Any mummies whose child has Epilepsy ?

blueshell

New Member
Everything was ok until my girl had her first fit in her 5th month. Now she is 1 year old already and she has more frequent fit. I am very worried and would like to share opinions with mummies in the same situation as me.
 


Hi Catty,

My son has his fit when he was 2+, after that he has fits at least every month, we bought him to see the neurologist, and confirmed that he has epilepsy. He is now on long term medication to control the fits, Dr said hope he will grow out of it when he reach his teen. He is now coming to 7, and he will still have very minor fit once awhile.
 
Halo Catty

My elder son has fit when he was 3yrs old. He's now seeing the neurologist in NUH. After seeing him and on medication, his fit is under control. Hopefully able to stop by end of this year.
 
Thank mummies for your reply.

My girl has seizure very often now. Almost every week once. Changed medication 3-4 times now. Now she is on Sodium Vaporate.

I am worried she development will be affected. I have this fear that she will be slower than other kids when she grows up.
 
Hi Catty,

I had epilepsy since I was 13 years old and the last relapse I had was when I was 27 years old. At that time, I dropped my 4 month old son in the car but amazingly, (Thank the Lord!) he held on to my legs and stood firm(a miracle). Anyway, I have stopped my medication and since then had been fit free. However, my doctor said that they detected a wound scar on the right side of my brain and this should be the reason for it. So I am still not advised to drive.

Just somthing to take note(may not be the same as your daughter though). For me, fatigue is always a trigger. I realised that it always comes when I am terribly tired. So maybe you can try to recall your daughter's state before she had her seizures. You may be able to prevent it or prolong the intervals. I was also on Sodium Vaporate and another type of medication. Had changed medication many times too until I found this to be more suitable.

I know you must be feeling terrible right now seeing each seizure she has. I saw my girl had it(but fever fit) when she was one plus year old and I really went hysterical out of fright when I myself suffer from this.

May you be strong...........
 
My son just had a minor fit during Chinese New Year, although its a minor one, but every time i see that, i will want to cry, sigh, really hope that he will grow out of it soon.

We are so worry that he will not able to cope with the busy schedule in P1, since he will tend to have bad headaches when he was under stress and too tired. Luckily, so far he only complained of having headaches a few times. I do believe the medication has affected his growth a bit, he was used to be always the tallest in class, now, his height is only average, and very thin.

Btw, we are also seeing the neurologist in NUH, he is Dr Ong.

Its so nice to have all of you sharing your experience.
 
hi catty,

how do u know that your gal is having fits? Clenching of her fists/legs?

hi chrisma,

i has my 1st epilepsy attack when i'm 21 yrs old. gd for you, fit-free & no more medication. for me, my neurologist has said that i need to be on long time medication, cos if I'm off medication, my attack will occur. all my attacks happen in my sleep. the last one happen when I'm 6 mths+ preggie. thanks gdness, my gal is ok till now. she's 5 mths+.

Epilepsy is hereditary, that's why i'm very afraid that my girl will inherit it. but mine happen in adulthood and no family history.

hi fatgirl,

ur hubby case is similar to mine. once i'm off medication, my fit will happen. so i'm on long term medication.
till now, only close friends know of my situation as I do not wish other people to know. i'm worried on other people perception on epilepsy people. i dread going job interviews, esp on the health declaration portion.
 
Hi,

The fitting pattern changed, It was jerking of one side arm and leg then later stiffening of body.

Now she is fit free for 2 weeks with sodium vaporate. i am happy for now. She seems to be better with this medi.

It seems like this kind of attack can releapse even if it stop for a while. Mummies who have this problem and taking medi, can tell me whether you are affected by the medi or not? My girl so small and I also dont know how she feel. Drowsy, tired after taking medi?

And also how do u feel when u have an attack? I really pity her whenever she fit. She looked so tired and moan softly to me during her post fit and my heart just sank.

Thank mummies for sharing. I wish the person who suffer is me instead of my poor girl who can't even tell how she feel.
 
Hi Catty,

The medication will make them drowsy and sleepy. For my son, he will have severe headache til he cries whenever after his fits, yah, its really very painful to see him suffer.
 
hi catty,

i used to take sodium vaporate. for me, i dont feel drowsy or tired after taking the medicine. everything looks normal. but i believe all medication will have side effects, though we cant see it. my PD has advised me not to BF.

whenever after an attack, i will feel v tired and need to sleep through the whole day. cos i think the nerves system is all tensed up during the attack.

yah i agree, i agree it's v painful to see the babies suffer. till now, even if i have an attack, my mum will be v worried, cos mine normally will happened when i'm sleeping.
 
When i was pregnant, I ate lot of mutton and old people said cannot. The mutton soup stall uncle refused to sell me. Now I am wondering if the epilespy is related to mutton soup.

Anyone also like me?
 
hi catty,

personally, i dont think food plays a part. i dont/ very rarely take mutton yet i have epilespy.
 
Probably u hv close shop for this topic ... my Sym 4.5yrs old is a special child so fits are common for them. Sym taking Epilim Sodium Vaporate 15ml x 3/day. I dropped till 2x cos dont want her immune to drugs.

Attended a course on GD brain-injured. Were told seizures r due to lack of oxygen so masking was recommended but neuro at KK said don't believe it. Sym's 2nd fits was due to over-exhausted. Jerkings are common in her daily life. As long as no scary blue/purple face, trembles or non-crying, I can still manage.
 
Well, my daughter 3.5 yrs old has epilepsy and has just been diagnosed with the Lennox Gastaut Syndrome. It is a rare and severe form of epilepsy and is usually hard to control with medication. Currently she is taking Epilim and have just started on Nitrazepam yesterday.

As a parent, it is important that we find out as much as possible about epilepsy so that we are prepared and know what to expect. www.epilepsy.com is a good site for information. I will also recommend the book "Seizures and Epilepsy in Childhood" http://www.amazon.com/Seizures-Epilepsy-Childhood-Hopkins-Health/dp/0801870518/ref=sr_1_1/102-9106259-9790525?ie=UTF8&s=books&qid=1178677109&sr=1-1

We as parents went through different phases when we know that our kid has epilepsy. Initially, we will ask why and kind of in a denial mode. Slowy, we will accept it and have to make adjustment to our daily lives. In the process, we grow stronger and love our kid for who they are.

I think the point is never give up and get as much help from your family and friends as possible. Make time for yourself too, so that you will be recharged for the next battle. This is a good article to read: http://www.epilepsy.com/articles/ar_1172848192.html
 
Hi Mummies,

All mummies here please have courage and faith. My girl is fit-free for 2 months now. I am happy but still I don't feel safe to leave her alone even for a min. One cry or shout will make me jumps. I really hope epilepsy will be a history for her.

I really admire your courages. Don't worry, our children will grow out of it.

Happy Mother Day!!! : )
 
<font face="comic sans ms"> Hi Catty,

My girl recently was dignosed with epilepsy.. actually just last weekend.. She is 18mths now.. about same age as your girl.. maybe a few mths older.. May I know how much sodium vaporate is she taking now? My girl's neuro doc start her with 0.5ml for 1st 5days then up to 0.8ml for the next 5 days and 1ml for the next 5 days.. we going to see her neuro doc this coming thurs to review again.. her medication wrote sodium vaporate 200mg/5ml.. She seems to get tired more easily once started on the medication.. today is the 5th day she is on the medication..

Some history.. she had her first seizure when she was 13mths old.. that time it was with fever so her neuro doc treat is as fever related seizures.. then last sunday (4may) she had 2 episodes of seizures.. the seizure is abt 4hrs apart.. this time no fever.. at that time we were not in SG but we suppose to come back to SG on that day.. so once we reach SG we quickly send her to KKH..

Happy Mothers Day to all mummies!!!</font>
 
Hope nobody c stars coz I plucked some carnations via the above thread/my post.

San, I guess newbies starts from 0.5ml sodium val, then depending on how severe the seizure is, doc will increase according to patient's weight. KKH neuro, u seeing as a subsidised patient? Had any EEG to monitor brain activity?
 
<font face="comic sans ms"> Hi Strawberry,
hmm i'm not sure her seizure consider serious a not.. but her neuro doc did said will increase the dosage slowly and will have to monitor her liver function.. so this thurs going back to review loh.. need to take blood test.. ya we did EEG when she was hospitalised last week.. they even took her spinal cord fluid to take test.. after taking the fluid, she must lie flat cannot sit up.. but my girl is those type who won't lie still unless she is sleeping.. she was crying so hard when we refused to let her sit up.. heartpain to see her suffer loh...

Nope not seeing her KKH neuro doc as a subsidised patient loh..
</font>
 
San
KKH nurse tried to draw blood to take test (check liver etc) but blood vessels too fine for my 2yr old (2yrs ago) so kanna insert a big needle n blood was being squeezed from the back of her palm. Was wrapped in a blanket so couldn't move, she screamed n cry, I also cried.

Not subsided so can choose doc ... get their nero HOD! Desmond Chan?? forgot his name. I used to c the ex-hod now a visiting doc Dr Phuah HK .. not v good cos he now busy supervising junior MOs.

Fever related seizures means will go away v soon? U went A&E? she had high fever, fits or changed colour or ... ? I also panicked when Sym jerked non-stop + turned a bit purple
 
<font face="comic sans ms">Strawberry,
when she was admitted at kkh, I din get to see how they drew the blood and put the plug.. but did see them prepare blanket.. they dun allow us into the treatment room.. hear her cry so pathetic I also heartbreak cannot suffer for her..

She is seeing Dr CT Chong a senior neuro doc.. my PD referred us to her one.. She did came to look at her when she was admitted and explain things to us loh..

Her first fit I was not around.. was working.. nanny got a big scare quickly rush her down to the clinic downstairs.. nanny said she was very stiff and eyes rolling up loh.. tat time was with fever.. normally fever fits are not serious de.. only occurs when u have high fever..

but her 2nd and 3rd fit (happened on the same day) we was with her.. she suddenly goes soft like no bones like that then stiffen loh.. she din jerk nor turn purple.. her arms and legs are straight stiff.. her facial expression also stiff stiff like that.. call her no respond loh.. really had a big scare plus we not in SG somemore.. lucky the resort have a resort doctor if not we also duno how..</font>
 
Hi San,

Sorry for the late reply. My girl is taking 3 ml of SV twice a day.

How often she has fits? My girl at 1 time had almost every week but I think at that time, the medi she was taking was not suitable for her. It was carbomazipine. Her longest fit lasted 40 mins and that was very long.

Actually, I like Dr Phua. He knows what he is doing. He is very experience and in fact he has his own private client in Mount E but he's there in KK to help. He didn't say directly but I think he's telling us not too worry so much. Some kids have them everyday. As long as our girls are growing and developing well, we should not worry too much.

I am taking it easier now. I think it is about finding the right and amount of dose for my girl's case.

Also avoid tireness. In dec, we went to Europe and the jet lag hit her after we arrived. 3 hours after we touched down, she had fit and we rushed her to hospital. Then for 1 month vacation, we went to hospital for 4 times. Very tiring and stressful holiday. 1 thing lucky is that we have insurance for her otherwise I can't imagine all hosiptal bills we have to pay. 980 per day. Faint!
 
hi forumers,

I have epilepspy since i was 13 yrs old. I've been on medications since then. I am taking cabormazapine 5ml daily as per prescript by specialist to take for life. However, I've since stop taking regularly 10 years back. When I remember I'll take, if not I'll just skip. On average, I would say I take maybe 5 times per month instead of taking daily. I've a relapse once sometimes 3 years back.

As an epilepspy person for the past 23 yrs (now 36 yrs old) I would like to share my experience with all of you here.

In most cases, before seizure is about to come, I can sense some uncontrolable reaction from my hands or body. (eg. slight shaking) Once i felt it, I'll immediately take a deep breath and relax my body....repeat it a few times and it will not come again. So I personally believe that it can be controlled. Please do not panick when you sense that it is coming....if you panick, the likelihood of trigger is 80%. Always stay relax and take deep breath in and out and i can assure you that 99% that you will not triggered.

I am married with 2 kids....I am driving for the past 10 yrs. I live like a normal person. I do what normal people do....I play soccer and represent my unit in army, school and clubs...I swim, I do lots of physical stuffs that able body people did.

1 word of advice is to avoid late nights lack of sleep as chances of trigger is extremely high in such cases.

Last and not least, I hope that people with epilepspy do not feel as though that the world has collapse. Do not feel inferior or lack of something....Just live normally and always take good care of yourself...Know ur body well and live like a normal people.

***CAUTION: Do not drive if you do not know ur body well. (Chances of accident is extremely high becos you have control of your movement)

TKT511
 
<font face="comic sans ms"> Catty,
so far she only had fits 3 times so far.. 1st time was last yr dec and the 2nd and 3rd time was on 6may this yr.. 2 fits in one day.. she is also now on SV.. now slowly increasing dosage.. will ultimately stop at 1.5ml 3times a day.. so far she had been reacting well on the medication loh..
</font>
 
Hi mummies,

I am sad. My girl is in ICU now. Fitted this morning for 1h 30 mins. Longest record. I think it was triggered by the flu and fever she had. But this fit was really long. Now she is sedated so nurse asked me to go home and rest.

Aiya, never fit for 3 months I thought it was over. Who knows??? This time 1 h 30 mins and now in ICU. Titanic :_(
 
Dear mummies,

Feeling v devastated and discouraged. My bb was diagnosed with Infantile Spasm yesterday. He has been having jerking lately, at first we didn't think much but as it occurs each day, it becomes an alarming sign to us. We did EEG with him yesteray and Dr Phuah confirmed it. I was v upset, till now I still can't believed it's true. I read sites frantically and it mentioned lifelong medication, delay in speech, motor skills, social...in long run might even interfere on schooling, career etc...

I'm really disheartened. Can mummy out there who are in the same flight as me give me some sound advice.

I'm breaking down soon. Currently he is taking 500g of vigabatrin and if after 5 days still doesn't curb his seizure, his dosage will increase.
 
My girl's classmate diagnosed with infantile at 3mths. So hard to sleep. Child gets startled easily when she's in infant. took medication from 3mths till recently seizure free.

Mummy SAHM to give best care (forgo Accountant job), bring child for all sorts of therapies (all very expensive).

Now child turning 5 yrs, still in special sch. From a no hope (doc gave up hope for recovery - grow normally) till now, she could walk reasonably, understand simple instructions, say a few words like mama.

Mummy REALLY DID A LOT to c improvement!
Ask doc what recommendations. If need to go to special sch dont delay. Early intervention means early cure.

I'm more active in Being Special
http://www.singaporemotherhood.com/forumboard/messages/5/789053.html?1182943421
 
Hi LuvMum,

Is your baby in a better condition since on medication? Bringing the seizure in control will help. I hope the best for your child.
 
Hi, i was searching for threads on epilepsy and saw this. My son was diagnosed with epilepsy a few days ago. Had his first fit 3 nights ago, and then last night. He has since recovered but my question is how do you monitor your child at night when fits are more likely to come? I can only monitor to a certain number of hours, right? Can't be not sleeping the whole night. Anyone has experience to share? Thanks so much. I would really appreciate it cos my son will be discharged from NUH tomorrow. My son's doc is Dr. Ong from NUH.

Was really really frightened out of my wits when it happened and I didn't know what happened to my son. Really couldn't believe it was fits but now coming to terms with it. When you see a fit, do you medicate and then bring your child to A&amp;E? Do you drive there or call ambulance? And what do you do with your other children, if any? I have been troubling my neighbour the last 2 times since we don't have a car, but how in the long term? Get a car?

Thanks so much.
 
Hi ikkoh,

Dr Ong is also my son's dr since 2004. For my son, normally his fits will come within 30 mins after he fell asleep or within 30 min before he woke up. I believe Dr Ong will let you know what to do when the fit comes. Dont be too worry.
 
Hi All,
My daughter was admitted to hospital when she was only 1.5 months n hospitalise for a month and dianigsis with infantile seizure(Epilepsy) after she gone thru all check up(Eg.EEG,MRI...).Till this Monday(after 2 months fits free), she admitted to KKH again due to fits attacting her. We r really headrtbreak and helpless..really worry that her development is affected since she having it when she is 1.5 months. She is taking 1.8mlx3 times epilim and Phenobarbeton x 2 per days...Any advice for me? Or, pls send email to me at: [email protected]. Thanks.
 
Hi I had epileptic when I was 18. Went to doctor and always get fit once a year. But now since I went to NUH to see Prof there, so far no fit for me.

I just take dilantin 200 mg + 60 mg so total 260mg/day. Before I took about 300 mg, but because 1 year no fit, the Prof try to down the doze.
 
My sis has epilepsy since she's a child and will still have episodes once or twice a year now if she stops or reduces the dose of her medication(she's 36 this year). We also notice that it can be triggered by fatigue and extreme emotional stress for her, so we make sure she rests well.
 
Hi! My son went down the slide in the playground and collapsed in a heap on the 16th of Jan. I rushed him to KKH in ambulance. They observed him for a couple of hours and let him go. Then on 2nd Feb he collapsed at home- this time hands and feet twitching and saliva dripping from mouth. Back to KKH. Admitted for 3 days and EEG done. Today we did the MRI, Thursday we will know the result. Dr. C T Choong.
It just lasted a couple of minutes and now I'm mentally prepared - But the first time (hb travelling and not in SG) was really scary and heartbreaking even tho I've lived with it for 16 years. Will post with more updates. They gave GA for the MRI he was hysterical -laughing and giggling first then screaming and furious later. And very hungry as he needed to be on empty stomach. Heartbreaking
sad.gif

I had my first seizure when 20. Led a normal life with daily medication.. carbamazepine. have 2 children. Daughter is 12 and son is 6. Since it was adult onset and since they see some abnormality in mri of brain I was told it would not be hereditary. I feel very miserable when I realise that it is becoz of me my son is suffering. Like I passed it on. Must be brave and help him through this... Glad I found this forum to share and thank you for sharing your experiences. Its helping me deal with this pain.
 
Hi Lakshmy,

Dont worry and dont blame yourself. All is fated and we all must be strong.Our child need us. I am posted this message in KKH now.My daughter was admitted 3 days ago because having high fever and have 2 times fits(abt 20 mins each time).Fever didnt stop for 6 days and test showing that my daughther has lung infection and virus attack.This will caused fever and flu.She has very bad cough and phlegm untill need to use oxygen to support.Since last admission( 3 months ago), we brought my daughter to chinese "tui na".The 医师help my baby to安神 and we did see a lot of improvement.My baby is 10+months now and start to flip and roll up her head.Start to be active and talkative. I think the tui na did help her.We did put effort to bring her 3 times per week.If anyone in the forum need the contact, pls email me at : [email protected]. The clinic allocated at Bkt Merah Central.

I believe that everything will be fine if we have positive mindset.No choice but have to accept!!

Cheer, god will bless all of us!!
 
Hi AnMom!
Thanks for your kind words and reassurance.
My son on medication and stabilised. I would like to share what I've learnt from my experiences with any moms out there who want to talk about it or know more. Lend an ear and if possible a helping hand.
You can pm me or ask me to pm you.
Take care and god bless!
 
Hi mummies, I was checking out the web looking for helps in epilepsy. My girl was diagnosed with epilepsy when she was 3yrs old. However her seizures are not those that collapse with stiff limbs. Her kind of fits is like some 'stiffness' or twitching on her left face whereby she will try to grabbing onto something or like grasping for breathe. However she don't seem to be aware of such during the seizures and would at times smile at you or throw temper after the seizures.

She had gone thru CT scan and found 2 tiny calcium deposits in her head. I was told this could be the cause of it, but I'm not sure if the fits could be caused by her fall on her forehead hitting against the toilet bowl when she was 2.5yrs old.

She is on medication since then but had been increasing and changing for the past 3 yrs till now. Medication had change few times from liquid to tablets. But the medication don't seem to control it and her fits is increasing its frequency and is happening everyday, few times each day in her middle of sleep and before she wakes up or even during the day, and each last abt 1min.

I am getting worry for her medication don't seem to help her at all and each visit the doctor will just say increase... nothing else. Or at times he will just read out fm a book to tell you what 'side effects' or what is the max the child can take for that medication. Makes me so fustrated and intend to seek another doc's opinion. However, mine is under subsidised in KKH, doubt I will be able to seek othr docs in KKH or might not be that nice for the docs to 'comment' on another. But I'm really at wits where to seek help.
 
Hi Juuzbe, my son's doctor, A/Prof Ong Hian Tat is really experienced in the epilepsy field. He is at NUH. If you go through A&amp;E and is a singaporean, your fees will be subsidised but you cannot choose a doctor. If you can go to polyclinic and get a referral letter, then make an appointment with Clinic A, then you can get it even cheaper, but cannot choose doctor too. However, the neuro pd team at NUH is pretty strong. They see epileptic kids all the time. The senior ones are Prof Low Poh Sim, A/Prof Ong Hian Tat, A/Prof Stacey Tay. There are 2 fellows from Phillippines: Dr Armi and Dr Cecilia. (All these quoted to the best of my knowledge).

However, if the case is serious, the more senior doctors will be assigned. My son was assigned to A/Prof Ong initially, then Dr Armi took over. However, later when he developed status epilepticus (an medical emergency), A/Prof Ong took over. Sometimes a few doctors will see my son. You should seek a second opinion if you are worried. Also, do ask lots of questions. A/Prof Ong is really a very good teacher. He will need the test results done before at other hospitals.

Take heart. I know how it feels.
 
Hi all,

My son aged 9+ has refractory epilepsy since aged 4, has daily seizures which are hard to control with medication. He is also seeing Dr Ong at NUH. He is struggling in a mainstream school as he has behavioural, learning &amp; social difficulties.

Have tried all medicine available here, alternative treatments &amp; not working. Anyone tried ketogenic diet or Vagus nerve stimulation?
 
Hi Li San,

I am sorry to learn your son's seizures are difficult to control. Why not try Ketogenic diet? No harm trying right? I saw an article in the web that the girl got no more seizures just by eating a lot of fatty fish like tuna and salmon. Initially her seizures were also difficult to control with drugs - like nothing seems to work. Why not try this also?

Alternatively, I know of someone whose daughter's seizures got well-controlled by TCM. You scroll upwards and PM "Pustefix". He will be able to tell you. Her hard to control Lennox-Gaustaut Syndrome with many breakthrough seizures is controlled with a parallel use of TCM with western drugs. Do check with him.

Also, since stress and lack of sleep triggers seizures, make sure he has less stress and lots of sleep. Teachers in my son's school are very understanding. If my son cannot finish the classwork, he gets to take them home as homework. As for homework, he hands them up when he has finished them. Bcos of this arrangement, he is able to slowly recover from his seizures. Now we still go home after recess (has been like this since Feb this year when we went back to school). We will slowly get him to do the entire session in school but a little apprehensive bcos of H1N1.

Also, we limit the use of TV cos TV programmes can stimulate the brain. For a long time until 2 days ago, we did not have a TV at home. Just a tiny 7" DVD player that the kids will watch on some occasions. No computer gaming at all. (My son's seizures is focal occipital. Occipital governs the eyes.) We are also very strict on diet ie no stimulants such as caffeine. This is the TCM practice. So chocolate is out, so is milo, chocolate cake, tea like green tea, coffee or coffee cake, wine like those they add into dipping sauces, etc. Only can eat white chocolate. We try our best to give him nutritious food and also some supplements to boost his health. Being sick will lower the seizure threshold so we watch his health very closely.

Take care.
 
Hi Lay Khoon,

Thanks so much for sharing. Will PM Pustefix and you, hope you dun mind.

Have checked with Dr Ong &amp; Nurse Tracy, so far no school going kids here are successful in sticking to the ketogenic diet which is strict and you have to weigh the food taken. Read in the internet about Atkins diet for seizures &amp; thinking whether he can try cos there is no more medicine for him to try.

Thanks again.
 
Hi Li san,

I guess for school going kids, being on ketogenic diet is tough. You may need someone to constantly remind him cos even a biscuit can throw the diet off. I checked with Tracy before. She said it is difficult but can try. To me, anything that has a prospect of reducing seizures is worth a try.
 
Hi!
Following the ketogenic diet strictly can be very difficult. for the caregivers as well as the patient.
TCM, Ayurveda and homeopathy offer some respite to those who havent been able to get any progress from allopathy. However results are not instantaneous though they are said to be long lasting.
The chart in this website helped me to eliminate some and find out more about some.
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments
 
Hi,

Thanks for sharing the website, "lookin4change". I find it useful.

Anyone tried the Atkins diet cos it is not so strict &amp; easier compared to ketogenic (I think)?
 
Hi Li San,

Pustefix replied already. Pls check your email. Hope this can open up another treatment possibility for your son. Take care.
 



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