Any mummies whose child has Epilepsy ?
- Thread starter blueshell
- Start date
Hi Von,
My girl also has epilepsy and her development is affected. She is going 2 yrs old but can't even sit or turn herself yet.
I will feel it will be good if KKH refers her for Early Intervention programme cos the early she starts the early she can learn.
My girl has also been refered to the programme but is on the waiting list. I heard it will take months to get into the school.
At the meantime, you can bring her to physio first. KKH should have also.
My girl also has epilepsy and her development is affected. She is going 2 yrs old but can't even sit or turn herself yet.
I will feel it will be good if KKH refers her for Early Intervention programme cos the early she starts the early she can learn.
My girl has also been refered to the programme but is on the waiting list. I heard it will take months to get into the school.
At the meantime, you can bring her to physio first. KKH should have also.
ningningwong
New Member
Hi Von
Strongly agreed with mylstv suggestion, you may consider bring her to physio.
My son has epilepsy too and slow in his development in term of walking, talking.
He only managed to walk when he reached 19mth after a few physio session (@kkh).
Now he's abt 33mth old..can run & jump but still not very good in expressing himself well.
Try to give more time to her and encourage her. I'm sure she will know once she reaches her milestone.
Strongly agreed with mylstv suggestion, you may consider bring her to physio.
My son has epilepsy too and slow in his development in term of walking, talking.
He only managed to walk when he reached 19mth after a few physio session (@kkh).
Now he's abt 33mth old..can run & jump but still not very good in expressing himself well.
Try to give more time to her and encourage her. I'm sure she will know once she reaches her milestone.
thanks mlystv and janice...
I have go ahead to put on waiting list for EIPIC.. hope it can speed up as i called up the center, they told me that there will be quite a number of intake in jan as students graduated from the classes.
my girl now 16 months, still not able to crawl and walk...
I have been going to PT/OT and ST at KKH for the past 6mths.. i do see improvement but not much.. i guess i have not do enough home practice on her as i'm a full time working mom.
I have go ahead to put on waiting list for EIPIC.. hope it can speed up as i called up the center, they told me that there will be quite a number of intake in jan as students graduated from the classes.
my girl now 16 months, still not able to crawl and walk...
I have been going to PT/OT and ST at KKH for the past 6mths.. i do see improvement but not much.. i guess i have not do enough home practice on her as i'm a full time working mom.
Wee Yee Yee, i read the papers few days ago where a little girl was sucessfully treated using stem cell treatment.. but she is not having epilepsy, cant remember the illness she had, but she had uncontrollable seizure.
I'm interested on to find out more too.. anyone has any news.. please share...
Will check with my dr in change in the next appt.
I'm interested on to find out more too.. anyone has any news.. please share...
Will check with my dr in change in the next appt.
Jeannie/Lisan,
you have place your son in CCC? Is his development affected?? can he walk and express himself before going to CCC??
I wanted to put my girl to CCC too.. Thinking to let her have more intraction with other kids and hopefully it can help her improving. But i went to a few CC, they rejected my application.. Some told me that they dont want to take up the responsibity in giving her med as their teachers are very busy.. and some just tell me that she is not really for school..
you have place your son in CCC? Is his development affected?? can he walk and express himself before going to CCC??
I wanted to put my girl to CCC too.. Thinking to let her have more intraction with other kids and hopefully it can help her improving. But i went to a few CC, they rejected my application.. Some told me that they dont want to take up the responsibity in giving her med as their teachers are very busy.. and some just tell me that she is not really for school..
Hi Von,
My son started to have seizures at age 4. His development before age 4 is normal. His seziures are daily. The seizures and the medication have affected his gross & fine skills, learning, cognitive & behaviour.
For stem cell treatment, I checked with one of the Doctors from a private cord blood bank here early this year and he said research is still ongoing. Both local cord blood bank websites do not list epilepsy as one of the treatable diseases. The Doc also told me there were cases in China which unfortunately seizures actually increase after stem cells treatment.
My son started to have seizures at age 4. His development before age 4 is normal. His seziures are daily. The seizures and the medication have affected his gross & fine skills, learning, cognitive & behaviour.
For stem cell treatment, I checked with one of the Doctors from a private cord blood bank here early this year and he said research is still ongoing. Both local cord blood bank websites do not list epilepsy as one of the treatable diseases. The Doc also told me there were cases in China which unfortunately seizures actually increase after stem cells treatment.
regarding about the stem cell treatment, i checked with my doc in kkh yesterday, he says it is not a solution at this point of time. and he do have patients from oversea who had use steam cell for epilepsy but unfortunately the treatment failed hence they came to singapore treatment. And cells that transplanted in, seems had grow into something else...
anxiousmom
New Member
Hi,
My girl (turning 4 yrs) was diagnosed with myoconic seizure (sudden jerks of hands) last Nov. Though each seizure is less than a sec, she will have about 20 seizures everyday. After taking Sodium Valporate, it gradually reduced to 5. But it has gone back to 20 and also has tonic seizures (stiffness of whole body) for about 4 sec about 3 times a day. She is now on SV, clobazam and topiramate (this medication was only introduced last week). Just a few days ago, it seems like her seizures is also affecting her bladder and she has incontinence now.
Is there anyone who has come across such cases? I just brought her to a chinese physician for "Tui Na" hoping that her condition could be improved. Any idea will this help?
It seems like the medication is also not helping her condition now. Has anyone taken the above medications before?
Thank you.
My girl (turning 4 yrs) was diagnosed with myoconic seizure (sudden jerks of hands) last Nov. Though each seizure is less than a sec, she will have about 20 seizures everyday. After taking Sodium Valporate, it gradually reduced to 5. But it has gone back to 20 and also has tonic seizures (stiffness of whole body) for about 4 sec about 3 times a day. She is now on SV, clobazam and topiramate (this medication was only introduced last week). Just a few days ago, it seems like her seizures is also affecting her bladder and she has incontinence now.
Is there anyone who has come across such cases? I just brought her to a chinese physician for "Tui Na" hoping that her condition could be improved. Any idea will this help?
It seems like the medication is also not helping her condition now. Has anyone taken the above medications before?
Thank you.
AnMom3003, may I know if your gal is taking eastern cum western medications together? My son is 3yrs+ currently and is ongoing increasing dosage on sodium volproate due to his age and weight. This medication does affect the liver esp among the young children.
Same as AnxiousMom, does tui na helps to improve the immune system or tackling the seizure too?
Thank you.
Same as AnxiousMom, does tui na helps to improve the immune system or tackling the seizure too?
Thank you.
anxiousmom
New Member
Hi Chooz,
I just started the tui na last sat. She is currently going there everyday. So, there cant tell at the moment. I am just trying everything that will help. Hopefully....
How is your child's development? I have noticed my girl is slower in her development as compared to others her age. Am pretty worried in this aspect. She seems to behave more like a 2 yr old child. Any idea how this can be improved?
I just started the tui na last sat. She is currently going there everyday. So, there cant tell at the moment. I am just trying everything that will help. Hopefully....
How is your child's development? I have noticed my girl is slower in her development as compared to others her age. Am pretty worried in this aspect. She seems to behave more like a 2 yr old child. Any idea how this can be improved?
My son tried Tui na at Yu Guo (Kembangan) when he was around aged 5/6, abt 2-3 times a week for around 6 mths. He has also tried acupuncture but not at the same TCM. For my son, both did not help him. I think every epilepsy patient is different and may respond differently to each treatment or western med.
Hi AnxiousMom
My boy is a year end baby so he is already behind his peers from the start. Ever since introducing sodium volproate, I am very worried about his development.
I guess you have to guide your gal whenever you have the time to do so (to have an easier transition at primary school level). I am trying this out on-off right now. Hopefully it helps.
Hi Li San,
Thanks for letting me know that these methods may not worked. I was wondering if consuming Tcm cum western medications do work hand in hand. Does anyone trying this out yet?
My boy is a year end baby so he is already behind his peers from the start. Ever since introducing sodium volproate, I am very worried about his development.
I guess you have to guide your gal whenever you have the time to do so (to have an easier transition at primary school level). I am trying this out on-off right now. Hopefully it helps.
Hi Li San,
Thanks for letting me know that these methods may not worked. I was wondering if consuming Tcm cum western medications do work hand in hand. Does anyone trying this out yet?
I am trying TCM tui na and western medication. My daughther is taking Epilim 2 ml 3x per day and phenobarte 1 capsule x 2 times per day.
I think become a epilepsy child, definately the development will affected..no matter how we tried on TCM / Western medication. What we can do is reduce their fit or with 0 fits. Then, they can start to learn on independence.
My daughther tried tui na in Bkt Merah Central, the yi shi is quite patient and no harm to try.
Actually I am just wondering, why kids can still dianogsis with epilepsy although they have develop till 4-5 years old. I tot they have grow well, etc. I am just wondering and parents must be very upset with the kids. For me, I have accepted the fact. My daughther dianogsis with epilepsy since she is 1.5 months old...We have accepted it without any complaint!!
I think become a epilepsy child, definately the development will affected..no matter how we tried on TCM / Western medication. What we can do is reduce their fit or with 0 fits. Then, they can start to learn on independence.
My daughther tried tui na in Bkt Merah Central, the yi shi is quite patient and no harm to try.
Actually I am just wondering, why kids can still dianogsis with epilepsy although they have develop till 4-5 years old. I tot they have grow well, etc. I am just wondering and parents must be very upset with the kids. For me, I have accepted the fact. My daughther dianogsis with epilepsy since she is 1.5 months old...We have accepted it without any complaint!!
anxiousmom
New Member
HI Chooz,
I dun think it is advisable to consume Chinese Med with western med. The TCM that I went to did not prescribe medicine as my gal is taking western medicine.
My girl is having tui na everyday. I have begun to see some improvement (the frequency is reduced though she's still having fits everyday). I guess it helps to a certain extent.
I dun think it is advisable to consume Chinese Med with western med. The TCM that I went to did not prescribe medicine as my gal is taking western medicine.
My girl is having tui na everyday. I have begun to see some improvement (the frequency is reduced though she's still having fits everyday). I guess it helps to a certain extent.
I don't know what I can do to help my dear son. Because of this condition, all my relatives shun us and once the confinement lady is gone, I'm going to face my newborn baby challenge.
AnxiousMom - Recently I went to a TCM clinic. The doctor did prescribe herbs to us despite informing her about sodium volproate consumption. As per her instruction, so long there is a gap of 2hrs onwards between both medications will do.
Western medications only tackling the surfacing problem whereas eastern medications may also tackling the root of the source but this takes a long time to serve its purpose though.
Is tui na an expensive bill? If you don't mind, can share with me the $$ as well as other details pls?
AnMom3003 - The western doctor told us that young children taking sodium volproate will also affect the liver organ hence I'm trying out the TCM herbs which does protect the latter too.
I suspect that my boy got fits due to his teething coz his fits' peak period also coincide with his severe teething sensation then. I also changed his school to playgroup as the doctor mentioned that viral infection is also a common triggering factor.
AnxiousMom - Recently I went to a TCM clinic. The doctor did prescribe herbs to us despite informing her about sodium volproate consumption. As per her instruction, so long there is a gap of 2hrs onwards between both medications will do.
Western medications only tackling the surfacing problem whereas eastern medications may also tackling the root of the source but this takes a long time to serve its purpose though.
Is tui na an expensive bill? If you don't mind, can share with me the $$ as well as other details pls?
AnMom3003 - The western doctor told us that young children taking sodium volproate will also affect the liver organ hence I'm trying out the TCM herbs which does protect the latter too.
I suspect that my boy got fits due to his teething coz his fits' peak period also coincide with his severe teething sensation then. I also changed his school to playgroup as the doctor mentioned that viral infection is also a common triggering factor.
anxiousmom
New Member
Hi Chooz,
I'm sorry to hear that your relative had all shun you becos of this. THis goes to show how inadequate the awareness of such condition is to them. You must stay strong for your boy.
As for the tui na, my girl requires 45 min session due to the severity. It cost $30 every session and we need to send her everyday for about 10 days and thereafter once every few days when her condition improves. The effectiveness I think varies from pple to pple. I saw in an earlier post that tui na does not help. But I guess no harm to give it a try.
The physician also advises not to bathe her in the morning (especially her head), not to feed her too much and to keep her as calm as possible. Ever since we stop her morning showers, her morning attacks has been kept at bay most of the time.
I'm sorry to hear that your relative had all shun you becos of this. THis goes to show how inadequate the awareness of such condition is to them. You must stay strong for your boy.
As for the tui na, my girl requires 45 min session due to the severity. It cost $30 every session and we need to send her everyday for about 10 days and thereafter once every few days when her condition improves. The effectiveness I think varies from pple to pple. I saw in an earlier post that tui na does not help. But I guess no harm to give it a try.
The physician also advises not to bathe her in the morning (especially her head), not to feed her too much and to keep her as calm as possible. Ever since we stop her morning showers, her morning attacks has been kept at bay most of the time.
Hi AnxiousMom
May I know why is your physician advised against bathing in the morning? My boy baths every late morning and goes for his nap which I hope will last at least 2hrs. He is getting more hyperactive these days, wondering if this is one of the side effects of sodium volproate. My physician just advised us to let him eat so long he wants. On my part, I will try to calm him down whenever he is overstimulated.
We are indeed anxious mothers, willing to let our dear ones trying out one method or another just to see if their health do suit it or not. This cycle is very new to me and I'm still learning how to cope & accept the facts.
May I know why is your physician advised against bathing in the morning? My boy baths every late morning and goes for his nap which I hope will last at least 2hrs. He is getting more hyperactive these days, wondering if this is one of the side effects of sodium volproate. My physician just advised us to let him eat so long he wants. On my part, I will try to calm him down whenever he is overstimulated.
We are indeed anxious mothers, willing to let our dear ones trying out one method or another just to see if their health do suit it or not. This cycle is very new to me and I'm still learning how to cope & accept the facts.
anxiousmom
New Member
Hi Chooz,
The Chinese physician mention that we should avoid bathing early in the morning so that she will not catch a cold as that could trigger an attack. Instead, we just use wet towel to wipe her clean. As for food consumption, the physician mention that bloatedness could also trigger attack. Guess she say this is also becos my girl has indigestion problem.
I guess all mothers will want the best for their child. I have since learnt to cherish every little improvement, be it health or learning-wise. And I will still continue to try whatever possible solution there is available so long as it is not invasive.
The Chinese physician mention that we should avoid bathing early in the morning so that she will not catch a cold as that could trigger an attack. Instead, we just use wet towel to wipe her clean. As for food consumption, the physician mention that bloatedness could also trigger attack. Guess she say this is also becos my girl has indigestion problem.
I guess all mothers will want the best for their child. I have since learnt to cherish every little improvement, be it health or learning-wise. And I will still continue to try whatever possible solution there is available so long as it is not invasive.
hello mummies,
care to share with you the exprience of your child epilepsy doctor. can PM me or drop me an email [email protected]
the reason i'm asking is that my girl had her first seizure since 7 mths old, and was treated for about a year plus. but i didnt see any improvement in her fits and deployment. hence would like to approach another doctor for second opinion.
Please share. Thanks.
care to share with you the exprience of your child epilepsy doctor. can PM me or drop me an email [email protected]
the reason i'm asking is that my girl had her first seizure since 7 mths old, and was treated for about a year plus. but i didnt see any improvement in her fits and deployment. hence would like to approach another doctor for second opinion.
Please share. Thanks.
Warrior angel - how about sharing your solution here at the forum?
von - you mean your DD is still having fits or? Got other triggering factors like high fever, infection???
AnxiousMom - sorry for showing up so late, am busy handling my newborn's patterns, how's your gal doing now? For the past months, I am letting my boy take western epilim & eastern TCM. I wanted to opt for tcm instead of western medication but the physician wants us to remain as it is at least for this year to stabilise the condition. I believed that tcm will likely able to counteract some ill effects from epilim consumption yet "tiao" my boy's body system, not sure if this is the correct path....
These days, I still weep non stop, fearing that his fits episodes will start all over again... long time have not sleep well. It is very scary.
von - you mean your DD is still having fits or? Got other triggering factors like high fever, infection???
AnxiousMom - sorry for showing up so late, am busy handling my newborn's patterns, how's your gal doing now? For the past months, I am letting my boy take western epilim & eastern TCM. I wanted to opt for tcm instead of western medication but the physician wants us to remain as it is at least for this year to stabilise the condition. I believed that tcm will likely able to counteract some ill effects from epilim consumption yet "tiao" my boy's body system, not sure if this is the correct path....
These days, I still weep non stop, fearing that his fits episodes will start all over again... long time have not sleep well. It is very scary.
lkkoh
Member
Hi Choo,
You must take good care of yourself. Looks like your son's seizures are well controlled already. Don't have to be paranoid. Weeping non stop is a sign of depression. You need to see a doctor. I am really quite worried for you. Just like the last time I told you, you need to sleep well cos lack of sleep is a trigger for seizures.
Many children outgrow childhood epilepsy. And they function well in school taking epilim. You are doing as well as you could now. Smile and take things easier. Write more in this thread to vent it out. You will feel better. All of us understand how it is like to battle epilepsy.
You must take good care of yourself. Looks like your son's seizures are well controlled already. Don't have to be paranoid. Weeping non stop is a sign of depression. You need to see a doctor. I am really quite worried for you. Just like the last time I told you, you need to sleep well cos lack of sleep is a trigger for seizures.
Many children outgrow childhood epilepsy. And they function well in school taking epilim. You are doing as well as you could now. Smile and take things easier. Write more in this thread to vent it out. You will feel better. All of us understand how it is like to battle epilepsy.
Koh Lay Koon, I can't help it! Suddenly it just came & break up my son's health. Everyday there is always a fear inside of me that he may have fits again. I know time will not wait for us & no matter what we must go forward but saying is easier than done. I must keep on trying until a reasonable period before I can really feel secure.
May I know anyone has send your child to childcare centre? I'm thinking of giving this a try but really afraid that fits may happen all over again... Pls share your experience...
May I know anyone has send your child to childcare centre? I'm thinking of giving this a try but really afraid that fits may happen all over again... Pls share your experience...
lkkoh
Member
Hi Chooz,
I understand how you feel cos my son was in critical condition 2 years ago. He was in a much more critical condition compared to your son, staying 1 month in ICU and 2 months in the general ward. I experience what you have felt and much more. There was a risk of him leaving anytime then. (His condition was a medical emergency known as status epilepticus, with 7-8 seizures a day, without recovery in between.)
During his first seizure, I was really panicky. I did not know what to do, could not find my wallet, and then my keys. After finding my keys, I could not remmeber where I put my wallet. I was that bad then.
Then came his second and third and more seizures to come. I cried goodness knows how many times. I could not stop my tears when I talked to my friend about his condition. I teared when writing to the forum, I teared just thinking about him, I teared when I saw other kids healthy and playing. HOWEVER, I thought of how I could help him. I decided that in order for me to help me, I must be strong. I cannot keep crying or I will really hai4 le4 ta1. It was then I picked myself up, went to ICU every morning to listen to the doctor's debrief, be with him and do massages for him, tell the nurse to suck out his phlegm, monitor his vital stats and whether there were any changes with his behaviour etc. I wrote everything down in a notebook. I also took my meals. I would eat every meal so I could have the energy to take care of him.
And slowly he got better. He needed lots of physiotherapy cos he was not able to sit up, stand up or walk. He was also not able to lift his head up after lying down in bed for 1 month. We went through this very difficult time with my son and now he has recovered well. He was away from school for a total of 8 months.
My friends have commented that I am happier than before. I guess I count my blessings every day. Being alive and healthy and to be able to stay together as a family is really a blessing, even though he is still on epilim. Really must kan4 de kai1 otherwise I will really be so very unhappy and ask why is it him who has got this illness, etc, or why is my life so hard...
Don;t worry. Worrying will not get you anywhere. Think of what you worry and how you can help. Eg. if you worry about seizure, then how can you help him when the seizure arise. You do first aid for seizure and maybe send him to the hospital. You try to improve his health so that seizures are less likely to occur - which you have already done. Life is full of uncertainty. Nobody knows what is going to happen next. Be there for your son. That is important and you have done that too.
I understand how you feel cos my son was in critical condition 2 years ago. He was in a much more critical condition compared to your son, staying 1 month in ICU and 2 months in the general ward. I experience what you have felt and much more. There was a risk of him leaving anytime then. (His condition was a medical emergency known as status epilepticus, with 7-8 seizures a day, without recovery in between.)
During his first seizure, I was really panicky. I did not know what to do, could not find my wallet, and then my keys. After finding my keys, I could not remmeber where I put my wallet. I was that bad then.
Then came his second and third and more seizures to come. I cried goodness knows how many times. I could not stop my tears when I talked to my friend about his condition. I teared when writing to the forum, I teared just thinking about him, I teared when I saw other kids healthy and playing. HOWEVER, I thought of how I could help him. I decided that in order for me to help me, I must be strong. I cannot keep crying or I will really hai4 le4 ta1. It was then I picked myself up, went to ICU every morning to listen to the doctor's debrief, be with him and do massages for him, tell the nurse to suck out his phlegm, monitor his vital stats and whether there were any changes with his behaviour etc. I wrote everything down in a notebook. I also took my meals. I would eat every meal so I could have the energy to take care of him.
And slowly he got better. He needed lots of physiotherapy cos he was not able to sit up, stand up or walk. He was also not able to lift his head up after lying down in bed for 1 month. We went through this very difficult time with my son and now he has recovered well. He was away from school for a total of 8 months.
My friends have commented that I am happier than before. I guess I count my blessings every day. Being alive and healthy and to be able to stay together as a family is really a blessing, even though he is still on epilim. Really must kan4 de kai1 otherwise I will really be so very unhappy and ask why is it him who has got this illness, etc, or why is my life so hard...
Don;t worry. Worrying will not get you anywhere. Think of what you worry and how you can help. Eg. if you worry about seizure, then how can you help him when the seizure arise. You do first aid for seizure and maybe send him to the hospital. You try to improve his health so that seizures are less likely to occur - which you have already done. Life is full of uncertainty. Nobody knows what is going to happen next. Be there for your son. That is important and you have done that too.
Dear Koh,
I'm unable to let go as the incidents are stil lividly "alive" in my mind till date. The flash images simply pop out esp when I'm washing the dishes or at the bathroom. When there is no helpers around to rely on, I just tell myself to keep on trying even though the path has no ans for me. None of my relatives can understand what I am going through & I cannot blame them either.
May I know if any parents send their children to childcare centres even though they have fits? Pls share your experience with me...
I'm unable to let go as the incidents are stil lividly "alive" in my mind till date. The flash images simply pop out esp when I'm washing the dishes or at the bathroom. When there is no helpers around to rely on, I just tell myself to keep on trying even though the path has no ans for me. None of my relatives can understand what I am going through & I cannot blame them either.
May I know if any parents send their children to childcare centres even though they have fits? Pls share your experience with me...
Hi Warrior_angel,
Tell you something absurd: I resort to fengshui. Firstly I got the master to help me to redesign my house just to "an" the health position for all of us, followed by my boy's lacking element, meaning what are the food suitable to let him eat. I know this is crazy but to me, anything is worth trying out. Till date I do not have the money to redo everything but at least some important adjustments had been done. No matter what, intake of food must be in moderation except slightly higher consumption for those highlighted. This is up to individual's belief.
Tell you something absurd: I resort to fengshui. Firstly I got the master to help me to redesign my house just to "an" the health position for all of us, followed by my boy's lacking element, meaning what are the food suitable to let him eat. I know this is crazy but to me, anything is worth trying out. Till date I do not have the money to redo everything but at least some important adjustments had been done. No matter what, intake of food must be in moderation except slightly higher consumption for those highlighted. This is up to individual's belief.
Hi Mummies,
I have just joined this motherhood forum. My son was diagnosed with seizure and infantile spasm at the 4th month after birth. He was born premature at 33 weeks. No root cause of his seizure was found. Really depressing as we have tried all means but he still has the attacks. He was free from his infantile spasm until we took off his Nitrados due to too much phlegm. He seems to have his infantile spasm attacks back again. :-(
Really very depressing indeed.. esp when you see other babies laughing and playing....
Anyone who can help?
I have just joined this motherhood forum. My son was diagnosed with seizure and infantile spasm at the 4th month after birth. He was born premature at 33 weeks. No root cause of his seizure was found. Really depressing as we have tried all means but he still has the attacks. He was free from his infantile spasm until we took off his Nitrados due to too much phlegm. He seems to have his infantile spasm attacks back again. :-(
Really very depressing indeed.. esp when you see other babies laughing and playing....
Anyone who can help?
Hi Warrior angel,
My son has started his TCM and tuina only abt 2 months ago. I wouldn't say that he has lots of improvement but the TCM powder has helped to reduce much of his phelgm caused by the seizure medicine that he is taking. I believe this treatment will last for some time until he recovers.
How can I contact you to understand more abt your sponsorship? I wouldn't mind giving everything a try as long as there is a pint of hope in helping my son to recover.
My son has started his TCM and tuina only abt 2 months ago. I wouldn't say that he has lots of improvement but the TCM powder has helped to reduce much of his phelgm caused by the seizure medicine that he is taking. I believe this treatment will last for some time until he recovers.
How can I contact you to understand more abt your sponsorship? I wouldn't mind giving everything a try as long as there is a pint of hope in helping my son to recover.
lookin4change
New Member
Hi moms!
Epilim - didnt work - caused my boy to throw up and have absence seizures.
Now we gradually tapered it down n stop it completely while introducing Keppra. It is 10 times more ex than epilim but seems to suit my boy. Have any of you had silmilar experience with epilim?
Epilim - didnt work - caused my boy to throw up and have absence seizures.
Now we gradually tapered it down n stop it completely while introducing Keppra. It is 10 times more ex than epilim but seems to suit my boy. Have any of you had silmilar experience with epilim?
lkkoh
Member
Hi lookin4change,
Not all meds are suitable for everyone! Some meds are more suitable some not. So for your son, epilim is not the one for him. Maybe keppra is.
For my son, carbamazepine, the base med for partial seizures, is not suitable. The doc had to look for other suitable meds for him.
My friend's girl was started on epilim due to her absence seizures. She started putting on weight, like 2 kg in 3 weeks. Very obvious side effect. She kept on wanting to eat. So the doc switched her to another med. Then she went back to her original appetite. So in her case, although epilim is able to control her seizures, the side effects made it not suitable. Can't remember what her new med is.
Hope this helps.
Not all meds are suitable for everyone! Some meds are more suitable some not. So for your son, epilim is not the one for him. Maybe keppra is.
For my son, carbamazepine, the base med for partial seizures, is not suitable. The doc had to look for other suitable meds for him.
My friend's girl was started on epilim due to her absence seizures. She started putting on weight, like 2 kg in 3 weeks. Very obvious side effect. She kept on wanting to eat. So the doc switched her to another med. Then she went back to her original appetite. So in her case, although epilim is able to control her seizures, the side effects made it not suitable. Can't remember what her new med is.
Hope this helps.
Hi lookin4change,
Will you want to try TCM? This physician has quite a number of children whom are having fits & asthma. Most of her patients are women & children. It is at ang mo kio area.
I have been letting my boy take epilim & TCM at different sessions everyday. On my part, inputting the fruits, health supplement, juices and gripewater to him further enhance his health balancing. Having regular bowel benefits him greatly.
Ever since my boy got the fits, I'm unable to let down my guard. To me, this is a very scary experience & I will not forget them forever. I don't know when will this bomb explode again but will keep on trying to prevent this from happening.
Will you want to try TCM? This physician has quite a number of children whom are having fits & asthma. Most of her patients are women & children. It is at ang mo kio area.
I have been letting my boy take epilim & TCM at different sessions everyday. On my part, inputting the fruits, health supplement, juices and gripewater to him further enhance his health balancing. Having regular bowel benefits him greatly.
Ever since my boy got the fits, I'm unable to let down my guard. To me, this is a very scary experience & I will not forget them forever. I don't know when will this bomb explode again but will keep on trying to prevent this from happening.
I'm back again and glad to see this thread is still alive. Epilepsy is still a concern for mothers with a epileptic child. This time I'm sharing the discrimination I felt from the school transport provider.
My gal now 5 is growing and behaving like any other children. There is no abnormality in her but she is prone to seizure when she is sick or fatigue.
For 1 1/2 yrs, there is no problem with the school bus service provider until recently, she had 2 seizure attacks in the bus. The school bus asked me what they should do when such incident happens and I told them basic First Aid (i'm sure u all know the position to put u child in when they have seizure. This is the same position to put someone who faints- 1st Aid)will help but they are contradiciting things I told them as they are more concerned on the rules (seat belt). They said they did a risk assessment for me (are they qualified???) They claimed that their bus crew may not be equipped with the right medical skills to attend to my girl in the case of seizures and will have to terminate the bus service for my girl with effect from 1 Apr 2011. I'm only given 7 days notice and it is without my agreement.
It is a Private school bus operator sub-contractor to school. School says it is my contract between me and the provider.
Can anyone tell me your child with Epilepsy is going to school by school bus? Do u face the same problem? What is First Aid to school bus operator? What is the contradiction to the seat belt rules in case of seizure and how the authority can help?
Mothers here please think and share ur opinions. I want my child to be like other normal kids, take school bus to school and not being removed because she has a sickness.
My gal now 5 is growing and behaving like any other children. There is no abnormality in her but she is prone to seizure when she is sick or fatigue.
For 1 1/2 yrs, there is no problem with the school bus service provider until recently, she had 2 seizure attacks in the bus. The school bus asked me what they should do when such incident happens and I told them basic First Aid (i'm sure u all know the position to put u child in when they have seizure. This is the same position to put someone who faints- 1st Aid)will help but they are contradiciting things I told them as they are more concerned on the rules (seat belt). They said they did a risk assessment for me (are they qualified???) They claimed that their bus crew may not be equipped with the right medical skills to attend to my girl in the case of seizures and will have to terminate the bus service for my girl with effect from 1 Apr 2011. I'm only given 7 days notice and it is without my agreement.
It is a Private school bus operator sub-contractor to school. School says it is my contract between me and the provider.
Can anyone tell me your child with Epilepsy is going to school by school bus? Do u face the same problem? What is First Aid to school bus operator? What is the contradiction to the seat belt rules in case of seizure and how the authority can help?
Mothers here please think and share ur opinions. I want my child to be like other normal kids, take school bus to school and not being removed because she has a sickness.
peachieyong
Member
Hi mummies, my 18 month old gal had her 8 episode of seizure on Jan. It's was really a scary n heart pain to see such a young toddler going though all tis pain.. And now current she is on keppra. N she had another round of seizure on mar. Currently I,m in US so the doc here say we will continue to monitor her condition and see if they need to change the medicine. Jus wondering how much is keppra selling in spore? And currently now I so afraid to leave my gal alone to play toy cos I scared she will hav another attack.. Her 1st cause of seizure was unknown. Doc ONI suspect is due to virus attack cos she was vomiting n having diarriode the day b4 she had seizure. She did MRI n EEG n result was okie.
So can I hav some advise from u wat r the thing that I should do to prevent from having another attack. I did some read up, so many daily live routine can cause them to hav attack.. I really hope tis is a childhood seizure n it will be gone when she get older.. I really feel veri stress cos now I dun dare to scold her when she did sometime wrong cos I scared she might get upset n trigger her another attack n currently I hav a 2 months old bb to look after.. Sometime she gets real upset n cry like I dun wan her already.. Which make me more heart pain . Will ONI be back this yr 2011 n than will let her find treatment in spore. But how shld I go abt it? Bring her to pd and let them suggest where I shld bring her?got so many question here n really hope to get some advise from u all.
So can I hav some advise from u wat r the thing that I should do to prevent from having another attack. I did some read up, so many daily live routine can cause them to hav attack.. I really hope tis is a childhood seizure n it will be gone when she get older.. I really feel veri stress cos now I dun dare to scold her when she did sometime wrong cos I scared she might get upset n trigger her another attack n currently I hav a 2 months old bb to look after.. Sometime she gets real upset n cry like I dun wan her already.. Which make me more heart pain . Will ONI be back this yr 2011 n than will let her find treatment in spore. But how shld I go abt it? Bring her to pd and let them suggest where I shld bring her?got so many question here n really hope to get some advise from u all.
@ Jacqueline - Dr Janice Wong was previously my child's doctor in KK but now she is working with Thomson Medical. http://www.thomsonpaeds.com/index/doctors/doctors-profile/janice-wong/
I recommend her.
Epilepsy can be a long term treatment so I opt for a gov hopsital. I'm still sticky with kk at a subsidised fee and doctors there are equally good.
I recommend her.
Epilepsy can be a long term treatment so I opt for a gov hopsital. I'm still sticky with kk at a subsidised fee and doctors there are equally good.
Dear parents,
Do u know there is the Epilepsy Care Group in Singapore? See the link.
Mummies they need our support as well as we need their supports. I'm very keen to join.
http://www.epilepsycare.org/who.html
Do u know there is the Epilepsy Care Group in Singapore? See the link.
Mummies they need our support as well as we need their supports. I'm very keen to join.
http://www.epilepsycare.org/who.html
peachieyong
Member
Catty, task for yr if. But I not sure if my daughter can go gov hospital for treatment anot cos she is born in Thomson.
Anyway really happy to see tat yr daughter is going sch like every other kids.. Tis is also my concern too.. U working? Jus wanna check, last time when yr daughter had seizure, is she sick that cause her to hav it? Cos normally it cos by fever. So for us rite now, do I need to b wit her 24/7? Last time b4 she had seizure, I dare to let her play in her room herself but after tis incident, I n hubby is always watching her by her side make. Sure she dun fall... How did u mange yr gal when she was abt 1? Care to share it wit me? Thanks
Anyway really happy to see tat yr daughter is going sch like every other kids.. Tis is also my concern too.. U working? Jus wanna check, last time when yr daughter had seizure, is she sick that cause her to hav it? Cos normally it cos by fever. So for us rite now, do I need to b wit her 24/7? Last time b4 she had seizure, I dare to let her play in her room herself but after tis incident, I n hubby is always watching her by her side make. Sure she dun fall... How did u mange yr gal when she was abt 1? Care to share it wit me? Thanks
My girl is born in Thomson medical too. I think anyone can go to public hopsital, it only boils down to if you can get a subsided rate. I see more and more caucasian going to KK for consultation.
Yes, I'm working. Most of the time it happened when my girl is sicked and when she is sleeping or waking from sleep. Her 1st seizure was when she was 6 months old. At first, I was like you. Very worried all the time, in and out of hospital. I take extra care even until today when she has a sign of not well, flu, running nose, fever... I discovered her seizure is like a sign that a fever will come next. The things I do are to control her temperature with medi and wet wipe. When she has fever, she can have a couple of episodes a day. Other than that daily life, no special thing. I make sure she's not in bathtub alone. I can consider my girl is the luckier one as I know there are other kids out there with more frequent seizures like everyday. Before she found the suitable medicine, she had seizure like every fortnight or every week (can't remember, all i remember hospital was 2nd home) until she turned 1, she is able to take Epilin and then it is quite well controlled. She was almost 1 year seizure-free until this year. I think it happened to her as she grow taller, bigger, the dosage is not sufficient so doc increases it.
By the way, she's sleeping in her alone in her room now. She's taking swimming lesson with my helper keeping an eye on her. She's 5. As time goes by, I get used to it and take it easy.
I'll tell her eventually she's epileptic and she has to learn to live with it and she better learn because mama cannot be by her side all the time, now she's too young to understand so it is my responsibility to stand up for her. I don't know give her any discount comes to discipline.
But more other worries will come even she is seizure free. Because the society does not know what's Epilepsy and have misconception about it. I just discovered this when she starts school. Talked to doc, and doc told me some kids were even pulled out of school because of frequent seizures. The school wants the kid to get well controlled first before going back.
How often your girl has seizure?
Yes, I'm working. Most of the time it happened when my girl is sicked and when she is sleeping or waking from sleep. Her 1st seizure was when she was 6 months old. At first, I was like you. Very worried all the time, in and out of hospital. I take extra care even until today when she has a sign of not well, flu, running nose, fever... I discovered her seizure is like a sign that a fever will come next. The things I do are to control her temperature with medi and wet wipe. When she has fever, she can have a couple of episodes a day. Other than that daily life, no special thing. I make sure she's not in bathtub alone. I can consider my girl is the luckier one as I know there are other kids out there with more frequent seizures like everyday. Before she found the suitable medicine, she had seizure like every fortnight or every week (can't remember, all i remember hospital was 2nd home) until she turned 1, she is able to take Epilin and then it is quite well controlled. She was almost 1 year seizure-free until this year. I think it happened to her as she grow taller, bigger, the dosage is not sufficient so doc increases it.
By the way, she's sleeping in her alone in her room now. She's taking swimming lesson with my helper keeping an eye on her. She's 5. As time goes by, I get used to it and take it easy.
I'll tell her eventually she's epileptic and she has to learn to live with it and she better learn because mama cannot be by her side all the time, now she's too young to understand so it is my responsibility to stand up for her. I don't know give her any discount comes to discipline.
But more other worries will come even she is seizure free. Because the society does not know what's Epilepsy and have misconception about it. I just discovered this when she starts school. Talked to doc, and doc told me some kids were even pulled out of school because of frequent seizures. The school wants the kid to get well controlled first before going back.
How often your girl has seizure?
peachieyong
Member
Catty, my gal got once in Jan this yr but it's abt 8 times in a day. 1st 2 espisode was at home than the rest was when she in hospital when they trying to draw blood, take urine test... I dunno how spore work but in US they need to draw so many tube of blood n my gal so small n her veins were difficult to find. So she got poke in n out, hands, legs.. Any place they can find n it's happen when she get real scared. So that day in total she got abt 8-9 espisode of seizure. Went hospital to do EEG n MRI everything was good than went home wit doc prescription of keppra. So far so good for abt 2 months than sh had 1 mild 1 on mar this year. Doc ask us to continue to monitor her condition. Not sure is it becos over the weekend we brought her for a short trip n she get too tired that trigger the seizure to happen.. Cos she is nit sick...
Oh, how do u Noe if yr gal hav it during her sleep? How do u tell?
Oh, how do u Noe if yr gal hav it during her sleep? How do u tell?
Hi Jacqueline,
My son has refractory epilepsy with daily frequent seizures. His first seizures started when he was 4 yrs old. Having a child with epilepsy (especially when the seizures are not in control) has a great impact on family life, school, etc. But we are trying the best we can to cope and get on with life.
Below are some websites you may want to look at for information on epilepsy, seizure triggers, etc. Illness, lack of sleep, tiredness are some of the common seizure triggers. You may also want to get the book "Seizures and Epilepsy in Childhood - A Guide" (John Hopkins Press Health Book).
http://www.epilepsy.com/node/355
http://www.nni.com.sg/ForPatientsandVisitors/PatientEducationPamphlets/Epilepsy.htm
http://www.nuh.com.sg/ucmi/patients-and-visitors/diseases-and-conditions/brain-problems/seizure-and-epilepsy.html
There are many online epilepsy support groups in US & other countries. I joined one US group and have learned much from the parents in the group. Maybe we should start a support group in Singapore.
I think there are many good neurologists in US. I heard that John Hopkins Epilepsy Center is good but maybe you want to check around as you are in US now.
If you are Singaporeans, just bring your child tp polyclinic and get referral letter to KKH, NUH, etc in order to be subsidised patients.
My son has refractory epilepsy with daily frequent seizures. His first seizures started when he was 4 yrs old. Having a child with epilepsy (especially when the seizures are not in control) has a great impact on family life, school, etc. But we are trying the best we can to cope and get on with life.
Below are some websites you may want to look at for information on epilepsy, seizure triggers, etc. Illness, lack of sleep, tiredness are some of the common seizure triggers. You may also want to get the book "Seizures and Epilepsy in Childhood - A Guide" (John Hopkins Press Health Book).
http://www.epilepsy.com/node/355
http://www.nni.com.sg/ForPatientsandVisitors/PatientEducationPamphlets/Epilepsy.htm
http://www.nuh.com.sg/ucmi/patients-and-visitors/diseases-and-conditions/brain-problems/seizure-and-epilepsy.html
There are many online epilepsy support groups in US & other countries. I joined one US group and have learned much from the parents in the group. Maybe we should start a support group in Singapore.
I think there are many good neurologists in US. I heard that John Hopkins Epilepsy Center is good but maybe you want to check around as you are in US now.
If you are Singaporeans, just bring your child tp polyclinic and get referral letter to KKH, NUH, etc in order to be subsidised patients.
peachieyong
Member
Lisan, thanks for the info. Ya I'm a sporean. Will be coming back to spore in nov. As of now I jus can't keep myself from worrying..
Today my gal after her nap she having running nose rite now.. I'm very worry....
Today my gal after her nap she having running nose rite now.. I'm very worry....