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mickeykostelnik Message
16 Nov 2009, 11:42 PM

My grandson has rieger's. He is only one year old, and had numerous operations on his one eye to relieve preasure. His baby teeth are starting to come in and look fine to me. My daughter is worried other symptoms may develop. Anyone out there have experience or opinions. He seems to be developing on target. He can stand on his own and loves music. He weighs about 20 pounds(mom is tiny). Has not spoken any words yet but I suspect in a few weeks. thanks
irenevannijnanten Message
19 Feb 2010, 12:16 PM

My son had axenfeld rieger as well as my husband. We didn't know my husband had axenfeld rieger untill our son was born. My husband only has a very mild eye malformation, his pupil is not exactly in te middle of his eye. My son is 17 months old. Het has small tear-shaped pupils witch are not in the middle of his eyes. The preasure in his eyes and his sight are okay at this moment. He also has a heartproblem, a open 'ductus of botalli'. He has to be operated on this problem when he is older. Our doctor told us that it's not likely he develops other problems. He is, just like your grandson, developing on target. But we stay under control with the pediatrician until he is a grown up. The eye specialist will check his eyesight and eyepreasure every 6 months. Hopefully your grandson is doing okay! I hope you understand everything I rode, English is not my first language, so it's difficult to ride in English. Irene
Ffamily2400 Message
22 Feb 2010, 04:15 PM

Hi Irene, I read your post & I would like to share comments with you. Please read my profile as I also have a 3 year year old little girl who has been clinically diagnosed with this syndrome. I carry some genetic traits as well as her. It is very difficult to find people out there with this condition so you can imagine my interest in sharing comments with you. My email is Hope to hear from you soon!
marina2010 Message
26 Jul 2011, 02:32 PM

I see that it is a year ago that someone posted something here. I am 50 and I only know recently that I have Axenfeld-Riegers. No-one has told me this before. As a child I never had decent theeth, my upper yaw was to small.At the age of 25 mij eyedoctor did an eyetest, because my father had glaucoma. It was a shock to know that I had it to. 25 jears and several operations later I still don't know what the perspectives are. Here I cannot find people who have the same disorder. When I asked my doctor he mentioned that there was a chance of 1 in a million. Can you provide me whit information? Thanks
ALC1986 Message
11 Mar 2013, 11:00 AM

Hi everyone I have read your posts and found them extremely useful, my niece has been diagnosed with this disorder and I can see that these posts were posted about a year ago, I was just wondering if any of you could provide more information about you experiences and how your children are developing, I'm still so unaware about this disorder I've done some research but its hard to know if this will hugely affect my nieces development in the future?! Any information you can provide would be greatly appreciated!
Ffamily2400 Message
12 Mar 2013, 05:21 AM

Hi I haven't posted in a while. Yes, it's very difficult to find information regarding this syndrome and sometimes it's very overwhelming. Last time I posted my daughter was 3 years old. She's currently 6 and attending school. She's healthy but her front teeth aren't there. She's a healthy, spontaneous, full of life, amazing angel. I fear that she might get picked on at school for her conditions. My email address is
shellie Message
13 Mar 2013, 06:15 PM

wow so alot of you are asking questions and that is very good...I have Reigers type 1 as so does my 18 year old daughter..we both have glaucoma and take oldest didnt not get her four top from teeth so she wears a partial and noone can tell..shes very bright and is going to be attending college next year..we are just now learning that heart defects also can come about with riegers so we are going to be getting a full is very important as i have learned of a man in his 30's did not know he had reigers since it was mild untell it was to late and he died of heart defects that came on all of a almost 40 and at the end of my driving years...blah...i have another daughter age 9 how is not affected by reigers so it is so a 50 50 chance...keep you appt. and take your out for anything differnet in health and speakup at the doctors ..alot of doctors dont know what this online and print it info out if you need of now i am also being worked up for possible Mytonia dystrophy like symptoms..good luck to everyone and send me a message if you have any questions..
Ffamily2400 Message
29 Mar 2013, 06:52 AM

Hi Shellie! We have chatted a few years back regarding this. How have you been doing? I am yet to find a doctor where I live that is familiar with this syndrome. Al though its common in about 1 in every 200K people.
shellie Message
29 Mar 2013, 04:46 PM

hi Ffamily,,ive been oldest daughter graduates this year...she just got braces too and ortho is working with us on her teeth issues..she is a beautiful girl....she did just get diagnosed with glaucoma this year..i was really hopeing it wouldnt get her...she's not very good at remembering her drops and i have to stay on top of it...i hope you and yours are doing should print out the reigers manual lol and bring it with you to you doctors and have them put it in your doctors never heard of it either lol so i am teaching her about it lol...
Eviejo2004 Message
11 Sep 2013, 09:11 PM

Hi guys!!! Finally I've found a site for Reigers. My 8 year old daughter was diagnosed with the syndrome at 6 weeks old. She doing ok. No front teeth and the some of her adult teeth are a bit "peggy". She wears glasses and has regular pressure checks. We have just been referred for heart scans, ECGs etc to see of there's any underlying heart probs, but fingers crossed, none as yet. She's struggling a little at school with her reading n writing but her memory n knowledge are second to none!!! I'd love to hear more from you all as in the UK there's nothing for us parents of children with Reigers. Hope to hear from you soon xxxx
Ffamily2400 Message
11 Sep 2013, 09:31 PM

Hi Eviejo2004! It's extremely difficult to find individuals. I am from the US in the state of Florida. Would love to hear from your experiences here's my email My 6 year old daughter doesn't have her front teeth either. She's been losing her lower baby teeth. Doctors have told us that her top front teeth just aren't present. She's doing well at school she's currently in the 1st grade and still gets checked out by her cardiologist and ophthalmologist.
Karenlgibbs Message
27 Feb 2015, 07:36 PM

My 16 year old son was diagnosed when he was 13 with the Rieger anomaly. He gets his pressure checked every 6 months and has a visual field test annually. He sees his ophthalmologist annually. So far he doesn't have Glaucoma. And, thankfully, no other signs or symptoms somfar. Glad to have founf this group today as nobody seems to know anything about Axenfeld-Rieger.