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OI CHILD

That First Diagnosis
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That First Diagnosis
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OI Children are like snowflakes-----no two are just alike.

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.
 
Have Hope!

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.

Starting Pamidronate:

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 lives.

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

Our mission is to provide caring personal support, empowering information and unwavering hope to persons caring for a child with OI.