i have osteogenis imperfecta
I have Osteogenesis Imperfecta Type 1. I am 54 years old. My daughter has OI. She is 28. My grandfather, uncle, and mother had OI.
I would enjoy getting to know others who have lived with OI or a family member with OI.
My husband has a very mild case of OI type I (not diagnosed until an adult). Our daughter is 2 years old and has Type I. She’s presented more moderate than her dad. I am just looking to meet people with OI or that have kids with OI. I love to chat and love learning from others experience.
Hi Im Brandy… I have such a long struggle… When I was 28 weeks pregnant with my son, they noticed some skeletal changes, and I had to see a specialist… They noticed his leg was bowed- and he had certain changes in his body- thin bones in his legs and arms- his ribs are extremely thin… a bell shaped chest- They thought he had Zellweggers, and we were told that he wouldnt make it past 6 months old… I prayed for anything other than that- Than it was supposed to be some disease from Pakistan that only 4 people in the world have…
To, well we got too off course, and we really think he has OI… So we are pretty sure he has OI… As for his type, Ive heard maybe type3… because he is almost 4 months, and is barely 9pds, and has only grown 2 inches since birth… He is tiny… But STRONG and healthy!
When they did his first x-rays the day he was born, we found his leg was broken- and healed…(why it looked bowed) He broke his tibia and a few ribs…
He has a large spot of missing bone in his head, from the bridge of his nose to the middle of the back of his head- Its scary, but Im used to it now…
Everything has checked back normal, so my prayers were heard… His life may be alittle different, but I thank God everyday for him… I love talking with people with OI, my son is the first one in our families… My little man had a pregnancy specialist, a bone specialist, a genetist, and MANY ultrasound techs STUMPED… So we actually found out about him being fragile when he was born- They were expecting him to have clubfoot… Its been a journey, but I am glad that its almost over with! We will have him diagnosed soon… 
So no more testing!!
Hello…my name is Kristeena and I think my 8 month old daughter has mild OI. She broke her femur on Halloween but we have no idea how it happened. My husband and I have been under a microscope ever since dealing with child abuse allegations and various court hearings. I’m looking for advice…support…and a miracle.
The best support and information listserv is OI Parents on Yahoo Groups. You can join by contacting Cecilia Kerstens at oigrandma@hotmail.com I have 2 with OI and would be happy to email with you personally. There also is a website for families accused of abuse with other signs of OI. Debbie Hines is the support person and I beleive it is called Save Our Children or something. I will try to look it up. where do you live and what other signs of OI does your child have.
Mary Peterson-Suri MD
910-639-5941
http://averyboiko.tripod.com
http://myspace.com/the_suri_family
----- Original Message ----
From: rollergirl osteogenesis-imperfecta-cpt2308@lists.careplace.com
To: momofalexi@yahoo.com
Sent: Friday, January 4, 2008 10:55:29 PM
Subject: Re: [osteogenesis-imperfecta] Osteogenesis Imperfecta Member Introductions
It’s Kristeena again…I figured it would be too lengthy to put my whole story here so I placed it under “my story”. Other symptoms my daughter has is low bone density, blue/grey sclerea, and triangle-shaped face. She had a skin biopsy done a few weeks ago and we are still waiting for the results. We have been working with a Dr. Hyman located in CA and he has a lot of experience with OI. We have our trial next month and I’m scrambling trying to get as much advice and knowledge before then. Thanks for giving me the info about OI Parents!!
Oh and I’m located in Omaha, Nebraska.
Hi,
My son has OI and I was reading your story. We live in Utah. If you ever need anything. please let me know
Holly Ewell
hollyallstar@hotmail.com
To: hollyallstar@hotmail.com
From: osteogenesis-imperfecta-cpt2308@lists.careplace.com
Subject: Re: [osteogenesis-imperfecta] Osteogenesis Imperfecta Member Introductions
Date: Sat, 5 Jan 2008 21:40:32 -0500
You live in a city that has an OI clinic. I fly from NC to Omaha once a year to see them and have all my children’s surgeries done there. Dr Esposito is one of the most experienced OI orthopedist in the US and internationally. Dr Lutz has taken over for Dr Plotkin. Contact Dr Paul Esposito and see if he will take a look at your child. You might not be able to get into a clinic quickly (as they are very popular and booked up) but either or both doctors should be able to take a look at your child. Have you had a bone density done. They have a machine at Children’s Omaha and it can do infants. My daughter had her first one at 5 months of age. I know children who have had them at 2 weeks.
Mary Peterson-Suri MD
910-639-5941
http://averyboiko.tripod.com
http://myspace.com/the_suri_family
----- Original Message ----
From: rollergirl osteogenesis-imperfecta-cpt2308@lists.careplace.com
To: momofalexi@yahoo.com
Sent: Saturday, January 5, 2008 9:41:54 PM
Subject: Re: [osteogenesis-imperfecta] Osteogenesis Imperfecta Member Introductions
I have a 3 year old daughter who was born with OI type 3. It has been a rollercoaster ride. I am so happy to find other people out there going through some of the same things. I want to thank everyone on here reading your stories makes me feel like im not alone. My daughter is my world and these special children and people with OI are truley amazing. Thanks
Renee,
Where do you live and where do you get your care? We are in NC. We get our infusions of Pamidronate at home and we go to Omaha once a year for OI specialty care.
Mary Peterson-Suri MD
910-639-5941
http://averyboiko.tripod.com
http://myspace.com/the_suri_family
----- Original Message ----
From: Renee79 osteogenesis-imperfecta-cpt2308@lists.careplace.com
To: momofalexi@yahoo.com
Sent: Monday, January 28, 2008 10:29:41 PM
Subject: Re: [osteogenesis-imperfecta] Osteogenesis Imperfecta Member Introductions
Hi Mary,
We live in Ottawa On. Canada. She gets her treatment at CHEO we lucked out becasue our endo. Dr used to work at the Shriners in Montreal so we are in great hands. We go to Shriners every year for a confrence to meet with all the Dr’s.
Hello, my name is Rachael. I reside in New Mexico. My beautiful 2 1/2 year old daughter and wonderful husband have OI Type I. I’m currently 31 weeks pregnant with another girl. I had the amnio done this time. This baby also has OI Type I. The three of us cannot wait to hold her in our arms.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat 