baby seizures

[fairywings]

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

 

[soon2b6]

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.

 

[Emmea12uk]

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

 

[helen1234]

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

 

[fairywings]

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

 

[Emmea12uk]

Hope he gets better soon!

 

[Actingprinces]

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

 

[fairywings]

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

 

[SweetNothings]

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

 

[Emmea12uk]

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.

 

[fairywings]

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

You are lucky that your meds work for you. Sadly Ryan is rare in what he is that they cant and may never find what it is. we have asked if he will grow out of it and his consultant said 'no'. If it is the Mitochondrial disease it is uncurable and what he has got is uncurable as they will never find it. Controlling his fits is the Phenytoin that stops status seizures, but he is still having a fair few and has been on 10 meds to try and control it.
They know they cant stop all of them. His life WILL be shortened, we have been told that. But it wont be the epilepsy that kills him it will be the illnessess that he gets as if he gets ill he will fit more and wont be able to fight both one day. How much shorter we don't know. His brain is not on the centile line it should be, it is way under and from what I gather is an indicator of the problem he has.

The keto diet is being tolerated well but i dont think it can be doing much yet as his ketone levels are just trace or 1+ (they like them 3+).

But thanks for the replies. xx

 

[SweetNothings]

You are lucky that your meds work for you. Sadly Ryan is rare in what he is that they cant and may never find what it is. we have asked if he will grow out of it and his consultant said 'no'. If it is the Mitochondrial disease it is uncurable and what he has got is uncurable as they will never find it. Controlling his fits is the Phenytoin that stops status seizures, but he is still having a fair few and has been on 10 meds to try and control it.
They know they cant stop all of them. His life WILL be shortened, we have been told that. But it wont be the epilepsy that kills him it will be the illnessess that he gets as if he gets ill he will fit more and wont be able to fight both one day. How much shorter we don't know. His brain is not on the centile line it should be, it is way under and from what I gather is an indicator of the problem he has.

The keto diet is being tolerated well but i dont think it can be doing much yet as his ketone levels are just trace or 1+ (they like them 3+).

But thanks for the replies. xx

So all scan show that there is nothing structurally or functionally abnormal about his brain?? I am so sorry that you have to deal with this....i cant imagine how hard it would be...is he on multiple medications or just the phenytoin. What do they think would be giving him the illnesses that would make it more difficult to combat the two? Is there an underlying issue at hand?

 

[fairywings]

They think it may be metabolic. Mitochondrial is metabolic but if it isnt that it will be down to the genetics to find it, if they can. He is on Phenytoin and Clobazam. They are the only 2 that really help. He has been on Phenobarb, Carbamazapine, Keppra, Sodium Valproate, Vigabatrin, Nitrazepam, Sulthiame, Pyrodoxine (in case it was the B vitamin deficinacy), Phenytoin and Clobazam.
He has had 2 MRI's, blood tests, chromosone tests, muscle and skin biopsy, 2 lumpar punchers, 5 EEG's and out of that it is only the EEG that has shown activity that should not be there, and his last MRI which showed that his brain is not growing properly, but the rest of the brain was normal so showed nothing towards helping with a diagnosis.
His consultant thinks that the epilepsy like his reflux are symptoms of an underlying condition that they may never find as all tests have come back negative. I don't know if the biopsies will come up with anything I am hoping in a way they will just so we can have an answer.
But he is stable at least and hopefully I will finally get him home after 5 months . . .xxx

 

[lady3]

Wow. I'm so sorry you are having to go through this. How are you your oh and your daughter doing through all of this?

 

[SweetNothings]

They think it may be metabolic. Mitochondrial is metabolic but if it isnt that it will be down to the genetics to find it, if they can. He is on Phenytoin and Clobazam. They are the only 2 that really help. He has been on Phenobarb, Carbamazapine, Keppra, Sodium Valproate, Vigabatrin, Nitrazepam, Sulthiame, Pyrodoxine (in case it was the B vitamin deficinacy), Phenytoin and Clobazam.
He has had 2 MRI's, blood tests, chromosone tests, muscle and skin biopsy, 2 lumpar punchers, 5 EEG's and out of that it is only the EEG that has shown activity that should not be there, and his last MRI which showed that his brain is not growing properly, but the rest of the brain was normal so showed nothing towards helping with a diagnosis.
His consultant thinks that the epilepsy like his reflux are symptoms of an underlying condition that they may never find as all tests have come back negative. I don't know if the biopsies will come up with anything I am hoping in a way they will just so we can have an answer.
But he is stable at least and hopefully I will finally get him home after 5 months . . .xxx

The scariest thing about epilepsy is all the unknowns. I have had several MRIs and EEGs and everything shows that my brain is perfectly normal...I've got no problems at all...no one in my family or extended family has ever had seizure. I dont believe its genetics because I no no one as far as 3 generations back has ever had a seizure. And it is so disappointing because I'll never know what causes it...the only thing we think is that stress and lack of sleep may be causing it. I have been fortunate to only ever get seizures in my sleep but i get terrible grand mals that leave me EXHAUSTED in the morning and i fall asleep by noon and in my classes as well...but mine is definitely linked with my sleep cycles yet the dr cant tell the cause of it really.

If you ever need to talk feel free to pm me cause I know its a hard thing to deal with.

 

[fairywings]

Wow. I'm so sorry you are having to go through this. How are you your oh and your daughter doing through all of this?

Thanks. x We get through it day by day and by not expecting anything as Ryan is quite complex. When he ended up in HDU he had had a calm day really for him, less than 15 I think, so we never know what is going to happen. Amy just thinks she is on holiday but they are going home now as it has been long enough and I am staying with Ryan and going home once a week.

We will see what tomorrow brings . . . xx

 

[fairywings]

Sweetnothings,
Thank you. When I met with the genetics councellor she told me that everything has to start somewhere. We have no history of seizures either. So they will look for the tiniest inconsistancy and hopefully find it one day, but the problem is it could be in a strand of genetic makeup that has yet to be discovered she told me. But they are learning everyday and even if he is gone if they find it one day it will give me peace and then the next person who comes along like Ryan - well they will know what it is.

Thanks for the offer of PM'ing you. xx

 

[Suz]

I have no advice but I didnt want to read and run...

I really wish you all the best... I can not imagine what you are going through... I just hope that the Drs. can figure out how to make your son better

 

[helen1234]

aw hun i empathise with you fully, Ryan is obv more poorly than rosie was her epilepsy was diagnosed quickly but took yrs to control,
sometimes the effects of her meds are worse than the seizure's.

there's nothing worse than seeing your child fit, i never got used to it,

have you been on the epilepsy action website they are brilliant lots of info and their research finding etc.



if you ever want to chat or rant un i'm a good listener.

 

[fairywings]

thanks helen1234,

yeah I have been on the epilepsy action webpage, that is where i read about Migrating Epilepsy properly after we were told it could be that. It is a good informative site. Dr Appleton who wrote it works at the hospital we are at now but isn't our consultant.

I know how hard it is to get control, so am really glad you finally did. x

Keto diet still isnt't working - he has had 5 days of negatives and is losing weight here and there, too. He is 5 months old tomorrow and only weighs 12lb 4 oz. His weights has always fluctuated though . . .

Thanks again. xx