All Blog Posts (96)

My daughter was diagnosed with Congenital Glaucoma when she was only 1 day old. She had her first surgery at 2 days old. She has had 6 cornea transplants with only one successful implant, 3 Ahmed Shunt tubes to help with drainage of fluid and several Trabeculotomys and many, many times under anesthesia which total 40 times. She can't see out of her left eye and has 20/100 vision on her right eye. She has been through so much but if you see her you never know that she has anything wrong with…

I have an eight year old son with congenital glaucoma. He is blind in his right eye because when he was a baby his doctor said he just had a lazy eye and wouldn't schedule him to see an Opthamologist. When he went for his one year check up I was persistent that he have his eye checked. The doctor was reluctant but scheduled us to see an Opthamologist three months later. They checked the pressure in his eye and it was 76! They immediately sent us to the hospital for his first surgery.…

This last week our 5 month old son Miles was diagnosed and had his first surgery for Congenital Glaucoma. His pressures were 36 and he had heavy damage in his left eye. We go to the Dr. this week and are praying he has lowered his pressures. So glad we found this website. It is such a comfort reading about how others handle this with their little ones.

Thank you to Tami Frank from the Childhood Glaucoma Research Network for passing this article along.

PGCFA ENews Article of Interest

Eye on the Medical Literature

DiMaggio C, Sun LS, Li, G. Early childhood exposure to anesthesia and risk of developmental and

behavioral disorders in a sibling birth cohort. Anesthesia and Analgesia 2011; volume 113, pages

1143-1151.

Reviewed by:

Daniel Y. Lee, BS

Jefferson Medical…

Ian went back for a checkup yesterday. His pressures were 14/15!! We were thrilled. Ian had been using Xalatan in only one eye and Cosopt in both eyes. She upped the Xalatan to both eyes. His field vision test was a little inconclusive, because he fell asleep during the test. LOL   I can't figure out how you can fall asleep during that test.   It always makes me so nervous.  I did find out that…

It has been quite a while since I have had time to post for Kaelen. 

We are all travelling okay since his operation in August.  It has certainly been such a big year!! Once again, thank you to everyone who has been praying with us along the way.  We are currently waiting for an appointment date for another follow up.  We now have new glasses.

In the meantime we have ALOT of organising to do as Kaelen is starting PREP in 2012.  We have had extensive meetings with his school to…

By Rob Roberts, rroberts@lsjournal.com

Emily Mallette failed a vision test at a school health fair when she was 8 years old, visited an eye doctor to find out why and was in surgery the next day to relieve the interocular pressure caused by childhood glaucoma. “They told us when it was diagnosed that she probably would be blind in five years,” said Jodi Mallette, Emily’s mother and principal of Highland Park Elementary School.

But that was seven years…

You are your own (or child's own) best advocate. This rant is to illustrate why you should never give up when you've been wronged especially when it concerns your medical or financial situation.

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As some of you may know, after a very late diagnosis of unilateral congenital glaucoma in the 1980's and many years of struggling with an ugly, blind, and painful eye, I opted this past summer to get my left eye removed through an evisceration surgery. 

This in…

By Michele Blacksberg RNCreated 10/17/2011 - 04:36

Our nails can be important indicators of our general health. Certain nail changes have been related to respiratory problems, vitamin deficiencies and heart disease. An October 2011 study in Korea has revealed another illness our nails may provide evidence of: a risk for bleeding around the optic disc in glaucoma patients.

The study examined the nails of 108 patients with glaucoma using nailfold capillaroscopy, which…

Great article featuring CGN member Douglas Kilonzi!

By JOY WANJA MURAYA 

Children love to run and jump — and they often take a tumble. Two-year-old Renson Mwendwa is curious to discover anything in his environment.

At this tender age, Renson has taken to wearing spectacles due to congenital glaucoma, an eye disease present at birth.

However, this will not prevent…

I just read this amazing and inspiring story.

Well, I told you all about Ian's first shunted eye (right eye) going to an optic pressure of 4.  The doctor took him off all his glaucoma meds and of course now the pressure is back up to 28!   :(    The doctor said she expected this.  He is back on Cosopt but off of all other meds in that eye.   She said it should go back down but he may need a laser surgery in that eye.  Not sure what all that entails.  

So far the left eye shunt has not opened.   His surgery was Sept 1 so…

Wow!!!  We have had a month.   I has had three surgeries.   August 12 was an emergency surgery.  He received a Baerveldt shunt in his right eye.  On August 19 he had a goniotomy in his left eye.  This procedure did not work, so on September 1 he had a third surgery, where he received a a Baerveldt shunt. 

All of these surgeries has caused him to miss a lot of school.  This has been really hard on him.  He would never admit it but he likes school.   He was finally able to go back to…

This is Deena story. Deena is my beautiful daughter whom was born with glaucoma 25 years ago. She has had endless procedures to stop the pressures. She has an amazing spirit and determination.

She bought her own 1 bedroom apartment 3 years ago and lives on her own. She works for the Department of Education in Human resources. She goes to work on the tram on her own and now uses a cane. She has adaptive technology to assist her at work. On September 7th (on her brother's birthday) we…

Technology is improving, and research in this field is getting a boost as well.

By Allen Beck, MD

Caring for children with glaucoma can be challenging. Fortunately, new devices facilitate the office evaluation andsurgical treatment of childhood glaucoma, and a recently formed organization has the potential to improve pediatricglaucoma research.

TONOMETRY

The accurate assessment of IOP in an infant or toddler is often…

Exciting news!!! The medical community is working together to help improve treatments, research, and support for families dealing with childhood glaucoma. I am so thrilled that childhood glaucoma is getting the attention it deserves! Please help us out by taking the survey below.

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The Congenital Glaucoma Network is partnering with The GL Foundation for Children with Glaucoma (…

For those who have been following Amy's Quest for the Perfect Eye, Patching for Adults, and Don't Make My Brown Eyes Blue (my…

Harry Cordellos completed his 44th Bay to Breakers race this year, earning him the title of running the most consecutive Bay to Breakers races.

He has not missed a race since 1968, when he won the “Most Courageous” award. It was his first foot race ever.

“After almost a half a century of Harry running this event, it’s hard to imagine the race without him,” said the event producer Katie Harrar. “He is a great ambassador for the sport of running.”

Cordellos is a…