Sunday, April 26, 2009

Sigh...I am not sure where to start...I can't think of the last night I had a full night's sleep. I am so conflicted as to what we should be doing for Dalton. I'm afraid that my friends at church think that we (me and D) have just stopped coming. The thing is...nights and mornings are the WORST for Dalton...I imagine for most perthes kids this holds true as well. At night Dalton will fall asleep...maybe sleep for an hour or two and then the spasms wakes him up..he cries, he moans, he tosses and turns..and even when he's not fully awake and crying he's tossing and uncomfortable. He's not getting a good night's sleep..I'm not getting a good night's sleep. The last thing I want to do is wake him up after he's had an especially rough night. Like last night for instance...we went to bed around 10am..hoping to get a good night in so we could go to church. About 30 minutes after he went to sleep he started whining and tossing around..then he was fully awake and crying..and when he's that tired it's just miserable for him. He can hardly hold his eyes open so he's just laying all over me and bawling. Then I'll get him to lay back down and I'll rub his back and he'll doze back off only to start it all up again within a few minutes. So once I finally get him completely settled down and not stirring...he wet the bed. So up again at 3:45 to change him, the sheets, etc. Of course, I'm up at 6:30 with Joey and Hunter as they get ready for church. I'm not just laying in the bed laying out. I'm up, wishing I could be there too. Hunter is sad because he knows I want to be there so he cries wanting me to come pick him up right after preaching. It's just causing such issues for us. (I didn't pick him up and Joey didn't bring him I'm sure he was just fine.) So when Dalton finally gets up this morning we do his stretching exercises and he gets in the tub to try to help with the soreness and he gets out wanting to put on his "soup and tie" and go to church..which by now is basically over. I suppose we could go to the late service, but Joey goes to the early one bc he sings in the early service every week.'s so frustrating.

We are also dealing with Dalton being SOOOOOOOO ill. He will tell you that his leg hurts on and off all day..I am to the point that I think it's almost like a headache or a know, just the dull he's grumpy..will cry and fuss at anything that doesn't suit him the last thing we want to do is to wake him up early for ANYTHING! During the week if he's had a rough night he will sleep until 10:30 or 11am. I am just so thankful that we are homeschooling...that way when he starts kindergarten this year it won't even be an issue. He can get his rest and still be able to do school.

Yesterday was the first day that he was able to really use the pool and he swam a lot but last night was horribly, horribly sore. We took them to get an ice cream last night and just from riding the 15 minutes to the DQ he could hardly walk when we got out of the car. I am just hoping that he was so sore last night bc the pool was really working his leg and within a few days we'll maybe, hopefully, see some improvement.

I still feel very conflicted as to what to do for Dalton. I know we have seen 3 doctors..but to sum it up here's what they are saying. (Not in order of how we saw these drs)

1. Dr. @ MUSC/Charleston--she says if he's limping he needs to be couched..for us to limit his activity based on his pain/limp level. Defintly no running or jumping or climbing. If his ROM (range of motion) gets below a certain level she will cast or brace him. She showed us one exercise to do.

2. Reg ped ortho---says that pain is normal, Dalton's age is on his let him do anything he wants (including the trampoline) because he would rather him be in pain but be active bc being active helps the ROM (but I have seen conflicting things on that as well..being that if he's too active then it causes further damage to the hip socket, therefore further decreasing the ROM).

3. 3rd ped orth--at Shriners...says basicallay the same thing as Dr. #2...BUT they both work for the same hospital system, therefore they consult with all the ortho drs so that they are on the same page as to how to treat things like perthes. Told me to do some stretching exercises which are basically just how he moved his leg when he checked it.

Of course I've done plenty of research online and while Dalton's age is on his side, it shouldn't be the ONLY determining factor for how to treat him. If having him swim and treating him with exercises were all we would need that would be great..I'd be thrilled! But I hate to just act like I'm blind to all the information that is out there..and I'm talking publications from places like John Hopkins Medical Institute...

There is a ped ortho in Baltimore, MD that is supposedly one of the best in the US when it comes to dealing with perthes. I've emailed him with some xray pics and a video that shows Dalton's ROM. I have heard he will do email consults with you to see if he can help you. I just want to see if we are on the right track. If he replies and says that our drs are doing exactly what he would then I will be fine. Thing is..from Dalton's xrays he has almost full head involvement which ups his chance of having to have intervention at some least according to the info available online. It's very hard to think that there is nothing you can do for your child. I know perthes is painful but it's hard when they are hurting. It just seems like there should be something, anything, you could try to do to make it better.

Then yesterday I got an email from a lady named Stacey..we've corresponded some via email..Her son, Simon, is Dalton's age and was diagnosed with perthes in October. At Simon's last appoitment the decision was made to cast him. She sent me the picture yesterday evening and I just cried..for him, for Stacey...for us wondering if going down that road is in our future. I feel so bad for whining or complaining..I mean, afterall, Perthes is not life threatening..just life altering. It's not like's not going to take their lives. It's hard, though, just the same. I guess everybody is fighting some kind of battle.


  1. Lori

    What you described at night with Dalton, is what I had with Alex when he was going through perthes and to some extent, with Caitlin.

    I got into the routine of having a mini pack of Smarties or M&M's on hand, with the pain meds. I would put Alex into bed with me, with the pain meds given and the small pack of M&M's in his hand and put the TV on quietly as a distraction. He would lie there, cuddled up to me, snuffling away eating the M&M's one at a time while he watched TV with me. By the time he had snuffled his way through the pack, the meds would have kicked in & I would settle him back into bed again. Caitlin it was pretty much the same set up and it worked, as the special one-on-one time, late at night, or in the early hours of the morning, were special to them and although I wasn't a big fan of midnight snacks, it was another distraction that helped.

    For Caitlin I also put her onto a magnesium supplement too, as the bed wetting was a real issue at this time and it certainly seemed to help with that too.

    Before they went to bed, they always had a nice warm bath, with lavender oil in it. Lavender oil on a tissue, tucked inside the pillow case too helped with calming them and to this day, they both love the smell of it, when they are having trouble sleeping.

    Hope that helps


  2. One thing that helped us for riding in the car was to put something that he could rest his leg on--the hanging down toward the ground seemed to make it stiffer. So maybe a little stool or something so that his leg is propped up might help. I am sorry to hear he is in so much pain. My son had pain but not a ton, and he has a high pain tolerance. He was close to six at diagnosis, but we never had to do any interventions beyond stretching exercises and activity restrictions. He was lucky! Some doctors will do Botox to help with the tightness in the leg--you might ask about that.

    The dr in Baltimore, is he the one who does external fixators?

    I think you are probably in the midst of the worst part of the pain involved with the condition--my son's was bad for about a year, I'd say, and then got progressively better. I noticed a lot more pain around the times that the x-rays would show further deterioration. Then all of the sudden he wasn't limping much and didn't complain of pain much anymore at all.

    Good luck! I hope that hearing about another little boy who has gotten past Perthes and is doing great today helps put your mind at ease somewhat (not that it helps while you are watching your child in pain!).

    Karla and William

  3. Lori,

    I am 24 and new to the Charleston area from Orlando. I was diagnosed with Leg Perthese disease at age 4 and still have the memories of seeing the bone scans with no hip socket. Ever since my own disease, I look for those with similar situations in the areas where I live to see if I can talk with them or be of any help. The story of your son is much like my own, and all I can say is that I am praying for you and your family. I go through my own problems with prayer and you will be on my list for sure. If you need a victim/survivor of the disease please feel free to reach me at

    Best wishes,

    Champ Rawls

  4. My little guy Davie is 4yrs old... And I just couldn't figure out why the late night waking up walking around the house still in dream land crying and crying was occuring... Even after the Perthes diagnosis... The Doctors act as if oh its fine, or he will be fine... Then through out the night he has started wetting the bed... He's so upset for wetting the bed, He says I'm not a baby anymore Mommy, why am I peeing in the bed.... So today this morning I typed in the google search bar bed wetting and perthes... It led me to you... You just comfirmed my fear.... HES IN PAIN AND AGONY RESULTS OF PERTHES... I'm now sitting here terrified... He walks around with his lil ole man limp all day long playing and never complaining.. He never ever says he's hurting, So I was actually believeing the doctors that he would be fine... because he's four and diagnosed early... But sadly now my heart is breaking because I know it stems from this plague.... Anyone with advice please let me know what to do as well... I think to see him in one of those cast will break my heart... I just want his pain to end... If God would give it to me instead I would take it with open arms.

  5. Sheila message me if you need to talk 864-710-7089. Lori (Dalton's mom)

  6. My son was diagnosed at 7. The older they are the worst the prognosis. Hacing gone through all this with my son I highly recommend opting for the surgery. Your kids will feel so much better. And get back to there day to day life.