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.

I dictated my message and reading it through now it has many errors, but you get my gist.

Is there a reason why you are thinking of prioritising DD starting college as planned over DS starting school as planned? Both your children have disabilities that mean they need support and that at times may restrict what they are able to do. Could you consider other possibilities for DD? Deferring her start at college or an easier to access school? Because the journey there is only the first hurdle for her. Will she manage the college day without support?

Can you ask your GP for a private neurologist appointment? It'd be expensive the first visit but the neurologist can order all the test to go through the NHS to ascertain if there is abnormal activity in her brain. One more question. was your daughter given a full blood test after the seizure?

Could you afford for her to see a private consultant much sooner?

It's different being in college vs a bus. College will be made aware of your dd condition. They will look out for her.

A bus is full of strangers. And yes there will be some who would help but I don't think I'd risk it. Agree with others your h is an issue. It can't all be on you.

Options could be to see if ds school and dd college can come up with a timetable that logistically works. If ds has a reduced timetable then could he have a later start/earlier finish? Or could your dd have a later start timetable?
I know that we would accommodate this by moving dd into a different class or permission to miss first class/ registration.

Over time then dd will make friends and could share the bus journey with someone she knows/ trusts.

God your DH sounds like a dick, sorry but just because he has a job doesn't mean he can put all the responsibility on you. In a similar position (in terms of having to get the key ds to different places when younger) my DH changed his work hours temporarily when needed. Although she should be able to get the bus, she won't be alone and you can get an alert band.
https://www.bestproductsreviews.co.uk/seizure-alarm-bracelet?targetid=dsa-41777035096&matchtype=&device=m&campaignid=15548184439&creative=569168980234&adgroupid=131395587735&feeditemid=&loc_physical_ms=1006838&loc_interest_ms=&network=g&devicemodel=&placement=&keyword=$&target=&aceid=&adposition=&trackid=uk_all_top_11_2&mId=407-132-4411&trackOld=true&gad_source=1&gclid=CjwKCAjwiaa2BhAiEiwAQBgyHpi5SP0buB06nUU3FZ2Wd0vGjb090rASJtEQTPDiEanULx-PDGSaQhoCPIUQAvD_BwE

She gets the bus there and then you collect her in the afternoon.

More than halves the risk as she's more chance of having a seizure when she's tired.

I would pay for a private consultation if you can - way better to get answers and treatment quickly.

I don’t think you should delay DS starting school. If anything should give, your DD should defer her course although I understand why she might not be keen.
You said you are a SAHM and it looks your DH thinks that anything related to the children is for you but I think he needs to step up so you can work as a team. He may work out of the home but this does not absolve him of all parental responsibility and you can’t be in two places at the same time. I think his comments that if you don’t do it and something happens you’ll feel guilty are unhelpful and unkind. It’s at times like this, teamwork is needed so both your children can be supported in their different needs. It’s hopefully for a short period of time and the solution is your DH engages himself personally in what needs to be done. You are tying yourself up in knots trying to work out how to manage things and I don’t think he’s being fair dumping it on you as if it has nothing to do with him. It’s one thing if it is problematic for his job to help (but his employer might be sympathetic to the circumstances if he looks into it) but another if he is choosing to sign out of it all and put unkind pressure on you. All the best going forward, you are clearly a brilliant mum x

I’d say - if a private appointment is not possible - you may have to risk the bus .
One off seizures are common and you may never see another - don’t face 5 month of panic and stress .

If it’s not a one off you may have to be facing this for a long time and meds take a while to get right ( if at all).

If the worst happens People will do something ( most likely call 999 and get advice ) but once the seizure is happening there is little / nothing to be done but wait it out . Once it’s over if the child is wear a medi bracelet people will call you and will care for your child until you get there .

TLDR

It may never happen again
it May happen again and again so you will at some point reply on the goodness of strangers : never have the public let me down!

bracelet good. Make sure she has a wallet with contact details for you and explanation of what has happened so paramedics can read it and you as emergency contact in her phone.

bus driver will be first aid trained (not that it’s their responsibility but she will get an ambulance called if she has a seizure at least)

Also you don’t just accept a 5 month wait. Call the department where she will be seen - if you know who the doctor will be call their secretary - and explain the situation and ask them nicely, but with appropriate desperation in your voice, to call you with any cancellation.

and if there is an appointment which comes up, pull both kids out of school and just get her there.

what will she be doing at college? Who will be with her? also if they said not to leave her surely you should have some kind of night time alarm? Seems a bit strange to be so worried you won’t let her take the bus and are thinking about deferring but then leave her alone at night for hours? Also she’ll be alone at college - when she goes to the loo, who will be with her? Will she be allowed to lock the door?

maybe she could do a reduced timetable and do work remotely? Like go in for after your son is dropped off?

also your husband is a dick. You being a stay at home mum doesn’t mean he just doesn’t have to put himself out. When I had my first kid my husband was working all day until late and he’d come home and do all the cleaning because I had post natal depression and was falling to pieces and wanted to help. And then he’d do night time wakings and change nappies if I didn’t wake up. And he continues this way years later even after I’m recovered.

I have also had terrible relationships in the past so I know I’ve lucked out with him so I’m really not being smug, but I really believe we women all need to realise that we don’t have to have this shitty male attitude where it’s like they live in the 40s and women just need to do everything.

If he doesn’t step up, seriously consider whether you want to be hitched to his wagon. How will he step up if you’re sick? Or can’t do anything? Plenty of better men out there.

Unless, like someone else said he’s a policeman or paramedic or something that HAS to be there, why can’t he ask his work to start a bit late?

We don't tend to medicate for a single fit unless there's an obvious cause like a brain lesion to make recurrence more likely as many never have a further event

Op are you certain they actually said one of you rather than "someone" with her, which is the normal recommendation? So banning baths and locking bathroom doors

Check the college timetable they often have lots of free periods and start late on different days, but think your husband should be flexing his hours to help out with one

(if it was my child I'd let them get the bus and just make the driver aware and have a medic alert bracelet which states medical problems, medication and allergies on it - after all if it reoccurs all you or the driver would be doing is recovery position and 999 but obv not giving medical advice

And if at all possible I'd self fund a quicker private neuro appt

Hi OP my son had a seizure when he was 9 - we were away so off to local hospital and they did tests and all were ok - overnight stay and the consultant said that obviously anyone can have a seizure and if nothing obvious shows up to try and relax and not worry.

He did have other seizures when we returned home and eventually was diangosed with sleep epilespy - fortunately by time he was 18 he was off the medication and has been seizure free.

My point is that everyone can have a one seizure - and it is only if there are more that further tests need to be carried out. If your daughter has been seizure free since the first one and if they carried out tests and there were ok I would try and relax (not easy I know).

Tell her college and get her one of the bracklet just in case. Good luck to you all - it is horrible seeing your child have a seizure but hopefully it will just be a one off.

Few thoughts, EHCP for your DD?
PIP?
Online lessons ?
How many contact hours does she have - it's not likely to be all day every day is it?

OP, I should have explained my previous post with a bit more detail. Unexplained seizures during puberty come from either a neurological condition or a metabolic one. If the kidneys, for whatever reason, are struggling, they can cause an unexplained seizure. Often hospitals won't do a full blood work with seizures and refer them to a neurological team. They literally wash their hands with advice like never leaving your daughter alone without fully exploring if the issue is likely to be neurological by dismissing 100% is a metabolic issue through blood results.

Your DS has been unsettled since leaving nursery? So a very young child then who could perhaps continue at nursery until Jan.

And starting a reduced timetable? So fine already to miss some hours at primary school, why not ask for a late start?

He’ll be upset or ‘behind’ by starting in Jan? The former that will pass without causing him possible permanent damage and the latter? Small children have fluid friendship groups, learning a routine won’t be affected by a few months so what else would he be getting ‘behind’ in? Colouring in?

Vs

Your DD starting college. A pivotal time in education.

Who needs supervision in case she has another medical episode.

Who also will need to establish a routine, make friends and manage her mental health alongside her physical health.

All of which will be more challenging at her age vs the just starting primary school age DS.

I am astonished that people are suggesting the DS’s education not be disrupted, or that DD should be sent on bus alone.

Why is the son’s inconvenience being prioritised over the daughter’s physical health?

I would try and allow her to keep as much independence as she can. She will probably be struggling with what happened enough as it is without further disruption to her life. Get her a bracelet or necklace with details on, complete the emergency contact information in her phone and write up a card as well that she keeps in her pocket but let her travel on the bus. Help her in other ways if you can. Offer her lifts or collections to activities if she wants them, relieve stress and be supportive.

I don’t think you need to accompany her to school. I presume the doctor was concerned about her collapsing alone? There will be people on the bus that would be able to help her and call emergency services should something happen. Is it just a public bus or a college specific one?

Also if she’s 16, it is possible that there is a 17 year old at her collage willing to drive for a small fee?

Also, just some thoughts re the course. Your DD should get in touch with the college and let them know about her health circumstances and it may be they can put reasonable adjustments in place eg if lectures are recorded, can she watch online? Can her classes be scheduled over lesser days than usual so that she can travel less? Or can she attend online? It very much depends on the course and what the college can provide. They will obviously need to know about the risk of seizure so they can put things in place to deal with it if it arises. You could also perhaps look into Disability Support Allowance
www.gov.uk/disabled-students-allowance-dsa

Also, just some thoughts re the course. Your DD should get in touch with the college and let them know about her health circumstances and it may be they can put reasonable adjustments in place eg if lectures are recorded, can she watch online? Can her classes be scheduled over lesser days than usual so that she can travel less? Or can she attend online? It very much depends on the course and what the college can provide. They will obviously need to know about the risk of seizure so they can put things in place to deal with it if it arises. You could also perhaps look into Disability Support Allowance
www.gov.uk/disabled-students-allowance-dsa

Am that’s not a bad idea at all. Also I feel like she can take her a day or 2 and maybe you dd1 can help for a fee? Depends what they do for work but workplaces are so much more flexible post covid

You have a lot going on & your head must be spinning. If your DS is on a reduced time-table going in later then finishing earlier would miss out the busier times of the day which can be sensory overload to some so could benefit him greatly. This would also help you with dropping off your daughter.

DD rides the bus with a medical bracelet or she switches to a college closer to home or your DH alters his hours to run her to/from school.

You cannot and should not do it all as you are clearly also 100% responsible for your DS who has special needs and is starting school on a reduced time table.

Your DH is being a dick, btw. I hope you recognise that. Ask him how will he look at himself in the mirror if his DD has a seizure and he wouldn't change his hours which he CAN do but WON'T.

No chance for a single seizure that on the balance of probabilities won't ever reoccur

Maybe some of the classes will be available to do online.