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frequent visits to the toilet, is this unusual?


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#1 Claire82

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Posted 02 June 2008 - 09:36 PM

My ds has always needed to go to the toilet quite a lot for as long as i can remember, he also wet the bed most nights until about 6 months ago. I was wondering if this is common or not with AS? I ask mainly about the daytime toileting because he keeps saying that his teacher won't let him go to the toilet when he asks, even though he tells her he is desperate. I have searched for info about toilet needs and AS but can't find anything and his teacher thinks he is just saying he needs the toilet to get out of the classroom or says he will have to wait like everyone else.

Claire

#2 Enid

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Posted 02 June 2008 - 09:48 PM

Hi Clare, I have not had a problem with this, but others will surely post answers, how old is your son? Enid

#3 jb1964

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Posted 02 June 2008 - 10:34 PM

Hi Claire,

Our daughter was complete reverse - hardly ever went to the loo inside or outside home - would never go in school - and still doesn't - she's in yr 10 (nearly 15) of comp and has only once been to the toilets there for a tissue because she had a runny nose.

I'm sure I remember the consultant saying that body signs - i.e. thirst, hunger, hot, cold, toilet etc can be difficult for asd children to interpret but gets better as they get older and more aware - our daughter falls into this category as she is now aware of thirst and hunger - but that has only happened over the past couple of years.

I wonder is it learnt behaviour in response to the teachers attitude - that he is frightened of wetting himself and therefore becoming over anxious??

Take care,
Jb

Edited by jb1964, 02 June 2008 - 10:35 PM.


#4 oxgirl

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Posted 03 June 2008 - 01:43 PM

Claire, my lad has exactly the same problem. He was in a maths lesson, having gone on the way to the lesson, and needed the loo again. His maths teacher said if he went he'd have to have a detention to make up the time he'd lose going and he had a total panic attack/meltdown. He ended up being sent out of the lesson anyway, so she didn't achieve anything.

My lad gets very distressed and anxious if he can't go and he feels an urgent need to go, which comes on quite suddenly, and he just can't wait. It's gotten so bad with us that he'll spend 20 mins in the loo standing up and then sitting down and squeezing out another drop and then standing up again and then squeezing out drops again, 'cos he seems to feel a constant urge to go. Then he'll come out of the loo and five mins later he's back in there! I think, with him, it's a mixture of lax muscle tone down there, a sensory issue and anxiety. It's very hard to take him out nowadays. Apart from the fact that he'll spend 20 mins in the loo before he'll venture out of the house, as soon as he gets in the car or five mins down the road he starts sressing about needing the loo and he gets himself in a real state. The problem has certainly gotten worse for us recently, exacerbated by stress, I think.

~ Mel ~

#5 Tally

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Posted 03 June 2008 - 01:54 PM

I don't think I go particularly often, but I don't get much warning before I am very desperate for the toilet. I think it's a sensory issue for me, and I don't notice until it's very obvious.

I hate unfamiliar toilets, and I hardly ever used them at school. At work they aren't crowded, so I'm OK there.

Toilets used to be a big issue in planning anything, but it's better now that my stomach isn't so volatile.

#6 Frangipani

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Posted 03 June 2008 - 01:56 PM

My son had this except it became worse over time, his need to go became like every five minutes.

But nothing would pass. He ended up with irritable bladder and irritable bowel, the next phase if it doesnt get managed properly.

He had to go to a Urologist to get bladder retraining.

She simply drew a chart, Mon to Sunday, and said to him everytime you have the urge to pee, imagine a balloon that is empty. I want you to ignore your urge to pee and go and do something, she asked him to do this a couple of times. Then measure what he peed then write it on the chart. Each time he went back the emphasis was to repeat the above, but to get to the point that he holds off the urges, until he could imagine that balloon, to be full as possible. He had to relearn what it felt like to be full. Then he had to measure. and write it on the chart. It took him a couple of visits before he could get it back to normal.

I dont recommend you try and do this on your own. I recommend if it gets worse, see your GP because he may need some intervention for anxiety. Relaxation techniques and deep breathing exercises.

I used to put my Yoga and Pilates DVD's on for him so he could do them and follow the breathing exercises, the doctor also recommended this, and he enjoyed it. I think he was more into the women doing them. whistle.gif laughing.gif

biggrin.gif

#7 mossgrove

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Posted 03 June 2008 - 02:31 PM

Does your son produce anything on these frequent visits to the toilet?

One of the other children at the boys special school used to go every few minutes as a kind of stress response but it wan't actually to do needing to go. That said Autism and Bowel problems are often found together. It is worth speaking to the school to see if they can establish what is happening, and also to your GP if it does appear as if it maybe a bowel issue.


Simon

#8 Claire82

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Posted 03 June 2008 - 03:50 PM

Sorry, I should have been more specific, DS always needs a wee, his bowel movements are pretty normal/regular.

I would say that most of the time he does 'do' something when he goes. He will go during most mealtimes at home and even in the car, short or long journeys. A few times we have even had to give him an empty bottle to pee in in the car. He does seem to be fine one minute and absolutely desperate the next, becoming quite upset if we tell him he will have to wait even a couple of minutes until we can pull over.

I am more concerned about this at school to be honest, I don't know if I should ask his teacher just to let him go or to make him wait unitl break (depending on how long before breaktime).

Claire

#9 oxgirl

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Posted 03 June 2008 - 06:19 PM

QUOTE (Claire82 @ Jun 3 2008, 04:50 PM) <{POST_SNAPBACK}>
I am more concerned about this at school to be honest, I don't know if I should ask his teacher just to let him go or to make him wait unitl break (depending on how long before breaktime).


I try to encourage my lad to wait a while when we're out, say 20 mins, before running straight off to find a loo. At bedtime it was getting to the point where he was taking two hours to settle because he was continually running back and forth to the loo because he was worrying that he would wet the bed, but we have reduced this right down to two wees max. At school, though, if they try to make him wait, he just gets more and more distressed because they do it in a kind of threat and punishment way and it makes the problem and the anxiety worse.

~ Mel ~

#10 Clare63

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Posted 03 June 2008 - 07:25 PM

Hi Claire,

We had simular with our son at primary school and a quiet chat with his teacher led to him being able to leave the room when ever he felt the need, they knew he was not trying to get out of lessons or such. When he begun secondary school he was given a toilet pass which he could wave and be excused form the room, I hasten to add he never used it though, but was much more comfortable with the primary arrangement, as a child who'll never ask for help let alone being excused for the toilet.

Hope you manage to come to some arrangement with the school, whether is it AS related or not, it quite clearly causing him distress.

Clare x x x

#11 soraya

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Posted 03 June 2008 - 08:28 PM

Nick is nearly 15 and he is always going to the loo!!!!!!

#12 sadie

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Posted 04 June 2008 - 07:58 AM

QUOTE (oxgirl @ Jun 3 2008, 02:43 PM) <{POST_SNAPBACK}>
Claire, my lad has exactly the same problem. He was in a maths lesson, having gone on the way to the lesson, and needed the loo again. His maths teacher said if he went he'd have to have a detention to make up the time he'd lose going and he had a total panic attack/meltdown. He ended up being sent out of the lesson anyway, so she didn't achieve anything.

My lad gets very distressed and anxious if he can't go and he feels an urgent need to go, which comes on quite suddenly, and he just can't wait. It's gotten so bad with us that he'll spend 20 mins in the loo standing up and then sitting down and squeezing out another drop and then standing up again and then squeezing out drops again, 'cos he seems to feel a constant urge to go. Then he'll come out of the loo and five mins later he's back in there! I think, with him, it's a mixture of lax muscle tone down there, a sensory issue and anxiety. It's very hard to take him out nowadays. Apart from the fact that he'll spend 20 mins in the loo before he'll venture out of the house, as soon as he gets in the car or five mins down the road he starts sressing about needing the loo and he gets himself in a real state. The problem has certainly gotten worse for us recently, exacerbated by stress, I think.

~ Mel ~

My DD has this problem too....it's very difficult to get anywhere on time. As soon as you call her for tea she'll disappear to the loo, if you want to go out she'll disappear...very wearing. I don't know if this happens at her current school but it hasn't been specifically been raised as an issue but they are very tolerant. I am aware that at DD's previous school she used to go 'missing' for whole lessons and because she is an ultra quiet girl she wasn't even missed until she returned!!! When she's happy playing in her room or we are away somewhere her toilet trips don't seem to be excessive.
By the way night times were also a problem until recently. She was on medication to help with this since she started to go on school holidays (I couldn't send her on holiday with other NT children still wearing pull ups) about five years ago

#13 sadie

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Posted 04 June 2008 - 08:09 AM

Woops I got cut off! We only stopped the medication last week and nighttimes seem to be fine. But before got the prescription we had every kind of medical investigation and nothing physical seemed to be wrong.
To return to the daytime issue we in our house have developed a very strong sense of patience....followed at length by a *******! wallbash.gif wallbash.gif wallbash.gif

#14 oxgirl

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Posted 04 June 2008 - 02:49 PM

The trouble is, it seems to be a vicious circle, the more often they go the more they train their bladder that it needs to go often. It's a problem that can really take over family life and it's such a simple thing, having a wee, that most people just take it for granted but we're all slaves to Jay's bladder, or so it seems sometimes. Trying to get him to accept that if he gets the urge and then just waits for a few minutes before rushing off to the loo then he'll be training his bladder to wait again is very difficult. He just wants to give in to it all the time and it seems to rule his whole life at the mo. sad.gif

~ Mel ~

#15 mum23

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Posted 05 June 2008 - 12:46 PM

Hi guys,
I just want to tell you what my son's urolagist said to me, ' Bladder dysfunction is very common, it can ruin a childs self estem, and play havoc with the childs life, but it can be treated and should be.'
I would recomend you push GP for a referal to a urolagist, don't let them (GP) tell you it's just one of those things, cos there is lots of help out there for kids with bladder problems.
Anna

#16 jo jones

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Posted 05 June 2008 - 01:31 PM

hi all ,,blaine is the other way,,in pre-school he would hold it in for up to 6/7 hours!!!!! he would pee for wales then at home,,,,they did inform me that they were askin him if he needed to go ,,he always refused,,,,when he started school they had the same problems,,i did explain that he did have sensory issues and didnt really like using other toilets other than at home!!! at home mind we only use clear products,,as if we went to my mams he wouldnt use the toilet there cos she has a bloo block in the tank,,,says he cant go in there cos the water is blue??????? he did eventually start usin toilet in school but had to be supported by ta,,,he will only use one specific toilet,,which has a window and also has to leave the door unlocked so that he can run if anyone puts the dryers on,,,,,,,,,,,,,,,,,,,,,at home we have to ask him to go the toilet cos u can see that he needs to go,,he is nearly dancing,,but i dunno if cos of sensory issues,,,does anyone else have this with children?

#17 gothschild

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Posted 05 June 2008 - 02:07 PM

Hi,
My son also visits the toilet alot. When he went into High school we had a huge problem because the toilets are locked during lessons and the students have to get a key to open them.Some of the teachers refused J immeadiate access on a couple of occasions, as he asked to go straight after a break. I had to complain to the Senco and then write on every page of his planner that if he asked to go, they should let him go, because he waits until the last minute.

He was never dry at night right up until he was 9, I used to put nappy pants on him as he got distressed if he woke up wet. We even tried an alarm but nothing made a difference. He stopped when he was ready too.

If he goes to the toilet before he cleans his teeth at bedtime he goes again seconds later because he has had a small amount of water to wash away the toothpaste. I've told him that it won't go through him that quick but he thinks otherwise.

The Enuresis nurse we used to see told us that if he drank alot of water through the day his bladder would stretch and he would be able to hole his urine longer. It didnt work,it has the opposite effect on him he just goes more.

gothschild x

#18 NobbyNobbs

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Posted 05 June 2008 - 04:04 PM

i had this problem. for me it was triggered by a school trip where i wasn't allowed to go to the toilet, and had to sit on a coach for 2 hours absolutely desperate and terrified i'd wet myself in front of the rest of the class (i was 14!) after that i felt like i was absolutely bursting as soon as i thought i couldn't go to the toilet. so i started going every 10 minutes incase i couldn't go later. it got to the point where the fear of not being able to go to the toilet stopped me being able to leave the house. i also stopped going to school because i was too embarassed to ask teachers for the key to the toilets (at my school you had to ask to leave class, then go to the main office and ask for a key to get into a toilet during class) and this blew into full blown agorophobia. if i was made to go out i'd have to go in every toile i saw, and got in such a state if i couldn't that i'd be crying.

i eventually got control (mostly) over this by letting myself go into the toilet, but not peeing sometimes. then i could reason that if i could go X time last time, i should be able to this time. the result of this was that fora long time i judged when i needed the toilet not by any urge or feeling, but by the clock. not a perfect situation, but it got me calm enough. it took me about 5 years to be able to go out the front door without going to the toilet first.i had to go to the toilet before every class or i couldn't bear to walk through the door when i did finally (After a year) get back into school. what i find strangest is before the school trip, i had never been in a school toilet, as i refused to go in them as i was scared of the girls in them.

i'd say tell the teachers to let him go. if it is anxiety led, then he needs to start dealing with it in lower stress places first, and tackle school later

#19 misterfredrogers

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Posted 07 June 2008 - 09:15 PM

QUOTE (Claire82 @ Jun 2 2008, 10:36 PM) <{POST_SNAPBACK}>
My ds has always needed to go to the toilet quite a lot for as long as i can remember, he also wet the bed most nights until about 6 months ago. I was wondering if this is common or not with AS? I ask mainly about the daytime toileting because he keeps saying that his teacher won't let him go to the toilet when he asks, even though he tells her he is desperate. I have searched for info about toilet needs and AS but can't find anything and his teacher thinks he is just saying he needs the toilet to get out of the classroom or says he will have to wait like everyone else.

Claire

J used to be obsessed with going to toilet for a wee every 5 mins.He was late potty trained but never wet the bed once he was potty trained .once he started nursery and school the problem got worse he would go but a drip would come out.He was referred and they found a physical problem called phomosis (not sure I have spelt this anywhere near right) which led to a circumcision.Not sure what came first the chicken or the egg...bear in mind he never wet the bed BUT always was a poor sleeper yet went constantly during the day.The problem never went away til he was 8 when he had his appendix out (why that has made a difference who knows but now he constantly complains about pains in stomach and joints as a new worry).The teachers got around him needing to go by rather than him keep interupting them and the rest of the class they would get him to hang a rag doll on the classroom door to say where he was .this seemed to work well until one day another teacher went to investigate noise in the toilets and went in all guns ablazing to shout when she was taken aback by the quiet conformist child singing at the top of his voice wandering around in a world of his own.It was something that became a habit I am sure to escape from the pressures of the classrooms and it was his way getting time out whereas now he has a good relationship with his current teacher just to ask for a little quiet time.I am sure the teacher stopping your son going will snowball the effect and make him worry about going more so hopefully they will try help you out.

#20 forbsay

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Posted 08 June 2008 - 12:07 PM

M asks to go to the toilet alot. He does not do anything and I think it is to with stress or him being in a situation where he does not know how to handle.

Forbsay

#21 daniels-mum

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Posted 22 December 2009 - 10:47 PM

Sorry to resurrect such an old post but I seem to be having this problem with DS 12yrs, at the moment and wondered if it was a common thing or if it was anything I should see the doctor about.

He has always gone to the toilet alot and wherever we go out he always has to go to the loo, sometimes very suddenly. Sometimes he can be about 10-15 which is a long time when you are waiting for him to come out.

It has caused a few problems in the supermarkets. At the moment, however he is going alot more, my mum and sister were looking after him today and took him to pizza hut with 3 other kids (cousins and brother) and he went about 5 times.

This is nothing out of the ordinary and he can easily go 3 times an hour at home. I have tried asking him if he wee's each time and I think he does a little, but I believe this is more of a habit than actualy needing to go. I am not sure what he is like at school, I must ask them when he goes back in new year. I actually think he has a bit of an obsession with toilets, if I was on the train with him on a twenty minute journey he would def go at least twice. He also does it at his grandmas and aunties house alot so I know its not just when he is with me.

Also I am worried as he seems to be losing weight, although this is probably unrelated to the toilet things, alot of his trousers that used to fit fine are now falling down. He is very skinny to start with so can't afford to lose much any weight. He is a picky eater but does eat alot of what he likes if that makes sense, and i dont think its because he isnt eating enough as he has regular meals and I try to ensure he eats from all the food groups. Someone said to me its because he is growing taller and the weight is going there, but I dont think that would make his trousers fall down.

Apologies again for bring this up again, Im probably overeacting as usual!! x

Edited by daniels-mum, 22 December 2009 - 10:49 PM.


#22 justine1

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Posted 22 December 2009 - 11:18 PM

Hi there,my 9 yr old NT is having this problem at the moment though may not be as frequent as your son but he had been given antibiotics as they suspected an infection,now he is going for bloods for diabetes.He is skinny and eats well,but my mum is the same (she weighs just 38kg and wears age 12 clothes) and she has diabetes.So I think you seriousley need to take him to a GP,as you say it may be some sort of obsession.If there is no underlying medical problem the GP can still give meds to suppress the urge to urinate making him "hold on" for longer.

As for the fussy eating I have that problem with my 6 yr old (AS) and my 3yr old (suspect ASD),my 3 yr old is the worst and like your son he is losing soooooooooo much weight,to be honest he scares me,when I see his ribs and hip bones sticking out I feel like crying but he just wont eat.I buy him what he likes but he goes off food quickly and then he wont say what he wants,its so frustrating wallbash.gif Sorry not much help but know how you feel,at least when you go to the GP for the toileting issue they can weigh him as well just to put your mind at ease.

#23 Kathryn

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Posted 23 December 2009 - 12:03 AM

Hi Daniels mum

My daughter did this for about a year when she was 7/8. She had to go to the loo before leaving the house, immediately on reaching the destination, and if a car journey was longer than 20 mins she would start agitating and panicking to go. After picking her up from school we had to immediately pay a visit to the superparket toilets nearby and she would stay in the toilets until she had done something, often for about 20 mins. At school she went frequently - 17 times in one day at one point.

Difficult times - train and tube journeys were out of the question and we had to plan outings around possible loo stops. We tried rewards for "holding on" but that made her more anxious about it. I remember one awful time in the middle of a strange town where she just crouched down in the car park and screamed and would not move because she needed the loo, so I half carried and dragged her down the high street desperately searching for one.

I thought it was due to the stress of moving to a new town and school and that it was a way of getting some respite from the classroom and the horrible teacher she had. She herself, looking back on it, has said that it was a physical thing: she could not recognise the signals of needing to go. The strange thing was that it all stopped at the end of that academic year and she was fine when she moved up into year 4 and life became less stressful and more secure generally, so it may have been linked to other anxieties (although she denies this).

Sorry I don't know what to suggest but your post did ring a few bells so I just wanted to share our experience.

K x

#24 MelowMeldrew

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Posted 23 December 2009 - 11:18 AM

Us too ! mine would sleep in the toilet if he could. His water obsession continues unabated and impossible to address at the present time. He is always there playing with water and tasking sips in a cup, this would trigger toilet visits to pee obviously. One aspect was I had him tested for diabetes, as his mother is a diabetic, but he isn't, it's an AD thing ! as per usual NEVER make a fuss about it, that is a recipe for more and a lot extra of the same ! This week has seen his biting/nibbling of the hands stop at last, I took the route of not drawing attention to it, and this seems to have worked... again NOT a stress thing, which is the stat opinion of medicos, they assume everything an Autistic does is because we or someone else stressed them out..... so don't get concerned about that, it is just an obsession they pick up and continue so long as it worries YOU, it's important to not draw attention to some things they do... mine did all sorts, occasionally when he finds these things aren't getting him attention he may revert to habits that did in the past.... so knowing which is attention-seeking and what really is stress, is best left to us not medical people, who seem deterimed to see if the issue is 'home based' grrrrrrrrr!

Edited by MelowMeldrew, 23 December 2009 - 11:19 AM.


#25 sesley

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Posted 23 December 2009 - 08:24 PM

some times when we get anxious a quick trip to the toilet maybe because he is needing to go a bit and maybe he worrys he might not get there in time ,if he has been ok fo 6 months as well, it maybe he is determined to stay in control,a little irritation to us is a big maybe to people on the autism spectrum , i don't think NT appreciate the stress of getting things right can be for ASD's and see other motives in the actions. maybe a trip to your GP for tests might be called for,but if the toilet trips are one of anxiety then he needs space and reassurence to overcome his difficulties .

#26 oxgirl

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Posted 24 December 2009 - 11:06 AM

School referred Jay to CAMHS because his toilet issues are such an enormous problem. He's continually late for lessons because they can't get him out of the toilet and he has to run back to the unit between lessons to go as well. When he's in the loo, Jay goes to the loo but then waits to squeeze out a few more drops, then he goes to stand up but has to sit down again to squeeze out a few more and it goes on and on for twenty minutes at a time before he feels 'safe' to come out and go to his lesson. At home the last loo visit before getting into bed was taking thirty minutes with about twenty attempts to squeeze out a bit more here and there, it completely took him over, more like OCD behaviour than anything else. He's been seeing CAMHS since the summer and we've made a little progress, getting the last night visit down to 14 mins from 30, but it's still an enormous problem and we're not sure where to go from here really.

~ Mel ~

#27 smiley1590

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Posted 24 December 2009 - 10:06 PM

i remember in infants and junior school wettting myself and getting upset,distressed and anxious over what had happened but felt like i let it too late i now know IS AS related THANK GOD at time didn't have official diagnosis years before always wondered and questioned why made me embarrassed i felt anxious about going to the toilet and needed a LSA/TA to go with me as i felt like i had wet myself everyday lunch time i personally now look back think it was an OCD/Paranoia anxiety type related issue connected with AS but used to get scared i'd be late for class anxiety fueling the whole situation i felt embarrassed which i think widened and made the 'difference gap' even bigger problem with my peer group! even now my mates laugh about me pulling my knickers down in class and taking them off as thought i'd wet myself or had! even now comes back to haunt me the past and i still don't know if this theory of mine behind this is truly right??? can anyone inform me of similiar situation or facts/info about it more help me understand abit better?






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