Hello everyone! I was wondering is there any others out there who has a baby with epilepsy? I would really like to talk about how you're coping ect.. This is all very new to me and I feel sometimes a bit scared.. I am also on antidepressives to help me cope with this new situation..
Baby with epilepsy
- Thread starter tase37
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
- Messages
- 17,355
- Reaction score
- 755
- Points
- 263
Hi tase37, welcome to CWE!
It's normal to be scared. I think early in an epilepsy diagnosis (whether you are the patient or the caregiver), the unknowns can feel overwhelming. You are doing a good thing by reaching out for information and support. Here at CWE we have a forum called The Nursery for parents of children with epilepsy. You can check out those posts and threads, and I hope you feel free to post any specific questions and concerns as they arise.
Best,
Nakamova
It's normal to be scared. I think early in an epilepsy diagnosis (whether you are the patient or the caregiver), the unknowns can feel overwhelming. You are doing a good thing by reaching out for information and support. Here at CWE we have a forum called The Nursery for parents of children with epilepsy. You can check out those posts and threads, and I hope you feel free to post any specific questions and concerns as they arise.
Best,
Nakamova
seanr53
New
- Messages
- 34
- Reaction score
- 0
- Points
- 0
Hi Tase37, welcome to the forum.
Our son is now 18 months old, we started noticing him having seizures when he was about 8 months old, at about the time he was able to sit up (he was probably having seizures for longer, but we did not pick them up while he was lying down). He was having absence, myoclonic, and atonic seizures.
It has been a really difficult time for us, my wife in particular. My wife has often looked back at things, asking what if she ate the wrong food, or had maybe taken the wrong medication, blaming herself for what has happened. But now, she has now accepted that our baby has just been given a challenge early on in life, and it is no ones fault. She is coping a lot better now.
We have tried three medications, Frisim, Topamaz, and Keppra. They were not entirely successful. But now we are halfway through our trial of lamictal, and it is very promising so far. We are confident we will be able to control Luke's seizures in the long term. I am sure you will find a successful treatment for your baby - it just may take a while.
Tase37, you have started a long journey, but rest assured, things will get better, and your baby will fill you pride and joy, like our boy has.
Our son is now 18 months old, we started noticing him having seizures when he was about 8 months old, at about the time he was able to sit up (he was probably having seizures for longer, but we did not pick them up while he was lying down). He was having absence, myoclonic, and atonic seizures.
It has been a really difficult time for us, my wife in particular. My wife has often looked back at things, asking what if she ate the wrong food, or had maybe taken the wrong medication, blaming herself for what has happened. But now, she has now accepted that our baby has just been given a challenge early on in life, and it is no ones fault. She is coping a lot better now.
We have tried three medications, Frisim, Topamaz, and Keppra. They were not entirely successful. But now we are halfway through our trial of lamictal, and it is very promising so far. We are confident we will be able to control Luke's seizures in the long term. I am sure you will find a successful treatment for your baby - it just may take a while.
Tase37, you have started a long journey, but rest assured, things will get better, and your baby will fill you pride and joy, like our boy has.
Thank you and I'm really glad to hear that things are looking up for u 
yes I went threw the stage of blaming myself but the neurologist said to me that it's noones fault and reassured me by saying this! It is a scarey thing to live with but everyday I feel more and more surer of myself! We have now had one week without seizures Tomorrow is her christening!
yes I went threw the stage of blaming myself but the neurologist said to me that it's noones fault and reassured me by saying this! It is a scarey thing to live with but everyday I feel more and more surer of myself! We have now had one week without seizures Tomorrow is her christening!yes it was indoors heh!
Christening went really well though at first she seemed to be going in to a seizure luckily it didn't properly hit her and was over within a few seconds..we have noticed that stress starts them off :/ Her name is: Jessica Hanna Maria Enroos
heh! Christening went really well though at first she seemed to be going in to a seizure
luckily it didn't properly hit her and was over within a few seconds..we have noticed that stress starts them off :/ Her name is: Jessica Hanna Maria Enroos 
dragonlady1978
New
- Messages
- 47
- Reaction score
- 0
- Points
- 0
Hi Tase-and congrats on the christening!
There are quite a few lovely people here that can relate and offer advice and support, and I am glad you found your way here
My son is now 5, he was diagnosed with epilepsy at 1. I can't say it hasn't been a difficult journey. I think any parent of a child with E feels worried about how to cope, just because it is devastating to have ANYTHING wrong with your child and not many in this situation get definitive answers. There is no one set of circumstances, treatments, symptoms, or side effects that can just be dealt with and done.
I grieved for atleast a month at the diagnosis and what it meant for my child, and the first dozen or so seizures sent me into sheer panic.
In the last four years I have run the gamut, it can be an emotional roller coaster to go from seizure control to side effects to breakthroughs, and back again. As they grow, the seizure activity can change and meds have to be adjusted along the way.
One thing I have learned is that with time and experience comes a different perspective. Being a parent and loving your child somehow makes us strong enough to handle whatever obstacle. It's hard to see it that way at first, but I consider myself fortunate that what my child has is manageable. Only very recently do we have the medicines and treatments, information and support that has been unavailable to everyone before us.
In the beginning, it is totally normal to feel sad, angry, helpless....but I think the business of being your child's advocate and getting them the best of what is available to us today can effectively change that mindset. You WILL learn to cope, it happens along the way out of necessity-when your child needs you to be strong it is surprising what you find you are capable of-and the good news is that lots of people find seizure control in meds, supplements, and dietary changes. Once you get past the hurdle of the initial shock....the how's, why's, and what-do-we-do's.....the proactive part of getting on the road to managing their epilepsy is also the way to learning how to cope ourselves.
Education and support are the building blocks to less stress/feeling out of control and more sanity. Whenever we have had roadblocks, I still have moments of upset of course. It helps to know that there are others going through the same, and that I can vent or ask questions and get to a better place.
Please let us know how Jessica is doing along they way!
There are quite a few lovely people here that can relate and offer advice and support, and I am glad you found your way here
My son is now 5, he was diagnosed with epilepsy at 1. I can't say it hasn't been a difficult journey. I think any parent of a child with E feels worried about how to cope, just because it is devastating to have ANYTHING wrong with your child and not many in this situation get definitive answers. There is no one set of circumstances, treatments, symptoms, or side effects that can just be dealt with and done.
I grieved for atleast a month at the diagnosis and what it meant for my child, and the first dozen or so seizures sent me into sheer panic.
In the last four years I have run the gamut, it can be an emotional roller coaster to go from seizure control to side effects to breakthroughs, and back again. As they grow, the seizure activity can change and meds have to be adjusted along the way.
One thing I have learned is that with time and experience comes a different perspective. Being a parent and loving your child somehow makes us strong enough to handle whatever obstacle. It's hard to see it that way at first, but I consider myself fortunate that what my child has is manageable. Only very recently do we have the medicines and treatments, information and support that has been unavailable to everyone before us.
In the beginning, it is totally normal to feel sad, angry, helpless....but I think the business of being your child's advocate and getting them the best of what is available to us today can effectively change that mindset. You WILL learn to cope, it happens along the way out of necessity-when your child needs you to be strong it is surprising what you find you are capable of-and the good news is that lots of people find seizure control in meds, supplements, and dietary changes. Once you get past the hurdle of the initial shock....the how's, why's, and what-do-we-do's.....the proactive part of getting on the road to managing their epilepsy is also the way to learning how to cope ourselves.
Education and support are the building blocks to less stress/feeling out of control and more sanity. Whenever we have had roadblocks, I still have moments of upset of course. It helps to know that there are others going through the same, and that I can vent or ask questions and get to a better place.
Please let us know how Jessica is doing along they way!
mlbandura
New
- Messages
- 83
- Reaction score
- 0
- Points
- 0
Hi Tase. Welcome. My son was diagnosed last April with epilepsy. He is 5 now. In just this year I have learned so much about Epilepsy and about myself. The wonderful people of CWE have been so wonderful, supportive and knowledgeable. I honestly do not know what I would do with out them.
As far as the coping goes.. at first I was a complete mess. I didn't fully understand everything that was going on and sometimes I still get baffled. I didn't sleep at all. I would have panic attacks if I had to be away from him. I completely understand what you are going through. I found that educating myself and the people around Luke about seizures and first aid made me feel better. I since have bought a baby video monitor to use while he is sleeping to put my mind at ease a bit. I always joke that if I could I would shrink him and carry him around in my pocket. Now I am doing a lot better I think. I don't panic as much and now I remain calm during his seizures. Hearing other stories and knowing I am not the only one with a child with E is comforting in some way.
I do wish all the best for you and your daughter. I think you will find this site to be very supportive as I know I do.
As far as the coping goes.. at first I was a complete mess. I didn't fully understand everything that was going on and sometimes I still get baffled. I didn't sleep at all. I would have panic attacks if I had to be away from him. I completely understand what you are going through. I found that educating myself and the people around Luke about seizures and first aid made me feel better. I since have bought a baby video monitor to use while he is sleeping to put my mind at ease a bit. I always joke that if I could I would shrink him and carry him around in my pocket. Now I am doing a lot better I think. I don't panic as much and now I remain calm during his seizures. Hearing other stories and knowing I am not the only one with a child with E is comforting in some way.
I do wish all the best for you and your daughter. I think you will find this site to be very supportive as I know I do.
thank you for all the support My anti depressives are helping me cope rather well most of the time and I have meds ready if I get hit by another panic attack! Luckily I haven't been usually on my own when she has had a seizure..only once really and I found that rather scarey! I sometimes feel like I'm all on my own..like I think I've mentioned before my fiance has never seen a seizure (lucky him) and I get her meds ready morning and evening..I just wish he could really understand her situation better..I sometimes wonder does he really understand what she has
My anti depressives are helping me cope rather well most of the time and I have meds ready if I get hit by another panic attack! Luckily I haven't been usually on my own when she has had a seizure..only once really and I found that rather scarey! I sometimes feel like I'm all on my own..like I think I've mentioned before my fiance has never seen a seizure (lucky him) and I get her meds ready morning and evening..I just wish he could really understand her situation better..I sometimes wonder does he really understand what she has - Messages
- 17,355
- Reaction score
- 755
- Points
- 263
It can be very hard to understand a seizure until you see one or have one -- and even then it can take awhile to get a handle on what has happened. The strangeness and fear wear off in time. I think it must harder to witness than experience sometimes. For me, since I am unconscious during the event, it doesn't bother me. Knowing that I've had a seizure bothers me, but actually having one doesn't.
mlbandura
New
- Messages
- 83
- Reaction score
- 0
- Points
- 0
I think he understands. Men sometimes have a different way of coping with things than women do. We tend to be more emotional and put our feeling right out there as where men can be more reserved. I see it in Lukes dad a lot. It may help if he went to some of the appointments with you if he is able. I am trying to get his dad to go because I think it would really help him get a better grasp of everything. There are times when I feel like this is all in my head and I feel like people are looking at me like I am making his seizures up even those who have seen him have one.. big denial going on with them! Just keep being the wonderful Mother that you are and keep doing what is best for your Daughter. That is all anyone can do. Good Luck!
neurologist
Today we saw the neurologist who was very happy with Jessica's development he said that the meds she is on will be stopped in a months time and IF she doesn't have any seizures in between then she will not start on any new meds
He did however notice that she favours her right side more than her left..this evening I gave her a work out using the left side more.. I had her on the floor and her head seemed to get stuck on the right though this wasn't a seizure as her eyes moved normally..even when I picked her up and attempted to put her on her left side her head was still stuck on the right this went on for a while but then her head seemed to "unlock" and moved again normally..I also noticed today that she favours her right hand..she has now started to touch objects but normally only with her right hand..the left hand does move aswell though! Has anyone else had these kind of experiences?
Tomorrow I'm going to chat with the clinic about all this..she might need some proper excercise plans to help the lefside get stronger? Most seizures have been more to do with the left side then the right!
Today we saw the neurologist who was very happy with Jessica's development
he said that the meds she is on will be stopped in a months time and IF she doesn't have any seizures in between then she will not start on any new meds He did however notice that she favours her right side more than her left..this evening I gave her a work out using the left side more.. I had her on the floor and her head seemed to get stuck on the right though this wasn't a seizure as her eyes moved normally..even when I picked her up and attempted to put her on her left side her head was still stuck on the right
this went on for a while but then her head seemed to "unlock" and moved again normally..I also noticed today that she favours her right hand..she has now started to touch objects but normally only with her right hand..the left hand does move aswell though! Has anyone else had these kind of experiences?Tomorrow I'm going to chat with the clinic about all this..she might need some proper excercise plans to help the lefside get stronger? Most seizures have been more to do with the left side then the right!
KellyD
New
- Messages
- 281
- Reaction score
- 0
- Points
- 0
Hi Tase37. I can relate to how you are feeling, my son was diagnosed at 9 months of age. It was such a shock and extremely scary as you know. I think I spent most of the months that it took us to get them under control on auto pilot. To this day I have no idea how we survived it but so far we have. Aiden is 3 now and just starting to come of his meds after just over 2 years seizure free. The best advice I was given was to stay as calm as possible, which is so difficult but the last thing I wanted to do was pass any of the panic I was feeling on to him. It would be scary enough for him without waking up to a stressed out mummy. I know I haven't said anything extremely helpful (sorry!) but I found great comfort in this website and the many people who knew what we were going through. It was very reassuring to know that we weren't alone, even if the support was on the other side of the world! I'm more than happy to chat any time you like. It's great the dr is happy with Jessica's development and that she can come of the meds soon.