Wednesday, December 31, 2008

Blah...that's all I know to say. The boys both spent the night with Mama & Daddy last night and if I woke up once, I woke up ten times. Every time I'd wake up my stomach seems to be in a knot. Just not knowing what we are facing I guess. I mean, I know it's all going to be ok..I know that. It's just knowing that limiting Dalton's activity is best for him..that's just so hard to be facing. I've just been one big ball of emotion since Saturday...fine one minute, bawling the next. Just so ready for some answers and to get the ball rolling to get him better. Part of me just feels so aggravated...and I'm sorry for all of our church friends that are reading this...I know life isn't fair sometimes and I KNOW that you can look around and always find somebody way worse off than you are..but I just want to scream HAVEN'T WE BEEN THROUGH ENOUGH THIS YEAR????????????? NOTHING, and I mean NOTHING that should have been simple has been simple. April 1st, the "nothing but a large cyst" nodule on Mama's thyroid...CANCER. April 26th, just mere hours after visiting Joey's brother, Jason, in the hospital...seeing him seemingly recovering from the infection that threatened to take his life...we get the call that he has died at age 27. Why can't life just be simple for us for once? Here we are at the end of a crappy, crappy year...yes, there were blessings and good things, but all in all, not what I would call one of our best years....and now we are starting another not knowing what we are facing with Dalton. He could do fine, but then there are kids that have dealt with this for years, going through periods of no activity, braces, casts,'s just so overwhelming. Sorry for the pity party...I'm just not feeling the holiday spirit today.

Tuesday, December 30, 2008


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 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 that's a plus I would think.

I know it seems crazy that we are still searching for 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.

Little Update

I promise I will do a full post explaining everything later on, but just wanted to let you know that Dalton has an appointment with Dr. Jennifer Hooker at the Medical University of SC on Jan 13 at 1:15.

I know everyone is anxiously awaiting news...

but I am swamped with insurance, etc etc and it looks like (for reasons I will explain later today) that we are going to have to get a second opinion.

I will post more later.

Monday, December 29, 2008

Appt Set!

Just got word that Dalton's appointment is tomorrow morning at 10:20 in Greenville. Originally they had it set for 1/8 but I talked to the nurse as she was giving me instructions with what to do with Dalton until that point...getting crutches or a walker...but then she said that she wasn't going to put us through the wait that she was making him a slot tomorrow morning!

I will update as soon as I know more!!

Praise God!

I've already made a friend!

The internet is amazing at times...This morning I woke up to an inbox full of emails sending thoughts and prayers to us. We are so blessed to have such wonderful friends and family to help us through this. One email that I had was from a lady named Donna. She sent me an invitation to join a yahoo group that is a perthes support group. So I posted my intro, linked people to Dalton's blog, and before I knew it I had an email from a delightful lady named Sandy that just so happens to live in Cashiers. Her son, Jonathan, is 7 and was diagnosed with perthese when he was 4. AND her husband fishes on Keowee regularly and she's in Seneca about once a week so we are planning on meeting for lunch soon. It's so nice to have someone to talk to that understands your fears and can help with questions that you don't know where to look to find the answers.

I am going to start with some "favorite links" on the sidebar, so make sure to check them out sometime.

So far all I know this morning is that we are being referred to Dr. Michael Beckish in Greenville. The referral has been faxed over and we are just waiting on a call back from our ped to let us know the date and time.

Thanks again for all of the prayers and support. It means so much to us!

Sunday, December 28, 2008

The Xray Report

Here is a copy of the hospital report:

FINDINGS: The examination demonstrates lucency undermining the cortical surface of the femoral head, and some mixed sclerosis of a portion of the right femoral head, findings that are concerning for Legg Calve Perthes Disease. There is flattening of the hip. I suggest consideration for AP view of the pelvis to allow correlation assessment, although LCPD is typically a unilateral disease process.

IMPRESSION: Suspect Legg Calve Perthes Disease. Orthopedic management consultation is recommended.

Ok, so to break this down...if anyone knows what some of this means it would be most helpful. When I went to google and plugged in the words "lucency and sclerosis of femoral head + legg calve perthes disease" it brought up articles talking about that is "fragmenting" of the I am not sure if this means that his hip ball is fractured or if it just where it is deteriorating or what...Blah...sometimes the internet can be frustrating.

Alright and here are pictures. First here are two pictures of a NORMAL hip x ray in a child.

And here is a picture of Dalton's hip x ray. The pic isn't so great bc the hospital cd doesn't allow you to copy the pics so I just took a picture of it with my cell phone.

As you can see, Dalton definetly has some issues going on.

Please just pray that tomorrow we can get an appointment quickly with the ped ortho so we can move forward and get Dalton's leg better.

Our Journey Begins.....

Not really sure where to start as I am uncertain as to when the problem really started...About 3 weeks ago one morning as Dalton got out of bed he said "my 'weg' hurts"...he limped around on it for a little while and I remember asking him did he hurt it, did he fall? And he just said no. He's 4 and wide open just made sense that he'd pulled something or hurt it falling. Fast forward a few days and I am still noticing the on and off limping but he is still continuing to play normally...pushing cars/trucks wide open down our long hallway and then slide to a stop on his knees. The Wed before Christmas Eve (12/17) he complained a good bit of leg pain..but we were leaving for the mountains the next day so I told my mom that he had been complaining some and that I guessed when I got home I would take him to the dr that Monday. Well, while we were in Dollywood he slipped and fell in the bathroom and came down hard on his right knee. He cried just a little but he started limping I thought he had just reinjured that leg. I decided to give it a few more days before taking him to the pediatrician. The week of Christmas came on and Christmas night he was cleaning up toys and once again slipped on a toy and fell on his right knee. That night when I put him to bed after about 15 minutes he started crying. I went to check on him and he kept crying saying "my weg hurts my weg huuurrrrts". My heart sort of sank because I just didn't think it was normal. I gave him some motrin, the pain subsided, and on Friday morning I called the dr's office. After talking with the nurse she felt like he was just reinjuring the leg and for me to bring him in to the office in a few days if it wasn't better. Saturday morning Dalton woke up with the croup. Our pediatrician was open so I took him in. When the nurse called us back she said "Dalton, why are you limping?" He just sort of shrugged and I said that I had thought about mentioning it to the ped that morning that I had called about it the previous day. She noted it on the chart and when Dalton's ped came in the room she seemed more than just a little concerned with his leg. She said that lots of things caused leg pain...but not many caused limping. One thing that she said was the in children leukemia can present as leg pain or it could be some kind of hip disorder. She laid him flat back and checked out his legs...The left leg did fine but when she tried to rotate his right hip out you could tell it hurt, even though he shook his head and told her no that it didn't. She said she honestly felt like it was something in his hip. We were sent to OMC to have blood work...she ordered a complete blood count, a sedementation rate and a rheumatoid factor. The CBC was normal other than his white count being a little elevated from the croup. His sed rate was normal. The rheumatoid factor takes 4 or 5 days to process..but we don't expect anything to come of it. She also ordered a hip xray. Dalton was such a brave boy...he was so nervous but didn't cry at all when they did his blood work or xray. The xray tech was so kind and even let us go to the back to see Dalton's "bone" as he calls it. We asked her if she saw anything that looked off and she said that she didn't do many pediatric xrays so nothing really jumped out..but I thought something looked a little odd...It looked like there was nothing connecting his leg bone to the hip area. The ped called me within half an hour to say that the radiologist said it's LCPD. She said that the ball and socket should be nice and round and his ball is completely flattened. We will be referred to a pediatric orthopedic dr for further testing and treatment options. As it stands, his leg is in greater danger of breaking because there is no blood flow to his hip socket..which makes his leg brittle. Even turning an ankle could break it. Also, he's in danger of the hip popping out of socket since the ball is not there to stay in. Honestly, at this point I do not know what we are facing. Depending on the age of the child and the severity it can vary from wait and see (which I personally don't think will happen since his ball is already flat), bedrest and traction, casts, braces, surgery, and/or therapy and a combination of some of these things. The hope is to have good mobility of the hip and for the bone to regrow and reshape. He's at great risk of having to have a hip replacement early in life (by around age 50) and also of developing crippling arthritis in the hip. Needless to say, we are devastated. I know that it's just temporary...the braces and all...but as a mother the thoughts of watching him stand at the door seeing Hunter jump on the trampoline (yes, their Christmas present this year...what a cruel twist of fate), or ride his bike, or run and shoot just kills me.

Being the "google-whiz" that I am I have found tons of resources on LCPD and here is a little bit about the disease.

It occurs in 1 in 1200 children, primarily white boys between the ages of 4 and 8. (Yeah, that's us.)

Instead of me trying to type it all up..HERE is a great link that explains it all as well as treatment options.

Please keep us in your prayers as we see the doctor (fingers crossed for this week) and get this all sorted out.