Anxiety over DS health

[Worried]

My DS was recently diagnosed with epilepsy. He has had 3 seizures, all of which were extremely stressful and resulted in ambulance calls and/or paniced rushing to A&E. The seizures have all happened at night while he is asleep. He was put on medication three weeks ago and we are awaiting an eeg. One of the side effects of the meds is that he is twitching and jerking a lot in his sleep. I have been sleeping with him since the seizures started. During the day I am fine and we live our normal lives, but as soon as he falls asleep at night my anxiety levels sky rocket. The twitching is freaking me out as I keep expecting another seizure and when I'm not lying beside him I'm worrying that he might have one with me not there. I can't go on like this as I'm not sleeping properly and I have a history of depression and anxiety which took me years to get under control. DH sleeps with him some nights to give me a break but I still can't sleep worrying. I'm going to have a chat with my own doctor next week but can't go til Friday. In the meantime can anyone please offer me some advice? I know there are parents on here with far sicker children. How do people cope? I have a constant tightness in my chest from fear and I can't seem to talk myself down no matter how much I realistically tell myself the chances of a serious complication are tiny. Thanks for reading.

[Overjoyed]

Oh my goodness you poor thing. That sound very frightening. Sorry I have to experience of seizures. I think going to your doctor is the right thing to do. Hugs xxx

[Polly13]

Oh gosh worried I don't know what to say, sorry to hear about your ds diagnosis but I think what you are experiencing now is pretty normal, when dd2 was really unwell I had a constant pain in my stomach and her being sick was my first thought, last thought and every thought in between every day for a long time. My dd doesn't have epilepsy but she ford have a chronic illness and it was very overwhelming for a long time and the way you are feeling now was exactly the way I was, but as time goes on it does get easier and you learn to live with it and you will find that gradually life returns to some kind of normality. I think you should see your gp and tell them how you are feeling, I didn't do that and definitely with hindsight I think it would have helped me through the early days. Hope you feel better soon

[jagg]

I know this no comfort at the moment but my brother had this, nocturnal epilepsy, and he grew out of it eventually. He was on medication for a few years, but eventually weaned off it and he's grand now. It started in puberty with him, or maybe earlier and we didn't notice until he over to a bedroom next door to me (I'm a very light sleeper). I hope your ds will be ok.

[DiscoGirl]

Sorry to hear you are going through this, hopefully your doctor will be of some help ,hope ur ds will be okay, take care x

[Twin mum+1]

I know this isn't much help now but my friends DS was diagnosed at 5/6 about 2 years ago, it seemed to be at night as well. Recently they got a special dog, she's trained to sleep with him and she goes and wakes the parents if there is a problem. It could be worth putting your name down on a list?

[Kissyfur]

It sounds like a very normal reaction to a stressful situation. I know it sounds glib but have you tried breathing exercises or mindfulness apps? they are lifesavers imo and when you think you don't have time to try them is the time you need them most!

[ellie3]

I think how you are feeling is very normal, which sometimes in itself is a help to know, that it's not just you. I found i dropped in the anxiety, stress levels every couple of days, weeks and then months. I used to think after ds's strokes i was ok, back to normal then a couple of weeks would pass i'd realise looking back i was still up to ninety but i'm ok now and another couple of weeks later the same thing. Can your dh do every second night sleeping with your ds? Definitely talk to your GP about how you are feeling. And possibly your ds's neurologist too, they may be able to offer some perspective which may help ease your worries. Take care. It's a horrible, horrible way to feel.

[Carmella]

Of course you are going to be anxious about this. Sorry for the long ramble here but here's what happened to me. My dd got very sick as a baby, she got pneumonia a few times and ended up in hospital. one time it turned very serious, it was touch and go, she got sepsis, and had 2 fits one day and i cried all evening after seeing her like that. But she came out of it and recovered well thank God.

However, a few weeks later I read an article in the Sunday times magazine about a girl heading off to college, and she and her mother had written an article together saying how sick she had been as a child, how she spent time in hospital and how the mother thought she was going to lose her and the 19 year old still got flashbacks etc, it turned out to be a very minor illness and I realised that what myself and daughter had gone through was huge, massive and I needed to acknowledge that. I went to speak to a councillor, we have them at work, and I took a few months off work and stayed with my daughter and we both recovered from it.

What you have been through is horrendous, I don't know what you were thinking when your son was fitting but I imagine the worst. You are in total shock and that's not something you can just get over, it will take time. Of course you are anxious, I still get anxious when my daughter gets a cough and this is years later! If I think about her having the fit I get a pain in my heart.

You need time and proper medical guidance to reassure you about this, nothing anyone says is going to delete what you saw, this will all take a lot of time. Of course you are anxious at night, you are doing amazingly well. This is a huge big deal and you need to reach out and get help from epilepsy ireland, from your gp, your family and accept that it might take a long time before you will stop worrying, and start sleeping, but you will. Yourself and your son will find your way but what you are feeling now is totally understandable.

Do you work? Can you get some time off, do you have an employee assistance programme? Is there anyone you can talk to about this?

I am sorry again that this is happening, the stress you are feeling is totally understandable and I just wanted to wish yourself and your son all the best.

[Penny]

Well put Carmella. It is so traumatic seeing your child so sick. Are you part of a support group so you can just talk to someone who is going through the same thing. If you work you could apply for carers leave.

My son is very ill at the moment and I am haunted by it all. The day the doctors told me what was wrong, the morning I thought my son was going to die, watching him endure months of treatment. It's the first thing on my mind when I wake and the last thought every night.

I have found mindfulness and mediation brilliant, am part of a support group and made a great friend whose son has the same thing. Little things are helping and I've spoke to my GP as well. We get good support in the hospital and I can ring our nurse with any questions I have. There are days I can't cope but I just try to ft through them as best I can. A good cry helps a lot and a bit of exercise.

Do you have a nurse from your sons team that you can talk to? Write down a list of questions and your fears and talk them through. Don't be afraid to breakdown. That was my fear, that I wouldn't be able to hold it together. Realised that I had to fall apart and I had a really awful week about a month ago. But I just couldn't keep going, trying to keep it all together. I always have that tight feeling in my chest but it's going to be a long time before that goes and I know there's nothing I can do about that but learn to try to relax and to learn when I need help.

But I need to go for counselling as I know I won't get over this myself. I haven't been able to go as it's too hard to find the time at the moment but am going to go in September.

You need sleep though, the lack of sleep makes everything seem worse. I took sleeping tablets for a few nights and the difference it made. I was in a much better place a few days later and felt able to deal with it all. So definitely go and see your GP and if you can go on Monday, don't wait a week.

[Jezki]

Hi

I hope you are keeping well since your last post.

My son was recently diagnosed with a rare type of epilepsy. We too are having a tough time. I average about 3/4 hours a night sleep. I do most nights as husband works. I reduced my hours and will be starting Carers leave shortly.

If you haven't already, contact Epilepsy Ireland. They are really excellent. I attended an information night for parents and found it very helpful and good to talk to other parents.

There is a Facebook site called Kids with epilepsy Ireland. I find them great for information & support.

What hospital are you attending? I find the epilepsy nurse specialist brilliant. If I have any queries I just email or phone.

Having said all that there are days were it all gets on top of me and becomes a vicious cycle because the lack of sleep makes everything worse.

If you have any questions please feel free to ask. It's all new to me too but if I can help in anyway I will.