Finding out that your child has Osteogenesis Imperfecta may come in several different forms. Some find out early
in their pregnancy when their ultrasounds show femur length shortening or bowed femurs or even fractures. Other find
out at delivery when the shreak of the newborn is concerning and a swollen limb draws the attention. Still others
are accused of abuse for unexplained fractures in infancy or early toddler years. No matter when the diagnosis
is made, the news is usually overwhelming. Information available online and in medical books is often depressing and sometimes
very frightening. There are unusual terms and long lists of symptoms your child may have or develop. Many
times a doctor may even give a completely inaccurate prognosis for what the future holds. It can be an incredibly frightening
time for parents.
If there is one piece of advice that more experienced parents can share with "new" OI parents it is to HAVE HOPE! There
has never been available more promising medical treatments and advances in surgical techniques that
will help children with OI live much more fulfilling lives. No doctor is able at birth or infancy to
predict what the future will hold for your child with OI and how severely or mildly a child will be affected. Please don't
let that long list of "what to expect" get you down. Focus on your child as a child first, having all the needs of love
and touch and security that any child needs. Tell yourself that it is critical to take things one day at a time and
allow yourself time to internalize all the new things you are learning. There are many other parents out there who havewalked
the exact same path you are walking and who are more than willing to share their experiences in an attempt
to help make this journey easier for you and your child.
Personal OI Stories
A moving poem about raising a child with a disability.
Testing for OI:
There are different types of tests that can be done to determine if your child has OI and/or to tell you what type
of OI your child has. For some people this is very important, particularly if the child has a more mild case or if the family
has been accused of child abuse. For other families a clinical diagnosis is sufficient and they feel no testing is needed.
The tests available can take months to get results and often the results are not 100% accurate. Often a child CAN have OI
even if the test comes back negative.
Whether you decide to have your child tested for OI it is important to consider that the way OI affects someone
is very different from person to person. While the different classification of types (I, II, III and IV) may give you a general idea
of the severity, it really won't affect the way your childs symptoms are treated. Some type I's may experience many fractures,
while there are type III's who present very mildly. Even when OI runs in the family it is not unusual for those affected by
OI to have different levels of severity. So, while a skin biopsy or DNA test can provide some clarity in certain cases, it
is not always necessary to have.
One very important decision that a parent should begin researching is whether or not to start their child on Pamidronate.
It is a known fact that the earlier Pamidronate is started (early infancy) the more dramatic the results can be. Pamidronate
is usually given to those children with moderate to severe OI. Some guidelines for considering Pamidronate would include:
multiple fractures in utero or at birth; multiple long bone fractures or compression fractures (vertebrae) within a
year; or considerable bone pain. Most infants and children with Type III and Type IV respond very well to Pamidronate.
Sometimes when a child has Type I they may not be severe enough to need Pamidronate. Whatever the case may be it is important
to determine if you should consider Pamidronate and if so, work to get the treatments started as quickly as possible. There
is no limit to how early an infant can start Pamidronate, some have begun treatment within the first weeks/months of
live. Please click the following link to read other parents experience with starting their child on Pamidronate.
Real Life Pamidronate Experiences
Finding a Good Orthopedic Surgeon:
It will be important to find good local orthopedic care for your child when they fracture. A good orthopedist will be willing
to work with you and include you in the decision making process of caring for your child. It is not always possible to find
a doctor with considerable OI experience, but it is critical that the orthopedist be open to learning about OI and becoming
knowledgable on the latest treatment options and proper care for an OI child. For example, the weight of a plaster or fiberglass
cast may be too heavy for the bones of a child with OI and often the cast can act as a fulcrum, causing the bone to break
above or below where a cast ends. It is important for an Orthopedist to know this and consider using lighterweight splints
when possible. Also, children with OI usually have their fractures immobilized for considerably less time than a child without
OI.. Because the bones, and often muscles, are already weak to begin with it is important to immobilize a fracture for as
little time as possible so as not to let the bones and muscle atrophy (become weaker from lack of use). Some parents
find a good orthopedic surgeon from the start, and for others it takes a little time. Don't be afraid to explore your options,
you may have to travel to a nearby hospital or city, but it is worth it to find a doctor you feel comfortable with.
Personal Rodding Stories in OI
Educating Your Local ED before the fracture
You may want to contact the head of your local ER and let them know that you have an infant or child with
OI and you may be bringing them to this particular ER for fracture care. It is a good opportunity to find out if they are
familiar with OI and to possibly suggest that they educate their staff on handling a child with OI. The OI Foundation offers
a booklet to help educate doctors and nurses about OI and it would be great to send one to your local ER, particularly if
you will be going to smaller hospitals where they are less likely to have seen patients with OI.
Choosing an OI CLINIC:
At some point many parents choose to take their child to a particular OI CLINIC to be seen by a team of
OI specialists. OI is such a rare disorder that it can be very helpful to have the knowledgable opinion of these specialist to
help you better understand how OI affects your child and to build confidence in your ability to care for your child.
Your local doctors are necessary for immediate fracture care but some still choose to see experts at regular intervals
or as needed. This is important in guiding them in decisions regarding their child's OI care. Many families
travel long distances to use the best surgeon who is willing to use the most modern rods and surgical techniques. Usually
these "OI Clinics" are held monthly and it is an opportunity where all the specialists that a
child with OI would need can be brought together (pediatrician, orthopedic surgeon, nutritionist, physical therapist, occupational
therapist,dentist, audiologist, etc) in one location reducing any miscommunication about their child's care. It
is also a wonderful time when OI Parents can meet together to enjoy the company of other people who understand their complicated
OI Centers of Excellence
If you happen to live near a Shriners Hospital for Children it would be a good idea to begin the Shriners Application
process. Shriners Hospitals for Children offer free expert medical care to children, birth to age 18, with specific disorders
or medical needs. Having OI qualifies a child for care at these hospitals. Some have better reputations for being more up
to date in their treatment of OI, Montreal being the absolute best. Other good Shriners Hospitals include: Los Angeles,
Chicago, Intermountain (Salt Lake City, Utah), Tampa (complete this list!)
For information about Shriner's Hospitals