How do you cope with ongoing condition?

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Hi. My DS age 9 has just been diagnosed with a childhood epilepsy. This has come from nowhere and the result of 3 seizures in 8 days. I am constantly on edge, feel anxious all the time and particularly before and after his bedtime. The seizures are most likely to happen as he goes to sleep and could happen when he wakes up. We don't know when a seizure will or won't happen.

He is now on medication but it will take time to get the dose at a level to control/stop the seizures.

My question is how do those of you with similar or other on going conditions in your children cope. I know we are still in shock but will it get better to deal with and when did that happen for you.

Thanks for any support you can give me I just don't think I'm doing a good job at coping at all.

My DC was diagnosed with epilepsy aged 7, and I remember the tension and anxiety that you describe, especially at the beginning. There were some seizures whilst the medication was tweaked to the correct dose, but once it was there were thankfully no more fits. They were on medication for five years but have just been successfully weaned off. So I know it is hard in the beginning, as you say you are probably still in shock, but it will get easier once the medication starts to control things. Feel free to PM me if you want to vent or just a hand hold. Epilepsy is shit but hopefully your DS will still be able to live a normal life.

Thank you so much for your reply that is good to know. And tension is the right word. I think we've just managed day 5 without an episode which is the longest we've gone since it started. I am anxious by nature although now I wonder what in on earth I found to be anxious about before this. Nothing else seems worth getting worked up over. But probably as this is all consuming at the minute. I just want to fast forward to being medication controlled but time is going so slowly.

Hi, just wanted to say I used to worry about EVERYTHING until my daughter started having seizures. I had to give up work as it can all get too much. Don’t forget about yourself, do you have support op?

Me too. I used to worry about every single ailment until my daughter became critically ill. I now know each day matters and each tiny little ray of sunshine is special. Hold on to the little positives each day and you will see that you will come through this stronger. Sending 💐

The first few years will be an adjustment especially if there is tinkering with medication. Eventually it will become part of your everyday life and the adjustments you make won't become so noticeable as you'll do them automatically. You will wrap your DD in cotton wool in the beginning but you will need to loosen this otherwise your DD will rebel and possibly put themselves in more danger.

FLOSSIE44 what a lovey message, so true.
CAKEFORM stay positive, you can get through this.

Make sure you take time to look after yourself. I ended up at breaking point before I realised the importance of that, there is a lot of truth in the saying “you can’t pour from an empty cup”

Find support groups, talk to people, ask for help.

Have you tried the Epilepsy Action helpline? You can speak to one of their advisors, I found them really good and the first time I phoned I just cried down the phone and they were lovely and reassuring and made me feel much better.

Well done on the five days seizure free, it might be that the medication works straight away and the doses don't need adjusting and he will be fine from now on.

Is he back at school? I found school days better as although I was worried something would happen, I knew I could not physically watch them the whole time like I was doing at home. My DC found that a relief too, it was quite suffocating for them at the beginning to have everyone fussing around when they desperately wanted to carry on like normal.

Thank you for all your replies. It's a relief just to know I'm not the only one finding it hard. My family have been good but they live a long way away so immediate support isn't easy come by. I've had people tell me I need to be strong for my DS and I am doing my best. DH is too and we're doing the bedtime shift/watch together so that helps. He is back in school and I do get relief that way as you say I'm not watching then and get chance to breathe a bit more freely. I'm trying not to smother him but it's hard. I'm frequently calling out to check where in the house he is and we've temporarily dropped most of his extra curricula stuff like swimming club which he was doing 3 times a week. Evenings have just disappeared as from bedtime starting at 7.30 for him and my 7 year old it's then watching him. At the moment I'm in the room with him whilst he goes to sleep. His choice. He's anxious at bedtime.

That's good to know the medication can help sooner rather than later we're only on one third if the dose he needs to be on. It steps up over a three week period.

I just feel like I'm not strong at all and all the what ifs flood my brain and terrify me. Yet I know others deal with far worse than this. I'm functioning through it but it is on my mind constantly.

Thanks again.

You are doing your very best for him, so I think that you are strong (be kind to yourself). Have you thought about looking into mindfullness? I haven't done this in a big way, I simply read a library book, but I definitely find that moving away from unhelpful thought loops helps me. When I get overly worried I try and spot it, tell myself in a stern inner voice "what good is worrying going to do" and then keep up the sternness "that won't help" "what's the point in thinking that" as the 'what ifs' keep popping up. I try and focus on the now, get out for a walk, do something else etc. Perhaps when he is in school you can look after yourself somehow? It is very hard when you are in a storm but If things settle down, you will too. Trust in what the Drs are doing and that he'll get there. (ps my DD has a rare brain disease so I think I get where you are)

Name changed as it could be outing for me. Epilepsy is just one portion of an overall undiagnosed condition for my DD. I don't think you ever feel as sure of things and settled again, but you can put things in place to ease the anxiety.

We have rescue medication and also a 24/7 Nest camera which records my DD's cot bed and keeps the video for five days. It alerts both of our phones if she has a big tonic clonic seizure at night, plus we still have one of the breathing sensory pads on her bed.

Even with all of that I don't think you ever put them to bed and feel settled. Driving in the car sometimes she will make a funny sound and I'll turn to check if she's having a seizure. Her epilepsy isn't managed yet, lots of different types of seizure still going on but remembering that it could always be worse I find helpful.

Thanks Choc18. That's kind of you to say. As we've moved more days from the last episode (8 days now) my anxiety has dropped a notch which is good. I couldn't stay at the level I was at before. Interesting you mention mindfulness as have tried apps on my phone previously but not since this news. I do keep trying to tell myself though that just because I have a thought it doesn't mean it will happen and I think that has helped as my thoughts kept going down a too negative path.

Sorry you're coming at this too with your DDs condition. Sometimes things are just not fair.

Thanks for your reply SeizureParent1. We are on baby monitors but just sound ones. As and when I feel we can get downstairs after putting him down I think we will go for a video one too. He's 9 though so a bit of a balance between monitoring and not taking his privacy.

It's interesting to know that you've found that same thing about not being able to relax the same. I used to think boys in bed job done for another day and relax but now there is no relax and the fear that the hardest but could start at bedtime. That said the more days we have got away from his last episode I have felt my anxiety drop to a more manageable level. Although I know it will go straight back up with another do.

Hope things get better for you too.

One of my twins was diagnosed with a rare illness shortly after birth. When he eventually came home at 2 months old, he got seriously ill within a week and was readmitted.

I spent probably the next 8 months as a neurotic mess. Any slight symptom, any slightly low (but still fine) blood sugar level, any sniffle... I was a mess.

They’re 2 this week and now I cope much better, even with more diagnoses added to the pile. I calmly handle blood sugar levels that would have panicked me a year ago. They say it becomes the new normal and that’s absolutely true.

Oh sinkgirl that must have been so hard for you. I hope they are doing ok now. Interesting you talk about adapting to a new normal. I've been so overwhelmed by the anxiety levels and thinking I can't cope with them this high but maybe if they drop a bit because that's normal that would help. I can't imagine getting upset over half the things I used to get bothered about. Thanks for taking the time to share.

DS1 has cystic fibrosis. He's 28. I don't think about it constantly, if I did I would have gone mad years ago. Now, it's more we visit him than he comes out with us, because he's pretty much housebound.

Thank you :) One of them has had ongoing and new issues diagnosed (vision issue, brain damage and now being assessed for ASD or some genetic disorder affecting development). I have struggled so much with anxiety and it’s affected all parts of my life (eg my anxiety is really about him but it will be running out of milk or forgetting to do a menial task that will push me over the edge).

I suspect dealing with something like epilepsy is similar to his blood sugar issue, in that everything can be fine and then it can strike out of nowhere and you feel a lot of anxiety about when it will happen again.i have adjusted to this much better now but did really struggle with this for the first year or so.

I hope they can manage it well with medication and things calm down for you - it does seem insurmountable and impossible at first but I promise you will find a way to manage.

Does your hospital have a child psychology team? The hospital I work at does. They look to support not just the child but the family too. They can help with anxiety, phobias and generally just getting use to the new normal that can occur with a diagnosis

My son (11) has cystic fibrosis which was diagnosed at birth. It was a shock / trauma and took at least a year to get over the diagnosis.

You eventually (no time limit) go into a 'normalisation' mode where your child's illness is normal for them.

We have ongoing medication / hospital appointments etc etc but it has become part of our life.

I don't think about it every day, maybe once every couple of months it hits me hard when I step back & think about it but day-to-day life tends to take over and you just muddle through - in the same way you do with kids without extra needs - sometimes my perfectly healthy daughter sends me to distraction and I look at my son and think how lucky I am that he's the easy one!!!

Best of luck as you and your family come to terms with it all.