I don't know if I believe the wait until he's 18.

There is a juvenille form..I'm 18 and probably started over loading a few years ago.

Don't listen to them 2 out of my 3 kids have it and my one daughter Brianna at the age of 11 had 500+ and liver damage she is geting flb once a week 250 cc for months now

I agree with Nassaub... DO NOT WAIT! Genetic testing is still hit or miss, since we've seen people with only one gene still load just like those with 2. Out of my 3 kids, 2 have had 90% saturation, one's ferritin is floating in the 200's. With that one we are following up every 6 months to see if/how fast it will rise. The other is yearly. My daughter is only 6, I will start her at her next visit with ferritin checks. It's such a simple lab to do, why would anyone wait till they are 18 to see IF their ferritin is rising.

Keep in mind that in a child, high ferritin doesn't slowly damage organs, but rather it quickly kills the heart. Kids don't have the chances that adults have. My pediatrition told me she didn't want to test till they were 18, if I've been a pain in the butt to my kids and doctor for those 6-8 years for no reason, then I'll simply thank god and ask for no forgiveness cause I've done nothing wrong!

Good luck to you
Theresa

my kids had their Iron panels done last week, the did the fasting for the total binding Iron we will see if they have a problem.. the dr said if their is a problem with them he will order genetic testing.. my son has been having leg and stomach problems for a few months hopefully he is fine. I would of had them tested much earlier but I just found out about me not too long ago.. only because my family dr is very thorough

Strype, that's what my family doctor said too. My son, went to a GI for stomach problems and when he told the doctor about me having HH the GI did full iron panel and genetic testing. He's a carrier and has a slightly elevated Ferritin. He's 24.

Everything I have ever read about HH says it is the third most common genetic disorder.

Thanks ladies and gents. He's only 2 now. I think that age 6-10 sounds good. I'll hold off a few years.

BTW, the Juvenile form is strictly in very young kids and is not related to our disorder other than by name. From what I understand it's a different gene altogether.

Sandy, by slightly high ferritin, what is the number?

Strype, you are right in that juvinile hemo is totally seperate from our HH. No connection at all. And I'm with you in the 6-10 yr age. my daughter will get her first lab done this summer at age 7. If fine, I'll do again in 2 yrs, then around 11 or 12, maybe go every year. You have to dig deep, but you will find stuff on the web about kids with regular HH. Devistating stuff!

TC, his Ferritin is 150. He's recovering from gallbladder surgery and has a follow up with his GI next month to check Ferritin.

Had he had gallbladder problems before? Funny, my 15 year old has kidney stones, but was told had nothing to do with HH. Have they said when they will start treating the HH? My sons specialist at boston childrens hospital said they would start when he was over 200.. Is interesting to know what doctors are doing with people at the beginning of the diagnosis.
Theresa

Doctors assured me his gallbladder problems had nothing to do with HH. He has only one copy of the C282Y gene. Glad his doctor wants to see him and monitor him. He's been to hell and back with stomach problems.