Epilepsy

[jxmom]

Creating a new thread to gather all Epilepsy and to share the information/exprience/Support.

Let me kick start, i have a cutie pie who had been disgnosed as epilepsy since she was 7mths old. We had been with KKH for treatment for more than a year. Had started tuina since she is 12mths (2-3 times a week).. Throughout this 1 year, we have changed 7 different AED drugs, but till now she is having seizure on an average of 3 days once. Now she is 21mths, she has not starts to stand on her own, has not walk, has not speak...

After watching the tv program from channel U (advance in sciend) last week, somehow there is a unknown fear in me. Am thinking if surgery is an option for her?

Anyone care to share with me your exprience...

 

[epicurean]

Hi jxmon,

Welcome to the forum

My boy (now 2 years old) started having seizures at 18th hour of life and it worsened to the point of 5-6 seizures an hour. He was on a cocktail of seizure meds (sorry I can't remember the names of the meds now) and sedated to control the seizures. When he was discharged from PICU, he was on phenobarbitone to control his sub-clinical seizures and we were given diazepam (anal suppositories) as emergency med in case he experiences breakthru seizures.

When he was 3 months old, his neuro switched him to epilim coz his seizures broke thru during a fever plus he had been having absent and myoclonic seizures even tho he was on phenobarb, which also didn't help with his irritability. Epilim has been clearly more suitable for him as those episodes stopped. When he was 7 months old, neuro put on him on oral diazepam which has a stabilising effect on his epilepsy and also calms him.

EEGs have shown that his sub-clinical seizures usually occur at the right part of his brain. Hubby & I have also watched medical documentaries about children who undergo brain surgery to remove the damaged part that's causing seizure activity. But for my boy, he has limited brain matter as a lot of brain cells died during his early days of bleeding & swelling in his brain. So we're not exactly keen on removing any more brain matter since he doesn't have much left.

His prognosis is low-functioning, high-dependency, non-mobile, non-verbal & limited life span with a host of other med issues. I've accepted that's he's unlikely to ever walk or talk so I've no expectations about my son. My aims are for him to be happy and healthy (by managing his med conditions in whatever ways we can). So I'm pleasantly surprised that he has his own way of communicating with us - he smiles, laughs, coos, babbles, moves his arms & legs (including kicking us to express his displeasure!). He can hold up his head & sits aided by adaptive equipment.

 

[jxmom]

Hi epicurean,

can i know which doctors you are consulting?
Can drop me an email ahevon@yahoo.com

 

[KJ mummy]

Hi jxmom

My 14 moths old boy's condition is quite similar to epicurean's boy. He has celebral palsy with epilepsy. His type of epilepsy was diagnosed as infantile spasms after an EEG done when he was about 6 months old. He is currently on 3 different types of medication namely Vigabatrin, Topomax and Nitrazepem. He is seeing Dr Simon Ling from Kandang Kerbau Hospital and also Dr Janice Wong (used to be from Kandang Kerbau Hospital). His seizures are still not completely under controlled despite taking the above 3 medications but the frequency and intensity have greatly reduced since the neuro doctor started him on Topomax. His neuro doctor at one time suggested trying steroid as it works on some children who have infantile spasms but me and my hubby refused because of the side effects and also the side effects will affect the stem cell infusion which we are preparing him for. Yes, we did store his cord blood at birth and this is the only and best chance for my boy's condition to improve and have a better quality of life. No guarantee but we are willing to give it a try since we have stored his own cord blood.

 

[epicurean]

Hi jxmom,

I understand how disheartening & demoralising it can be that the seizure meds & changing of meds have not been working well for your girl. Would like to share my friends' experience ... we became friends when our children were admitted into PICU around the same time and their girl & Seb have similar med conditions.

Their girl (now 2.5 years old) started having severe seizures at around 5 months. She was transferred to PICU after another hospital couldn't do anything to stop her seizures for a month. In PICU, meds also didn't work well to control her seizures ... neuro changed meds, put her on a cocktail of combined meds, reset meds. The girl was also sedated for weeks to slow down or minimise the frequency & intensity of her seizures. While Seb was discharged after 3.5 weeks, she remained in PICU for 3.5 months. At one point, she was on a combination of 16 types of meds. But her parents never gave up ... they're stoically determined to get her epilepsy under control, relentlessly consulting with her neuro.

As her condition stabilised and seizures became controlled, she was weaned off the various med gradually, started on therapy & eventually discharged. Last I heard, she was on 4 types of med and was in the process of being weaned off some of them. Her mummy quit her job and looks after her on her own. The girl has been improving well with therapy and is more responsive. Like most children with special needs, her story doesn't stop here with a neat ending but is on-going as she continues to face challenges in learning to be more functioning.

So don't give up ... don't give up on your child, yourself, your docs, med technology. Keep trying, searching, figuring out what works for your child.

 

[jxmom]

thanks mummies for sharing the story with me...

i know i just need a little patience, care basically everything to stay strong for her.. and i will...

 

[Ashong Fang]

Hi, my 4 month old niece is diagnosed with Infantile Spasms recently. sad to hear that.. she look so bright and beautiful. out of sudden, she get to get cranky and lose her smile. At first, we thought is normal as she is growing well for the first 3 months. But symptoms of jerking started 1 week back. Grandma notice something is not right. We proceed to KKWCH . EEG done and diagnosed IS. Fortunately MRI and Spine test is normal. Now she is on Sabril, but have side effect , vomit , diarrhoea and lethargic, but no more seizure at the moment. really heartpain to see her suffer.