Found this great research material "Versmissen, Jorie thesis on FH.pdf" Full of fascinating info. Would love your feedback.

[MumwithFH]

I have found this thesis on the facebook FH page: Familial Hypercholesterolaemia (FH) Discussion Group

It is a massive document but I would recommend people reading this. I have got an appointment with my sons consultant tomorrow and it has given me loads of info to take -he is going to LOVE me

Main points I have got from this thesis.

1. Statins work but modest doses work just as well as high ones

2. As I have passed FH to my son maternally this is worse than if it came from his father - as if I did not feel bad enough!

3 (this is most exciting for me - on page 116 chapter 7 "Our present study suggest that starting aggresive treatment during early childhood as currently done... is probably not necessary to reduce coronary heart disease risk. Although atherosclerosis is present in children, this process is to a certain extent reversible."

4. Really need to find out which gene mutation we have.

As i am not medically trained I would be grateful for any feed back. I may of misunderstood oo please anybody's contributions would be great.

Ps Such a large doc, if i can not load it or you can not open it have a look at the facebook page facebook.com/groups/4709883... dated 25th september

Thanks

[MumwithFH]

Could not upload, try this link:

repub.eur.nl/res/pub/37245/

[Aliwally]

Hi,

I often tap into the FH Group, although I'm not a member, and I saw this although haven't read it.

There are some interesting blogs on there and I would say they are more "pro" aggressive statin treatment and medication for children based on their experiences. I'm not saying I agree or disagree, because I don't know, so this paper will make interesting reading. Thanks for pointing it out.

Good luck with your consultant, some find the role reversal a bit challenging (my opinion, based on my experience).

[MumwithFH]

Hi Aliwally,

Yes the group run by some American nurses (I think). They are very pro Statins but the Thesis is from Roterdam and proves not to be pro statins for children. The person who put it on the facebook page said :

"controversial area, because we lack any long-term studies that show starting in childhood prevents more heart attacks than starting in early adulthood... and such studies may never be done. Here in the U.S., the American Academy of Pediatrics guidelines that suggest starting drug treatment at age 8 are controversial. Many physicians feel they are too aggressive... I tend to agree."

Consultants appointment disappointing as she had not heard about this research or other data and info I had found. Very nice doctor but obviously not a specialist in FH. I asked about info (I think I found on this site) about Chol levels going down during puberty and she knew nothing about this. It is very hard to make decisions when I feel I do not have all the facts. At least she was not in a rush to put my son on statins and said lets see how things go over the next few years. Last years consultant was very keen to put him on them. Mind you they had lost his recent blood test results so she was basing her decision on guess work!

[Aliwally]

Yes, I've been reading some of the comments. I haven't read all the thesis but I did pick up on that they think the American Paediatric Guidlines may be too robust. I suppose, at this point nobody really knows, which must be awful for people like you who have to make the decision about when to start a child on statins. They also don't have any really long term studies on children.