Friday, May 8, 2015

OI Want to Know Part III

In honor of OI awareness week, instead of the usual post, I'm doing a Q&A series called OI Want to Know...answering questions that YOU've asked.  I don't have OI, but I care for Isaiah, who does.

Today's post is the last of this three part series and I want to thank everyone that asked a question. Questions lead to answers.  Answers lead to understanding.  Understanding leads to acceptance.

Maybe next year I will have my ducks more in a row and I can feature other OIers on the blog leading up to OI Awareness week like I dreamed of for this year?  #lifehappenssometimes ;-)

Do OI kids heal faster than the norm?  I noticed he doesn't need to stay splinted long in the unfortunate event of a fracture.
No, OI kids heal at the same rate as those without OI, but I was told that babies in general tend to heal faster and healing time slows as people age.

I will tell you, I tend to remove splints from Isaiah earlier than I really should, but Isaiah has only had hairline (mild) fractures since birth, and I know that if Isaiah had a displaced fracture (I am knocking on so much wood right now), we'd definitely keep the splint on much longer.  He's not much of a mover and a shaker, so the doctors have given us their blessing on our shorter timelines for past fractures.

How do you know when to splint vs when to go to the hospital?
This depends on many factors.  We normally make that decision on a case by case basis, and usually after conversing with more experienced OI parents and adults living with OI.  If it involves Isaiah's skull or a traumatic event (like that time I dropped him), we go.  If we can get him comfortable, we wait it out.  We avoid the ER if possible; that's because we have a good relationship with his specialist and I tend to email or call him immediately about a fracture.  I have told Dr. B about every fracture; this is partly because he guides me with what to do and partly because Isaiah is part of a study and it's important information for his records.

Do you do anything to make Isaiah's bones stronger?
Yep. :)  Isaiah goes to DuPont bimonthly for treatment, called Pamidronate, through his port (it was through an IV in his hand/wrist before the port was surgically placed).  We stay together at the Ronald McDonald House across the street from the hospital and spend a few hours in the hospital each day for three days while he gets his treatment.

Pamidronate helps to slow down the breakdown of the bones as they grow.  Normally, bones grow like skin; as new cells are formed, old cells will die and flake away.  Pamidronate slows down the deterioration of old bones cells.  It's not that it necessarily makes the bones stronger (that's always my easy way to say it), but it gives his bones more cells....which in turn basically does make them stronger...

I want to mention that people have asked me if I give Isaiah milk to strengthen his bones; please understand that I could give him ridiculous amounts of calcium-rich foods and that will not cure Isaiah of his OI.  OI is a collagen disorder, not a calcium disorder. ;-)  Each time that Isaiah goes for his treatments, he has blood drawn.  The doctors get his Vitamin D and Calcium levels and thus far both have been perfect (pardon me while I knock on some more wood).

When will Isaiah get rods?  Can you tell us a little bit about the rodding surgery?
When?  Isn't that a good question!  Isaiah's doctors believe that Isaiah shouldn't get the rods until he's wanting to move more and thus breaking.  The positive of that is the more we wait, the more pamidronate treatments, the better quality of bone they will have to work with when they do place the rods (and the better the quality of bone, the less likely those rods will migrate! ouch!)

I've noticed that Isaiah's orthopedic surgeon doesn't tend to schedule rodding surgeries...he makes notes that rods would be helpful or need to be replaced in older kids' bones but waits until they experience a fracture in that limb and then schedules the surgery ASAP.  That's because the process of placing the rods involves breaking the bones that they go through.  I appreciate that he doesn't like to break a bone and waits for breaks to happen, although I can be impatient about rods and seeing Isaiah's legs less bowed!

The rods we hope to have for Isaiah are known in the OI community as FD rods.  FD rods are telescoping which means they grow with you (until a certain point) and the surgery is much less invasive (less and smaller incisions that other types of rods).

I imagine we'll be seriously talking rods within the next year. but I feel like I've been saying that. ha.

Is Isaiah always in pain?
No.  In the beginning, if we didn't have him on pain medicine, he would have been.  But once he had a few doses of pamindronate (that itself is known to relieve a lot of the chronic pain that some with OI say they live with...not everyone with OI says they have chronic pain, though), we weaned him off of the meds and well, that smile speaks for itself, don't you think?
I mean I think Isaiah does have an insanely amazing high pain tolerance, but would he really be this smiley and happy all the time if he was in constant pain?


Thank you for all of your wonderful questions and for turning the world yellow for awareness of OI.

You rock.  Seriously.

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