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Precocious Puberty - hand hold please

(17 Posts)
0AliasGrace0 Fri 08-Jul-16 19:01:43

My five year old has just been referred to the peadiatrician as she has developed pubic hair and smells of body odour. I noticed the hair around two months a go, not much and on her inner area of her labia - had I not have been applying some cream (sore from not wiping properly) I would not have noticed. I did a quick google and decided to monitor it to see how we went. On Wednesday I noticed that she smelled very strongly when I was helping her in the bath and so I rang the doctors on Thursday morning. To my horror, they saw her immediately, the referral was made on the same day and today the hospital rang with an appointment for August. It has all happened very quickly and I'm feeling quite raw about it all. She is very tall, but once her feeding issues were sorted as a baby she has always been in the higher centiles, it is nothing new for her, but now I recognise that this can also be a sign of precocious puberty.

As she was born early, we had a lot of intervention when she was younger and she was rereferred back to the peadiatric team last year due to hypermobility and associated sensory processing difficulties. We've had physio and OT involvement, got the school behind us and we've been "free" from appointments and hospitals for around 9 months. And now this.

I am usually very pragmatic, but I'm struggling with this at the moment. I feel quite teary (most unlike me) but I suppose this is to be expected. I feel terribly guilty that I didn't report it back when I first found the pubic hair, but as it was in isolation and because she's had so much intervention I wanted to wait and see.

Has anyone else had experience of this? I'm trying not to jump ahead of myself, but I'm very concerned about the possible tests involved as she finds these types of things extremely difficult. I'm also panicking in case they don't offer treatment (aware it is not useful for me to speculate) as I can't bear the thought of her continuing to go through puberty.

Any hand holding/suport/info appreciated.

Thank you

DangerQuakeRhinoSnake Sun 10-Jul-16 17:59:53

Sorry to read that you have something new to worry about OP. I have no experience of this but happy to hand hold.

On the plus side an August appointment isn't urgent so hopefully her actual health isn't being compromised by this.

0AliasGrace0 Sun 10-Jul-16 19:46:57

Thank you for the hand hold, it really is appreciated.

I guess on reflection her other difficulties have been easier to process as I have EDS, which is where her hypermobility comes from, and so I understand it (I've also got arthritis, but she's escaped that one as yet!). This is a different ball game, I have no prior experience to refer to, and no one to discuss it with who has been through it. My personal resources are a little limited at the moment as I've been unwell too, which is never helpful.

Yes, the August appointment has made me feel a little better. I work in a hospital within the same trust and so I know that a call within 24 hours will mean it's a priority appointment, but not urgent. I'm refraining from researching too much myself, as there are a plethora of different causes, and one of those is a tumour - which is rare, but it is not helpful to read those sorts of things at the moment. I keep reminding myself that early puberty would not be the end of the world, there are worse things, but due to her other difficulties I know she would find it very tough.

The good news is that at present she is taking it all in her stride. We went out and got some pit rock for her yesterday, and she thinks it's great! So it is safe to say that she's totally unaffected at present.

BeenThereTooSEL Sun 10-Jul-16 19:54:33

Hi OP, just wanted to say I have EDS3 and started puberty early too. I had all the tests, bone scans etc too and they couldn't find anything apart from early puberty onset. After I had my DD I was suffering with dizzy spells, blackouts etc and they then diagnosed Addison's disease which apparently can be common with EDS3. Which I have read can cause early puberty. Obviously mine is not very bad at all because it went unnoticed for nearly 30 years (and I was only dx with EDS3 in my mid 20s)

Hope you get some answers soon flowers

DangerQuakeRhinoSnake Sun 10-Jul-16 23:46:31

I had to Google pit rock grin Glad dd is taking it in her stride, that makes it easier for you too.

Also good to see there is someone on the thread now who can offer some direct experience <waves at BeenThere>

DameDiazepamTheDramaQueen Sun 10-Jul-16 23:48:58

Nothing useful to add OP except a hand hold and a wine x

0AliasGrace0 Mon 11-Jul-16 18:31:23

<gulp...wine goes down in one> blush and thank you. It's needed.

Yes. Pit rock. Slightly odd name, but I figured I'd better look for something a little more kid friendly than my usual chemical ridden cheap stuff. She picked it because it was pink, typical 5 year old!

Hi beenthere, fellow EDSer! We're quite sure my DD has it too, but I'm not pushing for the formal diagnosis as her treatment plan wouldn't change, so I figured there's no point. Do you mind me asking how old you were when your puberty began and how you coped with it? Addision's is something I've vaguely heard of but don't know much about. My EDS wasn't picked up until I was 32 when they were trying to get my arthritis under control. They think my pregnancy provoked it to become symptomatic, so I'm a bit of a dislocating mess nowadays. I'm pretty good at living with it now though, so I hope DD is as fortunate. Unfortunately she's exceptionally 'bendy', her hands do things that look like magic tricks...boogles the mind. I'm hoping all her support will help to keep her as healthy as she can be though, we keep a really positive outlook.

I've decided to ring up to find out about the possibility of going private on Weds (day off). If it's going to be quicker, I think I'll go for it that way I can't continue to beat myself up about not acting quicker sooner

Thanks for all the responses. I can feel my resolve returning. I've stopped feeling teary and I'm getting into 'deal with it' mode.

BeenThereTooSEL Tue 12-Jul-16 19:20:26

Hey! My periods started when I was 9. But my amazing mother talked me through it all before hand so I was completely unfazed. I shaved my arm pits from about 10. To be honest it was having boobs I struggled with the most. I wore a bra from the age of 10. But apart from that it was fine! Never had any other issues apart from early puberty!

I was dx due to pain and what we now know to be daily dislocations and sublaxtions. Mainly ribs and hips sublax and fingers dislocate. But I'm not on any pain meds, worked full time until we had DD etc. Lead a pretty normal life as a bendy!

0AliasGrace0 Wed 13-Jul-16 10:06:23

Hi BeenThere,

Glad to hear you coped well with it - sounds like your Mum did a sterling job! My DD unfortunately is utterly traumatised by blood, irrationally so, it drives me bonkers and no amount of reassurance works, she just goes into meltdown. But she's going to have to find a way to deal with it eventually isn't she? I currently have no idea how?! She didn't even manage to have her nasal flu vaccine last year, instead she wrecked the nurses office by throwing things, hiding, pushing objects over and screaming...lots. Complete overload for her and she was so embarassed by her behaviour, she's as calm as a cucumber normally and behaves impecibly. It's always sensory stuff which sets her off, which is rarely, but when she goes, she goes. I have no idea how they would even attempt any of the tests on her.

I've rung up a private hospital this morning and they're going to ring me back. Unfortunately there appears to only be one private paediatrician in our area, so I'm not holding out much hope that the appointment will be soon.

In other news, the ludicrously expensive pit rock is making her itch! Back to the cheap stuff I think. And here was me giving myself a pat on the back for being a good Mum...

DameDiazepamTheDramaQueen Wed 13-Jul-16 10:16:45

Simple roll on is good.

0AliasGrace0 Wed 13-Jul-16 12:37:51

Settled on Dove roll on - they had no Simple. I'll see how she gets on with it. It's pink and smells nice, so she'll be happy with that!

Spoke with the private paed's secretary. They have no appointments until August anyway, and we're away for nearly two weeks so we wouldn't gain much at all. She said we would go back on the NHS pathway if that's what we wanted (no insurance and the tests are ££££ - hasten to add, my parents are paying, I'm a single Mum so it's not something I could do). So ultimately even if we could be seen a couple of weeks earlier max, they wouldn't be able to do much other than offer an opinion and maybe reassure me. Her letter came through for her NHS appt and it's with the paed we saw previously. She was lovely and measured in her approach to DD's hypermobility, and I was impressed with her approach to DD. So, after weighing it up I think we'll stick with her current appointment. I'll ring the hospital and tell them that we'd accept any cancellations (unlikely, but at least I'll have done it) so I'll feel like I've covered all the bases that I could.

Now all I need to do is find her red book...any ideas where I've put that? Because I have no clue, and it's certainly not the first time I've lost it blush

0AliasGrace0 Wed 24-Aug-16 20:42:33

UPDATE

Thought it may be useful for others who experience similar:

Appointment was this morning and was very positive. Her height is just about OK but needs to be monitored by them as she is very tall...as she always has been...They explained that as she's under the age of 8, it has to be investigated so they took her bloods this morning. And they managed it! It took four of us, but she did really well and I was very proud of her. I need to get a urine sample from her (she's got performance anxiety issues, I think I'm going to have to see if she can manage it on her own). She's having a bone age test soon - I think this is just an xray, and then we shall have to see what the results of all of these are. They were clear that the causes are numerous, and may be something to worry about, but also may not be. They're also writing to school to explain their findings and request sensitivity for times when she has to get changed into different clothes for PE etc

It was our old doctor and a different one too, both were lovely - we were there about an hour and a half. They contacted an endocrinologist whilst I was there for guidance also. I found the whole thing strangely reassuring, which is good considering how dreadful I felt about it all before.

So now we wait for the test results. And for me to finally be able to catch DD's pee...

GoldFishFingerz Wed 24-Aug-16 20:48:42

Well done op. Stay positive

Jemimapuddleduk Thu 25-Aug-16 14:27:02

My dd had a hormone surge at 2. She was showing signs of breast buds and vaginal discharge. It was hugely stressful at the time and we got seen promptly by a specialist. In her case it turned out to be a temporary hormone surge (oestrogen) with scans showing a developed endometrial lining and enlargement of one of her ovaries. No intervention was needed and her symptoms have all stopped. Not sure if this helps but maybe provide reassurance that it is a temporary issue.

0AliasGrace0 Fri 26-Aug-16 18:52:54

Thanks goldfish!

And thanks for the share Jemima - it is really reassuring to hear (sorry you and yours had to go through it mind). I'm still feeling fine. No pee yet, but I'm planning on getting the cling film out which I suspect may be a stupid plan but intend to do it regardless .

I think it seems that lots of girls go through puberty early, but it's crucial to monitor bone age, especially for smaller girls. If it's advanced, they could stop growing too soon and not reach normal adult stature. There's so much they can do if they treat it early.

0AliasGrace0 Wed 28-Sep-16 20:33:07

Hi youcantgoback

She had her bone age xray last week so we're awaiting those results - others are back and are ok so far. We have a follow up in December, so I'll be asking for a copy of all results at that point. Until then I'm back to the dreaded waiting game sad

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