[Caraleigh]

Originally Posted by buffym

Hi, your story sounds so, so similar to mine. My daughter, who is also 9, has been dealing with this since April of this year. We followed similar pattern, Sever's (no injury trigger, though she was doing an after school running program), ice, Advil, rest, didn't get better. Finally got an MRI and a Dr with a diagnosis of CRPS. We have found a PT that knows about CRPS which is really great, but so far PT isn't helping her pain. She hasn't tried any medication yet.

First of all thank you everyone!. that's exactly what happened with him. after the mri his sports doctor thought it could be crps. now the neurologist doesn't think so. im so flustered yet on his papers it states crps. the bone scan show signs of something there but the neurologist said it wasn't definitive enough for him. now hes gone into a "chronic pain disorder" status. I don't know what to do. send him though more test? just live with this answer and him just be on advil the rest of his life. cause they have him on Neurontin now. was on 1x 100mg for a week, just got done with week 2 of 2x for a week now hes on his 2nd day of 3x a day. and it hasn't really changed much other than he sleeps some nights . I know it can take awhile to take effect but, theyre answer was *find a nerve pain med that will work and that's it.... other than counseling and psychologists. I mean god my kid isn't crazy. hes not making it up. *sorry just upset. but the nurse just told me pretty much its my choice *test or deal with that he just has chronic pain and they don't know why. oh yea and im suppose to throw him back into all activities wtf?!

[Caraleigh]

also question has anyone had the feeling of popping? he gets popping, throbbing, burning, freezing, hes also got the freezing and burning in his forehead. it makes his ears red and sensitive.

[Littlepaw]

Hi Caraleigh,

You must be so frustrated. There is no need to apologize for that. Your concerns are valid. As a mother, I too would be questioning sending him back into activity without answers I felt confident about.

How many chronic pain patients are 9 years old? This doesn't make any sense to me. He hasn't had a pain syndrome so long that he is completely centralized in his pain interpretation. Be sure that isn't a label they are giving because they can't figure out what is going on.

I would want to know what kind of testing they are considering, what they expect it to show and if it is at all invasive.

I don't remember whether your son's doctors were at a major educational center or not. Travel if you need to. Get second opinions. Take the actual MRI disc and all other imaging with you, not just the reports. Be relentless if it is called for. Doctors have different focuses and skill levels. My first orthopedist didn't think anything was wrong with me. Nine months of appointments and searching led me to an entirely different specialty and finally some helpful answers and treatment. Unfortunately it can take a lot of persistence to get what you need sometimes.

I am so sorry your son and family are going through this. Do not give up until you are ready and feel that your concerns have been adequately addressed.

Keep at it Mom, we support you. You gotta take care of that cub!


Oh question on the popping...I am not sure what you mean by that. I used to feel like I was walking on bubble wrap due to swelling.
There is also something called crepitus where there is air build up in joints that have cartilage damage...it causes creaky, popping sensations.
I think many of us can identify with burning, freezing, gnawing and throbbing pains.

[Caraleigh]

Originally Posted by Littlepaw

Hi Caraleigh,

You must be so frustrated. There is no need to apologize for that. Your concerns are valid. As a mother, I too would be questioning sending him back into activity without answers I felt confident about.

How many chronic pain patients are 9 years old? This doesn't make any sense to me. He hasn't had a pain syndrome so long that he is completely centralized in his pain interpretation. Be sure that isn't a label they are giving because they can't figure out what is going on.

I would want to know what kind of testing they are considering, what they expect it to show and if it is at all invasive.

I don't remember whether your son's doctors were at a major educational center or not. Travel if you need to. Get second opinions. Take the actual MRI disc and all other imaging with you, not just the reports. Be relentless if it is called for. Doctors have different focuses and skill levels. My first orthopedist didn't think anything was wrong with me. Nine months of appointments and searching led me to an entirely different specialty and finally some helpful answers and treatment. Unfortunately it can take a lot of persistence to get what you need sometimes.

I am so sorry your son and family are going through this. Do not give up until you are ready and feel that your concerns have been adequately addressed.

Keep at it Mom, we support you. You gotta take care of that cub!


Oh question on the popping...I am not sure what you mean by that. I used to feel like I was walking on bubble wrap due to swelling.
There is also something called crepitus where there is air build up in joints that have cartilage damage...it causes creaky, popping sensations.
I think many of us can identify with burning, freezing, gnawing and throbbing pains.

Thank you, this actually helped a lot. I am going to get some second opinions for sure. And that's exactly what they seem to be doing. Just labeling it just as a "chronic pain disorder". The popping in his foot is painful and normally has throbbing with it. I just want to try to get to the bottom of it. its not like the bone scan showed nothing... there was something there. they just keep saying it wasn't definitive enough. Very aggregating!

[Littlepaw]

Caraleigh,

Bone scans show different results depending on how long a person has had CRPS. My understanding is the further out it goes the less likely it is that a bone scan will show positive. Just to muddy the waters, Keep in mind that bone scans also show things other than CRPS and findings such as bone marrow edema on MRI can be CRPS or can be something else. No test is definitive. CRPS is a clinical diagnosis of exclusion, reached when everything else has been ruled out.

IMHO, the most important thing about testing and imaging is making sure that there is no other reason for the pain. Nerves are easily aggravated and compressed. Mechanical issues with the foot can lead to many nervy symptoms simply through swelling. And CRPS can be caused by a treatable pain contributor. Finding if there is one can be a game changer as far as being able to achieve remission.

I hope you are able to find what you need quickly. Aim high. It is absolutely worth it.

[PurpleFoot721]

Caraleigh;

Littlepaw has done a much better job of answering some of the concerns than I would be able to. As far as the popping, it reminds me of one of the things that my ankle was doing before I went in for surgery back in January. There was so little cartilage left that quite often, the bones would rub against each other and make a popping feel as they slipped off the remaining cartilage and hit bone to bone, very much as Littlepaw said.

I do hope that you are able to find the answers and treatment that your son deserves. So far, the neurologist sounds as if he really does not know exactly what is going on, so he is grasping at straws trying to come up with a different diagnosis first, even though other doctors that you have been to have already ruled them out and concluded that it is CRPS.

If I were a mom, and my son was having a constant problem with pain, I would be pushing the doctor to consider CRPS and do what he can to treat it while it is still early to get the best chance of remission, since other doctors have already made that diagnosis. From there, go ahead and search to see if it is something else. If he won't do that, go somewhere else. I would do what is in the best interest of treating my son's problems, which it sounds as if you are doing that.

I wish you the best at finding the answers, and treatment that your son needs.

[buffym]

Originally Posted by Caraleigh

First of all thank you everyone!. that's exactly what happened with him. after the mri his sports doctor thought it could be crps. now the neurologist doesn't think so. im so flustered yet on his papers it states crps. the bone scan show signs of something there but the neurologist said it wasn't definitive enough for him. now hes gone into a "chronic pain disorder" status. I don't know what to do. send him though more test? just live with this answer and him just be on advil the rest of his life. cause they have him on Neurontin now. was on 1x 100mg for a week, just got done with week 2 of 2x for a week now hes on his 2nd day of 3x a day. and it hasn't really changed much other than he sleeps some nights . I know it can take awhile to take effect but, theyre answer was *find a nerve pain med that will work and that's it.... other than counseling and psychologists. I mean god my kid isn't crazy. hes not making it up. *sorry just upset. but the nurse just told me pretty much its my choice *test or deal with that he just has chronic pain and they don't know why. oh yea and im suppose to throw him back into all activities wtf?!

Are you seeing a Dr at a major medical center? I found that none of the Doctors local to us really had any experience with CRPS, and it wasn't until we went to a major children's hospital that we started getting the info we really needed.

[Caraleigh]

We are currently going to dayton children's medical hospital. And don't have another appointment till Feb 1. They want him on the neurontin for another 2 montha. But he still needs the advil. Doesn't seem like the neurontin is doing much.

[buffym]

My daughter was on Nortriptyline, but had bad side effects. They are switching her to neurontin as soon as we get all the Nortriptyline out of her system. If you can tolerate it, the Drs tell me that Nortriptyline can be very effective - if the neurontin doesn't work for your son. Advil doesn't do anything for us. How long has he been on the neurotin?

[swimtime]

We were told that Neurontin takes about 8 weeks to start taking effect, and then becomes increasingly effective with time. It seems like forever, but don't give up on it yet. Having said that, we found Lyrica to be a better option, but it takes some effort on the doctor's part to get insurance to approve it, as it is very expensive. It starts to take effect in just a few days instead of several weeks. Everybody responds differently to meds, so unfortunately, it takes a bit of trial and error to figure out what works.