Dentinogenesis Imperfecta

I wanted to talk about other diseases that are associated with Osteogenesis Imperfecta. I remember asking some questions about what types of food individuals with OI could eat. I  tried to find some information on what that particular disease was.  The disease is called dentinogenesis Imperfecta. Dentinogenesis Imperfecta is a genetic tooth disorder that causes an individuals teeth to become brittle,  discolor, and weakened. There are three types of Dentinogenesis Imperfecta. Type I of Dentinogenesis Imperfecta is similar dental formalities usually an autosomal dominant trait with variable expressivity but can be recessive if the associated osteogenesis imperfecta is of recessive type. Type II of Dentinogenesis Imperfecta occurs in people without other inherited disorders (i.e. Osteogenesis imperfecta).It is an autosomal dominant trait. A few families with type II have progressive hearing loss in addition to dental abnormalities. I could not find any information on type III.

     I was hoping that I could find some good books (other than the one I discussed in a previously blog) to read that involved Osteogenesis Imperfecta. One of my friends recommended Handle with Care by Jodi Picoult. Handle with Care is about a family that goes through a trying time with their daughter that was born with OI. You learn about their experience that they face as they try to raise their daughter Willow.

      I found another book from the author's perspective living with OI. A Little More Than Perfect: My Life With (And In Spite Of) Osteogenesis Imperfecta by Heather Anderson. In this book she talks about the challenges she faced and how she lived a great life in spite of having Osteogenesis Imperfecta.

     These books can be found on any book selling website. I found copies on amazon.com.

The History of Osteogenesis Imperfecta

     I wanted to learn about the history of Osteogenesis Imperfecta so I decided to do some research. I wish I could have went to the library but unfortunately I'm on their naughty list ;-). So as any other person would do I googled the information that I found was located at this link. http://en.wikipedia.org/wiki/Osteogenesis_imperfecta#History

     I found that OI was not always called OI. OI was named after two doctors that studied the disease during their time. Which is typical of anything that someone finds or studies. I then tried to find the very first individual that was diagnosed with OI. I came across a king from the ancient Egyptian time. He was said to have soft skin with soft bones, and this is why he was nicknamed Ivar the Boneless. It was said that since his bones were soft he had to be carried around with a shield because he could not walk.

Different Levels of Osteogenesis Imperfecta

       The last time I blog I referred to different types or levels that Ostegenesis Imperfecta has on individuals. Today I am going to provide information on the different levels and how the affect the individual. There is a total of eight different types of OI levels. Of the eight types two are recessively inherited types (meaning that you inherited the gene from your parents and it is possible that your child will have that recessive gene). The link to the website where I will be getting my information from is: http://www.oif.org/site/PageServer?pagename=AOI_Types
      
       The first level of OI that I would like to discuss is type I. Type I is the mildest and most common form of OI. Individuals at this level typically do not experience any bone breakage until they start to walk. Some of the fractures that they may experience are located within their long bones. The individuals in this stage tend to have shoulder and elbow dislocations. Individuals that are classified in this type stature is typically shorter than that of their peers. They also have less fractures after bone growth has stopped.

        The second level of OI that I would like to discuss is Type II. Type II is the most severe form of Osteogenesis Imperfecta. At birth, infants with OI Type II have very short limbs, small chests, and soft skulls. The infants lungs are underdeveloped and their birth weight is typically low. Respiratory and swallowing problems are common. Infants with OI Type II usually die within weeks of delivery. A few may survive longer. Cause of death is usually respiratory and cardiac complications.

     The third level of OI that I would like to discuss is Type III. Type III is the most severe type for the children that survive after the neonatal period. Infants suffer from bone fractions and broken bones. As an adult the height is usually shorter than three feet six inches. The head is larger than the body. Type III has similar issues with infants as far as respiratory problems.

    The fourth level of OI that I would like to discuss is Type IV. People with OI Type IV are moderately affected. Type IV can range in severity from relatively few fractures, as in OI Type I, to a more severe form resembling OI Type III. The diagnosis can be made at birth but often occurs later. The child might not fracture until he or she is walking. People with OI Type IV have moderate-to-severe growth retardation, which is one factor that distinguishes them clinically from people with Type I. Bowing of the long bones is common, but to a lesser extent than in Type III. The child’s height may be less-than-average for his or her age. It is common for the humerus and femur to be short. It is important for individuals that are associated with this type to address difficulties with social integration, participation in leisure activities, and maintaining stamina.

       The fifth level of OI  that I would like to discuss is Type V. OI Type V is moderate in severity. It is similar to OI Type IV in terms of frequency of fractures and the degree of skeletal deformity.
The most conspicuous feature of this type is large, hypertrophic calluses in the largest bones at fracture or surgical procedure sites.

      The sixth level of OI that I would like to discuss is Type VI. OI Type VI is extremely rare. It is moderate in severity and similar in appearance and symptoms to OI Type IV. This type is distinguished by a characteristic mineralization defect seen in biopsied bone.

        The seventh level that I would like to discuss is Type VII. Some cases of OI Type VII resemble OI Type IV in many aspects of appearance and symptoms. Other cases resemble OI Type II, except that infants have white sclerae, small heads and round faces. It is common for leg bones, humerus and femur to be short.

     The final level that I would like to discuss is Type VIII. Cases of OI Type VIII are similar to OI Types II or III in appearance and symptoms except for white sclerae. OI Type VIII is characterized by severe growth deficiency and extreme under-mineralization of the skeleton.

     I hope that this post helped you understand the different levels or types of OI. Reading this information was very informative and it helped me gain some insight on the experiences that individuals with OI have.

      I was determined to find some focus groups, meetings or something for couping for families  of Osteogenesis Imperfecta and I stumbled across this lovely website. On this website there was information for for support networks, research an studies, and also resources for parents. There was so much that I wanted to find out about on this website but I needed to stick to what I was looking for which was support groups. The links that they had for support groups were: official OI foundation facebook, official oi ning, OI parents facebook, OI dads facebook, and OI parents yahoo group.

     First I clicked on the official OI foundation facebook to see if it would take me to the website to chat with current individuals with OI. What I found was a direct link to facebook (of course I had to log in). Once I logged in I found an up to date page for families with OI. One post caught my eye, a mother posted that she (and her husband) could not longer care (financially and emotionally) for their daughter and she wanted to know if someone could adopt her. I know that having a child is stress financially and emotionally but the stress level is higher when you have a child with a disability. I'm not in their situation but I could never find it in my heart to give my child up for adoption. The Lord intends for things to happen in your life to make you stronger and if  were in that situation I would put all my strength in fighting for my child and making sure that he/she was with me regardless of the situation.
      Next I visited the next link on the website which was official oi ning. What I found was that you have to be a member of this page in order to post or comment on some one's status. This site had several different groups that was labeled by their level (level I, level II, etc). I do see recent activity on here but there is not a lot of discussion going on as there was on facebook. On this page people were just posting that they were new to the page and or some issue. question they have but there were not as many replies as there were on facebook.
      Next I visited the OI parents facebook link. What I found was that this was a closed (private group) if you wanted to join you wold have to send an email to one of the administrators of the group and some information about yourself and/or your children in order for the approval to join the group.
      Next I visited the OI dads facebook link. What I found was that this too was a closed (private group). They had a join group tab, I'm assuming that you don't need to send an administrator any special information in order to be approved for this group.
      Finally I visited the OI parents yahoo group. What I found was that this group has 890 members. They have certain guidelines that you have to follow when you are replying to a post or creating a post for other to view. In order to join this group you have to have a yahoo email address set up (which is understandable). This chat/group is current because there are ten new messages and three new photos that were updated by their members.
    Overall, I'm very excited to have found some chat/support groups (yeah!!!!). I was excited because everyone needs some kind of support whether or not you have a child with a disability. Everyone needs support in the world that we live in today! :^) Until next time....


The website that I found this information from is http://www.oif.org/site/PageServer?pagename=SN_FindGroup







    

Two siblings with OI

One of my students (8th grader) and his sister (11th grader; my sister's best friend) has OI. A couple of months ago my student was playing in school and broke his knee. He was rushed to the emergency room and had a long recovery. His knee is still weak and he walks with a limp, but now he no longer plays as much as he used to and he's afraid to play sports for the risk of breaking another bone. His sister told me that when he was younger he fell out of the bed when he was a toddler and suffered a fracture and his mother was almost arrested because the doctors thought that he was being abused by his mother and father. When they ran some additional tests they found out that he suffered from the Osteogenesis Imperfecta disease. I do not know what type he considered but I do know that he needed to go to the hospital to receive calcium because his levels were extremely low. I would like to talk more with them to see how they feel but whenever the subject is brought up they don't seem to want to talk about it, so I leave it alone but they know that if they ever need to talk to me about anything they are more than welcome to talk to  me at any time.

Traveling with OI

Gheesh after several attempts I'm finally back! So while I was resonding to another classmate's blog about traveling accommodations for individuals with disabilities I thought about how families traveled if they wanted to take vacations with their childern. The websites that she recommended links did not work when it came to finding a travel agency that could help someone with the best accommodations when it was time to travel. I did some research and found that a lot of the websites that were reccommended were not actually great. One helpful link that I did find was tips and tricks for traveling with disabilities. This link contained a lot of helpful information. I think that in order to find a good traveling agency for individuals with disabilties would be to look through a phone book or just word of mouth; I have not have any luck and I feel that if I would be considering this option I would be highly upset and frustrated that I cannot find any helpful or useful infromation if I had to travel with my child. The website that I mentioned earlier with the tips and tricks is http://www.classictravelusa.com/tips-TravelWithDisabilities.html

This week I have been trying to find some support/chat groups that are for parents and individuals that knows someone or has Osteogenesis Imperfecta. I had no luck finding any type of support groups that were previously updated or that has continuous chat from this year. I was looking for a group that I could find additional questions that deal with Osteogenesis Imperfecta so I could possibly find an answer or two to a question that I found myself asking about the disease. While looking through several pages I came across one website that contains support groups for families or individuals that suffer from Osteogenesis Imperfecta. This website separated contact information for local support groups by state and even by regions within the state. The website information is: http://www.oif.org/site/PageServer?pagename=SN_FindGroup. While also looking on this website I found that there were some support groups on facebook s well. Since I have a facebook account I decided to go see if I could find any type of support groups. I found several groups they only contained people that "liked" the groups; there was no actual conversations being held in these groups. I was adamant about trying to find a current group that not only contained people that "like" the group that a group that also contained people having conversations about Osteogenesis Imperfecta or about their daily lives. I came across a group titled "Osteogenesis Imperfecta Community Chat". There are only 49 people that "like" this page and the recent posts on there no one is responding too what anyone says. Back in 2011 there were a couple of posts and chats about depression and OI that sparked a conversation but that's about it. Hopefully once I continue my quest again I will be able to contact or find some support or chat groups of individuals with OI.

Hello!!!!
   While doing some additional research on OI, I came across this book titled The Seeds of Sadness by Gemma Geisman. I had the opportunity to read this book and if you read books the way I do you feel as if you are personally there with her! There were some points in the book that made me upset especially after her son was born and the lack of treatment that he received. I do recommend that  you check this book out if you have the time.

  Thanks

Week Two

I was trying to find some information on what types of foods individuals with OI should eat and what foods they should avoid, and I came across this very insightful website that addressed some things that I have not even thought about. The website that I found the following information on can be located at http://www.oif.org/site/PageServer?pagename=Nutrition
I found out about how individuals with OI should maintain healthy weight through a good diet and exercise. I find that this could be a very challenging task for individuals that suffer from OI because with their bones being as fragile as they are it would be very difficult for them to exercise like someone who does not suffer from OI. Exercising or even yoga requires a lot of body movement and and bending and if someone is not careful this activity could be the result of a broken bone. Even a lot of exercise can become very dangerous for an individual that suffers from OI because too much weigh on their bones could cause to other health related issues other than those that are associated with OI.
There was other useful information that could be found on this website but I wanted to give you all the opportunity to see the information for yourselves. Until next time...

Hello All!
    I have found some additional information that answers some of the questions that I found myself asking when I first began this blog. Some of the questions that were answered were:  What type of car seat is recommended for safe transportation of their precious child and what types of clothing should the parents buy since their child is very fragile. I found the following information at this website http://www.oif.org/site/PageServer?pagename=InfChild. I so that this website recommended a specific brand for car seats. I found that that the car seats they recommended we for children that were over the weight of twenty pounds, and they could accommodate children up to one hundred- twenty pounds. I think that the website should have informed the reader that the car seat that this website provides are for the weight limit that I have just previously mention. Different aides with ensuring the comfort and safety of your child are available at this website http://www.snugseat.com/Products.aspx?GroupID=GROUP263.

     Hopefully later on this week I will be able to answer additional questions that I addressed on this website. I will try to locate a blog or parent forum where they communicate with other parents. Until next time.....

Week One (Oseteogenesis Imperfecta)

Hello!
    Over the next couple of weeks I will pose questions that I would like to inquire about Osteogenesis Imperfecta and how it affects individuals and their families. I found this link by googling Osteogenesis Imperfecta and this is the the best link that I could find in order to describe Osteogenesis Imperrfecta. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002540/

    As I was reading about Osteogensis Imperfecta I asked myself several questions; questions that I would like to know if I were in the shoes of parents would be expecting an angel with this crippling disease. Some of the questions that I found myself asking were: I wonder how families with a child that was born with Osteogenesis Imperfecta prepare for the arrival of their angel? What is the safest or recommended birthing procedure? What type of car seat is recommended for safe transportation of their precious child? What do parents do in order to drive their child safely to doctor appointments? What types of clothing should the parents buy since their child is very fragile? As the child gets older, what types of food are they allowed to eat or how is their food prepared in order to reduce broken teeth? Are there parenting classes that teaches the parents the best and safest way to handle their child? If there are any older siblings how do the parents prepare to tell them about how to handle or help care for their brother or sister?

  I did some research and I found that women who are carrying a baby that has been diagnosed with Osteogenesis Imperfecta should be seen by a doctor that has experience delivering babies with serious medical conditions or they should be seen by a doctor that feels competent enough to perform the procedure. I would think that since there are not many cases of Osteogensis Imperfecta many doctors would not be experienced with the birthing procedure of a child born with that disease compared to a child whose mother suffers from preeclampsia.

   Hopefully when I return later on this week I can find more information on some of the questions that I had while I was thinking about this blog. Until next time, live, love, and be happy <3