DD2 has GDD and now possibly precocious puberty - anyone know anything about this?

[mumgoingcrazy]

Had a pretty awful paed appt yesterday and got a few surprises. DD2 has GDD and the paed yesterday noticed some darker hair on her private bits and asked how long she had had this. I said her whole life, and she was surprised it hadn't been picked up sooner. She is having blood tests and an MRI to see if she has a hormone problem but I havn't heard anything about this and on the net it seems rare under the age of 8 (she's only 15 months).

Does anyone know of this condition? What it is? what this means for DD2's future? Is this related to GDD or just bad luck?

Any info greatly appreciated.

Hi.
I am not an expert but didn't want your message to go unanswered.
Personally, I don't think this is related to GDD (my 3.8 DS also has gdd). It does sound like a hormone problem.
I think the best you can do is wait for the results and then talk to an endocrinologist about what it means for DD.

Am not a specialist on this but I attended an annual conference at the weekend where one of the conditions discussed is PSM/Precocious Puberty although my daughter has a different condition.

The notes on the diagnosis are:

Diagnosis:Under 8 years in girls and under 9 years in boys
Treatment:Drugs to suppress the onset of puberty
Premature Sexual Maturation (PSM) is a rare condition in which the gonads, adrenal or other glands are affected leading to premature sexual maturation. In such cases the child grows at a faster rate than normal and develops secondary sexual characteristics (such as pubic hair, penile enlargement or breast development) at an inappropriately early age. It is important to distinguish this from precocious puberty, whereby normal puberty occurs but at an age earlier than 8 years in a girl and 9 years in a boy. There is a 20% possibility that it will occur before school entry.

Children with PSM, including precocious puberty, may be very large for their age but as growth stops early, the final adult height can be relatively short. Premature sexual maturation always requires investigation and assessment by a growth specialist. Treatment will depend on the underlying cause.

Don't want to worry but thought this might help.

Try Contact A Family www.cafamily.org.uk - good list of medical conditions and excellent search engine - we diagnosed ourselves this way. The organisation has a helpline too. Thinking of you.
Alison

My niece does (precocious puberty, I'm not sure what GDD is), she's 7 next month and started her periods about two weeks ago, they said it was imminent a few weeks ago. They've only recently discovered it so I don't know what they're going to do with her yet. She was taken to the doctors because of pubic hair, she also has BO and breasts. The MRI will also be making sure she hasn't got brittle bones which this condition can cause.

Thanks for the responses everyone. I think I'll have to stop stressing about this hurdle and wait for the results. They're testing for a whole load of stuff and we have to wait 2 months for the results which I think is an agonising wait. I just hope this premature puberty is a red herring and not something else to add to our list.

I'll definately look up this contact a family as well, that sounds like a great idea so thank you for that.

Just wanted to reply with some support, have no experience of precocious puberty, but my DD is waiting for an MRI (within next 3 weeks but no date yet) for a different reason. I know how hard the waiting game is and how difficult it is to try and forget untill results are in.

Try to focus on your lovely little girl and the things that she achievs on a daily basis. Enjoy her smiles and cuddles and remember that whatever the diagnosis she is your little girl and with your love and support she can overcome whatever hurdles she has to face in the future.

Try not to let what is going on stop you enjoying her xxxxxxxx

Thank you cazzy for your kind words, almost reduced me to tears!! Mn is such a great place for support.

It is! I have a habbit of disolving into tears at the moment, I cried my eyes out watching Katy and Peter the next chapter last week, when Katy was on talking about Harvey and his condition, I blame having a baby it makes you very emotional

Yes, we had to wait for results etc - took months ++ and variety of appts/specialists, leaving us time to think and speculate and worry. I stupidly did not go to Mums and Toddler groups at this time - I wish I had gone as later I did find the support and friendship there. Finding fun things to do together also helped - new toys etc - and trips out in the buggy.

Does anyone in your family know of anything a relative may have/had to give you a clue if there is a genetic condition? I started looking at old photos etc and listening to older relatives in case anyone had anything relevant to help in our search.

Contact A Family's search engine was a real help and then the organisations linked to our condition which you can find on the Contact A Family website (if you get blocked after 5 searches, you can always phone the helpline) - I spent ages on the computer putting the parts of our jigsaw together, sometimes coming across red herrings along the way but in the end had an eureka moment, and sought help from a specialist in our condition (Ehlers-Danlos - hypermobility)to seek a diagnosis.

Please keep us posted how things are going - if I remember any other useful websites I will post.

Will you get the results in person or by letter? Have you received the paed's clinic letter yet? Ours can take months to come in hte post. The letters are useful to summarise what the paed has found and plans to do altho it can be hard to read it all in black and white. Does your daughter need any physio and other therapy etc in the meantime as you mention "on top of everything else"?

Alison

Sorry I misquoted you but it implies the same thing I suppose.
Alison

A freind of the familys daughter also started her periods when she was just turned 7. Her mum didnt know anything about it, and the poor girl thought she was dying because no-one had explained the whole thing to her - TBH why would they? Its not something that anyone would expect to have to do.

She is now 15, and a little short for her age, but not tiny - however it is unlikely that she will grow any taller. She is a lovely girl and doesnt have any other problems other than an over abundance of intelligence!

It doesnt bother her any more as more and more of her friends have finally started menstruating too. But when she first started she felt very isolated and self conscious. But if (looking back) her mum had explained it all to her and put an 'special' light on it all ie. that she was so special and wonderful that she got to try it first (perhaps???) maybe she would have felt much better. But im not sure they have such a good relationship - my point is, that you are very much 'on the ball' so your daughter (should it come to it) will be much better prepared, and be able to handle it better.

Good luck with the results XXX

My daughter age 10 has GDD but not PP but I am unsure if the 2 are linked. I think if she had been diagnosed with it we would have had the hormone treatment to suppress it, we know a child with MLD who has it and it has been difficult. It's not just ealy periods but she looks older and is quite developed too.

Good luck with the results.

I don't know if this helps much but I started my periods at nine. My first bra was an underwire b cup. I was being hit on by old men at age 11. I was fairly mature for my age but my mother explained the lot to me then and there when it happened (in the shopping centre). I was also sent of to an all girls boarding school at age 13 so I wasn't involved with boys until I left school (and it all went downhill from there). If you can teach her how to deal with the unwanted attention from men who only see boobs and encourage her to still act like a little girl then you are doing your best. It sucks having them early. You are the odd one out at school and you forget about pad changing etc so accidents are inevitable. I secretly used tampons for years before my mum found out. She didnt want a 9 year old using them. I realise that 9 is a lot older then most PP starts but I thought is might help.

Hello again

I have just been on Contact a Family website as I needed to check I had suggested a suitable lead.

Found a page on PSM (after having search pubic hair I think) - Prem Sexual Maturity. They refer you to www.restrictedgrowth.co.uk. for more info. I then searched PSM and found a group in London - Child Growth Foundation - www.childgrowthfoundation.org - and there PSM/Precocious Puberty is described - downloadable 19 page booklet. Not sure if this really describes your daughter but may I suggest you ring the Child Growth Foundation for advice? They seem very helpful at the website.

Sorry if I have gone OTT here - just felt rather responsible in suggesting Contact A Family.

Hope you are OK with all these messages?
Alison

It was the Child Growth Foundation convention that I attended at the weekend. It is a great charity/group.

Also found McCune Albright syndrome when searching pubic hair at CA Family website.

Again could be a red herring but you will find you have to search through a lot to find an answer.

Having got the T shirt in doing the searching, I do hope you can find an answer, perhaps finding a specialist (eg the CGF could advise perhaps) as I find it reassuring to see someone who sees so many people with our syndrome.

Thinking of you
Alison

Thank you so much for going to all that trouble for me. I'm going to have a look tonight at the CGF.

I wrote a very long message earlier and have been trying to post it all afternoon but it keeps timing out, is there a limit as to how much you can write?

In answer to your questions earlier, no there doesn't seem to be anyone in the family who has any disorders, however DH is not in touch with his family at all, not even his mother so who knows what goes on on that side.

The "on top of everything else" meant that DD2 receives weekly physio, OT, SALT, Portage on top of all the usual Paed, Audio and opthamology appointments.

I think if she does have PP I'll have to prep her early that this will happen and how to deal with it. I myself was relatively early (11 for periods and bra) and that has happened with all the women in our family so we're quite early starters anyway, but 15 months is going a bit far!

Up until now she has just had a diagnosis of GDD and I'd been led to believe it was purely down to being tactile defensive. Since the appt on Monday it all seems a lot more gloomy than that. The paed said it's unlikely and that there is probably another cause. Now I'm thinking all sorts of horrible things. We go to a therapy group each week and see various types of chromosome disorders and disabilities and I come home, go on the net and see if she fits the bill for any of those. I'm driving myself round the bend and can't seem to snap out of it.

Sorry for the rambling, today I diagnosed her with angelmans syndrome. I've got to get off this laptop I think!!

Hello
Yes using the laptop means you can read lots of worrying info most of which prove to be red herrings - like looking at a medical dictionary. It is hard to sift through the information and try to put the pieces of the jigsaw together. As you say, the blood tests etc will really help but I can see why you need to check some things out on your laptop. Finding out more about the therapy group's children should really please the other parents as you will be showing an understanding of their syndromes - you may come across children with very rare syndromes I hasten to add. What a suprise to go from GDD/tactile defensive to tests - maybe your physio, SALT, OT could let you know more about their opinions on your daughter? It is great you are getting weekly therapy although I do remember this as being quite exhausting. I hope the CGF proved to be of interest - I hope I have not added to your concerns though. It is really tricky to search for information, trying to work out what may be relevant and what not - I am sure though that you will start to build your jigsaw soastospeak.

I do not know much about posting here - my syndrome website message board will not allow my posts if I have spent too long writing one - maybe this is relevent to here?

Hope your therapy team is supportive - the paed you met sounds good to me but what a change you have had this week from GDD.
Thinking of you
Alison