Those vibrating alarm thingies...

[treedelivery]

..hello. I have a dd who has no sn, but does have chronic constipation. Usual meds and usual horrible side effects and crap that goes with it.

She's 5 and in yr 1 at school. So I can't get her to drink enough, there aren't enough hours before and after school. School can't remind her as there are 30 of the little critters running around. DD1 can't remember as she is 5. Her dietician says aim for 800mls a day, litre if possibe. It isn't.

Her meds, imo, are maxed out. Anymore movicol/senna/lactulose and she just loses continence. That's hardly better than appetite suppresion and lethergy when you're 5 and trying to get into your school groove. Poor Dd.

Soooo. I think there is some product or other, that you clip to their belt and it can be set to vibrate? I wondered what you all thought about that. And where to get one?

Is this overkill? Good idea? I'm asking here because I bet you will know. Will know if I am being too precious. And will certainly know where to get one and what they are called.

Thank you very much for reading, and apologies for crashing the topic

Hi Justa. Thank you for the reply and reassurance.

I think no one 'gets it'. They just think it's constipation. Gets dealt with with medications and they go in the end don't they? People [not teachers but random people] sometmes actually laugh and giggle when I tell them about her pushing.

Can't see the funny side of pushing, anal dilatation, bulging prolapsing rectal wall myself. But maybe I'm just being a bit pfb . I've asked and asked and reminded and written notes Justa, and I get nods and reassurance. I'm self conscious of being regarded as a fusspot and it all back firing on dd.

The water isn't going in tough, so go-go-gadget mum!

Hmmm. Maybe that is a way forward.

I truly think they are well intentioned. It's a combo of a fairly demanding year group, the age old argument of sheer numbers, and a very undemnding dd. She's really compliant and generally no bother. maybe she needs to give them hell, then she'd be on their radar

But where to get one of these thingies?

I agree with all the other posts...its ridiculous they cant get her to drink at school! My DD isnt being propmted to pee and is holding it too long causing bladder weakness...and desperation. I intend to apply for statement (for her other SNs} but address this issue of basic care. Is there a TA???...Who could help? My Health Visitor said as DD is almost 5 her medical care will soon pass over to the school nurse....so it IS schools problem.

Still I dont know where to get the thingy! :) Google? Special Needs site?

Good luck!

Thing is Justa, as you well know, health bods are all so vauge. Si I end up so confused that I am not even sure her constpation is a big deal - let alone worth getting our family a bad rep for. DOes that make sense?

Consultant - Yes yes it is vital you must absolutely ensure she gets x amount of fluids.
Me - How?
C - Well, it the usual ways and I see she is maintaining her weight centile.....
Me - Should she need to drink at school, regulary?
C - Yes she should drink regularly. So the centiles are reassuring....how much medication do you give her?
Me - A sachet, like you said.
C - Give her more. That's not enough.
Me - That's what you said 4 months ago when you saw her.
C - But it's not enough. You must give her more....up her fluids, and increase fibre....I see her centiles are maintained. What medication is she on? Does she drink much water? You must up her fluids....

So by the end of that sort of pile of crap I don't really feel competent to tell school they need to tell her to drink - as I am no longer sure of my name, let alone the role of water in constpation.

It's like an episode of Tales from the Twilight Zone, taling to these people

Awww. Thanks for the ears Justa, I feel a bit more sure of my ground after a rant

There is this sort of thing, but that is expensive (in my eyes), can get lost easily, and may not be appreciated by school as jewellery(depends).

Would your dd cue into other events as a 'drink' reminder? (depends when/how she can drink in school, but changing activity as a cue, or something else such as seeing another child drink?) How much can dd drink at lunchtime vs how much dd does? If dd's taking pack lunches, jelly may help with fluids - have you tried talking to

Another shot in the dark (as it's not clear what your dd is doing drink-wise), but talking with your dd about (if using a sports bottle/similar) taking e.g. five 'drinks' from the bottle when she picks it up (practicing at weekends/when out and about).

If you have

Sorry x-posts.

Yes,. Withholding. I hear ya on that one too. How we don't scream with anxiety I have no idea.

There is a ta, who was lovely and took it on a personal mission last year. Not entirely sure of how succesful she was on the mission, as dd's urine was still the colour of stout. She was lovely though, and again is sorely stretched amongst the group.
TA this year is a fill in, although a regular fill in and know. Our own TA is a no show so far, so I guess ill or away. Hope she is back soon.

Have met school nurse. She said dd needed to drink plenty.

Blimey that is expensive snowmash. Well, I'd pay £1000's to cure her, so I guess a few quid to help her would be ok. Just such a lot of money!

They have to go to the sink and get a drink from a cup. They have to ask permssion to do this. DD justt forgets, or asks and then forgets what she set out to do, and so on. It's difficult, there is so much going on.

I went a bit when she said she asked the TA if she could have a drink and she said no as someone else was at the sink. Am hopeful dd is misremembering that. She said she didn't have a drink all day that day. She must have done, although her lips got very dry that day and now they are still chapped. Very dark wee etc.

I'm sure I saw a clip on thing, looked like a pedometer. A watch would be lovely out of school, but it might be a bit much in school. She is very anxious to keeo it all a secret.

Thank you all for your advice and ears.

Ok, plan A. Provide several mini bottles of fluid daily, with a cheap timer with a reward chart, show to dietician so she can pretend it's her idea. Give the lot to class teacher with instructions to make dd drink 100/150ml/whatever per hour. Chart goes home daily with empties so you know it's been implemented. Teacher only has to remember once an hour and has the timer chart and bottles to prompt her.

If that doesn't work get school nurse GP consultant and dietician all to make a massive fuss. If they resist, write to the headteacher yourself asking should you apply for a statement. Copy in all the above plus special needs governor and head of governors.

Treedelivery: the other routes suggested are definitely top advice - I'm sure there must be some info somewhere that school should act on this (well, duh!)

Would the dietician write to the school? Someetime sthey can be more approachable than (busy) consultants.

(Essentially, looking back, just what justawinegumalohic said!)

They could end up causing her premanent damage... Surely if she's constipated, all of her thirst/hungry mechanisms will be messed up anyway? :(

Gosh you lot have balls

I need to get assertive don't I?

the only thing that worked for my DD1 was a yachult (sp?) in the morning. That was all that was needed after years of meds and worry. HTH

Ok. I really like the ida mariagoretti. I am fairly sure the school won't go for it, but it might be a sign of how serious I am about this. Thank you for the suggestion.

I've been putting too much pressure on dd1 to conform and have her drinks - whilst worrying about bothering the school. I need to flip that don't I. I need to leave her be, and start laying it on the adults.

I think I'll go through the school nurse and her teacher. Who seems really lovely, and hopefuly won't be annoyed.
Why do I even care?

snowmash - yes her systems are messed up. Although getting better since we have really upped her medication. We are a good year into proper and applied treatment, and it is going ok. Apparently it will take at least as long to treat as it did to develop and as it lasted. So just another 5 years or so to go. However, on the huge positives, in the last 6 months she has developed an appetite, and asked for drinks for the first time

However, it's a relatively small concern and a single concern, so I wouldn't want to exaggerate our problems.

I could do with one of those myself.

Have new year 10 min meeting this week, I will begin the process of getting across how vital this is....

Yakult [sp?]. Not thought of that. Why haven't I though of that? Rachels live yogurt seems to help, so maybe that would really help. Cheers!

treedelivery, school absolutely should be involved in this.

my dd1 also has real issues with drinking/weeing - mostly caused by her nursery (she is now 6, and still has issues)

there's been some great suggestions here, and I definitely agree this is a medical need.

completely understand why your dd would want ot keep it on the quieter side, but wuold she be happy with a standard "my doctor says I have to drink regularly" explanation?

because if so, then it makes forcing the school into an overt role easier.

I was going to suggest a visual timetable for your dd - a strip of symbols, one for each lesson/break time/circle time/whatever actually goes on in ms schools (dd1 is at SN school, so no idea, sorry!)

then you could intersperse a "drink" symbol between each one, as a reminder for your dd.

I also otally agree you need to start making the school more responsible for reminding her. she is only 5, and as you say, ther eis so much going on around her.

I like maria's suggestion of little bottles - they are eaisly found in superdrug, etc, as travel bottles for toiletries, and wuold make knowing how much she has drunk exactly a lot easier (as it is, a drink form a cup is an unspecified amount, even if the TA does keep on top of how many cups)

Thank you everyone.

Am I being soft, do you think it really warrents putting them to this much trouble? I mean, they probably have some real longer term issues to deal with in other kids, I don't want to drain them if we can cope ourselves. You know?

And yet this is long term, and it is pants for dd. Yet it isn't really is it. Is it?

The timer thing is just what I was thinking of, just need to find it in the UK.