Tuesday, December 30, 2008

Update

Alright, as promised, here's the update of the day.

We had our appointment this morning. We really liked the dr..he was very friendly and took his time with us. He had Dalton walk to the end of the hall and back so he could see his limp (which, of course, wasn't as bad this morning). Then he had him lay on the table so he could check his range of motion (ROM). To check this he pushes each leg upwards (to bend the knee)..then he takes one leg and he pushes it up and out (bent at knee and out to side). Dalton did pretty good with that. Well he took the right hip and rolled it in towards the other leg and Dalton's whole body came with him...he's pretty stiff that way. He got him to flip to his belly (think on belly watching tv with legs up in the air). He took both legs and pushed them outwards..well D's left leg could go almost down to the table..the right leg more or less stayed at the mid-point. There was a resident dr in the room and he looked at the resident and said "see..he has significant loss of ROM" and I knew what he meant by the "ROM" (he actually said rahm)..LOL I have learned so much on my Perthes borad in just a day! ha Anyway...he tells us he wants more xrays and that he would come back in to talk to us.

After reviewing the x rays he came in and said very matter of factly "well, he has it..he has Perthes". He goes on to tell us that "old school" doctors still do braces and casting but that studies are showing that not doing that can sometimes be as effective. Good news...Then he goes on to say that he would just treat the pain right now that nothing would stop the limping. I asked him what activities is he restricted from and he said none...red flag...but I was just in a daze I guess I wasn't sure how to reply. He said that to let Dalton lead...if he felt like jumping on the trampoline to let him but to know that if he jumps then he's probably going to be in pain, etc. Crutches or a walker would come in handy on the harder, more painful days, but D is too young and it would be akward. I asked about a wheelchair for those days and he said that he had seen to many kids become dependent on one. Ok. He will see him back in 3 mos for more x rays. Super nice dr...seriously.

Alright, on the way home me and Joey start discussing this and come to the conclusion that basically we have accomplished NOTHING other than had the diagnosis confirmed. Not to mention that every.single.thing I had read about Perthes talks that at the very least there would be a limitation on activity. As my new friend Sandy explained that the jumping up and down would just compact the bone more, causing it to flatten more which would lead to surgery and casting for 6-8 weeks. Now, Sandy may not be a doctor...but she has dealt with Perthes for 4 years now. It's the way I am with preeclampsia. I had it, had a rough go of it, but I took that and learned about it and I can honestly say that I probably know as much about it as a doctor knows...I am even a co-founder of a preeclampsia website. But I digress...we got home, called our pediatrician's office and asked them if they had a preference for this particular doctor...that we did really like him but that his ideas had gone against everything that we have learned about Perthes in the last 3 days. They said that other than Shriner's he was the only Ped Ortho in the upstate. The pediatrician gives word to the up front staff that they want us in at MUSC (Medical University of SC) in Charleston. So we now have an appointment with Dr. Jennifer Hooker on Jan 13th at 1:15pm. I have no idea what she will say...her speciality is hip and leg disorders in children...so that's a plus I would think.

I know it seems crazy that we are still searching for answers...you would think we would be happy with no restrictions on Dalton...but the thing is...if we let Dalton continue his normal WIDE OPEN activity for 3 months before we see the ped ortho again will his condition be worse to a point of surgery or casting or braces by then? Perhaps if he is limited right now then in 3 months they will look at new x rays and say that they have seen improvement. We are trying to look at the long term picture here..and as much as it will break my heart for him to be limited for a short time even..I'd rather it be that than to let him keep going, not knowing his limits, now and make things worse for him down the road.

One thing for certain...age is on Dalton's side. Under six, with SOME FORM OF TREATMENT, most children do very well. The main concerns right now is that he definetly has decreased ROM. That is not good no matter what the age of the child. Honestly, I was suprised by how bad the ROM actually was, but again, I know it could be worse. From everything I have learned....keeping on with activities like running, jumping, and climbing only worsens the ROM. We don't want that and we don't understand why we weren't put on any restrictions today. I guess that's why people are entitled to second opinions. So as it stands, our appt is 2 weeks from today. Please keep us in your prayers and we thank each of you for checking on us. I am overwhelmed at all of the emails and txts that I have received. It's nice to know how much you care for us.

Also, for those of you that are involved with Dalton, say at church...Awana, etc because of his limited ROM sitting "criss cross apple sauce" may get to a point that it is uncomfortable for him. Right now he can still do this but there are some things that make his leg hurt or pop and we want to avoid this if possible. I know you all love him and will do what you can to help us out with this.

We love you and thank you from the bottom of our hearts.

6 comments:

  1. I'm sorry that you didn't get the answers you were hoping for today. That is really frustrating. At least you can take the restrictions into your own hands and do whatever you think is best for him in that aspect until you get a chance to go for a second opinion. Continued prayers for you and Dalton! (((hugs)))

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  2. I was going to ask if you got with MUSC. I think that is the best place for you to go. To do nothing is unthinkable. Sending you all my love, thoughts, and prayers. Sabrina

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  3. So sorry you didn't get the answers you were hoping for, but glad you are moving forward with MUSC. Hopefully they will be more aggressive with treatment to get Dalton better. Love ya'll.

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  4. I think I would do exactly what you are doing, getting a second oppinion. Sorry you have to be going through any of this. Continued prayers and ((HUGS)) for you and Dalton.

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  5. I sent you a PM on our board about the trip to MUSC, but just wanted to share my comment here too....there's nowhere else in SC that is as good, IMHO. I really hope they give you the answers you're looking for. ((((((hugs))))))

    Jen

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  6. Mom's always know...you do what you think is best,if your heart feels it do it. The Lord will lead the way!! We love you guys...tell Dalton his web site is cool and if he doesn't quit scratching you will have to put some stinky socks on his hand so that when they come near his nose he won't want to scratch...you needed a laugh!!
    Love mary and patrick and all the kiddos

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