To think that my daughter isn’t well

[mumto3xxx]

I have posted about my daughter previously. She is 23 and has autism and other special needs also. Recently there has been a huge change in her and I don’t think she is well (I don’t know what’s wrong but she just isn’t herself). She has become quite depressed suddenly- she cries all the time and has the most unbelievable meltdowns (we are used to these with her autism but the ones she’s been having recently are by far so much worse than we’ve ever seen- she will sit crying and screaming and talking about harming herself), she is having barely any sleep (she has never slept that well but is on melatonin but recently this has made no difference). Her periods are also very irregular and she will only have one every few months. She is also very constipated and as a result of this she is quite uncomfortable and often in pain (her diet is not fantastic but it’s not awful in that it would cause terrible constipation- she does eat quite a lot of fibre). She is arguing with everyone at the moment and really causing a lot of problems in our family. She also has quite bad hot flushes and becomes quite flustered (I realise that this may be due to her autism though). In the last two weeks she has seen her psychiatrist and three different gps and I have expressed these concerns to all of them but they feel they are just manifestations of her autism and I think that they think I am just being an over worried parent. I was just wondering if people think I am being unreasonable to think there is something more wrong with her and also what I can do next as I am really stuck. Thank you x

If she'sconstipated then adding more fibre to her diet (if she already eats a fair bit) may actually make things worse as it slows gut transit time and adds extra bulk which is not really what's needed. If she is being treated for chronic constipation then please dont stop treatment the moment she becomes regular - it takes months for the bowel to recover.

My special needs child aged 4 has melatonin every night like many others. It is not addictive ! You can buy it yourself if needs be.
I would definitely push for blood tests and specifically hormone level checks. It is wrong to expect her to suffer for a few more months. Honestly why can't doctors accept parents are the best judge of whether their child is ill or not.

The 3 GPs i saw said she looks well. So do I, but I have a genetic condition that is incredibly painful and a chronic infection that I’ve been on very strong antibiotics for since last October. Not saying DD is seriously Ill but going by how she looks is not a reliable indicator as to her health . I agree that blood tests for liver and kidney function, thyroid, iron, vit D etc is a good place to start and to go from there. Also agree with getting a print out for the reason Hecateh gives. Being autistic does not give doctors a free pass to attribute every symptom DD presents with down to that.

I also think you should consider a pregnancy test, just to be sure - unless you are very confident that she understands the mechanics of sex, relationships, potential abusers and contraception well enough to protect herself, or come to you if there is a problem.

I'm surprised a blood test hasn't been suggested. Definitely push for that at least.

I had very low vitamin D and it manifested as itching and sweating, I thought I was menopausal. course of tablets and it lifted. I have b12 jabs three monthly now and they lift my mood.

Honestly so many simple vitamin deficiencies can cause big symptoms so worth investigating.

OP that sounds awful for all of you. Without wanting to get all TMI about the constipation, if she is feeling the urge to go but nothing comes down the pipe, as it were, ask the pharmacist about suppositories.

Definitely keep pushing the GP for blood test. On reading your OP I thought PCOS or thyroid. But I am not a doctor, nor do I play one on TV.

GPs can be twats at blaming everything on an existing diagnosis. I have a family member who has been having increasingly severe symptoms of tiredness, digestive problems, joint and muscle fatigue and brain fog.

She was basically told "It's all due to your anxiety and depression so fuck off "

After 6 months or so trying to get someone to take it seriously, her BF paid for a private consultation with a specialist in Chronic Fatigue Syndrome. Turns out she doesn't just have CFS but also hypermobility which has led to Fibromyalgia. She also has IBS.

The specialist wrote a quite sharp letter to her GP. It has been incredibly life-limiting but she is slowly recovering more energy. I'm so angry on her behalf that it took so long, and going private, to get some actual fucking treatment.

that makes me so angry and upset to read (my DD has ASD + learning difficulties too).

Clearly, she only didn't get any further tests because the ASD explains all these symptoms (not!).

I would insist on blood tests, thyroid etc.

You know your DD best. My Dd's behaviour goes downhill when she does not fell well.

Challenging behaviour is clearly a sign in my DD that something physical is going in. Your GP has a lazy approach. I would see a different GP and also complain to the surgery. Of the those with SN unfortunately get only a lesser NHS service than those without. I had to challenge this a few times for DD. Our kids are medically speaking lesser people.

Hope you get to the bottom of it!

Thank you all for your replies! Her behaviour has deteriorated dramatically this afternoon and she has spent all afternoon slamming doors and crying and screaming. I am considering calling the out of hours centre where we are as I’m not sure I’ll cope through the night with her

Call them. Best wishes, wish I could come and sit with you x

Oh no I’m so sorry to hear your latest update . Can she elaborate on what kind of physical symptoms she’s having or why she’s doing what she’s doing . Any pain passing urine etc, headache , feeling sad etc ? I would definitely seek medical advice and explain that her behavior is out of character so they don’t try to dismiss it like before as related to Autism . You’re her mum and know her best so don’t let any health care professionals try to dismiss your concerns etc .

@zzz1234 thank you so much, everyones support really does mean a lot.

Also , like zzz1234 says , I wish I could come around and help you.

I definitely agree to call them it sounds so difficult. I would also insist on further investigation.

@Emilizz34 Thank you for your reply, she's been physically a bit better this afternoon- she's just had the most unbelievable meltdowns and tantrums- she's been screaming that she wants her dad to leave and that she just wants it to be me and her. She's cried so much and keeps slamming doors (I think to get my attention) and talking about how she wants to run away. I've given her some melatonin so she is asleep now. I called the out of hours team and they've given me an appointment with an out of hours gp in the morning, so hopefully they will help- we've just got to get through tonight

hope you get through the night ok and that you get some help tomorrow. It's really crap GPs who often know very little about ASD attribute so many things to it just to fob you off.

Hope tomorrow is a better day!

Trust your instincts. Can you get her to a private GP? If not, go to out of hours until someone takes you seriously.

Mother of an autistic DD. We often get painted as over anxious by people who have no idea what we deal with on a day to day basis.

can I just say again, that you should give the melatonin every night. dont worry about getting addicted to it. My eldest has had it for years, but he doesnt have it when he goes to his dads and has no ill effects if he doesnt have it apart from sleeping less. Its not an addictive drug. Your daughter will not cope with no sleep

@branleuse thank you for your message, sorry I meant to reply to your posts earlier. I'm sorry to hear that you struggle anxiety too with your autism. I didn't realise that melatonin wasn't addictive- I'll start giving it to her nightly in that case- I'll have to speak to the gp to get more prescribed though as they only prescribe enough for two nights a week per month.

Also, my husband picked up a pregnancy test earlier from the supermarket so I will get her to do it in the morning before we see the doctor.

Is there any chance she might be being abused or have been 6-8 weeks ago? Changes in mood and her autism might mean that she isn’t quite sure what happened or why she feels the way she does.

I hope she has a peaceful night and that the out of hours gp does some blood tests and can find a solution.
I had been putting on weight, without any obvious significant change in diet. Had bloods done as was due a medication review for underactive thyroid. Has a call to say I needed to see the doctor and expected them to suggest an increase in dose.
Had an appointment with a lovely locum. The results showed I was being over medicated, so should have really been losing weight. She was puzzled trying to look back through my notes, so I explained the more recent history and taking that into account she adjusted the dose.

The lab (they vary as they use different scales) sees anything between about 1 and 4.5 as normal. However I know that I am best at around 2 to 2.5.
You know your daughter and what is normal for her. Hopefully an out of hours gp, not knowing your daughter, will take note of what you say is normal for her, and see things from a different perspective to your normal gp.

Fingers crossed you get through tonight ok and get some help tomorrow, OP.

I’m sorry I can’t offer any help or advice.

Sounds so hard for you all. OP, I think you're wonderful

Is she on any painkillers? or perhas drugs, prescribed or not?

Could it be endometriosis
This describes my symptoms to a tee
I thought it was early onset menopause and now I’m waiting for surgery after being fobbed off for months.