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Benign Childhood Epilepsy and travel ... Help please(8 Posts)
DS just diagnosed after a tonic clonic seizure. We are part way into a very long period of travel (think years, not weeks). Our diagnosis / treatment will take us through many countries, many of which aren't English speaking. I am currently speaking with doctors in a language I speak very poorly. Please help me think about what I need to know from them (we are here 3 more weeks), what I should be thinking about with regard to travel planning, and what I should be thinking about with regard to DS. The docs here have prescribed daily meds plus a suppository if he has another seizure lasting longer than 2 mins.
I'm so sorry, that must be terrifying. My daughter has epilepsy but we are at least on home turf. The U.K. Epilepsy charities are v helpful, might be worth talking it through with them. I think what I would most need in your situation was a lead neurologist who spoke English, that you can contact for advice whenever you need it. You can often do video consultations etc. My daughter had EEGs, MRI, endless blood tests initially but subsequently it has all been fairly hands off so could equally well be treated distantly. Is coming home temporarily until you are on an even keel an option?
Lots of questions spring to mind which may or may not be helpful: Can you come home for a short time then restart your travels? Are you confident with the diagnosis from the local hospital?
Would the embassy be able to put you in touch with English speaking medical help? Or is there a country near that would have healthcare that would make you more confident?
Is it the level of health care where you are or is it just a language thing that is the concern?
Ok which anticonvulsant has been prescribed? Some of them require blood test to check things like kindey function, blood levels etc.
How are you going to get precriptions when you "move on"
Is the dose set or will it possibly require monitoring (it can take a long time - sorry but to give you a realistic opinion to find the right doseage or combination)
Status eplieticus (long seizures) can cause problems it's good that they have given you emergency meds - you need to ask about the emergency protocols ie it's normally not just in the case of a long seizures but if your dc had 2 very close together.
Other things you should probably ask.
Risks or signs of partial or partial complex seizures ( things like not being very aware, chewing, losing track of time, sleep walking when awake or not perceiving danger)
Nocturnal seizures (and how to safe guard against harm) e.g. where is best for dc to sleep, not using bunk beds etc.
Stress factors than may trigger a seizure e.g. Lack of sleep, heat, etc.
When medication should be taken - particularly if your crossing time zones. Some meds really need to be taken at the same time eg 8am irrespective of the host countries time (iyswim?)
I don't know the age of ds but some times meds need frequent checks / changes during growth phases.
I moderate on a UK epilepsy forum if you want any more information please feel free to pm.
Sorry your going through this it must be very stressful particularly if your communicating with a language barrier.
Thank you all.
We were released from hospital today and it has taken a while to get to find an open pharmacy, and to get the DC settled and into bed. It's been a steep learning curve the last day or two!
I am not 'concerned' re the level of healthcare here; it is a 1st world country, but i've been in this country before when a loved one had a health crisis and they were very quick to administer drugs / want to perform a major operation. The drugs caused a major problem (they were contraindicated and should never have been administered), and the operation which would have caused lifelong mobility issues was not undertaken only because we sought alternative advice (and time healed all wounds, so to speak). I'm partly concerned that we have been thrown into the world of meds which may not be necessary; though tbh i suspect it's a better case than not being given them at all and wondering if we should have them... We have rectal diazapam in case of prolonged siezure, and twice daily sodium valproate (pls forgive spelling; i'm translating, possibly not entirely correctly). I cannot fault the care we have recieved; optical checks (ok); blood & urine tests (results not advised yet); eeg (neurologist on the spot gave 'abnormal'; looks to be BEC, but will confirm with MRI).... drugs given immediately; on Tuesday we can call to book the MRI; hopefully this will be before we leave the country, but we may need to do it privately in the next country. We will definitely need to test bloods for toxicity / medication levels in the next country, but i didn't realise we might need to do it as an ongoing thing...
Interesting re stress factors; i'll have to ask at the next appt.
Anything is possible (re going back to the uk to get tests, etc); however i have another child with complex food needs (allergies), so harder for me to leave him and go off with the other DS, and we have already booked and paid for our forward travel / accomodation until at least November (6 of us travelling, so not cheap to abandon it).
It was a nocturnal siezure and we have been told that he needs to have naps during the day and not to have 'big' days that tire him out and make him sleep deeply - ie no days of prolonged brain activity (eg lots of learning / new stuff / computer games etc). Hard to do when you are in a new country and just leaving the house is all 'new' learning!. Trying to retrospectively figure out if (or rather, how much) he was having absence seizures... and of course, trying to define how often was seizure, and how often just an active boy.
Sorry for the long waffle.... I think i'm just trying to juggle all the thoughts in my head/ possible needs / considerations i might have missed, etc .... Even little things like 'can he be alone in bed while i type this email' are causing more hassle than i'd like (dp doesn't want him alone for a second).
i really appreciate all your thoughts/time, particularly all those prompts, innocent; i think i'll put together a list of questions that i can have translated before our next appointment, then if we can get an appt before we leave i'll be prepared, and if we can't get an appt before we leave, i'll be able to look elsewhere and see what we can do distant / private (i should know by wednesday).
Ok few things from your update. Sorry if any of this has already been covered. But od rather cover things off than miss things when you've have a new diagnosis.
I'm not sure how old your ds is so some of this may or may not be relevant. If he has only had noctournal seizures there are in some ways better because of the time of day (less risk factors when I'm bad than for example crossing the road)
The recommendations is to not leave a newly diagnosed person alone in possibly dangerous situations so to be clear. (Untill there seizures are stable)
So don't leave alone in the bath (shower is safer in case of a seizure)
Don't leave alone in or near a swimming pool, beach, water source in general
Don't leave alone near stairs or things that could be fallen down
Don't leave alone near roads.
Don't leave alone near boiling water
All pretty logical.
With regard to rectal diazepam assuming it's the pippet type id you need to use it if possible elevate ds bottom slightly and remember to keep the pippet squashed so the medicine doesn't go back into it.
Sodium valporate is an older style of drug ie its been around for years, this is good it is avaliable everywhere (normally with a prescription obviously) it is well know and any side effects, contra indications etc are well known.
Start keeping an seizure diary. Record Everything what he's eaten, what he's done, mood etc. It will help you pin point triggers. Triggers vary from person to person but some of the more common ones include.
Certain foods (eg caffine, sugar)
Heat (eg over heating)
Just to be clear nocturnal seizures refer to a seizure than happens when asleep so it can happen during day time naps too.
Other things to remember seizures are bloody knackering (i say this an an adult with a epliepsy) depending on how the effect ds he may need up to 3 days to recover after a tonic colonic seizure.
Absence seizures or partial seizures take many forms depending on where in the brain is effected. What you may see is really too long to list here.
If you want to ask anything or talk about anything please feel free to pm.
DD had BECCTS. It started when she was 5, and she has been seizure free for 4 years. She is now 14. All her seizures except one, her second, were nocturnal. Actually she had a second daytime one, the one induced in hospital for EEG. Because of that there was little opportunity to observe them, and we never had to administer the pessary.
You have had lots of advice here. But I wanted to pop on to say that the one thing I would be concerned about in your situation was that whenever DD had a growth spurt, her medication needed increasing. Sometimes it wasn't obvious to us that she'd grown till she had another seizure and we weighed/measured her. Since you are happy with the medical standards in the country you are going to/are in, I'd just add to be sure you have regular and speedy access to the consultant who can alter the medication.
Good luck to you all, and I hope your DS grows out of it like DD did. We had been told there was a good chance she would, but it was both a surprise and a massive relief that she did.
Thanks again, innocent; DS is 7. He had a nocturnal tonic clonic, but it appears he's had some absent siezures in the past in the day. Hard to tell how many and how much is just a little boy who is often 'away with the fairies'... Only one that we know of specifically, because it appears the teacher was telling him off for staring (with open mouth, but DS couldn't help himself). I don't have a feel yet for whether there are likely to be more, and how frequent, particularly given the addition of meds. I have to say, I hadn't noticed how much he'd grown just recently until they weighed him at the hospital and he'd put on an extra 1/3 of his body weight in around 6 months. I thought they'd got it wrong! But in terms of potential triggers, we've got growth, heat, more sugar/carbs than normal, emotional changes having left all friends/family/house/school behind and lots of 'big' days out in new cities to stimulate the brain and tire the body. We couldn't have been much worse - big rethink required !
We are staying walking distance from the hospital, and they have kindly left the file 'open' for the duration of our stay, so if anything happens we can go straight back and be seen there, which is reassuring. We are getting the files properly translated so that we can forward them to an english speaking consultant once we move from here (who will likely become the person we try and keep in contact with regularly).
Does anyone have any experience of the monitors? DP wants to get a bed one, I'm worried that with new beds all the time we'll not be certain if we have got the sensitivity set right for the mattress, etc... For us, the magic item would be a watch with an audible alarm we could hear, but they seem to be phone linked. He's a bit young to carry a phone all the time, and we may not have our phone in reach/connected in all the countries we are in.
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