Child at risk of PCOS

[Janineeden]

Hi, I'm new, I also may have posted this twice so apologies if so.

I'm asking for advice on how to approach the GP with regard to my daughter.

I am taking my daughter to the doctor as I am concerned she may be vulnerable for PCOS. I am not expecting the doctor to take me seriously for two reasons. Firstly, my daughter is 2.5 years old which I appreciate is unusually young to be investigating this. Secondly, when I was diagnosed with polycystic ovaries I told him this was something I had suspected due to build, body hair etc. Unfortunately he ridiculed me saying the symptoms of described were related to male sex hormones and nothing to do with polycystic ovaries.

My daughter appears to have acne though not severe. On its own I probably wouldn't worry. My daughter also saw rapid weight gain following birth. She was born 25th percentile and lost 10% body weight in the first two weeks. She then jumped to 75th percentile by 22 weeks just on breast milk. She is currently 91st despite a healthy diet. Again, on its own, I would not worry too much. However these two things need to be considered alongside her being born with a 5cm ovarian cyst. It involuted during the course of her first year though it also destroyed her ovary.

I suspect I may be told to wait until she hits puberty. However if she has PCOS and she reaches puberty early, this will have a disproportionate effect on her as she only has one ovary.

Any help you can provide me to ensure we get the right level of investigation would be greatfully received.

My aim from the meeting with the GP is for us to be referred to a paediatric endocrinologist. I'm hoping that they will be able to test her insulin resistance and her hormone levels then, if appropriate, we can make plans on any future activity to minimise the impact of the condition if it is there.

If I don't get anywhere with the GP, I may be back to ask for advice on going private.

Kind regards

[Hols969]

PCOS is hereditary so the chances of her having it is quite high. My son who is 11 was born with pubes which the midwife was quite amused about as never seen it before, he is now 11 and already has hairy armpits etc so has hit 'puberty' much earlier than all his friends. PCOS goes down both the male and female line (as not ovary related really so the name is misleading! He has always been a bit chubby around the middle as well but has a really healthy diet, no sweets or anything and now does lots of exercise at his new school which I am sure will help reduce it.

It sounds like your daughter had a proper cysts rather than a pcos cyst which are not cysts at all but follicles - was the consultant concerned about it ?

PCOS is not really ovary related, they believed it was originally due to the cysts (follicles) on the ovaries but further research has shown that this is only a symptom and not the cause, considering men can have the condition as well, my husband is a carrier and now my son.

The chances are that your daughter will have the condition, what is concerning you about her having it at such a young age as it does tend to get worse at puberty.

We are all born with pcos they believe so all of us would have had it as a child (my mum said I was quite hairy as a baby compared to my brothers (I am adopted) so their were early signs of it looking back). I was diagnosed almost 30 years ago, so much more is known about it now than back then. Children do go through phases of being chubby and then having growing spurts (not specific to pcos) as well, babies included.

I went on the combined pill age 15 which, for me, has pretty much controlled all my symptoms pretty well, not everyone has symptoms either, some only have cysts on their ovaries which is how they get diagnosed.

[Janineeden in reply to Hols969]

Thank you. That's really helpful. The two things I am worried about at such an early age are:

A) early puberty and whether action should be taken to delay it. The reason for this is that she has lost 50% of her eggs. Early puberty could drastically reduce her fertility during child bearing years.

B) diabetes. Whilst I already ensure she has a healthy diet, if she is insulin resistant, I would probably like to see a dietitian to make sure what I think is healthy is actually so .

I agree that the cyst is different to my follicle cysts but I think (possibly incorrectly) that the cyst showed an abnormal level of hormones in utero. Her paediatric consultant at the time thought further action would be needed when she reached puberty if she is obese (noting that she looked like she was going to be a 'cardie rather than a jumper kind of girl') however it is the recent acne that has made me worried puberty could come early rather than later (one ovary would normally mean later puberty).

Thank you

[Hols969 in reply to Janineeden]

I would ask for a blood test for IR - not all pcos ladies are (I am not). Why do you think she would have early puberty - it has varied massively between pcos ladies, I know some who were 9 when their periods started but I was 15, part of the issue with pcos is there is no consistency as we all vary so hugely, so your daughter may well not have any pcos symptoms or issues conceiving as lots of ladies don't, she may decide also that she doesnt want a family when she is older as well.

You must do what puts your mind at rest though, otherwise you will worry constantly.

[Janineeden in reply to Hols969]

Thank you. I don't think it is definitive she will have early puberty, however it is a possibility. Therefore I would like a plan in place for that eventuality ahead of it happening to maintain as many options for her as possible.

If she doesn't want a family then no harm done. If she does, then we can keep her options open and hopefully make her journey somewhat easier than the one we had to have her.

[Janineeden]

Update. Though the doctor was sceptical, he has agreed to refer our concerns to a paediatric endocrinologist for review, which is what we were hoping for.

[Janineeden]

Just wanted to provide an update. The GP was sceptical (and also reiterated his view that testosterone has nothing to do with PCOS) however we reiterated that we felt this was an area for a specialist. He asked me to email through our concerns for forwarding on. Our email has been reviewed by a paediatric consultant that specialises in endocrinology who has agreed to the referral. We see them in March.