Special needs daughter & periods

A question about : Special needs daughter & periods

My 12 year old special needs daughter has just started her periods and I need help!
She attends main stream schooling but is in the nurturing group with another 4 girls. Although she has been taught about periods, babies etc she clicks off as anything medically freaks her out as doctors and hospitals have always been part of her life. Her doctors are fantastic and know her ways so when she started her period for the first time the other evening the first thing she wanted(was screaming)was to go and see her doctor and to have an injection to 'stop' them. I explained over the telephone to her doctor and she was only too pleased to see her that evening and sat with her explaining things through. Unfortunately, when she was told she couldn't have the injection until she was 15 she completely freaked out.
I have to accompany her to the toilet, she wont look at all so I have to change the pad and dispose of it. Where she is heavy it is soaking through her bottoms, so I have had to go out and buy lots of different ones. She is also is incontenent at night so wears a nappy.
Surely there must be something they can give her at the age of 12. Does anyone else have a special needs daughter that has gone through or going through this?

Best answers:

• Oh Cathy, I have no experience with these things but wanted to send you a hug. Not much use I know but others will be along I'm sure. Xxx
• Possibly the pill? it will at least reduce her periods and I think it may be possible for it to be used at 12 but not sure
• The Scottish Down's Syndrome Association used to publish a booklet aimed at girls with learning difficulties, to help them understand the basics about periods and how to cope with them. Unfortunately, I can no longer find the link.
  You could contact your local special school and ask their nurse for help - they will have a massive amount of experience in helping with everything from acceptance that periods ahve started, to changing pads and maintaining a good hygiene routine.
  Visual timetables often help children with special needs. Maybe you could make a chart to help remind your daughter to change her pads. She might respond to a reward (such as a sticker) if she uses the chart. Initially it could be that she gets the pads out of the packet on the first day, then progresses to removing her soiled pad on day two, then on day three she puts her own pad into place (you will need to check that it is correctly positioned).
  Practising positioning of pads might be worth a try - just use clean knickers and some pads between periods. This also reminds your daughter that her periods will recur.
  It's really hard at first, but your daughter will get used to coping with periods.
• My DD has severe learning difficulties and is the same age. She hasn't started her periods yet but they are imminent. We took her to a paediatric gynaecologist last month (who knew such things even existed) and were advised that when she does start her periods that she can have a mirena inserted under GA immediately if her pelvis is big enough which will be replaced every 5 years to hopefully switch things off, and if not the pill will be prescribed and if necessary we can get OT help to teach her how to swallow it (as she has never taken medication in tablet form). Her situation is complicated as she also has epilepsy which can be made worse by hormonal fluctuations, but there are certainly options out there for younger girls to switch periods off.
  Horrid though it is to think of, our daughters are much more vulnerable than other girls to being exploited, so it is worth thinking of ways to keep them protected from unwanted pregnancy once periods start too
• Hi Cathy
  What a dreadful time for you both. I'm sure the dr can do something to help as in theory if she had irregular and heavy periods, this could be on going for two out of every four weeks.
  Please see the gp again tomorrow and see what else they can do. Maybe they could perhaps do something like nikki has suggested?
  Please keep us posted. Thinking of you.xxxxx
• Your poor baby girl.
  I really hope your GP is more helpful tomorrow, you can't put her, or yourself, through this for the next 3 years. If she's aleady worked out when her next period will be it will take over her life, she'll spend the weeks counting down just waiting for it to happen.
  If you don't have any joy tomorrow is there anyone else at your surgery that can help? Do you have practice nurses that might be more understanding. I guess you may end up having to go to a paediatric gynae as nicki suggested (I didn't know they existed either) you may have to go private but it would be worth it.
  Good luck to you both, I really hope you get the help you need.
• Hi OP, this is really awful for her and you Nothing helpful to add but had to acknowledge how dreadful this sounds, and unfair.
  Hope you got better help from the GP today.
• Cathy - ask the school to help you contact the school nurse - I mean the one employed by the NHS (it may be a 0-19 team where you are, or specific to schools, since re-organisation it varies). She will have experience & information as well as access to specialist help if needed (in some areas they can do direct referrals to specialist paediatricians, though this may not be needed)
  I hope you got a bit of help from the GP today - but "stopping them" is not a viable long-term option, and the "injection" will often result in a small amount of break-through bleeding so your daughter does need help & information - and you need support in dealing with this.
  You will find a number of girls with special education needs do find this scary & difficult, so you need to find someone who has the experience to deal with it. Your GP may be a short term help, but most will not have the specific skills & experience.
  Good luck.
• My daughter had tablets to stop her period coming on when she went on holiday, but i dont know if you can take them all the time. She was 12 when she got them off the doctor.
• poor girl
  what about the implant? the stick thing?
  sorry i dont know the name of it
  that stops them,
  maybe she could have that under the circumstances
  there must be something that can be done to help her
  i hope something helps OP
• Well I have just got her to school this morning and have decided with the school that if needed to pick her up at lunch time, bring her home, change her and return her back. It is lighter now as it is day 6 but still dont think she can sit in it all day. She is now too frightened to go to the toilet and is giving herself stomach aches which she thinks is period pains so hot water bottles are being used. I have a hospital appointment tomorrow with her so am hoping they can help in a big way with her fear. I think everyone is right in saying that popping a tablet/injection is a short term fix and not really dealing with the problem long term. Unfortunately once the barrier of fear goes up with her you can not get through to her to tell her that it will ok etc and whats starts off as fear turns her into a hysterical girl. She had a big fear of 'periods' from year4 when they were taught this at junior school and ever since has kept saying I don't want to turn 12/13. Even on her 12th birthday this was over shadowed by the dreaded 'P' and worry instead of being happy and excited. She also came out of school crying in year4 asking if it hurt laying eggs. I know they have to be taught but why couldn't her teacher take the nurturing group out and teach them differently as the harm was done from that day as black is black and white is white to her. I went out yesterday for a 2hour break as friends were saying if you leave her with your mum she WILL HAVE TO do it herself. When I got home my mum bless her had to change her as she was holding on for so long not wanting to go to the toilet that the tummy ache was unbearable. My mum was fine about it as she couldn't sit and watch her uncomfortable.
  Lets hope tomorrow is the start for onwards and upwards.
  xx
• does she cope with normal toileting at school or does she have a carer to help? If she copes normally, then she WILL cope with this, it's just a case of getting to her own level of understanding - would she respond to a big "celebration" of the fact that she's growing up - maybe a special "grown up" necklace or something as a present?
  If she has a carer at school to help with toileting, they will help with this too - there is a young lady I know who has a carer to help with toileting and the carer also helps with period related issues.
• I know the pill has been prescribed to girls younger than your daughter because of 'heavy' periods etc. would it not be possible for docs to prescribe it for her? Seems cruel to make her go through this every month when it could easily be stopped!
  PS if doc wont prescribe it - perhaps family planning clinic may?