# 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


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## 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.


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## 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


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## 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


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## fairywings

helen1234 said:


> 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


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## Emmea12uk

Hope he gets better soon!


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## Actingprinces

fairywings said:


> 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


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## 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


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## 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


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## 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.


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## fairywings

SweetNothings said:


> 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


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## SweetNothings

fairywings said:


> 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?


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## 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


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## 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? :hugs::hugs:


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## SweetNothings

fairywings said:


> 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.


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## fairywings

lady3 said:


> 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? :hugs::hugs:

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


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## 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


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## 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:hugs:


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## 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.

:hugs:

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


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## 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


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## fairywings

Just an upate : Ryan was finally diagnosed. He had an EEG the Tuesday before last and it IS the Migrating Partial Epilepsy of Infancy - there are only around 100 cases world wide and Ryan is the 6th diagnosed in the U.K. Up until now all the traits never showed on the EEG, just some which is why they could not diagnose it.

The average life expentancy based on all reported cases so far is 2, but the oldes was 8, so who knows how long Ryan has left. They can develop other things like scoliosis and Gastrostatus (where they can no longer eat, drink or tolerate meds.) They are prone to chest infections and pnuemonia (sp?), too, and rarely develop much in the way of milestones. He is 6 months old now.

But we can bring him home soon, and have weekend leave now too. So we are going to make the most of him while he is here. xx


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## louise1302

awww hun, so sorry youre going through this. Ryan sounds like such a fighter massive :hugs: to you and your family x


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## AmyBumble

oh my goodness, My thoughts are with you and your family sweetheart. 

I really dont know what to say to you except that my heart goes out to you and well done for coping with this so far. I am sure that there are very hard times ahead but you come across as a strong and brave woman so I know you will get through them.

If you ever feel the need to chat, Im not the wisest woman you'll ever meet lol (far from it!) But I want you to know Im here if you want to vent or anything at all. I know you dont know me but I just think it helps everyone to have support, no matter where from. 

I will be thinking of you and your family. Bless you all xxxxx :hugs:


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## lady3

Thank you for updating us. I'm keeping him and your family in my thoughts through this whole journey.


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## wantababybump

Your family is in my thoughts :hug: xx


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## nkbapbt

Im so sorry hun. I have been quietly following this thread. I didnt want to say anything till now because I had no input. But now I just want to say how terribly sorry I am. :hugs:


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## fairywings

Thanks for all the kind words everyone. Means a lot to me. xxx


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## Emmea12uk

I am so sorry. My heart goes out to him and you and your family. I am so pleased you can bring him home and be a family, if only for a short while. 

I really wish you all the best. God bless you all xx


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## premmiemum123

Hello, have just read your story. I am so sorry to read about Ryan, I hope you enjoy your family time together...x


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## fairywings

Update:

Started a group for Ryan on Facebook if anyone wants to join. It is just to bring more awareness to the condition. I know it is rare now but it may not be one day and the more people know about it the better. 

Thanks.

https://www.facebook.com/home.php#/group.php?gid=179731660837&ref=mf


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## helen1234

shit honey i dont know what to say, are you on the epilepsy action website are you getting alot of support.
anything i can do

:hugs:


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## helen1234

just seen you are on epilepsy action :dohh:


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## fairywings

helen1234 said:


> just seen you are on epilepsy action :dohh:


I go on Epilepsy Action but am not in contact with anyone, or anything.

Thanks. :)


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## fairywings

Hi everyone been a while since I was on here.

Update on Ry Ry: He was brought home in December 2009 and we tried very hard to control his seizures. we finally found the right mix of Lacosamide, Clonazepam for seizures and Domperidone, Omeprazole, Ondansetron for his severe gastric reflux. He was also put on morphine to stop the pain of his gatric-status (where the stomach shuts down). He had a few episodes of being back in hospital with blocked gastrostomy, one infection, couple of status episodes, but a good first year back at home.
In early April 2011 ryan got pnemonia which meant he had to be on constant oxygen for a month. He picked up for a week and we got him off the oxygen, only for him to fall ill again in May. His meds were all upped as his seizures increased and he had a good week before he aspirated badly and caught pnemonia again in the same right lung as last time. His seizures were also back with a vengeance. He was in hospital for the night and moved to the hospice where during his first night there he was put on sub-cut phenobarb. took 4 or 5 days to get the level in the syringe right that his seizures settled and he slept. But soon after he caught an infection in his left lung which collapsed and he spent a few days fighting on with his pnemonia filled lung.
Amazingly he fought the infection in his left lung and it reinflated- none of the nurses had known of that happening. But his stomach was failing and by this point was not absorbing his meds, food or water. He was also on sub cut Nozinan(for secretions and sickness), morphine for pain and midazolam for pain. 

Sadly on the 16th June 2011 after 10 days fighting he was too tired and passed away in my arms with his Daddy and grandparents with him.

Night night Angel. I love you. He was 2 years, 1 month and 14 days old. xxxx


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## Emmea12uk

I am so sorry to hear this. You all went through so much. I can't find the right words.

Rest in peace with the angels Ry Ry.


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## Nic1107

I am so sorry :cry: I can't begin to find the 'right' words. You and your family will be in my thoughts and prayers. :hugs: Rest in peace, little man. :hugs:


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## Ilovehim89

So sorry you are going through this! Seizures are scary, that is for sure! My son only has febrile seizures but they are really extremely scary!!! You are strong, mama!


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## fairywings

Thanks we are not going through it anymore. he is at peace now. Sorry your child has febrile seizures. They are not nice to look at. Your child will most likely outgrow them with no damage done. Wish it had been like that for Ry Ry. :( xx


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## louise1302

oh hun i have no words, i remember reading Ryans story as my little one is of a similar age :cry:

fly high little man xxxxxxx


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## Marleysgirl

Thank you fairywings for coming back on to tell us about Ryan's passing. It's sad news and all our thoughts are with you and your family. :hugs:


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## Lottie86

I'm so so sorry xxxx :hugs::hugs:


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## Aidedhoney

So sorry for your loss of Ryan xxx


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## BlueHadeda

:cry::cry::cry::cry::cry:

He was clearly a very loved little boy. May he rest in peace and comfort.


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## helen1234

so sorry fpr your loss hun :hugs:, 

fly high with the angels Ryan, sweetest dreams 

xx


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## Mauser

Oh I'm so very very sorry!
:hug:


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## Zaki

Hi 

My son was born 6 weeks ago and after 22 minutes of his life he started having seizure. Hasn't gone away since. He's going throug simmular episodes to the one you have described in your son condition.
Is there any chance I could speak to you to seek some advise as our doctors don't know what they are treating at the moment... They don't know where his seizures are coming from he's also stiff baby and he's breathing is not stable.
Please reply

Thank you


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## Zaki

Keep strong !!!!!


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