To try ASD 13 year old on the pill to see if it helps her mood?

[StressedSuzie]

She won’t take anxiety medication - well she would if our family GP could prescribe but she can’t

The GP suggested this as will help if any of her anxiety is hormone related and she is definitely a lot more exhausted / moody / low in the lead up and whilst on her very heavy periods but I’m now second guessing myself to whether this is a good idea or not?

Gaderel 20/150 is what she’s been prescribed

Well it definitely did not not help my moods op! I was on progesterone only once (heavy periods) and that sent me through the roof. I stopped taking the pill after I had child number one and dh used condoms because it just didn't suit me at all hormone wise.

Thank you for your reply - I am worried about trying it but also about not

Our DD (15yo with ASD) started the pill (Microgynon) last year due to heavy and painful periods. She runs the packets together so as to skip periods and only has a planned bleed every 3 months or so. She times the bleeds for school holidays when she doesn't have any plans.

This has worked really well for her and she hasn't noticed any side effects. It seems to help even out her moods a bit, and also the ability to control the timing of bleeds is really helpful. It's also great that she doesn't have to deal with so many painful and debilitating periods at unpredictable times. This is going to help a lot during the GCSE exams. I wish we'd started her on it earlier.

My asd daughter sank into depression when being put on the pill. She's moved across to the patch which has helped with her pms moodswings however if she's struggling outside these times she's usually just burnt out from school the older she gets (now 16) the harder she finds it. If your gp is not willing to prescribe anxiety medication ask for a referral to a paediatrician.

I think it's one of those things that you have to try to see how it affects you. If she wants to, I'd let her try for 6 months.

The good thing about the pill is you can trial it and if it doesn't work (for the vast majority of people)there's no issue coming off of it.

Can she consent and does she understand what it's for? Our GP didn't want DD trying the pill so young and prescribed Naproxen for periods instead

@StressedSuzie @Bitzi
I hope it's OK to revive this thread, and that you are both still around.

I am in a similar situation with (just) 16 YO DD with ASD, and am looking for information from other parents of ASD girls/mothers with ASD themselves.

Suzie , can I ask if your DD when on the pill in the end and how that's been?

Bitzi , is your DD still OK on it?

@stickygotstuck yes, she is and it's an absolute godsend.

Her body seems to have adjusted to it well and she's not getting the breakthrough bleeding (which she had a couple of times when she was getting used to it. That may have been because she sometimes forgot to take it, though! Now I double check every day that she's definitely taken it; it helps that the packet has the days of the week marked on it, so I can just look every evening to make sure the pill is gone.)

Also she recently had some blood tests and it turned out her iron is low. Probably because her periods were very heavy (still are, when she has them) and she's a vegetarian. We're trying to build it up with supplements now. But I'm pretty sure her iron situation would be even worse if she was still having monthly bleeds.

Lots of teenage girls end up iron deficient. So this might be another factor to bear in mind when deciding whether to skip periods.

Thanks very much for getting back to me @Bitzi !

Glad to hear your DD is still finding it helpful, that's very encouraging.

Any weight issues specifically? I ask because DD has an ED so that is a worry.

I am naturally very reluctant to medicate for anything, as is DD. But things are getting worse now and I am quite worried about her mood, which has become horrendous for about 2 weeks every month. She is very, very low, hates herself and everybody else, her sensory sensitivities are through the roof, she cries at the drop of a hat and she becomes so, so angry.

DD started periods very early at age 10. The only changes are (a) she's older and school is more demanding with GCSEs and more complex relationships, and (b) she has an ED and her periods stopped briefly due to low weight. They restarted - albeit more irregular - after a couple of months when she put some weight back on. But since then periods are much worse than before.

I suffer from PMDD and I am on the pill indefinitely because of that. I'm not 'happy' but I don't have the rage spikes from hell on it.

I have done some research and read about this but cannot find anything definitive specifically about ASD girls. I would not consider this for 'normal' PMT but this is something else. But I also wonder if the ED has affected her periods and whether waiting a few more months will be best - but then she may not survive her GCSEs.

I plan to take her to the GP but I need more info beforehand or will be fobbed off. The knowledge about how ASD interacts with other health issues differently is often non-existent.

Sorry, I missed your second message.

DD was on iron tablets for a year before her ED diagnosis. She is now supposed to be taking a multivitamin daily - but she does not. I am not sure if she genuinely forgets, or it's just that she does not want to take any tables. Even with crippling pain, she is very reluctant to take the odd paracetamol.

Which is why I need all the info I can find to get her on board with any other pills!

Hi @stickygotstuck - that does sound like a very, very difficult situation. I really hope things get better for your daughter and for you.

I agree that GPs in general are often very dismissive of any problems around periods - and, as you say, the knowledge of how ASD may interact with things is sadly lacking. I wish I had more useful info that might be helpful. I will give what info I do have, but this is only our personal experience and hopefully others might join the thread with other perspectives.

DD didn't seem to have any particular reaction to the pill in terms of weight. In general she is a normal weight and doesn't have an ED (crossed fingers) - she does have other issues, however, in particular OCD and panic attacks. She started taking fluoxetine for the OCD a few months before she started taking the pill. The fluoxetine made her lose a little weight initially (lack of appetite, I think), but once she got used to it then it levelled out. A few months later she started the pill, and that seemed to have no effect on her weight either way as far as I could see.

I'm assuming that if you have PMDD then it may be more probable that your daughter has it too. It does sound like it, and I'm sure you would recognise it. Whether the GP will respond to this in a helpful way is obviously (unfortunately) doubtful. We were lucky to find a helpful GP. The GPs had previously prescribed mefenamic acid and then tranexamic acid to DD in an attempt to help with her heavy and painful periods (n.b. these symptoms are obviously not exactly what you are seeking help with; I'm just giving background). The mefenamic acid made her throw up, and the tranexamic acid didn't have much effect at all. DD had initially been resistant to the idea of going on the pill, because she was worried about side effects, but eventually came round to the idea because other methods weren't working.

I didn't encounter any resistance at all from the GP to the idea of DD going on the pill. In fact, it was one of the options offered to her initially, but she preferred trying the mefenamic acid and tranexamic acid first. Once DD decided to try it, the GP explained the pill to her to make sure she understood what it was, and what the side effects might be. They also took her blood pressure and measured her height and weight (this may be something to bear in mind, if your daughter is sensitive to being weighed).

Sorry for the info dump - I'm just trying to give as full a picture as possible, in case anything is useful.

N.B. I had an ED when I was your daughter's age, and experienced much the same in terms of my periods stopping and then being much worse than before after I regained some weight. No idea of the mechanism behind this, but I do recognise the situation. I do really hope you are able to get useful help for your DD.

Oh, that's really difficult if she's resistant to taking tablets.

The pill is obviously very tiny and easy to take, if that makes any difference.

Might it be possible to get continuous birth control/period control in some other format, if it's just an aversion to tablets? I think it's possible to get an injection every 3 months, for example, or an IUD. But these might be even less appealing than taking tablets! Or perhaps she just has an aversion to the idea of medication in general.

I took gedarel 20/150 for years.
I had mood swings/very tearful on rigevidon (cant remember how to spell it)
started when I was 16, continued it into my 20s.
I wouldn't say it helped with my mh issues but also didn't make them worse. it resolved any 'when is it coming' worries that I had a lot of as a teenager

@Bitzi , thanks very much for your post. You can dump all the information you want on me, I need it! 😊

It's great that your daughter didn't have any ill effects, and that weight wasn't an issue. Interesting that she didn't wish to go for the pill straight away. I think DD will be similar. I only hope that antidepressants are not not suggested instead. I am fundamentally opposed to them as the first line of treatment. I was prescribed them several times when I am certain they were not appropriate.

It is interesting that you also had a worsening of your periods after weight loss. Did they go back to your 'normal' after a while? EDs are insidious things with longer lasting repercussions than we'd like to think.

Periods & hormones are another right pair of bastards, and it is infuriating that so many doctors dismiss them as 'one of those things'. I have a pet theory that Nature only throws at you what you can cope with. My main problem was my moods and the volume and length of periods, but not so much pain (in fact, I remember being jealous of friends with 3 days' long periods and bad pains on the first day or so, rather than the 2 weeks of feeling like the Hulk in every sense of the word!) DD was similar until the ED, but now she also experiences intense pain and cramps to contend with, plus the even lower mood.

I think I really need to talk things through with DD, and then the GP. Appointments are like hen's teeth here, but I wonder if it would be worth going without DD once, and then again with DD. Her resistance to medication is more in general, and tablets would be preferable to anything else I think.

Thanks @adulthoodisajoke . I am not familiar with those two pills, but I have had a quick google so I have an idea of what they are like before I speak to GP. That's how I feel about mine (Logynon first, now Cilest) - at least they don't make me worse, which bearing in mind my history, it's saying something.

Can I ask if you are ND in any way? You don't need to answer, obviously!

I have another theory (!) that some women (and I think ND more so) are better off on some sort of hormonal medication. Despite the fact that I am also very averse to taking any chemicals at all if you can help it. There is some limited research to confirm this so I am going with it for now.

Yes I am ND. (not autistic/adhd but diagnosed with other things)
I came off the pill a few years ago.
I wondered how id be without it and my cycle was a lot more manageable as an adult.
I suffer with severe mental illness whilst taking it as well as when not.
I didn't find any improvement due to the pill other than in direct relation to my period. which in turn made that aspect of life easier

Thanks @stickygotstuck - yes, I did find my periods got better eventually (but then got worse again after I had kids!)

Incidentally, I very likely have autism too (assessment pending) and life is MUCH better with the mini pill (all run together to prevent periods). I think you may be spot on with your views on hormonal medication.

Best of luck with all this.

The pill isn’t going to help her moods that are likely due to anticipating awful heavy periods. I would ask GP to see if there can be investigation into why her periods are so heavy and in mean time make sure she has good iron intake.

@Bitzi . Same here! In fact your experience sounds very similar to mine. It's good to find someone who seems to confirm 'my' theory. You know when you see something very clearly and the doctor says 'Not in my experience' or my favourite 'But that's very rare'? Someone has to be the 'rarity', right? Which then turns out not be that rare at all, especially with women's health.

Thanks very much for the good wishes 🙂

@adulthoodisajoke , thanks for answering my question. Glad that at least period issues where alleviated, but sorry to hear you are having such struggles.

@SugarandSpiceandAllThingsNaice , thanks, we will be going to the GP. But I very much doubt that it's the anticipation of her period. In fact, she doesn't normally think to put two and two together, but it's becoming evident to me. The heaviness is not so much of an issue, as that's 'normal' for her, it's really the very low mood and the anger. The pill did help me with that - somewhat- so like PP said, it may be similar for her.

Hi @Sprinkles211 . Sorry, I missed your initial message.
Hope it's OK to bring you back to this thread if you are around.

Can I ask, how is your DD now? Is she still managing better on the patch?