Precocious Puberty - any experiences and final outcomes?

[Ploughingthrough]

Hello. My dd age 7.5 has been diagnosed with Precocious Puberty. I took her to the doctor (we are overseas) with some very low grade symptoms expecting to be told I'm overreacting and its all normal, but a battery of tests revealed that she is in true puberty. We are lucky because she has not yet had any breast development or a growth spurt so nothing much for her to notice (although she is already super tall!). The doctor advises that she has hormonal treatment for this for a few years because she has a bone age advanced by two years and this could comprimise her final adult height. He also says that periods in young girls are hard on them emotionally and he would expect hers to arrive quite early. She is already the anxious type and I don't want anything to compound that. I know in the UK it's possible she would be 'early side of normal' rather than precocious but we will act on the advice given here as he is a very well qualified and experienced doctor. I think 7.5 is very young.

I am just looking for anyone else who is on or has been on this journey and their dd or ds is a now a happy teen or adult! I was very upset, but I have calmed a little now and I realise it is very treatable and not something she has to be treated for forever. There are much worse diagnoses. Just wondering how to talk to her about it really without making her worry or feel like there's something wrong with her. Thanks!

Anyone?! I know it's not a very common diagnosis but I'd love it if someone had some experiences.

Hi ploughingthrough, very glad to find your thread (although of course I am sorry to hear you are going through this with your dd). We are also based abroad and are currently a few steps behind you with my dd who has first signs of puberty aged 6.5 years (breast bud on one side, underarm hairs) and her paediatrician has recommended we have a hand x-ray done which we are now waiting for. That will hopefully tell us more. She is also super tall for her age, but always has been, and there is no evidence of a recent growth spurt. Like you, I was very worried and upset initially because she is so young for this, but after reading more about the condition and possible treatments I feel more confident this is something that we can manage if the diagnosis is indeed confirmed. I found a couple of older threads on mumsnet which were mostly reassuring. As my dd pointed out that her nipple was painful to touch and she knows that this was the reason for our visit to the paediatrician, we have limited the conversation with her to that for the time being (just saying that this is the very beginning of breasts developing, but that it will take a long time for breasts to fully develop like mummy's, all people are different, etc.). At the moment my dd does not seem overly concerned herself, but she is also quite sensitive and can be quite anxious in some social situations, so I am hoping we can continue to reassure her as we go through further testing.

May I ask what testing your daughter had to confirm the diagnosis? How has she reacted to it?

newintown2014 hi. Sorry to hear you have these worries too but it is good to virtually meet someone else in the same position.
My DD had symptoms only of body odour and some very light underarm hair. I almost didn't take her because we're a dark and hairy family anyway and I didn't know if it was anything special. But with her very tall height (She's 133cm already) I thought it was worth a check. Like your dd, she's always been tall - on the 91s centile, and has had no growth spurt. Before the blood tests the paediatrician thought she was only in premature adrenarche because she has no breast development at all.

My daughter had a hand and wrist xray which confirmed her bone age at 9 years 6 months so exactly two years ahead. This is a key feature of PP. She then had a blood test result which showed that she is actually releasing the true puberty hormone (can't remember the name) - the fact she is no breast or genital development is unusual but it could signpost that those things are round the corner. So she's theoretically in precocious puberty because she is under 8 and is releasing the hormones, but her body isn't in the obvious phase of puberty. This could suggest that she's starting early and could go really slow and have a period at an 'early side of normal' time but it's impossible to tell.

The main concern is her Bone Age. He said if she stays two years ahead her predicted adult height would be between 160-164cm which is actually fine, but what normally happens is bone age increases to 2.5 then 3 years and then you're in a position where she is pretty tiny.

She is not currently anxious because she has nothing much to see as far as she's concerned - nothing going in with her breasts and the hair is so light she can't notice it - so we just said the tests were to check her growing. If we get to a treatment phase then I think I will tell her that she's growing a little fast and we're just going to help her body to wait a bit longer.

I think if the paed definitely wants to go ahead with treatment we will as I don't want her in full blown puberty at 8 for her emotional health, and I don't want her to end up being unusually small. I hope your dds further tests will help see if she's in true puberty. I'm very reassured by the fact that it is very treatable, and the treatment would only be a few years then she can get on with growing up alongside her peers. I hope it would be a distant memory for her by high school. Really, it would only be around 12 injections and a couple of scans in her whole life. Sometimes I get upset and worried, but I remind myself that there are MUCH more worrying things that a child could have than PP which is treatable.

How tall is your dd? And what country are you based in if you don't mind me asking?

Thanks so much for your detailed reply, ploughingthrough. My dd is currently 127 cm, so also 91st centile. It is interesting what your paediatrician said about bone age possibly increasing more rapidly as time goes on, as that is something we would need to look out for and take into account if we were in a position where we need to take a decision for or against treatment. I guess we will need to wait for the outcome of the hand x-ray and any further testing that may be recommended - we already have a referral to a paediatric endocrinologist but need to do the x-ray first. We are currently in Italy and although I feel the paediatrician was taking things seriously I also got a sense that he did was not overly supportive of treatment. I hope that would not be an obstacle if we were to opt for treatment but would not hesitate to get a second opinion if required.

May I also ask whether you have you also noticed any changes in your daughter's behaviour? Our previously calm and cooperative dd has recently become quite defiant and stroppy, especially when she is tired - I had initially put that down to lockdown, homeschooling and recent changes in the family, but am now wondering whether it's hormones instead!

newintown she's the same height as my DD a year ago. I think the BA thing is actually the thing that needs keeping an eye on - DDs is currently 9.5 although there are cases of children with BA much more advanced than this who definitely get treated. As she's cruising towards 8 she's borderline precocious too, although I think 7.5 is extremely young for this and I think the emotional impact could be unpleasant for her which is why I am in favour of treatment for a couple of years, as well as the potential height issue.

I know treatment is not always popular in Europe (I'm in Asia) but you should take note of her bone age scan result. If it's not advanced (or not very) she may not need treatment as her adult height will probably be fine.

In terms of her behaviour, not so much. She's quite an easy going kid and whilst she has a few strops I would say they have increased in frequency from the toddler days. I think it's definitely worth noting though - if those behaviours are due to puberty starting then those levels of hormones are not fair on a 6 year old - they're so young still.

My DD started sprouting boobs at that age and was tall for her age. Saw the GP who was great, said endocrinologist waiting list was such that she would be 8 when seen which was no longer considered premature puberty, any and treatment may effect her development. We left it and although tall and well developed periods didn’t start until 11 and 9 months, so nothing out of the ordinary. So things sorted themselves out.

DefConOne thank you for this I really appreciate your input. As we are abroad we have private insurance so she certainly won't be 8 before she could start treatment if we decide to go ahead with it. Do you remember why he said treatment may effect her development? Can I also ask how quickly your daughter's development went - I mean, did she continue to develop puberty charateristics at 8 and 9? And how tall is she now? normal height?

I was also a tall and earlyish developer (I had my period about 11) and I don't suppose my mum was worried as I never visited a doctor, which does make me think perhaps if I let nature take its course she could well be fine. It's a tough one as it's not like she's 4 or 5 in which case I would be more definite about treating her. I suspect with the private insurance they will suggest treating her, so it will be our decision to make. My husband is more relaxed than me and is more of a 'let things sort themselves out' person - especially with my genetic background (most women in my family are early-side of normal developers).

Interesting. Both mine started periods at 9. Didn't think to worry about it as I was the same - but back then I guess precocious puberty wasn't a thing. The older one coped brilliantly but she is now worried that she has gone from being the tallest in the class to middling. The younger one is struggling. Perhaps I should have followed it up.

ritatherockfairy I only took her to the doctors as a precautionary check up as she is tall even by tall kid standards, and had some pretty serious BO that I don't remember having at her age! It was more of an instinct but it turns out her puberty is starting (although aside from the BO and a tiny bit of hair there aren;t any other obvious signs but that's what the hormone test says) The doctor just told me that after their period starts they have an average of 2 years growth left, so if it comes too early they risk being a bit short compared to their predicted adult height. He also said, however, that it's more of an issue for girls who start their puberty very precociously like 4 or 5 as they could stop growing when they are very small still. at 7/8 it's a lot more marginal. Socially this is more of an issue for boys than it is for girls though - there are lots of small-ish girls.

Trouble is you're working on averages all the time - I'm sure plenty of girls grow for longer than two years past their period.

3 teen DDs. They had knock out BO at 7. Armpit hair at about 8. One had her first period at 9, but wasn't regular for another 18 months. She is very small 148cm but comes from a very small family.

V tall DD had periods at 10/11. V sporty DD was the last one at 13.

I'm in France. Here they would say that you need to hit around 50kg to get periods - it's % of body fat. And that sport is the best way to delay them.

How much does she way and how much serious sport does she do?

@Ploughingthrough. Yes, I think you said upthread that you aren't in the UK. I suspect that here mine would have been considered at the younger end of an acceptable range. I am a bit concerned about the older one, though as she has definitely stopped growing - and your two year comment leaves me a bit concerned. I suspect that given the option of treatment I would probably have turned it down based on my own experience. The biggest issue for mine has been the lack of facilities at primary school - specifically no separate changing facilities for PE for girls and boys.

Hi Wallywobbles thanks for all your experiences. Your small DD - was she a small kid or a tall?

DD is 27 kilos only - nowhere near 50 so if that's a measure of when you start she's got a way to go! She's 133cm so her BMI (which they used as a measure in the doctors) is low. They said obesity is a risk factor for early puberty but obviously she is not anything approaching obese.

As for sport, she is a good competitive swimmer - she trains for 3 hours a week formally training and then spends at least another 2-3 in the pool doing lighter swimming. Obviously pre-corona. Right now she does no sport!

I suspect that here mine would have been considered at the younger end of an acceptable range
Yes, I'm pretty certain I would not have even got as far as an endicronologist in the UK. But here, you can go straight to specialist with your concerns and youre kind of expected to. So, it's going to be down to me and DH to decide if treatment is the right path, but without that future crystal ball I don't know whether it's necessary or not. We are only due to live in this country for another 14 months then we're coming back to the UK, so we could consider treating her for the time left she has in Asia and then leaving it when we go home.

In your situation in view of what you've said re sport and weight I'd leave it for now. Monitor if possible.

Small DD was always on the short side but also fairly exercise averse and a fan of carbs and meat so she hit 50kg at about 9/10 along with her periods.

Wallywobbles thank you I really appreciate your experiences and advice. My instinct is to hold back on medication for now, especially as her outward symptoms are so minimal, but my main concern is more about her bone age advancement.

We have an appointment with the endocrinologist next week to follow up on her results and I guess he will have some advice. The difficulty here is in all areas of medicine they are very gung ho about treatment and medicine because it's paid for in most cases by insurance. For example my DH had a minor gripe with his ankle and he was referred straight to surgery....
My insurance policy is generous and will cover any treatment she needs as long as a report is provided, so money (or saving it) is not part of the equation for the doctor - like it would be on the NHS.

I cannot see her hitting 50kg at 9 years old, she'd have to almost double her weight in 1.5-2 years. She eats quite normally and exercises a lot and has a slim frame inherited from her dad so I don't think that milestone will come as early as that.

I had precocious puberty,I am in my 30's now but had:pubic hair,breasts,growing pains and strong odour at 3/4 years old. I was the tallest in the class up until the age of twelve (5ft 2) when I stopped growing. I looked like a fully grown curvy woman with a baby face,men would hit on me and I was really self conscious (still am).I started treatment in year 1 my bone graphs did show my body was 25, when I stopped treatment at 14 my body was 28. I'm really small now!

Euridicefortuna thanks so much for sharing. Sounds like you had very definite precocious puberty there with very advanced bone age. Are you glad that you had treatment - did it help you? I guess if they hadn't treated you then you'd be smaller than you are now.

Hello,

I came across your thread today. I would be really really grateful if you could please let me know how you got on with your tests in April.

My DD has had all the tests done hand X-ray, blood test, MRI scan, ultrasound etc. Everything is normal except for bone age which is about 3 years older than her age. She’s 8 and has Breast development and a signs of pubic hair (scantily)

I’m now to decide whether she should start the process to suppress puberty.

How did you get on? And what did you decide in the end.

Kindest Regards

Anybody from this thread still active? My daughter is very similar to @Willowbrook1 above
We are just waiting on LHRH test results this week. 8 in Oct but bone age 11! Bo, breast buds and public hair.
Would be really grateful to hear if any of your children needed treatment in the end, how you made this decision and how it has gone. Thanks

We went ahead with the treatment @Subtleknife.
Treatment decision in voluntary not compulsory. We came to a conclusion to go ahead only after we sought a second and third opinion from consultants privately.
My DD has had 2 injections -4 weeks apart & no side effects so far. Hope this helps.

@Willowbrook1 thanks for letting me know. Does she have to have regular blood tests too (that's the bit my daughter dreads!) Will discuss once we know the results for sure

Yes regular blood tests. Our first will be after the 3 month dose @Subtleknife

@Willowbrook1
Hi
My Dd nearly 8 years old is also going through the treatment for PP but her injections are 3 months apart. Was wondering if you are in the UK and whether you were offered 3 monthly dose or not?

Mine has had her first dose and i noticed that her symptoms intensified. The endocrinologist said this was expected and that the symptoms will approve after the second dose. Please would you mind sharing your experience after the first dose with your daughter?

Hello @Reraroo

Yes I am in the UK. My DD started her dose a couple of months after she turned 8. The first 3 doses were a month apart. Then the 4th dose was after 3 months and will be the case going forward.

I noticed DD gains weight during the week of the dose and looks puffy - but this weight slowly drops after the second week. Apart from that no symptoms or moodiness. The 3 monthly dose also includes a blood test during the same appointment. I’m meeting the consultant in the next couple of weeks for the first follow up appointment since we started the dose.

I hope it all goes well for you!

Happy to discuss again if anything.