My 2 children aged 12 and 7 have FH and have cholesterol levels of 7.5 and 8.2. Are statins safe for use in children?

[Seahorse]

[Seahorse]

Yes they have just started to attend the Metabolic Clinic at the Royal Hospital for Sick Children in Edinburgh and it is the consultant there that recommends they start statin treatment but is leaving the decision up to me and their dad to make. A difficult choice. My two kids are their first FH patients.

[Aliwally]

I don't know the answer to this, but since this blog started, all our concerns seem to be for our children and not ourselves. This makes everything about these inherited lipid disorders more worrying. I hope you get some good professional advice.

[Seahorse in reply to Aliwally]

You're right. It's easier to make decisions for yourself but a lot harder to make them for your kids when they are too young to make an informed decision themselves. There's also the mother guilt thing going on about having passed a condition on to your kids.

[Iona_Roberts]

Hi seahorse, both my daughters 11 and 14 have also been diagnosed with FH with cholesterol levels of 11 and 13.9. They are both now on statins, cholesterol slowly coming down. Some medication are licenced for children over 10 yrs. I know it's not easy decision to make wasn't for us either but we got good advice from Alder Hey hospital where they specialise In FH. Hope this helps.

[sarahdee1 in reply to Iona_Roberts]

I know this is an old post but how did your daughters find the statins? my girl has just been diagnosed and is 3 and a half

[Iona_Roberts]

Hi Sally, both my daughters are not obese or overweight they eat a healthy diet and exercise regularly. They have FH passed down from their father who had a triple heart bypass nearly 7 yrs ago, he's fit and well but he is also diabetic. He's in the gym most days controlling his diabetes. The girls are on statins one is also taking ezetrol as her levels are not coming down. I've not heard of CoQ10 until I saw the post here, no-ones mentioned the need for this x

[Iona_Roberts]

Hi Sally, thanks for the info. I will definately look into the side effects of the statins even more now and into other ways of controlling cholesterol levels. The youngest is allways tired and does spend a large part of the weekend specially resting following a full week in school and other activities. GP has put her tiredness down to her age - she's just turned 13!!! Both are seen every six months by paediatrician and a FH specialist in Alder Hey and there's been no mention of CoQ10 by anyone! Many thanks, Iona xx

[Aliwally]

I am no expert either, certainly not with young people on statins . I made an adult choice to start taking Q10, so much harder when you have to make the decision for your children.

Perhaps one of the problems is new drugs have to go through the most stringent trials involving thousands of people before they are considered safe and effective. Q10, I believe is classed as a supplement and is not subject to the same sort of research. Maybe with the widespread use of statins and more people being diagnosed with inherited forms of high cholesterol there will be more of this sort of research and better treatment generally for children and younger people. Let's hope!

[Iona_Roberts]

It's so difficult making decisions for our kids, we know that the decision to put them on statins wasn't an easy decision knowing they will be on them for life. We decided following discussions with a specialist yes there were mention of side effects but ni mention for the need of Q10. We agreed with the specialist as that is what he is "the specialist" x

[suki65 in reply to Iona_Roberts]

hi have you asked for them to have their b12 ,vitamind ,and iron checked i would ask for these to be checked

[Aliwally]

I absolutely agree and it is so important to have a trusting relationship with a consultant, especially where children are concerned.

I've just read that statins are the most widely researched drugs ever, so that can only be good news for your girls...now and in the future.

[Iona_Roberts]

Hi Alliwally, my 15 yr old had now been taken off the statins she was prescribed due to the possible side effects. She has been having terrible nightmares over the last few months and has been in hospital due to abdominal pain. They initially thought it was appendicitis but was shocked when I informed them she'd had it removed 18 months earlier! We are waiting to see if she gets better over the next few weeks to be able to eliminate the statins. Hope all is well with you x

[Aliwally]

I'm so sorry to hear about your daughter. It is good that they are keeping a close eye on her and keeping an open mind about the statins. It was simvastatin that gave me the bad nightmares but I am now on atorvastatin and they are nowhere near as bad.

I hope she recovers soon, nightmares are horrible for an adult so for a 15 year old they must have been extra horrible and upsetting for you when you are all trying to do your best with this condition. Take care and speak to you soon.

[MumwithFH]

Hi, my oldest boy who is 12 has inherited FH from me. He was 8.4 mmol (2.2 HDL & 5.89 LDL). I has been on statins for over 20 years but decided to come off them last year to try alternatives (Plant sterols 750, styrine etc). I am VERY reluctant to put him on medication but fear about making this choice on his behalf. His consultant at the Sussex Childrens Hospital has recommended statins but said as he was only at the first stage of puberty he was happy to wait a little while to give me a chance to think about it.

Hints have been made with statin effects on sex hormones as well as all the other scary stories on the internet. He is fit healthy, gets loads of exercise and not of inch of fat on him. I have had no problems so far (41) but do I take the risk in not treating him or take the risk and treat him?

He takes a plant sterol drink everyday and has plenty of oats in his diet.

I think I will keep in researching, talk to as many experts as i can and hold off medication for a while. Ideally I would like him to decide when he is 18, his body should of fully matured and he can make an inform decision (like I did).

Also keeping an eye on his levels, how high is too high?

[Seahorse]

Hi MumwithFH. Your son sounds very like mine who is now 13. I feel exactly the same as you with regards to statins and also am giving him plant sterol drink every day and oat products.

[MumwithFH in reply to Seahorse]

Sorry Seahorse, only just noticed you replied. The more research I do the more confused I get. I have decided that I need to confirm what he/I have. I was told I have FH 20 years ago but not through genetic testing. They assumed I had because of the high LDL and my mum and other aunties and cousins also have high levels. What interest me is that I have low Triglycerides (which is good) and from research it suggests that this is a more important result to look at? I have asked to go back to my Lipid consultant (who I have not seen in 12 years, once I have got my levels down to around 6+ on statins 80mg). I would like to find out if possible 1, Do we have FH or even FHH (which seems to be worse?) 2, Can I get my Lipoproteins tested (another more important result going my American research). We have heart disease in the family but no deaths before 60's (which I know is still young but still gives me time to sort out advice). Also research suggests it is worse for males, I believe my Mums Grandad died in his 30's (they think heart attack?) but who knows what his life style was and if he had other complications. When I get any more info I will post it. P.S. I also have a 7 year old whose results were normal but I have been recommended to retest at Puberty as they can change around this time.

[suki65 in reply to MumwithFH]

please ask to have your b12 ,iron and vitamin d checked and read up on b12 as there is a big debate as to what levels your b12 should be at i raised my b12 from 263 which they said normal it is now 653 and i feel so much better take care everyone

[florence5 in reply to suki65]

Hi Suki, I haven't read any posts from you for a while and was wondering how you were. Glad to hear you are feeling so much better.

[suki65 in reply to florence5]

Hi Florence5 i have improved so much ,i have not been on statins for quite a while now and my arms are nearly right ,i now take b12 ,b6,opti omega 3 capsules and vitamin D with calcium every day .

i am having my bloods done next friday 20th december cant wait to see how everything is going but i am feeling more like myself for once .i think i probably will need my iron checking as the b12 can reduce your iron but other than that all i can say is if you get side effects from statins stop immediatly dont wait for your body to get attacked in any way

hope you are well florence5 and your family thank you for asking

[rocheen in reply to suki65]

Have the supplements worked to keep it down