my son was born jan 1st 2008 and is now on a ventilator because he has respiratory problems due to oi can he over come this issue?i do not know to much about oi just what i have read iam so cunfused and worried i need some help please
i live in miami and no i do not belong to oi in yahoo. what is parimodonat?
Do you belong to OI Parents on Yahoo? Where do you live? Is your child on Pamidronate? If not he needs to be on it ASAP. The best centers for OI care in the US are Omaha NE and KKI in Maryland. I know children who have survived and thrived after initially being on a ventilator. There is a Type II child living in TX that is 15 years old. A type II child in IL who is 8 years old and goes to regular school. A type II boy in Kentucky in preschool who is one of the smartest kids in the class. Email me personally at momofalexi@yahoo.com and read about OI and my OI children at http://alexisoraya.tripod.com and http://averyboiko.tripod.com and some good info on OI at http://oi-child.tripod.com and also go to OIF.org for lots of info.
Mary Peterson-Suri MD
910-639-5941
http://averyboiko.tripod.com
http://myspace.com/the_suri_family
----- Original Message ----
From: mommytobe101 osteogenesis-imperfecta-cpt7574@lists.careplace.com
To: momofalexi@yahoo.com
Sent: Wednesday, January 23, 2008 10:29:40 AM
Subject: [osteogenesis-imperfecta] respiratory problems & oi
Pamidronate is an IV medicine given to children with OI to increase their bone density and decrease there chronic bone pain. It is a bisphosphonate and has become the standard of care in treating children with OI. Tampa Shriner’s is a fairly good Shriner’s hospital for OI. You should contact them in the am. Shriner’s care is free (you do not need to have insurance) and they also will help get you there if you need assistance. OI parents is a very active knowledgable group of parents with OI children with members from all over the world. You can email oigrandma@hotmail.com to join. We also have a photo link where you can see pictures of our kids and how they are growing up well with OI. There are plenty of kids on our list that were on ventilators to start and now are doing well. Without knowing more about your child I can not give you any other info. You should feel to email me personally. When you send it through this site I do not have
your email address. You should have your doctors contact Dr Glorieux in Montreal Shriner’s or Dr Shapiro at KKI in Maryland and these doctors with lots of experience would be happy to advise your doctors. The most important thing for you to do as a parent right now is join OI parents and get the support and advise that will help you be an advocate for your child.
You can read about Pamidronate and other basics of OI at my sites. Pamidronate can be given directly after birth and the sooner it is given the better the child does. If your child is severe enough to be on a ventilator then there are no risks to giving it. Both my kids are on it and are doing phenomenally well.
Mary Peterson-Suri MD
910-639-5941
http://averyboiko.tripod.com
http://myspace.com/the_suri_family
----- Original Message ----
From: mommytobe101 osteogenesis-imperfecta-cpt7574@lists.careplace.com
To: momofalexi@yahoo.com
Sent: Wednesday, January 23, 2008 11:43:35 PM
Subject: Re: [osteogenesis-imperfecta] respiratory problems & oi