Discussion
Hi
One of our children, our 4 year old son has medical complications and one of them is his Epilepsy.
Its pretty bad. They are not the usual 5 min self correcting seizures but a long drawn out seizure that results in him being blue lighted to hospital, intubated and pumped full of anti convulsants to stop him fitting.
Today his consultant took us aside and expressed how worried she was and virtually admitted that they are struggling to control them with regular medication. Each time he goes in the status eplilepticus and each time he does there is risk of death.
We are mortified, shocked feel sick with worry.
Anyone got any positive spins or stories that may help?
One of our children, our 4 year old son has medical complications and one of them is his Epilepsy.
Its pretty bad. They are not the usual 5 min self correcting seizures but a long drawn out seizure that results in him being blue lighted to hospital, intubated and pumped full of anti convulsants to stop him fitting.
Today his consultant took us aside and expressed how worried she was and virtually admitted that they are struggling to control them with regular medication. Each time he goes in the status eplilepticus and each time he does there is risk of death.
We are mortified, shocked feel sick with worry.
Anyone got any positive spins or stories that may help?
I have epilepsy and Im now 28 with a full UK driving licence, go out drinking like everyone else and live a decent life.
It took years for my medication to be sorted out so I dont fit( Im on 400mg carbamazipine retard(slow release) twice a day for the rest of my life) I had to attend an outpatients every 6 months and get ECG tests often. I had to be fit free for a year to even get a provisonal licence(medical restricted to 3 years). I have had to hand my driving licence back twice for a year each time(thats hard). I have got it back both times and in the past few years stayed free for long enough to get my licence unrestricted.
. I have accepted that I will never fly a plane or drive an HGV but Im happy with my life.
It took years for my medication to be sorted out so I dont fit( Im on 400mg carbamazipine retard(slow release) twice a day for the rest of my life) I had to attend an outpatients every 6 months and get ECG tests often. I had to be fit free for a year to even get a provisonal licence(medical restricted to 3 years). I have had to hand my driving licence back twice for a year each time(thats hard). I have got it back both times and in the past few years stayed free for long enough to get my licence unrestricted.
. I have accepted that I will never fly a plane or drive an HGV but Im happy with my life. Edited by sherman on Thursday 31st October 20:51
Edited by sherman on Thursday 31st October 20:55
My youngest son developed Epilepsy when he was 9 months old, Infantile Spasms or Wests Syndrome, He was suffering from over 40 episodes a day at the time, It has developed in time to full blown Lennox Gastaut Syndrome, He will be 16 in December, He has no other medical complications. There is background activity going on in his brain all day long and he is on a cocktail of medication to try and keep it in the background. He is not seizure free.
He is extremely active everyday and the happiest person I have ever met. He lights up everyone's life where ever he goes. He is at a school called Young Epilepsy, The school has a medical centre attached to it which is part of GOSH. They also carry out extensive research, observation and assessments at the unit. You may find that useful in the fullness of time.
It is a difficult journey, I do think that each case is unique. I wish you luck and I hope you have some good news at sometime soon.
He is extremely active everyday and the happiest person I have ever met. He lights up everyone's life where ever he goes. He is at a school called Young Epilepsy, The school has a medical centre attached to it which is part of GOSH. They also carry out extensive research, observation and assessments at the unit. You may find that useful in the fullness of time.
It is a difficult journey, I do think that each case is unique. I wish you luck and I hope you have some good news at sometime soon.
Sorry to hear that your son is struggling with frequent episodes of status - not many things are as scary than seeing your child tubed and ventilated because of non-responsive seizures.
Have you been issued with buccal midazolam to give him at home to try and terminate the fits at 5 minutes when at home? If not, you need to explore this with your consultant. I'm also assuming that you're seeing a paediatric neurologist?
Have you been issued with buccal midazolam to give him at home to try and terminate the fits at 5 minutes when at home? If not, you need to explore this with your consultant. I'm also assuming that you're seeing a paediatric neurologist?
I'd been having 'fits' for afew years now, and was diagnosed with epilepsy exactly 12 months ago. Been on Tegretol carbamazepine, with varying dosages, after this last visit to my neurologist afew weeks ago, I've had my dosage increased from 800mg, up to 1200mg as I'm still unable to control them. If this dosage is unsuccessful, I'll be having to change meds, which is a kick in the teeth as I've on carbamazepine for the full 12 months, and will feel like I'm starting from scratch again.
My employers have been' fairly' understanding upto date, but beginning to run out of patience with me, side effects of the meds where horrendous for a good few months, and my stamina levels are not what they used to be, do struggle to keep up (vehicle assembly line).
Unfortunately I don't seem to be able to see the light, and have the feeling of will be a LONG time before I'm settled on a medication and dosage that's correct for me.
My employers have been' fairly' understanding upto date, but beginning to run out of patience with me, side effects of the meds where horrendous for a good few months, and my stamina levels are not what they used to be, do struggle to keep up (vehicle assembly line).
Unfortunately I don't seem to be able to see the light, and have the feeling of will be a LONG time before I'm settled on a medication and dosage that's correct for me.
You want the most positive spin I can give? Epilepsy isn't necessarily constant or permanent and is often worse while our brains are developing.
I was diagnosed as a pre-teen. Only minor fits but easily 10+ times on a bad day, 3 times was a good day. Aged 16 I came off the medication without any adverse effects and I have been fit free ever since. It was all due to the hormones and changes going on in my body and once I reached adulthood everything settled down.
What your son is going through now is horrible but there is no reason to think it will always be this way. Time will change things and regardless of what the key to managing his condition turns out to be, 10 years from now this will all just be a bad memory.
I was diagnosed as a pre-teen. Only minor fits but easily 10+ times on a bad day, 3 times was a good day. Aged 16 I came off the medication without any adverse effects and I have been fit free ever since. It was all due to the hormones and changes going on in my body and once I reached adulthood everything settled down.
What your son is going through now is horrible but there is no reason to think it will always be this way. Time will change things and regardless of what the key to managing his condition turns out to be, 10 years from now this will all just be a bad memory.
HughS47 said:
Sorry to hear that your son is struggling with frequent episodes of status - not many things are as scary than seeing your child tubed and ventilated because of non-responsive seizures.
Have you been issued with buccal midazolam to give him at home to try and terminate the fits at 5 minutes when at home? If not, you need to explore this with your consultant. I'm also assuming that you're seeing a paediatric neurologist?
Unfortunately as his seizure progresses his respiration suffers and he struggles to breathe and we have to BVM until the ambulance arrives - Benzodiazepines like diazepam and midazolam tend to make this worse.Have you been issued with buccal midazolam to give him at home to try and terminate the fits at 5 minutes when at home? If not, you need to explore this with your consultant. I'm also assuming that you're seeing a paediatric neurologist?
We are well into discussions with his consultant paediatrician and neurologist of trying to get a suitable rescue med we can use. We are looking at paraldehyde as the next attempt but we are awaiting this to be approved.
Another challenge is actually becoming aware of his seizure onset as they are at night. He sleeps in a bed next to ours, we have him plugged in to a sats monitor and also have an infra red camera for when we are not in bed. We are awaiting delivery of a matt that can be used under the bed to detect the seizure. We are sceptical as they are focal seizures and pretty mild in terms of shaking.
Thanks to all for the input and hope. We sleep little and worry lots but hopefully one day he will be without these bloody seizures.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff