My son Ryan is now 6 weeks old and when he was 14 days old he started to have episodes where he would stop breathing and go all stiff. He got sent to hospital where it was treated as Reflux, but the siezures continued and he was moved to Alder Hey in Liverpool when he was a month old.

We have been here for another 2 weeks, so in total a month, and he is still having seizures. They have found he has Reflux, which causes the floppy siezures, where he goes blue and stops breathing, and he also has epilepsy, where he goes blue, stiff and stops breathing. Obviously he has needed oxygen in all of these episodes and apart from knowing about the reflux we have no idea what the epilespy type is.

He is on 3 types of anti-seizure medication, plus 2 or 3 for the reflux, plus Reflux milk. He is still having seizures daily though.

Has anyne else had this problem? Know it might be a long shot, but it is a big world so if even only 1 can reply I would be greatful, as at the moment there is no clue when he will be out of hospital.

Thanks. xx

My situation was different to yours, my 4th baby had seizures which started 30 hours after birth and continued for about a week, he was given medication for the seizures. He also had issues regulating his blood sugar, but that resolved. The seizures did stop and at nearly 2 weeks old he was allowed home. He had another episode at 6 weeks but only once and that was it. He had EEG tests etc but was not diagnosed with anything like I say they just went away, I had lots of people tell me stories that their baby had seizures for varying lengths of time (anything from a week to 4 months!) and they went away without consequence.
Ryans seizures sound really frightening, and really hard to deal with, what with you having an older child too!! hope they are able to sort him out soon.

My son has had a seizure but looks like he has a mild form of epilepsy too (he has another condition which pre-disposes him to it). Try not to worry, it is fairly common in infant and children and once under control should stay under control. Good luck!x

my daughter has epilepsy, complex partial seizures. she was diagnosed at 2 yrs old she is now 14 1/2. she is on topiramate, but was on carbamazpine for 8yrs but it started to decrease in its effectivness

there are 3 main types epilepsy

partial - aware of whats going on and maybe a twitch going on somewhere only last seconds

complex partial seizure - they will lose conciousness for a while and will not remember what happened. will also feel drianed and confused afterwards

grand mal - completely unconcious and will violently shake, will be exhausted and cofused afterwards

i've never heard of reflux seizures though hun sorry cant the hospital give you any ore clues
x

Thanks for the replies, he is on the carbamazapine now, along with phenobarbitone and pheytoin, he is also having medicine for the reflux and those episodes have decreased now thankfully, be he has the 3 types of seizures now, so I am not sure how it will be controlled orrally as it is only the Iv phenytoin that helps at the minute, but he has just lost yet another cannula and they were hoping that starting him orrally would help but he had another 3 fits in half an hour, so who knows . . .

Thanks anyway for the replies, it has helped. x

Hope he gets better soon!

my daughter had a seizure like this once...but shes fine now good luck

Just a long overdue update :

Ryan is still in Alder Hey. He is still having seizures, the most he has had in a day is 75, the least 2. He came off Phenytoin but is now back on it with Clobazam and has been nearly a week on the Ketogenic diet. He ended up in HDU (High Dependency) because he was fitting for 5 hours and the rescue meds did not work.

They thought he had something called Migrating Partial Epilepsy of Infancy, which is a devestating form of epilepsy. They once thought West Syndrome, he has had a muscle biopsy 9 weeks ago to check for Mitochondrial Cytopathy, but the consultant has labelled him with Severe Retractable Epilepsy because all the meds do nothing really. He is better now on the Phenytoin again but is still having seizures. Nothing will ever make them go away.

He has reached no milestones and is four months old. But he has been through a lot and sedated a lot. He is little fighter although he will most likely have the same outcome as with Migrating Epilepsy we have been told.

It has been a long 18 weeks, hope we get home soon . . . xxx

I have epilepsy but I didnt get it til I was 16 and I was told that if you get it as a baby or young child you are more likely to grow out of it....whereas I was 16 the dr said i was VERY UNLIKELY to grow out of it.

I am almost positive it will go away...it can be common for young babies when the neural connections are undergoing so much synaptic pruning and development. I think you can hope for a positive future...at the very least if it DOESNT go away it can be controlled really well. As long as im taking my meds I NEVER have a seizure ever.

How is the keto diet going for him? because thats supposed to work well for young children and babies but not for adults

Oh I am so sorry *hugs* - that must be so hard for you and your family! I have no idea what you are going through, but you are so strong, and he is a little fighter. I hope he gets better and things become manageable. If you ever need someone to talk to, I am here.