Little one has FH.

[sarahdee1]

Hi has anyone got little ones that have been diagonised with FH??

[sandybrown]

Heart UK was stet up to discuss high cholesterol and medication. Heart UK could not handle the statin issue therefore it came out of Healthunlocked.

Now we have cholesterol support.

This link gives you information from Heart UK on FH.:

You can ask your GP for referral for genetic testing to help you get a better understanding on FH.

heartuk.org.uk/fh-familial-...

[Penel]

There have been several discussions on the subject of FH on this site, some of which may be helpful to you.

healthunlocked.com/search/c...

[sandybrown]

Please read the information on this link:

zoeharcombe.com/2015/03/wor...

Similar questions has been asked and comments :

zoeharcombe.com/the-knowled...

[lynsreid]

sarahdee1 my daughter who is 8 was diagnosed this year

[sarahdee1 in reply to lynsreid]

Hi thank for replying I just want to speak to a parent in the same boat. I've read so much information it's hurting my brain. Will you be putting her on statins? May I ask how high it is. My little one is nearly 4 and it came back at 8. She is very active eats a very balanced diet. With lots of fruit.

I was terrified it meant she could have a heart attack now but I've been assured that's not the case. However if she wasn't treated then she could in her thirties. Bloody Fh I hate it!!

[lynsreid in reply to sarahdee1]

sarahdee1 my daughter was tested through the cascade testing service as my father and then I tested positive. Our mutation is with ApoB. My son tested negative. My daughter has a really good balanced diet and she is extremely active - competes with a trampolining club, swims weekly and is never off her bike. Her total cholesterol was 7.2 and ldl cholesterol was 5.01. She has been reviewed at the lipid clinic and was prescribed 10mg atorvastatin. The jury is out for me on statins. I find it really useful being part of the FH support Facebook group - there is so much debate over statins and so much conflicting advise. FH specific groups are also useful for advice. I assume the referral you are waiting on is for the lipid specialist?

[sarahdee1 in reply to lynsreid]

How old is your daughter now and how old when you found out?

[lynsreid in reply to sarahdee1]

She is 8 - we found out in Jan of this year when she was 7

[sarahdee1 in reply to lynsreid]

Hi ya so is she taking the statins? I'm just so worried my daughters is high but she's not even 4 and they've said she is to young for statins. Is she at risk of a heart attack now with a cholesterol of 8.

[sandybrown in reply to sarahdee1]

I am afraid no one here can answer your question, the people who can answer your question are who have access to medical records.

Please stop worrying and take care of your children.

Long time age one doctor said when he was in medical school the cholesterol number was 7.25. When you look at 8 it is not bad.

[sarahdee1 in reply to sandybrown]

Thankyou

[lynsreid in reply to sarahdee1]

My daughter is - 8 is the threshold for starting statins in U.K. but I was still anxious starting her on them. Just keep your daughter active and eating healthily and monitor her levels - most research suggests that plaque build up only occurs from age 10.

[sarahdee1]

Sorry new to this.

Is this reply for me?

[sarahdee1]

I have done she only got diagnosed Tuesday we are waiting for a referral. I just want to speak to other parents to see what they have experienced. I've read as much on fh as I possibly can.

[sandybrown in reply to sarahdee1]

Heave a look Heart UK, this has specific information on, FH and children from experience from other family. First discuss your child's high cholesterol with doctors and specialists as every child has different cholesterol numbers and reactions. Look at life style change first before any medication. Take care.

[sarahdee1 in reply to sandybrown]

Hi sandy thanks what do you mean by reactions??

[sandybrown in reply to sarahdee1]

For your referral, you need to write down all you questions you want ask, from this you may have a lot of unanswered questions.

You may be able to offer answers that can help others.

Cholesterol in double digit is not a problem, you can ask the specialist to explain this to you.

[sarahdee1]

Hi ok well she's fit and well.

She has been tested because I have fh and so does my mum. My grandad died at 43 from a heart attack that's how my mum found out she had it.

[sarahdee1]

He was very healthy and very active. If my little girl doesn't have fh why would her cholesterol be 8 at 3 and a half??

[sarahdee1]

I haven't got any of that stuff. What does it all mean??

[ITYFIALMCTT in reply to sarahdee1]

They're blood tests for thyroid hormones - you can read about those and other tests here: labtestsonline.org.uk/under...

High cholesterol is a frequent fellow traveller with hypothyroidism so it's helpful to check thyroid hormones as part of investigating high cholesterol levels.

[sarahdee1]

I have the print outs but all I've researched it the high chlosterol part

[sarahdee1]

Hi she isn't yet. Just got diagnosed Tuesday and we're waiting for the referral

[sarahdee1]

Doctor

[Penel]

Good luck to you and your family. Hope the referral goes well.

[Time_2_get_serious]

Hi, i have been meaning to post something similar. I was diagnosed with FH and my daughter who is 4 has been tested for cholesterol and her total is like 7 or something but the bad cholesterol is at 4 or something (sorry to be vague but i cannot remember exact numbers). My son aged 10 has also been tested but they are not too concerned with his numbers. I should really be giving exact results (sorry!) but like the OP i am also concerned for my children if they have to start on statins. I am trying to avoid statins for myself and have been using niacin amongst other supplements to see if my numbers improve. All 3 of us have appts soon to look at this issue and i am thinking if my numbers have improved, will i be able to give my children niacin...

To the original OP, i admit its scary but arent you glad its been picked up so you can try and help rather than finding out later when (god forbid) the damage is done? I have been giving my children child dosage omega tablets and will see what, if any impact they have had.

Here's hoping i share some positive updates soon...

[Penel in reply to Time_2_get_serious]

Take care with any supplementation for children . It's important to get the amount and type right, your lipid consultant should be able to advise you.

[Time_2_get_serious]

Both... although one is claimed to help the other. But if we can offset one damaging factor with a safer alternative, surely that will result in less damage or even better ... very minimal damage?

[Penel]

It can be a very difficult choice to make.

ncbi.nlm.nih.gov/pmc/articl...

[sandybrown]

Hello,

Zoe, gave the below response to my question on FH.

You may find good information from these two links:

Hi Sandy

You may find this interesting:

zoeharcombe.com/2016/11/fam...

And this: zoeharcombe.com/2015/03/wor...