Worried about daughters FH

[Nutz83]

I’m new to this group, I have FH and recently found out my 3 and 5 year old daughters have it as well, my 5 year old has been on simvastatin for last couple of month and we have changed diet but her recent blood test her cholesterol level had increased yet her sister who isn’t on medication decreased, I’m so worried and confused

[Hidden]

Sorry to here this hope things improve but what is FH

[Nutz83 in reply to Hidden]

FH is an inherited condition that is passed down through families and is caused by one or more faulty genes. If you have very high cholesterol levels or if you’ve had high cholesterol from birth, you may have FH. Having FH means you’re at a greater risk of getting heart and circulatory disease at an early age if the condition is left untreated. Around 1 in 250 of the UK population has the condition.

[Nutz83 in reply to Nutz83]

Familial hypercholesterolaemia

[Calliope153]

Ask the BHF nurses if they have any advice or can recommend a forum . Young children are a very specialist area and I suspect you would do much better talking to their doctors at the childrens' hospital they attend (outpatient clinics I mean) - most people on here are adults and have had heart events . They give excellent information but usually it will not be child centred. Sometimes the worry and fear overcome you but you;ve managed the condition and so will they. Now they have been diagnosed they are on the radar so ask for more support if you feel it would help. Also try to meet up with other parents who have children with HF if you can. There's nothing like talking to someone who has been down the same path. Best wishes to you and your daughters.

[Nutz83 in reply to Calliope153]

Thank you I’m due to see the consultant in a couple of weeks I will ask them just shocked that it has increased

[MichaelJH Heart Star]

Hello and welcome to the forum! We all respond differently to both diet and drugs so what works for one might not work for another. It may be a change of dose/statin/drug is needed. Is there any possibility of cheats at school?

[Nutz83 in reply to MichaelJH]

Yes they have said they will increase her dosage but I’m concerned over the side effects, I have been on this medication since I was 5 and now on astrovasatin but I know everyone reacts differently , no the school is very health oriented so will just have to get even stricter her at home just seems so unfair when she is doing everything right

[Gowers]

Same problem for me my niece had cholestrol reading of 9.5 when she was only 9. & has been on statins (Simvastin) ever since (now 40 with 3 young children)

my son also been on statins (Simvastin) since he was 18 - & has had to have the dose increased from time to time, until he's now on highest dose possible.

Do you know what your childrens cholestrol levels are/do they or will they have regular blood tests?

Try not to worry it's good that you are aware - I didn't know children could have high cholestrol until blood tests were done.

My gp long while ago said ....FH is not always easy to control with just diet though it is important, but, with monitoring & medication they will avoid heart problems later in life.

Your GP will I am sure be keeping an eye on your children & perhaps put you in touch with dietician at local hospital (they did for me)

[Nutz83 in reply to Gowers]

I had it as a child and my levels were 9+ and have been on satins since I was 5, currently on astrovsatin as has the best reading in my last test

My girls had genetic testing as my brother who also has FH had a heart attack at 35 and had to have 4 stents put in

Both girls first test results are 8.2 my eldest at 5 went onto satin but first blood test after starting medication went up to 9.1, I was shocked by this result as on medication and she is more active and has a better diet than her sister

Her sister is 3 and her result showed that her levels has reduced to 6.5 I can’t understand how

We are all under a consultant at the hospital and hope over time we can get it under control just so worrying

[Cazz1954]

Sorry to hear that both of your young daughters have FH. But it’s good that it has been diagnosed early when is their next appointment at the lipid clinic if it’s soon the consultant might change her statins or increase them. If not see your GP. I have FH diagnosed 7 years ago 2 of my daughters have been checked and are ok. The younger one doesn’t want to know,