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

I lost 1.5 stone before I was diagnosed as hypothyroid as I had gone quickly over then under. I was actually accidentally diagnosed as well because i was tested alongside tests for glandular fever. I would definitely push for comprehensive bloods.

@QOD thank you for your reply! No her weight hasn’t changed at all! She does have some facial hair although she had the blood test for pcos about three years ago now and it came back that she didn’t have it (she didn’t actually have irregular periods back then it was just because she had acne at the time and hair on her face and abdomen)

@endofthelinefinally thank you for your reply! I’ve been giving her laxatives for about 2 weeks now- the gps encouraged this and said to change them up and hopefully it would improve things for her!

I have a teen dd with Aspergers too who has similar symptoms, I put it down to her poor diet, she often misses a period, is always tired and complains of feeling unwell, also has hot flushes too. It’s so hard getting anyone to listen as they always say “oh, it’s a part of her autism” when there’s also a chance it could be something else. It could be a number of things, for my dd I think it’s probably lack of iron but how ever much I try she will not eat good food (lives on carbs and cheese).

Coeliac disease? Irregular periods, constipation and depression are common-ish symptoms - does she eat a lot of wheat/barley/rye/oats?

Did you not know that if you have autism (or depression for that matter) it protects you from all other diseases known to mankind. Well you would have though so according to our GP anyway.

Probiotics are good for gastro issues and can help with constipation get high rise from health shop try for a few weeks.
Record detail food intake for a week and see community dietician or nutritionist .
Ask for blood tests.

I also have an adult daughter with autism, and we are both heartily sick of every other symptom being blamed on her autism - it might affect how other conditions manifest themselves, and how she reacts but autism is not always the cause . My daughter went through several years of feeling sick all the time - she did have tests and an endoscopy, but basically doctors said there was nothing wrong and she had to put up with it. We eventually consulted a naturopathic nutritionist - she made lots of recommendations for diet, supplements etc and now my daughter feels well. It seems that autistic people often have difficulty with digestion, and may have fewer gut bacteria than neuro-typicals. Dd had many unidentified intolerances, and following a special diet has helped enormously, along with taking digestive enzymes as a supplement. It was fortunate that she was prepared to change her diet (as a sceintific experiment). it is such a shame professionals are often so ignorant of autism and unwilling to consider the bigger picture. Good luck with helping her to feel better.

@oneineight we must have the same gp!! You have absolutely hit the nail on the head!

I was diagnosed hypothyroid when my weight was at my lowest. I know of at least 2 other people with hypothyroid who are tiny and didn't put on weight. I say push for comprehensive blood tests (and if they announce she is 'borderline' hypothyroid, check it against NICE guidelines).

Having autism is like being overweight. When you are ill no one sees past it.

You know your DD, keep pushing, go to a walk in, book with a locum - whatever it takes to get blood tests done and be taken seriously.

Being normal to have I rregular periods at 23 is complete BS

In the meantime, get her to drink as much water as you can and get her to exercise (even just walking) as much as you can. You might have to be very sneaky how you do this, but hopefully it’ll help with the constipation which can make you feel really, really, awful.

Word of warning though, do not give her/allow her to be given large doses of laxative over a long period because it can make things worse and mask the real issue.

Hormone imbalances are common with ASD, some say it’s what causes autism in the first place.

I have been reading up on it as I suspect my youngest dd has PCOS (she has dark facial hair, acne and irregular heavy periods) and there is a link with ASD.

Get gp to take bloods and check hormone levels and ask for further investigation, don’t be fobbed off.

Sorry your going through all this OP, I would say to the G.P I wanted all the blood tests doing for hormonal imbalances and a pregnancy test and urine as well. She might have a urine infection and they can send anyone over the edge.
It only takes a minute to get pregnant and no one is supervised 100% of the time unless they are in a secure unit or something.

the liquid lactulose works best for severe constipation (according to my elderly dad)
Autism does make mild to moderate physical discomfort feel unbearable so her melt downs could be linked to the constipation. But depression and irregular periods suggest a hormone imbalance. As @OneinEight said, GPs do seem to think autism excludes all other illnesses. You know your daughter and these symptoms sound worrying. Keep pushing. God, the battles I had to have any of autistic DS's symptoms of other severe problems diagnosed. I practically had to stand shouting in the hospita; cporridors to be listened to. (I did that once, actually, and got a crucial diagnosis from it. )

I agree with the others who said look into the constipation. My mum hadn't gone for ten days once and it manifested in her exploding in behaviour that wasn't her "usual" manner. She was sobbing, saying weird things, asking to die, pacing and general scary behaviour.

Don't underestimate the damage the toxins will do inside, it needs looking at! Good look to your daughter

Luck*

More fibre (psyllium, fybogel) better than laxatives, fruit, apples, rhubarb are good, oats, green and root vegetables, brown rice, bread. Dried fruit in moderation, pulses, beans and peas, lentils, chickpeas. Baked potato with skin, houmous. Enzyme digest may help.
You are right to be concerned, doctors too good at ignoring symptoms.

PMDD is much more prevalent in women with autism. I wonder if shes having some sort of hormonal issue. She might do well to get her hormone levels tested, or try some supplement like agnus castus.
It does sound as if shes very overloaded and on the verge of breakdown. Im assuming she lives with you.

Your poor daughter that sounds wretched. She sounds so unhappy. It is be so infuriating knowing that your child is unwell and being told it is due to her autism. As if that means nothing else can ever be wrong.

Has she had any new medication recently that could have caused side effects?
Is there any possibility she is being bullied or abused in any way?

Can you change GP's and find someone a bit more proactive and empathetic?

I hope you get to the bottom of it soon and she feels much better.

Fragile X manifests with early menopause and is often called autism.

@Branleuse thank you for your reply! I think you are absolutely right she is on the verge of a breakdown. Yes she does live with us. It is so heartbreaking to watch. We haven’t had a day in the last six weeks where she hasn’t cried and she’s talking about harming herself- I have alerted the mental health team and now they are seeing her weekly but she is complaining that she physically doesn’t feel well so I worry that all the mental health help won’t really help her if there is something physically wrong.

@Panannypanoo thank you for your reply! Our gp is normally fantastic with her so I’m absolutely shocked that he’s not been this time. The only medication she is on at the moment is melatonin (she can only take it twice a week to stop her becoming dependent on it)- she has recently been diagnosed with adhd and the psychiatrist wants to give her medication for that but I have said she can’t start any new medication while she is still having these physical problems.

anxiety can make you feel pysically unwell. I have autism too, and sometimes when i get depressed or anxiety really bad, i cant tell whether its physical or mental. Everythhing just feels awful. It can be really scary.

why can she only take melatonin twice a week. If shes not sleeping properly, she NEEDS it. Autistic people really often dont produce it naturally, or not nearly enough. If she is having these problems then sleep is the number one thing that needs to be tackled, as the body and mind break down so quickly without it.
She should have melatonin as and when she needs it in order to get her sleep pattern back. It is not an addictive drug and its very safe.

I was underweight when I was diagnosed as having an under active thyroid. According to my go I didn’t fit the criteria for being under active and shouldn’t be treated, even thought the test results said different.