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Not a SN issue, but I reckon you lot over here would know(22 Posts)
Hello, it's all cosy over here!
As per title, not a SN issue, but.... DD2 (13) faints a lot, I'm trying hard to get a. a diagnosis, and b. some treatment (rant here for background. In the meantime, I can't leave her alone at all (unless she's asleep, on a blow up matress on the lounge floor ) as she faints if she sits up slightly, if she stretches, if she moves at all if it's a bad day. At the moment we're kind-of coping as DH is working from home, and DD1 is around, but in a month she's off to uni, and a month later DH will be working from an office. How on earth do you manage to get food cooked, other DC to school/clubs/friends for tea, do any cleaning, etc?
Initially I thought, oh, it'll be OK, I managed with babies, but it's totally not like that at all and I can't see my way round anything. We have a wheelchair, so theoretically she can go in other rooms, but for example today, on the last three times she's been to the loo, she's fainted 14, 17 and 5 times respectively after being upright for less than two minutes (admittedly this is much worse than it has been, just one faint after another after another). So if i'm peeling potatoes in the kitchen and she starts fainting, I have to drop everything and get her lying down on the floor. I have once or twice cooked while stepping over her, but that's downright demeaning, and I refuse to accept it as a solution.
How do you parents of DC with ASD (where you can't not be watching them) manage? I know the answer is "with difficulty" or "we don't", but any hints and tips gratefully received .
Oh my goodness, you poor thing and your poor dd!!!
What on earth are the medics doing for her???
Wrt your question...not sure I can help but didnt want you to go unanswered!
I have a dining kitchen with a sofa and tv in...its not what I would like ideally but it means ds1 can be with me most of the time (he dislikes being alone and has anxiety issues) as he can be with me when we are downstairs watching tv/playing/working etc and when I need to be cooking/cleaning etc
Also, have you thought about a commode? I know its not a nice idea, but it might help as a short term thing so she doesnt have to go so far to the loo??
Sorry...not much help
I don't really have any constructive advice. I would say that you are wrong this is an SN thing.
Is there a carers centre in your local borough? they could help with some practical local advice.
You have to adapt your daily routine around the difficulties with your DD. Thing like changing meal times. doing meal prep when she is asleep. The best advice I can give is to not try and be 'normal' as all it will do is stress you out and create more stress within the family. I have 2 ds's with sn and I do get some cleaning done but not as much as I would like, my mum hates it but as far as I am concerned its tough as my ds's safety is more important than a tidy house, do the basics and let others do the rest.
I completely agree with Jones - that has to be a SN all of it's own, surely? Are you getting any support? Medical help? How is she coping at school?
Has she been to the doctors? what have they said. And yes I would class it as a SN issue Does she go school? or is this a recent thing?
Is she's an NT 13 year old (I assume), she will have plenty of understanding about why she must stay out of the kitchen and lie on the sofa while you cook, and not try to get up unless you're next to her. Try to encourage compliance with this?
Medics have done a load of test, all of whcih shoed nothgin, but everything was being deferred to this one paediatrician who decided back in June it was simply her standing up too quickly. The appointment is now tomorrow morning, but there's one particualr test I want done which he can't arrange at the hospital and needs to refer her elsewhere for. And because it's to test for something which is very rare (apparently) in her age group, i'm not hopeful that he'll actually do anything productive. But DH is coming along ot the appt. and will try to run it like a business meeting (as I will alternately rant and cry which isn't going to get us anywhere), so maybe.
Theoretically we could open up the serving hatch bewteen the kitchen and what is now the lounge, which might help a bit, hadn't thought about doing something like that. Would rather avoid a commode if we can - we do have a downstairs loo, so she can go sofa-wheelchair-loo-wheelchair-sofa, she only stands up for the length of time it takes to pull up jeans.
Will investigate carers centres, thanks for that suggestion. I'm wondering though, is that fact we don't have any diagnosis at all (other than "she faints") going to cause a problem with accessing any help? I've looked at the blue badge application, and that needs a diagnosis and a doctors letter, nad even that woudl only help with being able to get the wheelchair right up to the side of the car so she can go straight from sittign in the car to sittign in the chair, with minimal standing.
My cleaning standards are quite low at the best of times, which is probably quite helpful! I need to dig out the slowcooker book and see what stuff I can prepare first thing in the morning before she gets up. Thankfully DD3 is 9, and doesn't need so much hands on as a younger DC would, which also helps.
X posted loads, yes she's NT, which is difficult in itself as she's is fully aware of exactly how shit her life is at present . But, yes, at least she knows what not to do (i.e. move).
School have been really good, it only got back right towards the end of term, os she managed at least lesson 1 most days before they rang to "suggest" I came in to get her. She only missed the last 2-3 weeks, and for next term they will be very helpful about sending work home so she doesn't get too behind.
No support, and no medical help so far . Went in ot A&E yesterday as she fainted after going to the loo and collapsed behind the door (it's a bi-fold door, and she was in the internal V - we had to unscrew the hinges to get to her) and she couldn't move the arm she'd landed on at all, they looked really disbelieving at the whole "she fainted and landed behind the door" story, Xrayed her, couldn't find anything wrong, and sent us home with "any more problems, go th your GP"; the GP says he can't do anything without seeing all the test results, which the hospital haven't managed to send through; but in any case his attitude is to get us out of his surgery asap and make it someone else's problem, you have this consultant's appointment, talk to him.
Actually, writing it all like that makes me see that it is quite dreadful, we're getting really good a coping and getting on with it (as you do) that I forget how not normal life is
You do just adapt - but it takes time to work out what is right for your family. So you take time and do jobs in small chunks as and when you can.
Hope you get some answers about what is wrong soon.
I have had periods of my life when I fainted endlessly. The standing up thing is not the brush off it sounds and is actually a description [in lay mans turns] of what is happening. They never got to the bottom of my problem and it just crops up again on and off. I have very low blood pressure so eating/standing up/holding my arms above my head etc all cause me to go a bit woozey....or flop! I have 2 children with special needs so I guess what I'm rambling towards is that I now how awful this can be for both of you.
I think it is important not to make your daughter feel that she is "ill", as it just muddles things really. In my case it is just something we have learnt to work around. If she does faint what happens next? The reason I am asking is that on the whole I faint when there is not enough blood getting up to my brain. If I lie down [particularly if I raise my legs] it rights itself, but though the fainting is awful, if I faint basically my body makes me lie down and the blood gets back to my brain and in effect it is the same thing. So do you really need to be watching her all the time? She is 13 and presuming she can understand that she would be a fool to move somewhere where she will be hurt falling down, could she not be allowed to try and work out what IS possible. I would leave the door open to the room she is in and carry on cooking etc as normal. I know you feel desperately worried about her and that it sounds a bit callous, but it isn't actually necessary to carry on at all once you have regained consciousness. I would advise being very business like, accepting that this is how it is going to be for a while and just getting on with your lives.
On the cooking front I do do a lot of one pot in the oven stuff as you can cut up stuff wherever the kids are. As for cleaning .....I have learnt to live with my shame.
Poor you that is real hard work
My advice is not to worry about what needs done as you can only do what you can do the rest has to wait. Don't feel guilty for not being able to do it all
zzzzz as far as we can tell, it's not low blood pressure in itself which is the problem, although it is the final stage before the faint. We suspect it's PoTS for which there is treatment, once we get someone at consultant level to listen...
The reason we can't leave her alone is that even if she is being really good and sitting still, even a small movement can trigger a faint, and at least once a day she ends up forward rolling off the sofa/out of the wheelchair onto her head/neck/arm. Plus some of the faints come in pairs and she either can't move inbetween them, or she gets visual problems, or is totally terrified, and needs someone to be there. She also hyperventilates, and although she is getting better at controlling her beathing, she does need some help to get it sorted. I'm really quite concerned that she's going to give herself concussion with some of the bangs and bashes she causes.
Sorry for the dripfeeding, the most recent medical "advice" last month was "don't let her fall off the sofa", and when there have been times when she's turned her head and somersaulted onto the floor, you can see why I'm perhaps a bit overprotective!
I'm actually coming round to the idea that perhaps it's not actual faints though, as she collapses quite violently, and recently her body has been going very stiff, with a very arched back. The initial fainting was much more of a collapse into a soft heap on the ground. Apparently it's not epilepsy though.
I hope you get answers soon and that life becomes easier for you
I don't know anything about pots, but hopefully someone will answer definitively for you weather that is the issue. My youngest has been very ill with seizures and certainly a stiff arched back would be typical for her for a seizure. If that has already been ruled out, then I can't imagine what would cause that. What I would say having been through the mill with consultants and hospitalisation is that keeping accurate records of what is going on is really helpful in the diagnostic process, especially if as you say the episodes are changing and by the sound of it becoming more complex.
A seizure chart would typically be,
Date, Time, Duration, what happened at the beginning [ie eyes rolled, right fist clenched etc], what was happening before [ie she was sleeping, trying to stand up]. Find an old note book and just put headings along the top and fill it in as you go. It is odd but I found it strangely calming to keep accurate records. Dr's are really interested in the pattern of episodes, triggers and obviously if things are escalating. If you feel the episodes are changing then it is entirely appropriate to film the episode and show it to the consultant. A picture tells a thousand words.
If your daughter is falling off the sofa and will hurt herself then I would put a mattress on the floor. Help her to be as independent as possible, it is neither of yours best interest for you to have to catch her. I don't think you sound over anxious at all! Lord you must be terrified. What i do think is that it is very important to keep her as empowered as possible. In the long run that will be in her best interests.
A medical term for fainting is syncope, and you may find more useful information in the Wkikpedia Syncope (medicine) article
Merlincat that's what I thought when I first read OP too! x
Hope you get some answers for your daughter. In the meantime I hope she can stay safe and not end up with any added injuries through her falls. xx
i have fainting for no reosen , it often turns out to be an infection , sometimes stress and sometimes low blood pressure/sugar . i have learned to live with it is tough
Thankyou all so much just for being interested, I've really felt like it was head-brick wall, plus I've had relatives banging on about how we should go privately, we'll pay, here's a friend of a friend whose a private paed... isn't it dreadful how there are no resources, straight into Daily Fail territory...
Anyway, we saw the local paed this morning and I was pleasantly surprised with how proactive and wanting to sort it out he was. There are no brain issues apparently and she has a "very strong heart", although he's getting a cardio to look at the 24 hour ECG results. He seems to think it's psychological in origin and wants her to see a psychologist/psychiatrist for at the very least counselling, but is keen also that she sees a cardio specialist as well (handily I already had a referral to the Royal Brompton .
I'm supposed to now make sure she doesn't get into the habit of thinking she's ill (as someone said earlier - am on phone so scrolling a bit hard), and to stop "hovering" waiting to catch her. He agreed that would be hard as I don't want to let her hurt herself, but we've got to "be strong" and trust that he will get it sorted. I'm waiting to see I have to speak to the school and get them to do some in depth digging to check if there's been anything going on there which could be stressing her, but I can't see that there would be anything serious enough to cause today's record of 98 faints/collapses that either I or DD1 who she's really close to, wouldn't have noticed some signs of, surely?
Re narcolepsy, a few people have suggested that IRL, so I asked, and definately no, as well as epilepsy/seizures.
Just adding a link about home tuition in case your dd has to miss school for an extended period of time. she is entitled by law to a minimum of 5 hours per week support but number of hours should only be limited by what she can cope with. In practice you will have to quote the legislation and argue your case to get more.
Hope you get some answers soon about the fainting.
As an aside, I have been going to the Royal Brompton for years so let me know if you need any info about going there. Hope you get it sorted out, Paed sounds good.
A quick update for anyone who's interested . The stepping back a bit and not hovering approach has seemd to pay off a bit - she'd now down to aorund 15 faints a day, and so long as she's not overtired, they generally aren't too bad.
Not one medical person has been interested in my "fainting notebook" though, but I'm still keeping it [stubborn] - I find that really surprising tbh, as all the online advice I can see is to keep a record.
Brompton appointment through for 19th September - Davros, as you're a regular there, what do I need to know? We have to be there for 10am, and have to allow at least half a day as it's a first appointment. I'm planning on taking a cab from Victoria station as we'll need the wheelchair and the District line isn't w/chair friendly , and I'm not brave enough to deal with buses at that time on a Monday morning (some recent threads on here re w/chairs/bugggies on buses have been terrifying ) - does that sound sensible?
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