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Saturday, February 2, 2013

Perthes Disease

I feel like all I have done lately is blog about not so awesome things going on around here.  I kind of hate that...but it will be continuing with this post.  I try to blog important stuff so family and friends can stay up to date to what is going on with our family. Usually it is all wonderful things, but lately, not so much.  Most of you know I am 100% not a phone talker (plus I love you all, but I just simply do not have the time to call all of you), so blogging helps everyone know what is going on.

Yesterday, Jordyn was diagnosed with Perthes Disease (click for more info).  In summary it is a condition in her hip joint that will need to be treated so it does not worsen.

For the last month or so, Jordyn has been complaining a little here and there about some stomach pain.  We didn't think much of it, but I kept an eye on her and paid attention to how often she said something.  She would say her stomach hurts (usually in a happy tone) but then run off and continue on with her happy, carefree ways of Jordyn.  She started to say it more and more so I started to think something might really be wrong.  Of course, I asked her if she needed to go potty, or felt like she was going to puke.  Both answers were always no, and she was going #2 normally still.  The strange thing a lot of you know about Jordyn (one of many strange things actually) is that she has a super high pain tolerance and she never gets sick.  So when she complains of something more than a couple of times, it probably really is bothering her.

So I made an appointment with the pediatrician on base.  We have been seeing Dr. Padial.  If you are stationed at Minot and you do not take your kids to him, I highly recommend him.  I don't take my kids in for random colds and stuff like that, and it is usually something pretty serious when I do take them in, and he understands that.  He is always very patient and seriously listens to what I have to say.  He right away thought she might be constipated (it can still happen even if you are still going regularly).  He said we are going to try and give her extra fluids and if its still bothering her in a week or so, we will do an X-ray.  Well...of course it wasn't really bothering her (it never really was) but she had still said a thing or two about it.  So he said we are going to just do one and check so we can know for sure.  Well we did the x-ray of her tummy and were shocked to find out she was COMPLETELY backed up.  Like her entire digestive tract was FULL.  He was honestly shocked she was not in serious pain all day long.  So he prescribed her some Mirelax and said she would need to be on it a while to give her bowels a chance to heal and empty when they are supposed to.  (This was on Monday of this week)

Fast forward to yesterday (Wednesday).  I was sitting at the allergy clinic with Geoff during his lunch break.  He gets shots twice a week.  When you get allergy shots you have to wait 30 minutes after your shot before you can leave to make sure you do not have any sort of severe allergic I go and with with him so we can spend time together.  While we were there I get a call from Jordyn's doctor (the peds clinic and allergy clinic are next to each other and share a waiting area).  He tells me that he was so shocked by the severity of her being backed up (and her not being in pain) that he didn't really look super close at the x-ray and was just seeing all the poop....and when he went back to look better at it he noticed something else wasn't right.  At the VERY bottom of her x-ray, you can see the very top of where her hip connects to her femur and he suspected perthes disease. Of course neither Geoff nor I had ever heard of this so he tried to explain it to us.  I got off the phone with him and told Geoff and we decided we should just see if he could come out and talk to us.  He brought us out a hand out with info about perthes and said she needed to get another full x-ray, but of her full hips as soon as possible.  As soon as she got out of school I took her to radiology and had her x-rays done.  After, the girls and I waited around until he could look at them and let us know the results.  About a half hour later, he confirmed that it was in fact perthes disease in BOTH of her hips.

This came as such a huge shock to us as she hasn't every complained about her hips hurting, like at all.  But the space between that shows perthes, is pretty big so it seems like its advanced enough that it should be bothering her.  I asked her if she has any pain in that area and showed her exactly where, and she said, she does.  She said it hurts pretty much all of the time.  She just never told us.  I am not really sure how much it hurts, or if it even hurts her at all.  She said she doesn't know why she never told us, and we tried to set up a time line to figure out when it started hurting...and from what she pointed out, it may have been around Thanksgiving, but who knows.  Jordyn has NO sense of time at all, and even when we do explain it to her, she still just changes the time frame to whatever works in her favor.  If she asks how long til her birthday and we tell her about 4 months, she says "you mean 4 days, right?"  We say no, 4 months, which is over 100 days.  And then the next day she says, yay its only 3 days til my birthday now! So we really do not know how long this has been doing on.  We feel horrible that we didn't know and that for some reason she didn't feel like she should tell us.  We always tell them they need to tell us everything, especially if something is hurting for a while.    Honestly, we may have not found out about this for a long time, until she was in severe pain if it were not for Dr. Padial randomly finding this.  We are so thankful that he took the time to go back and look for something he didn't even need to be looking at.

Jordyn very excited to have her mattress on the floor.
(and no, Jordyn does not wear glasses, these are fake ones but she wears them all of the time)

Right now the girls have loft beds (which I never wanted by the way, I was talked into them).  We were going to be selling them when we moved, but decided to try to sell them a little earlier now with the news.  We didn't like the idea of her climbing up and down the ladder anymore.

We found out that this condition is very rare for girls as it is 4-5x more likely in boys.  She is in the normal age range for diagnosis, and if diagnosed before 6 years old, the outcome is usually awesome and with a full recovery.  We have a referral for a pediatric orthopedic in Grand Forks.  We are hoping to find out every last detail, from when this probably started, to how severe it is, to what the next steps are.  From what we have read it can be as mild as bed rest and physical therapy, to as severe as surgery and months of braces and casts.  We honestly do not know what to expect at this point.  I will be sure to update when we find out more info, but for now we are taking precautions and are remaining more aware of what she is feeling.

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