and less susceptible to illnesses. This is important since illness will reduce the seizure threshold. He is still taking the supplement now.

You can pm me if you are interested. Btw, I ran through the entire ingredients list with Prof Ong. Because they are just fruits and vegetables, he is fine with that. But not so for TCM. So we didn't try TCM, didn't try tuina, didn't try acupuncture. We eat healthy, did lots of physical exercise, not much computer games (almost none), little TV, sleep very early (9:30pm is bedtime), and spend lots of time together as a family.
 
Hi Lay Koon,

Have pm you. Whatever can help my girl, I will try!!

Thanks for your post. You are such a wonderful mommy and your story always inspires me.. I will look forward to the day my girl will be like your son, free of any medication.

But before that, I can only take one step at a time, after almost 6 mths, we (Prof Ong as well) are struggling to figure out which meds work best for her..in fact we are going back again to the first med she took and trying out combi with others. Meanwhile, her seizures seem to have gotten worse.

She's also on epilim and it does increase her appetite. But we are happy cos she used to be rather fussy about her food. Now she has gained some weight but in my opinion, not excessive. Anyway we don't even know whether epilim works for her, so I am not concerned about this side effect yet.

understand your fears of having to deal with seizures again..any mommy or daddy who has been through that will always have that fear, I think!!
 
Hi lay koon,
Can u share the fruit n veg supplements to me too. Wld like my son to try too.

My boy is in k2 and we r planning to let him try mainstream yet extremely fearful that he will get kicked out cos academically he is still not strong though improving. He was under follow up with dr Stacey at nuh n was off epilim last yr. He has visual n motor issues too. It has been an exhausting journey having special needs child esp when u see other kids learning at ease while he is constantly struggling.

V disheartened indeed n nx yr the worries will intensified
 
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!
 
I want to tell everyone about a common type of childhood epilepsy that doesn't need medication - it usually starts about 3-5 years old, stops a few years later, and the usual characteristic is that the child vomits a little during or just before the episode (emesis). Its called Panayiotopoulos Syndrome (google it) and its worth checking to see if your paed neurologist is familiar with it. There's a book about the condition - "Panayiotopoulos Syndrome: A Common and Benign Childhood Epileptic Syndrome". Regular medication is not required because it is self limiting. The only medication required is to stop the convulsion if it goes on too long (rectal diazepam or buccal midazolam). Hope this is helpful to someone!
 
Hello all,
Please allow me to revive this thread.
I have found so many inspiring stories and know I am not alone.

Our darling son who just turned 3 in Dec 2014 is having unusual jerking of arm and leg, and has been in "spaced out" / "drunken" episodes with a shy smile, lip smacking, swallowing, fingers fumbling. My hubby and I at first thought these were signs of a nervous tic since he did have many changes in his life in the last 6 months (e.g. moved house, moved up a class to more structured learning, long-term nanny emigrated, daddy went back to work after 9 months of redundancy), but having research more it appears he must be suffering from partial seizures a form of epilepsy. He does not have any convulsions nor lose consciousness, but he cannot talk sometimes during an episode. He can have as many as 7-8 a day, mostly lasting 2mins each though the longest recorded was about 5-6mins.
We saw a paediatric neurologist and an EEG was carried out with abnormal activity detected (although the doc said up to 30% of children could have abnormal EEG without any seizures). We are having an MRI next week.
My hubby and I are devastated. I for one started to wonder if I might have caused him permanent brain damage for not having spotted this earlier - perhaps he has been suffering from it for a long time but his seizures if they are what they are are so gentle and look almost like daydreaming or he being shy.
I would so love to hear from any one of you on the following - if you can find the time to help me:
(1) seizures / fits had been mentioned - any one with my kind of seizures / fits i.e. without convulsions and still be diagnosed with epilepsy and treated as such?
(2) the paed neurologist is recommending epilim or keppra, stating his preference for the latter. We googled on the side effects for keppra and the aggressive / depressive mood changes have been so often reported I am freaking out. Our boy is such a happy little chappy and it would kill me for him to lose that sparkle in him and his joy of childhood due to drugs. Anyone with such dilemma?
(3) Anyone chose not to medicate? If yes, any fear of permanent brain damage due to the seizures?
(4) Personally we have had bad experience with the Singapore specialist profession if we may be honest, as did many of our friends. All recommended at least 2-3 opinions before we decide to medicate as this is for the long term. Any reliable recommendations of paed neurologists?
I am so sorry with this lengthy message - guess you all out there can sense my desperation.
Hope to have your support. Thank you ever so much.
 
Hi darlingson,

(1) seizures / fits had been mentioned - any one with my kind of seizures / fits i.e. without convulsions and still be diagnosed with epilepsy and treated as such?

>> There are seizures without convulsions, such as partial seizures, absence seizures. I am not an expert on seizures but there are some without convulsions. Eg. my elder son had partial seizures when he started having seizures. He could talk and answer questions like any other normal child even during his seizures. That was one reason why the doctor took a longer time to ascertain if he were going through an episode. The best way to find out would be to do a video EEG. During episodes which seem like something's happening, as seen in the video, the doctor is able to call up the EEG to do a check on the brain waves at that instant of time. That will tell if these manifestations are due to the seizing in the brain.


(2) the paed neurologist is recommending epilim or keppra, stating his preference for the latter. We googled on the side effects for keppra and the aggressive / depressive mood changes have been so often reported I am freaking out. Our boy is such a happy little chappy and it would kill me for him to lose that sparkle in him and his joy of childhood due to drugs. Anyone with such dilemma?

>> Of course, everyone goes through this dilemma before deciding whether to medicate or not. However, my elder son had difficult-to-treat epilepsy and when he was in hospital, he was having 7-8 seizures a day. Short seizures but they keep on happening. But this condition is known as status epilepticus and it is a medical emergency. In the end, we thought we would be very lucky if the medications could stop his seizures. He was on 5-6 medications concurrently before his seizures stopped. From thinking whether to medicate and whether medicines would affect his behaviour, thinking, etc, to hoping there would exist medications that can stop the seizures - a world of difference in the thought process. All because of his refractory epilepsy.

Putting a stop on seizures is really important, I must emphasize. With seizures, how can one live a normal life? And seizures can propagate from one part of the brain to another. My son's seizures started with the left hand twirling of the fingers - so benign looking but yet so difficult to treat. When the medications were not yet able to stop the seizures, the seizures propagated to the sensory cortex of the brain and he started hallucinating. Very horrible to see. Looked as if he were possessed.


(3) Anyone chose not to medicate? If yes, any fear of permanent brain damage due to the seizures?

>> Prolonged seizures and frequent seizures can damage the brain. The medications suppress the brain functions so the seizures would not happen. You need to seek medical advice on this. I would not advice on not medicating.


(4) Personally we have had bad experience with the Singapore specialist profession if we may be honest, as did many of our friends. All recommended at least 2-3 opinions before we decide to medicate as this is for the long term. Any reliable recommendations of paed neurologists?

>> We are really lucky. Our assigned doctor at NUH prove to be godsend. He is A/Prof Ong Hian Tat. Very knowledgeable and very caring. The NUH neuro team is also very strong. Do bring your child for a second opinion there. And do it fast. Medical conditions like this cannot wait. The faster you seek treatment, the better the chances are at recovery.
 
Do go through A and E to NUH for an assessment. That way, if you are a Singaporean, you get subsidised rates. And most people seek treatment in KKH or NUH (for kids) for this condition because the treatment tends to be prolonged and private hospital charges are exorbitant.

My son stayed 1 month in ICU and 2 months in general ward, with lots of follow-up appointments for rehabilitation, speech therapy, occupational therapy, etc. The bills can amount to a big sum.

But of course, maybe some kids only need some medications and the seizures would be contained. Then regular checkups would be enough.

Take heart, and touch wood, my son's off medications for slightly more than 2 years now. He is now in secondary school, taller than me and very independent.

Do post your other questions on the forum. It is good for everyone to share their experiences and help each other along.
 
Hi LK,

You are a godsend, thank you.

We have an appointment with NUH but the earliest they could give us is 11 March. And the one at KKH is 26th March. We too feel it is too long a wait.

You mentioned your elder son has a difficult to treat condition - but did he have more than partial seizures? At what age was he diagnosed? You are a wonderful mother to support your dear son through all these years. Is he still on medication? Sorry to probe into your personal life - if you can share the details it will help me understand more of what I need to do as guilt and helplessness is consuming me and I am struggling to function effectively, especially at this time when my son needs me more.

My son can help over 10 episodes a day with each around 2 minutes. Some episodes seem to be for a couple of seconds! Otherwise he is a happy chappy like nothing was going on!

We too thought of A&E but wondered if they would send us home since he might not display any of those episodes during the 5-10 minutes with the doc there to warrant a further investigation. Is this wrong i.e. they would in fact take him seriously?

Thanks for all your help again.
 
You should send your son to A&E cos his seizures are intermittent - comes and goes. Seizure diagnosis is based on parents' accounts. Since the seizures have not really stopped, I believe the doctor at A&E will ward him for further investigation and testing. And you need to tell the doctor when the seizures started, how long the seizures last each time, the frequency of the seizures, and the manifestations during these episodes. He really needs further medical monitoring and assistance and please ask the doctor at A&E to ward him if he didn't bring it up. Your account shows a possibility of status epilepticus so it can be very serious. Please go immediately! Don't wait anymore!

My elder son had simple partial seizures which developed into complex partial seizures and hallucinations. He was diagnosed at 7.5 years old when he was in P2. No history before that. Nothing at birth also. He was on 2 medications when he went back to school (I downgraded him 1 year to allow him to recover). At the end of P5 (but he should be in P6 if not for the downgrade), his medications were completely weaned off. After discharge from the 3-month hospitalisation, he did not have any more seizures (touch wood).

You can also scroll through this thread and look for my name. I have posted on this thread on and off from the start of his epilepsy till now.

Do post and share your experience. Or you can also pm me for my number if you need to talk to me.
 
Hi Lay Koon,

Thank you so much for taking the time to share. You affirmed what we thought was the right action.

We brought the little one in today and he is admitted for further assessment and tests. We were lucky that by the time the paed neurologist finally turned up our son did have a seizure which she witnessed and agreed something is not right.

Hopefully we get to the bottom of this soon - he is so young...

Thank you
 
Hi we took him to NUH and so far only been assigned to a rather junior doc? We will know more today. Think we are seeing prof low?
 

Thanks Lay Koon. Yes read up on her. Think she is the one doing the rounds this morning I understand, not sure if she is assigned to us. Sounds like on this thread prof Ong is highly recommended. Should we ask for him?

I am fearing the worst today....
 
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