Axenfeld Reigers Syndrome

My 6 week old daughter has just been diagnosed with Axenfeld Reigers Syndrome and I want to know where to go to get the most complete information on this disease.  

What should I expect from this disorder?  I'm in shock and scared for her especially were the mental delay is concerned.

Thanks--FranklinL

[Forum-OD-MP]

It seems like I'm answering "I dont know" a lot lately.  sorry, but I dont know where you can find the best and most up-to-date information about Axenfeld-Reigers Syndrome.

the big risk Axenfeld Reigers Syndrome and the eye is glaucoma.  is she seeing a pediatric ophthalmologist or pediatric glaucoma specialist?  she needs to.

[FranklinL]

Yes, we went to see one yesterday.  They want to see her every six weeks as well as my other children.  I would just like some more answers to what to expect for her future.  I'm most concerned about the mental development and of course the glaucoma.  I'm just in the shock and sad mode.  I went from "thinking" I had a perfect healthy baby to this.  I'm just very, very sad for her.

Lisa

[NURSELPN]

This url has a few sites on that condition. One of them is a forum from the Wills Eye Institute. It looks like eye drs. are answering questions. Maybe you could check it out. http://www.answers.com/Axenfeld+Reigers+Syndrome
                                   God Bless, Jean

[mep1101]

My daughter is 17 and we just found out about a year and half ago that she has glaucoma.  After trying several medications and treatments we were sent to a specialist and about a week ago found out that she has axenfeld-riegers syndrome.  A week later she is schedule for surgery in both eyes.  I didnot know about this but she has had symptoms all her life i was just told by doctors that the ambilical hernia was normal.  That the teeth deformation was hereditary and was just a fluke.  That the bad eye sight was something that just happened.  I wished I knew then what i knew now . Maybe my daughter would not be having 95% nerve damage in one eye and 85% in the other.  The wonderful doctor that has finally diagnosed my daughter is Audrey Tuberville. in Memphis, TN.  She knew exactly what was wrong.

[mbrown61]

A related discussion, Dr. Tuberville was started.