Our first entry into the toolbox for parents, friends, souses and other who might have someone in their life that could use a hand because they have OI, is the PPD1.
PPD1 is a one page, front and back, PDF designed to give you a path to begin to walk when something does occur and you want to be as prepared as you possibly can be.
Please choose your native language, click to download, print it out and then IMMEDIATELY start filloing in some of the information on the back, it should be commonly held information, but its easier to look it up now, than while youre child is waiting for care in an ER somewhere,
Welcome to the release of the first set of tools for Parents of OI Patients. These will generally be promoted to parents of folks who have OI + children, but really anyone who will ever have charge or take responsibility for kids who might have OI should be familiar with these tools. These were developed by Doctors , Nurses, Parents and Patients who have OI or who care for folks who have OI, over the last 20 years they have been proven effective. Normally the biggest challenge most folks have is in sitting down and filling out the information and then finding someplace where it will ALWAYS be available in an emergency?
Mom? Laminate it and keep a copy folded up at the bottom of your purse. Dad? Get a copy of Moms and laminate it and fold it up in your wallet, your briefcase, or even the glove compartment of your car. School or Daycare administrators, not to tell you your business but I would imagine you have a binder or safe drawer at the front desk where info like this is kept on current students, right next to their allergy information.
Grandma?Grandpa? Aunt Fred? I'm sure yo have a drawer in the kitchen that contains nothing but warranties, registration and probably the off Internet password or two, that makes a great place for information like this.
What is THIS anyway/? What you have in front of you, or could have after a trip to www,TheOIGuy.com/ppd1 (oh look youre here already!). You will find download links near the bottom of the page leading you to download copy in English or Spanish, whichever language is more conformable for you. AND if your lent in any other language and feel we should support that I'm A-OK with it, drop us a line at 
Jerome@TheOIGuy.com and let us know how long it would take you to translate and proof such an item we'd be very appreciate as would the rest of the community. Its amazing how many places on this planet know less about OI than I do. I'm not tying to be a smarty pants, but I would imagine that if Ghana has a National Health Service, than they should know more than I do. Not always true..
So what is the PPD1 and why should you carry one? The PPD1 is a simple 1 page set of information, that will grow with time that includes information about your OI patient, information of who you could call in times of certain emergencies as well as steps to take if you find the staff at the clinic or ER that you find yourself in with your OI Patient, when the staff is looking at you kind of strangely and asking what seem like really personal questions.
Back during the first Gulf War I found myself doing some specific contract work in Detroit. I am the youngest of three kids, 2 of whom are OI T1quality, and Dad's too. So for mom this was the farthest Id been for the longest. Lo and Behold I would find a care package on the front step every month and at the bottom of it there would ALWAYS be an envelope with dozens of articles cut from the 3 county newspapers around my parents home. These articles were always about stories that started in the ER, and frequently ended in Family Court, occasionally with mom or dad stopping by the county jail for a night or two when Family Services was called.
Now I'm not making excuses for healthcare folks, but in 99% of those stories they were doing their job duties and often following specific laws in their area. This was something new for me, growing up as a “Navy Brat” my only concern was embarrassing Dad in front of an officer at the base hospital. Let ne tell you, everyone including the janitor at a USN Hospital is an officer of some rank, so really its not something to take for granted, If you've served you know this, but the military polices their own So what was in these stories sounded terrible, mainly because I never KNEW anything like what they described actually went on in the world. But in civilian hospitals apparently it was rather odd when the “Smith” family comes in for the second time this summer, because little Billy fell out of a tree, again, and broke his arm,, again. My dad would have tanned my hide so badly the first one I would have avoided, trees, bushes and probably tall grass as well, but apparently parenting off base was just as different as anything else.
Again this is before the Internet and before the HUGE wave of research and scientific findings released in 1996 that really enlightened the whole world about the truth behind OI. It probably did the same for many other illnesses, but OI was the one I was focused on. Mainly because from 1965 until 1995 I was told the exact same things about OI, in the exact same order, time and me and time, again. I really didn't expect such a difference in my lifetime. But VOILA, here we are, the majority of what I was told was untrue, from a Medical/Scientific/Biology perspective. HOWEVER, many of the things that parents, nurses, friends and associates who knew other OI folks had given me a LLT of info that didn't always agree with the Doctors, but that information has turned out to be true.
So, we here at Theology consider this “anecdotal information”, and we lend a LOT of credence to anecdotal information. Now font go running to Webster and do a search, dictionaries are not very good at “phrases”, and In surprised by the number of folks I meet who have never heard this phrase before, but simple: ANECDOTE – short story of a biographical or semi biographical nature. So you put the two words together and you get Information Derived from Living through an event. If you've ever been in an exam room and a Dr. takes the ankle thatch swollen and been hurting for 3 weeks in one hands and moves it real fast to the left, at which point you let out a yell, you will find that he is doing that to see if it hurts...you. Yes you could have explained that to him and avoided the pain, but since hes never lived with or experienced the same issue and pain that you are currently in, he has no real way to understand that. So when he moves your ankle and you smack Hui upside the head with your umbrella (not a recommended move) he now has a point of personal reference for what your ankle feels like, albeit on the opposite side of his body.
But in a more personal nature, if YOU have OI personally ask yourself this question: Are you frequently HOT to the point of sweating when others around you are bundled up under a blanket? Do you think it has ANYTHING to do with having OI? Have you asked your Doctor about it? What was his answer?
In MOST cases that I have personally interviewed or the surveys Ice collected here's the responses:
1 – YES
2 – Dunno
3 – Yes
4 – Of Course NOT.
Guess what? He's wrong
, there have been countless studies that have demonstrated that MOST OI patients, especially Types 1,2 and 4 (most prevalent types in N. America) feel much warmer, to the point of sweating even when others around them are cool, the only commonality being they have OI. The same study also demonstrated that 3 digit fevers for several days after general anesthesia are also not uncommon. Unfortunately there has not been any biological connection between OI and your feeling hot that science has yet discovered. Unfortunately many physicians are of the mindset that if the biology doesn't support it, it cant be true. Anecdotally speaking its true in OVER 99% of the patients surveyed. This is also why, in the case of the aforementioned fever the Doctors, staff ad hospitals are VERY concerned and VERY surprised when it happens and their normal methods of dealing with these things fail, Fevers in excess of 100 degrees are bad, even dangerous, and aspirin and water doesn't typically do much. Which when you think about it logically, should surprise no one. They dont know WHY we have a fever, therefore the methods they typically use to FIGHT a fever are not going to work. In a 'C' student in biology, but even I have no issue seeing the logic there..
But I digress, big surprise there I know, but this is why we have assembled much of the information that we have here in this paper for YOU. This is NOT for the Doctor, we are creating some for them, but please dont hand this page to them thinking it will magically solve your issue. This instead is broken into several sections starching with, some steps for you. Please understand, I spent 21 years working in a Level 1 Trauma Center (IT guy), the folks there can ONLY survive if they have a heart for he helping people. So when a nurse contacts Child Services, knowing that it may result in a family separation that hurts her almost as much as it does you. But in most states today she is required to do so by law. Chances are very good that you and I voted on those laws, and may have even thought they were a great idea at the time. In the ER when its happening to my boy, its not such a great idea
. Additionally we have all seen the episode of NCISFBICIA-SPECIAL CRIME SCENE INVESTIGATIONS OF CASES OF CRAZY PARENTS TORTURING THEIR CHILDREN AND STRAY PUPPIES, that just when you're convinced Mom really DID leave the convent to feed a population that the church doesn't recognize, she will always burst out with something along the lines of, “If you try and separate me and my baby boy I will rip your skulls off and vomit down your necks” That you dear viewer start worrying for the kids. : I get it it, its a natural reaction, unfortunately it just makes you seem ever so slightly touched.....by Satan.
Additionally think about your child, they are not used to seeing mom and dad THAT kind of upset. They are scared and hurt and now moms head is spinning around shouting words that are peeling paint in the waiting room. Instead this is the time when you go to the REVERSE side of the document ans start demonstrating that you truly are prepared for emergencies and hairs how you can help.
Once you download your PPD1 please take the time to fill it out, plus there is a lot of blank space to hand write Other things that may help.
Items that you should know off the bat are: OI Patients FULL Documented name. I dont care what side of the aisle you vote on, when your child arm is broken no one care what pronouns THEY prefer. If the child birth certificate says Nathaniel, but everyone calls him Natty Lite, write down Nathaniel middle initial if he has one, and his legal last name. If the divorce is ALMOST final, he still has dads last name. Then you get his primary doctors information. Most people dont carry that on the tip of their tongues, and fooling with a cell phone in an emergency will guarantee that it needs to update NOW.
One optional idea, that I did record in the video is the child's MRN. If the child has been treated in an ER or hospital will have assigned him a Medical Record Number, sometimes called MR, AccountNum, or MRN, those numbers SHOULD travel with the patient outside of major issues, so for example when the child turns 18 he may get assigned a new one. But this is good because if he breaks his arm at home in Altamonte Springs and you take him to Advent Health, then while he is in college at Georgia Tech he ends up in Advent Health Atlanta, that MRN will allow the folks in Atlanta to see everything ever documented on him, medically speaking.
Additionally if you have a family attorney write that information there as well, again you dont want to have to TRY and spell something correctly in an emergency. One of the goals of TheOIGuy this year is to establish a relationship with an attorney that OI folks can call in times like this, but it is a GOAL, were not there yet. HOWEVER the OIF does have a patient advocate on staff to help folks through times JUST like this, they are not a legal entity, but again they will guide you on the path that they know has most frequently worked.
There is a lot more information on the page, read it at your leisure but please download it, print it and keep it handy now, I cant tell you how often I have been in a situation and thought, you know I MEANT to that. Dont mean to, just do it.