Or is there a solution I can't see?

[Emeraldiisland]

Two weeks ago my 16 year old DD had an unexplained seizure. She is okay now but the hospital advised she is not to be left alone until she sees neurological team (5 month wait).
Admi we don't stick to this all the time, as she obviously doesn't sleep in our room or anything but in the day either me, DH or eldest are with her.
She wants to go to college in September and DH said to me I will have to take her and pick her up every day but I don't think I can. To start with it's a round trip of 90 minutes so 3 hours a day and second what do I do with my son?
He's starting school on a very reduced timetable but I can't get him in for 8:45 and get my daughter to college for 9. I mean l could drop her off early but I'd probably have to leave at 7 and drag my son along (totally ready for school) to make sure I'm back in time for school.
DS will be shattered and that leads to huge meltdowns (he's severely autistic)..
I will then have to take him with me to pick her up. I can't leave him at home as DD1 and DH will be at work.
The only solution I can see is to defer DS until January and pray she's seen by then but I fought so hard to get him starting in September and tbh he needs some routine and since leaving nursery he's become quite clingy so I was hoping school would help in that way. He's going to be at a disadvantage when he starts school due to addional needs but think he'll be at an even bigger disadvantage if he starts when the class is established, they all know the routine and have friends and he is new and on his own.
Uber isn't going to be practical until January as the cost will be too much and obviously going by bus could be a risk if she has another seizure.
At the moment options seems to be
Take her to college super early
Risk her getting the bus
Defer DS (which is easiest but I really really want to avoid).
I don't think there's an answer but if anyone can think of something please let me know.

Do the College know? Because they may be unwilling to let her start this year or need to put special measures in place.
My daughter went to a Land Based college and it would probably flag up H&S concerns on a lot of courses there.

I agree with this, I think it's about building her confidence back up. You cannot go everywhere with her, and it's not needed - she just needs to be safe if (and that's an if at the moment) she does have another seizure. So her going off walking out on her own in the countryside no, her taking a bus to college where there's other people around, OK. I think the medical support bracelet is an excellent idea, as well as contact info on her phone and on paper. Also making sure her phone is charged and what to do if she does feel ill at college/on the bus/in the street etc. I think a lot of the suggestions, eg doing courses online, are not needed at the moment and actually will do more harm than good (loss of confidence, loss of social interaction, mental health decline). I think you want to keep things as normal for her as possible with adjustments to keep her safe where needed. If this is a one off, which hopefully it is, you don't want to have essentially kept her home for 6 months. If it's not a one off, then she needs to learn how to deal with them while still living her life as close to how she wants as she can.

As someone with epilepsy I would say if she is comfortable getting the bus then she should do it. You don't want it to be something that defines her, obviously it is a big change to get used to, but you also don't know the frequency of it, she might not have another seizure in months or years so don't let the possibility she's get from college pass her by.

Medic bracelet is a good idea, sitting on the end seat towards the front of the bus, finding out what triggers it, was she stressed or tired at the time?

Some GPs can prescribe starting dose of epilepsy medication as referral time is long

Good luck!

Assuming she would be using public transport to get there she wouldn’t be alone? If DH wants to push it point out she’s at greater risk overnight when she’s alone for a prolonged period than sat on a bus.

If h is so concerned why doesn’t he take her before work ? or are the kids just your responsibility ?

My DD has a medical condition that means she could go into crisis and need to be administered with an emergency injection. She will be getting the bus to college which is about 40 mins each way (it’s not far it’s just the bus does a long route round!). She has a medic alert bracelet and is registered with them and the bracelet has their telephone number, her reference number and main medical conditions on there.

The college are fully aware of the situation and what needs to happen if she does go into crisis and she keeps the injection with her at all times. It is difficult but that is what I would advise to do.

I agree with there others that trying to give them independence is important. We have really tried to foster that with our DD and I’ve made many trips to the college on the bus with her to build her confidence up.

@Emeraldiisland have you asked your DD how she felt just before the seizure? Some people have some kind of warning signs beforehand (although some don’t of course).

One of my DC had several seizures during their teenage years. I was also told to not leave them alone (which I said wasn’t possible as a single parent at that time). I borrowed the money to pay for a private appointment and DC was given treatment which helped.

Your biggest problem is that your husband is being very unsupportive and unkind at a time when his children need him most. Is he always a selfish bastard?

I would check what the definition of not being left alone means. As others say, she will be on a bus with others and in public, so with a medic alert if she had a seizure an ambulance can be called and you phoned. Not much different to you doing that.Good luck.

I think it's a DH problem if he's effectively blaming OP if DD has a seizure on the bus but not offering to help with transport.

It's not just her problem. He's being unfair.

@Emeraldiisland ive just had a thought maybe an Apple Watch might be good for alerting you? Sometimes they have apps that can alert a designated phone number in those sort of situations

I would go back to the specialist team who gave you the advice that she shouldn't be left alone and clarify what level of supervision they mean. It's not practical to watch someone 24/7 and as a teen that would feel very intrusive.

Make a plan that gives her as much independence as is safe. Being over protective could really dent her confidence and make her unnecessarily anxious about everyday life. If she was diagnosed with epilepsy she'd still need to make her way in life.

Would she actually be alone if she was getting the bus to and from college? There are things you can do to mitigate the risks, she could have her location on while she makes the journey. You can get running watches that send an alarm to a nominated person if someone falls, medi alert bracelets to let someone know her medical history etc, ask her to tell friends what to do if she does have a seizure, make sure her college know etc. As you have already pointed out, if you're driving with your other high needs kid in the car you aren't necessarily the best person to help her if she does have a seizure.

Find the name of head of neuro team at the hospital - find phone or email.
email this person with short explain.
Waiting for an appointment as X yr old has had a seizure.
Is it ok for her to resume “normal” life - take bus to college?
Or should we wait until see Neuro team?

Follow up til you get a response.

5 months' wait? Insist on a scan to rule things out - only then will you be able to decide property what to embark on and how. A colleague's dd had transient teenage epilepsy or suchlike and she went to A&E an embellished - said several seizures, not one, fainting, etc. and they gave her a scan, having hospitalised her for 2 days first. At least she knew what the problem was. Obviously if it were a boil on the bum or zits, I would not recommend lying to A&E, but this is a totally different matter.

Aside from thinking it’s down to you as you're the SAHP what does DH think is the solution. In practical terms?

It’s unreasonable for him to abdicate responsibility on the basis you are the stay at home parent.

• you cannot be in two places at once
• your DD cannot go to another college
• your DS will be at a disadvantage if he delays school.

that leaves your DH. This is a time of family crisis.

By not being alone, did the hospital mean being with you? I would have thought the risk would be her being somewhere where she could fit and no one would know.
Surely a public bus is the opposite of this. Can you ask the consultant?

As others have said I think this is back in the specialist teams court to define the level of supervision. If this was meant as a casual 'make sure she's always with someone and not for instance camping on Everest' and you've taken it as 'she can never leave my side' you're making some very damaging changes to your family life. If they insist that the supervision required is that high, then your DD either needs to take public transport or defer a year. It's not fair on your DS to delay him as the effect is so much greater in this age group, especially as, as you've said, her friends are not going to the same college so a social split was already on the cards. Just my opinion

Is the college on a bus route? Could you drop her at the nearest stop on the route? Bus drivers are used to dealing with medical emergencies. So as long as she has a medical alert bracelet on she will be fine.

Does primary school have a breakfast club? Yes a slightly longer day when your DS is starting on reduced hours but it would mean both get to education on time.

I think I would be inclined to let DD stick her original plan of getting the bus. But perhaps make a GP appointment and talk it over with them and your DD about what should be done in the event of a seizure. Get a bracelet.

As you say if you are driving you won’t be an immediate help and may need an ambulance anyway. If it happens on the bus or at college an ambulance will be called.

It’s possible she doesn’t have another seizure in the near future and she may be putting her life on hold unnecessarily.

Hi, I see that the reason not to defer her start at college is because she isn’t keen and doesn’t want to be left alone. However I’d give this option some serious thought. Once you have a diagnosis and medication all of the options suggested are really helpful about how you support her and she is likely to feel much more confident. I don’t think it’s a problem at 16 to defer for a year and as you are a SAHM you can build a positive routine together and build in some activities for her that are good for her. If she doesn’t want to be alone she can accompany you to pick up and drop off DS. And I’m thinking that if she’s worried about being alone in this scenario, is she going to cope with college and the journey. It really won’t do her any harm to wait for a year - and also if the answer ends up being to move as some have suggested, then you have time to sort. This is by no means easy to resolve as you’ve said, you are in a tough spot but you sound like a great mum.

I would write (as in print on paper and post it off) to the hospital department she is waiting to be seen by. Explain all of this and ask for advice on how long the wait will be and how much supervision she requires and any suggestions they have to minimise risk to her. In my experience as both a parent and a long time NHS worker a paper letter is still the best way to get a clear message to the consultant or registrar in the correct department to get some clear advice.

I dont give a fuck if he works and you're a sahm. He needs to step up. You've given very concerning details regarding both your children. I've no idea what time he starts work, but he needs to take your son to school or daughter to college, depending which is closest and ask his employer for flexi working or take parental leave.

If she's on a bus she won't even have a seat belt and could gis her head or her spine of she has a seizure, I belive the medical advise or staying with her at all possible times is for a very good reason.

When my autistic son went to college the LEA paid for a taxi. I wasn't automatically told so I took him initially. Ask the LEA if this is a possibility.

Thank you for all the replies. I'm going out now but will look through the replies later and see what has been suggested. Thank you so much everyone