There is no improvement. The medication is only to suppress and prevent relapses. Frequency shouldn't increase. If increase means either dosage or type of medication not suitable? Maybe can do a scan to check brain waves of you may want to seek second opinion if frequency increases!Hi CTTC, can I know if there is improvement after taking the medication and any occurrence? And after so many years of medi, they don't seems to improve instead the frequency increased.
Hi Lay Koon,
I have read a post that you recommended a vegetable and fruit supplement for children with epilepsy. Can you please share with me where I can buy this supplement? Can I have your email to drop you a note? Otherwise you can email the details to [email protected]. Thanks in advance.
I have a pair of twin both diagnosed with febrile fits when they were 7 mths and now became epilepsy. I have tried TCM, Tui na and Acupuncture together with western medicine for the past 10 years. For the initial 7-8 years things were not that bad, their occurrence of the seizure was once every few mths and there are hope for them to be outgrown from the seizure. Unfortunately, for the past 2 years the pattern changed. The occurrence was once every 2 mths and now it became almost every month or less than a month for both. The worst thing now is they cannot get over excited or their heartbeat cannot be too fast especially if they run too fast, it will trigger. Both the conditions are the same. They are on follow up with KKH. Read from the post that NUH doctors are good and I'm thinking should I change.
Hope can get some advice. Will be happy to try any TCM that has proven to be good too.
Thanks
Worried mum
dear all,
i posted my first question about epilepsy in year 2009. that was when my girl had gone through refractive epilepsy for 3 years and was kind of lost not sure what to do, besides follow up visits and medication from the hospital. Time flies...
Would like to share my expereience here with parents.
My girl was diagnosed with epilepsy at age of 3, since then she was on all types of medication her neurologist recommended, trying to see which succeed in controlling her seizures. She got at least a seizure daily once, mild ones. Though mild ones it seems, through the years, it affected her brain development and she was struggling with her academic, having huge difficulty in coping questions that require analysis and thinking.
We had tried almost all medication available in the market and yet none was able to control or stop her seizures. We were recommended ketongenic diet, but did not take it up, not easy to have full control on this diet.
Just last year, 10th year into her epilepsy, we bit the bullet and decided to go ahead with a surgery for her. The scans and reports all showed the same position of where the part of her brain is giving out the problem/sparks, her frontal brain. It was a big struggle to say yes to it, for we worried that the surgery will affect her memory, behavioural or whatever unknown. Finally we went for it, and now is almost a year from her surgery. We are blessed that everything went smoothly and she is doing fine now. No episodes of seizures after that (touchwood) and she is a happy teenager now, no need to feel inferior anymore, worrying when her seizure will strike in front of her classmates or relatives. And she is coping well with her studies now.
Currently, we are still monitoring and follow up on her case with the hospital.
Hi Nate
Hi Natellechim,
Really glad to hear your daughter is doing well.What is refractive epilepsy?
I would like to do investigations for my 8 yr old son to find the cause of his seizures.Otherwise he is a NT intelligent boy doing well at school.
Can you guide me as to what investigations should I run to find the cause of his seizure which are has occurred twice in the early morning while sleeping.
We are currently under Dr.Phuah.
Tia
Thanks for replying Natellechim.Dr.Phuah asked us to wait n watch again.We went to a neuro surgeon dr.Prem Pillai he recommended a Pet mri.
Also I have read from various groups that essential oils esp Frankinscence is really good for seizures any thoughts on that.
Yes we waited, trial and error in medications for 10yrs. When we decided to consider surgery then we went for the PET MRI because the cost is not cheap. PET MRI gives a good information on which area is really triggering the seizure. The child will be lethargic or drowsy after the scan due to the medication they injected into her for the scan, but the medication will wear off in 1-2 days. From this PET MRI it maps same location with the EEG and MRI scans done quite sometimes back. Thus a good candidate for her to go for ops. After which we also did a functional MRI Scan to determine she is right or left domineering brain controlled, for information purposes only. She also went through pre-ops psychology assessment and pre-ops occupational physiology assessment. After ops will do again to see any variance on her.
I have not used Frankincense oil. Maybe the child might not like the smell? Doctor did recommend the ketogenic diet or surgery options during the years but we didn't go for them that time.
Had tried himalaya salt but no effect on her, she continued to have seizures daily. However her seizure is not those severe types but doctor said each seizure is affecting her brain functioning and development. Through those years her analysing and comprehensive skill were not well developed, making her struggling a lot in her studies esp math problem sums and language comprehension, even understanding verbal conversation.
Seizures went more frequent and severe through the years especially during her psle year, could be puberty stage too. That triggered us to give surgery a serious thought. We were worried too because the lesion was in her frontal lobe, removing it might affect functional skills, emotional and many more because the brain is so complex you will not know which part of the body will be affected after some part of brain is being removed. The more I read the more worried I got.
I did go to Dr Phua for a 2nd opinion prior to the decision for surgery. I also intended to look for neuro-surgeon, Dr Keith Goh, for 2nd opinion, but he was out of town during that period.
My girl was able to go home 5th day after the ops. After the ops, both me and hubby had the same thought of 'we should have done it few years earlier'. However that time we were uncertain and skeptical about surgery for it is dealing with operating the brain, who would dare to take that risk. And also we have yet tried all medication out there that time.
Now she is still under observation and maybe need another year to clear. Hope she can be cleared soon.
I wish a good solution and help is there soon for you child. Take care dear.
Thank you for such a detailed reply .Yes I m just waiting n watching.He is not on medicine yet.
I went to Dr.Tan Nam Guan bcoz his mri showed sinus infection the 2nd time round when he had a seizure he had a bad sinus infection too.
Acc to Dr.Guan sinus infection could be one of the triggers but its really hard to believe that theory.
Just praying hard and hoping to find the right direction to treating it.
Thanks n prayers n good wishes to you princess too.
Thank you for such a detailed reply .Yes I m just waiting n watching.He is not on medicine yet.
I went to Dr.Tan Nam Guan bcoz his mri showed sinus infection the 2nd time round when he had a seizure he had a bad sinus infection too.
Acc to Dr.Guan sinus infection could be one of the triggers but its really hard to believe that theory.
Just praying hard and hoping to find the right direction to treating it.
Thanks n prayers n good wishes to you princess too.
Right now he is on keppra 800ml, Is it true that those who have tonic clonic froth in the mouth will remain epileptic throughout their lives?How are things? I should have checked this thread more often.
Just want to comment on sinus infection being one of the triggers of seizure. Usually during a illness, the seizure threshold will drop. So seizures are more likely to happen to someone who is sick. This is what I know.
I need some help
My 17 year old girl is diagnosed with epilepsy seizure on 8 Aug and on keppra 250mg twice per day. Everything seem fine until 5Oct .
5 Oct , she had a fits. At first we thought it is a insolate case, but no. She continue to experience fits once every week
Fr 5Oct to 28 Nov 18, ecperexperi total of 9fits.
We brought her to KTPH A&E Everytime, and the dosage keep increasing.
Only manage to see the neurologist when she is warded on 30Oct and the dosage of keppra is increased to the max of 1500mg twice per day.
28Oct we brought her to A&E again because of the fits. The doctor said fits is like this and it occurs anytime .
Next appointment with the consellor is on 13Dec 18. They are reluntant to bring forward.
For them, having fits every week is not a big deal.
But as parent, we keep we can have more days of seizure free.
Otherwise what is the purpose of seeing neurologist and taking medication.
Any one with the same experience?
We also like to seek opinion from a second source.
Anyone can recommend a experience neurpneurol to us?
Hope to hear reply ASAP.
I need some help
My 17 year old girl is diagnosed with epilepsy seizure on 8 Aug and on keppra 250mg twice per day. Everything seem fine until 5Oct .
5 Oct , she had a fits. At first we thought it is a insolate case, but no. She continue to experience fits once every week
Fr 5Oct to 28 Nov 18, ecperexperi total of 9fits.
We brought her to KTPH A&E Everytime, and the dosage keep increasing.
Only manage to see the neurologist when she is warded on 30Oct and the dosage of keppra is increased to the max of 1500mg twice per day.
28Oct we brought her to A&E again because of the fits. The doctor said fits is like this and it occurs anytime .
Next appointment with the consellor is on 13Dec 18. They are reluntant to bring forward.
For them, having fits every week is not a big deal.
But as parent, we keep we can have more days of seizure free.
Otherwise what is the purpose of seeing neurologist and taking medication.
Any one with the same experience?
We also like to seek opinion from a second source.
Anyone can recommend a experience neurpneurol to us?
Hope to hear reply ASAP.
Hi! My boy was on keppra 400 mg for 21months no seizures suddenly outbof the blue two noctural seizures the doctor says because the dosage too low for his weight and increased to 500mg.Is there anyway I can connect with you moms to discuss what to do next because I need answrrs which the docs arnt giving.How's her condition now? I can recommend a neuro pd. A/Prof Ong Hian Tat at NUH.
You can pm me too or email me at [email protected]