Precocious puberty

[normajean]

Anybody have experience of prococious puberty? My 22 mnth old dd has just been diagnosed today. Have googled but cant find anything for such a young age. She has small breasts and pubic hair, also discharge and the odd bout of acne. Seems 10 years of hormonal injections are looming, could do with some reassurance if you have experience.

the tonight programme on monday was 'teens to soon' on exactly this. although they weren't as young as your dd. I've had a quick flick through the TV guide and can't see it repeated. It may be worth contacting ITV to ask if you could have a copy?

Hi I watched the programme as well and found it very interesting. Their website might be of help teenstoosoonit has some useful information and links to other websites.

Thanks Furball and Morgansauntie. I saw the programme, but ubfortunatley the ages are so different. Puberty stops growth you see, the bones fuse! Think I,m going to have to go the docs bombard him with questions, not slept thinking about all the questions I should have asked.

Normajean Hi I have a lot of health problems and know what it is like when you go to the Drs and then come out and think I should have asked this and this etc. It must be even worse when its one of your children. I think sometimes our brain switches off after we hear the diagnosis. Perhaps it would help to write the questions down in advance or take someone with you so they can prompt you. Would contacting any of the organisations on the Tonight website help. The families on the programme found it really helped when they met others in the same situation.

Good luck and best wishes. Not knowing must be very worrying and distressing so I hope you soon get the answers you need.

NJ are you seeing a consultant or just the Dr (GP)? I find that my DS' consultant will happily take phonecalls/phone me back if I have any Q's I have forgotten at appts.

I saw an interview on This Morning (was doing the ironing and needed a distraction ) and they had a specialist on. He said that more could've been done for the young girl who was being interviewed.

thanks Morgansauntie I will have to keep pen and paper with me so I can keep track of all my thoughts and questions.

DD is seeing the consultant at the childrens hospital norty, was thinking about gettin her email and droppin her a line, sorry norty didnt see the This morn thing was it about the programme on mon night? which one did he think could have got more help?

I would reccommend getting in touch with the consultant too, I think with a child newly diagnosed with something like this they would understand that you can't always remember everything at the appointments. I don't want to g into too much detail on here but my DD has a condition that can have some things in common with what your DD is going through although she does not have precocious puberty. I would be happy to talk more privately if you wanted to CAT me though, I know what it is like to have to worry about something that you don't neccessarily want to talk about at the local toddler group iyswim. Hope that all makes sense I know you are looking more for info but just wanted to offer support.

Hi Normajean,

How you doing ? I have a 7year old daughter who has just been referred to a specialist to query the very same thing, but not as young as your DD. What a shock ! Have you been brave enough to do any research.

I have a friend whose daughter has already had tests and they include a scan on the wrist/hand to determine the age of the body, blood tests and an ultrasound of the womb. They could also do tests for other possible underlying problems but thats a little way off and may not even be necessary.

I googled it and came up with quite a bit of info.

The stuff I printed off for my husband was via google and a website called www.kidshealth.com an american site but clear and informative.

I used to work in an Endocrinology dept of a Hospital in London and I strongly advise you to push, push, push to get an appointment and soon. Most secretaries dont mind being called and also try the actual dept or clinic manager.

Do not sit back and wait for the system to catch up with you, keep on at them and also your GP (if you have a good one)

Agree, write things down before any consultation and take DP or friend with you to write things down and ask questions.

Good luck and will keep watching.

xxxxxxxxxxxx

Have you been in contact with the Child Growth Foundation (www.childgrowthfoundation.org).

They deal with overgrowth and undergrowth in children and hold a yearly conference where you can meet other parents who have children with the same condition.

I know of the CGF as my youngest DD has an overgrowth condition (Sotos syndrome) and they are great.

I find the yearly conferences very enlightening as it means I can speak to professionals and other parents who are dealing with the same issues as I am.

Hey 39, had all the tests, bone scan, ultra sound,bloods and MR, thankfully no tumours. Been going through all these tests now for nearly 12 months (dd was 6 mnth when noticed something wasnt right, left it though, could kick myself!). Found loads on prec puberty just not in this age range You are right about being pushy, I have had to push for appointments and rang wards and secs pushing for results and refferals. Hope all works out well for your dd and your friends little un.

Hi usedtobethin, sorry to hear your dd has troubles to, honestly its just so scary, hope you are being brave. would like to talk, will sort out the CAT, not used it before. will be nice to have a chat.

Bumblelion, thanks thats a brilliant idea! I'll get straight on to that.

Normajean, I meant to say that one of their specialist areas is Premature Sexual Maturation (PSM), including Precocious Puberty.

Bumblelion you are a god send.

Meant to say that if you join the 'charity', you receive approximately 3 newsletters a year and if you just look at their web site, go to the home page, select conditions and then PSm, there is a brief overview and should be a brochure/booklet that you can download.

A family membership costs £15 a year (if I recall correctly) - and, no, I don't work for them, just found them (and their members) very helpful in the past.

Have made lots (a few) friends through the foundation who have children with the same condition as my DD and it is good to have someone to talk to who understands what you are going through as they have been there before (or you find that you give them strength as you have been there before).

Bumble, you read my mind, thought you were the CGF pimp for a minute then (wink)Dont mean to sound dramatic, but feels like someone just turned a light on, you have all been kind with your words and advice, not so dark now! x

NJ

This Morning

TBH it doesn't give the name of the specialist who was on the programme. He was politely critical of the treatment that the girl interviewed on the prog had recieved, eg she hadn't been given the drugs to delay the start of periods etc.

Perhaps you could contact the prog and ask them for his name?

The helpline link is to the org that Bumble has mentioned.

I am ok thanks, DD was diagnosed aged 10 days but I learned more about her condition slowly.She is Going on the websites recommended here is a good idea, the child growth foundation is one I have linked to through DD's support group. Be careful when googling though, I was advised against that by our consultant and support group very early on because some of the stuff on the internet is outdated or innaccurate and you don't want to worry yourself any more than you already are! Good luck with it all, I haven't got CAT facility either but if you like then do get in touch, I can understand what you are going through or at least some of it.

Oh somehow I missed out nearly 15months now!Insert after she is, then full stop sorry!

MAGIC foundation is another good group, they have info for if your child has yet to be diagnosed and can offer support I think. Sorry can't remember excact address but if you google it am sure its the first one that comes up. They deal with all conditions affecting growth.

usedtbthin thanks for the info had a look, some good stuff on there. Must have been hard having a blow like that at 10 days, Hope shes doing ok, my dd is such a little diva I,m not surprised she has the hormones of a teenager, she thinks she knows everything!

thank you to all of you ladies for taking the time to pass on you good thoughts and experiences. Its made a big difference, Normajean x