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Discussion Starter · #1 ·
Has anyone heard of this? Dd's best friend was just told that she has this through her pediatrician. She's been having pain in her wrist, arm, leg and ankle for probably the past month, but the dr could find nothing wrong through exams, x-rays, etc. Finally, this is what they've come up with b/c she has significantly diminished temperature in the affected areas and possibly other signs that her mom didn't mention when we spoke.

Do you know if there is a reasonable prognosis for recovery? Her mom sounded like it was fairly serious and could be a life-long issue. The only causitive factors that her mom was aware of were potentially a minor athletic injury triggering it and that she said it occurs only in extremely intelligent children. I'm feeling clueless and I want to be supportive in any way we can.
 

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First of all, I would make sure this child sees some specialists...I would recommend rheumatology (to rule out juvenile rheumatoid arthritis and other conditions), a neurologist, and maybe an orthopedist. This is not something that can be diagnosed appropriately by a general pediatrician. A gen ped may suspect it, but since it is typically a diagnosis of exclusion, I would definitely get specialists involved just to make sure nothing has been missed. I would also have her see a Pain Specialist (anesthesiologist who specializes in pain) who is probably the person who can best diagnose and treat this in the long run.

My dd has something similar called visceral hyperalgesia. It is the same kind of syndrome, but in her case it affects her gut instead of her joints/muscles. Neither condition is well understood. One of the leading theories at this time is that the Pain Gate gets opened for some reason (pancreatitis in my daughter's case) and the nerves get sensitized to the pain and left "on." So the pain is still felt even though the cause has disappeared. There is also some research on the relationship with the immune system but I don't really know much about that.

Prognosis could go either way. I know with my daughter's condition, there are some docs who uses a multifaceted approach to treatment that includes medication, behavioral therapy, biofeedback, and so on. It's not appropriate for my daughter (she's 3, nonverbal, and delayed) but it may work for your friend. My daughter's prognosis is not great. Her gut no longer functions and she is on IV nutrition. She's on 4 pain meds and those have helped to the point that she has returned to school and is doing OK.

The usual meds for treatment include amitriptyline or nortriptyline or Neurontin or Lyrica for the neuropathic component and acute pain meds for inflammation and acute pain. My daughter takes nortriptyline, Lyrica (which is a miracle drug), Motrin, and Tramadol for pain.

Here is a good article: http://www.painconnection.org/MyTrea...S_Children.asp

Oh, BTW, intelligence has nothing to do with it at all.
 

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Discussion Starter · #3 ·
Quote:

Originally Posted by srmina View Post
Oh, BTW, intelligence has nothing to do with it at all.
Honestly, that struck me as odd too, but the mom insisted that it was much more common in highly intelligent children and telling her otherwise would likely imply that her child is not intelligent -- not somewhere I want to go.

So, from what you are saying it sounds like the ped may be jumping the gun in regard to dx this. Her dd has seen a PA (physician's assistant) twice I think and this is the first time she's seen her regular pediatrician who said that since the prior x-rays showed nothing, the original pain started after a minor injury to her ankle during a gymnastics class, there is no ongoing injury readily apparent and her currently affected leg (she's been hopping around and refusing to walk on it for a few days) was very cold to the touch, that she was showing most, if not all, of the signs of this syndrome/disorder.

The ped is supposed to be contacting a rhematoid specialist today and getting back to mom either today or Friday. They are talking about starting PT on Monday. I didn't realize it could be as serious as you are saying; thank you for the info.
 

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Discussion Starter · #5 ·
I believe that they have been trying to determine if it is psychosomatic (maybe something going on at school), if her sprained ankle (the injury that started this) is still bothering her, if it is growing pains... She doesn't seem to be in excruciating pain if she isn't using the affected arm or leg, which obviously isn't practical long run.

I'll talk to her mom again on Monday and see if they have gotten in touch with the rheumatoid dr, but it sounded like the ped told them that this was what she had and they should start PT on Monday after he (the ped) spoke with the rheumatoidologist (sp?). There was no mention of an orthopedist from what she said.
 

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Discussion Starter · #6 ·
Okay, this is going to be really obscure and I don't know if any of you will know (srmina?). Dd's friend had a bone scan yesterday to get the official dx. They injected her with dye apparently and then later scanned the leg. It showed decreased bloodflow to the leg and the leg was still very cold. She has been given a dx of RSD or complex regional pain syndrome and is going to go to see a physical therapist for 3-4 weeks which the ped says may bring about remission.

That (possibly) optimistic assessment aside, I did some researching of RSD online and came up with a number of articles that said that RSD should show increased blood flow (hypervascularization) in stage I and II (she'd be in stage I) and that decreased blood flow, or hypovascularization (what she has), is a sign of disuse dystrophy -- meaning that the pathological changes were brought about not by a physical underlying problem but due to disuse of the limb. They said that it is frequently misdiagnosed as RSD, and that it requires different tx.

Do any of you know anything about whether RSD always presents with increased blood flow? On one hand, I don't want to see dd's friend continue to suffer if the PT isn't going to work as well if she doesn't have RSD. Any thoughts?
 

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Sorry, that is really beyond my level of expertise. Is the child being seen at a good children's hospital?

No matter what she has, PT should help, if it is a good PT. It may just be a wait and see thing.
 

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Discussion Starter · #8 ·
No, she's only seen her regular ped (who talked with a pediatric rheumatoligist, but this dr never saw her) and the rad tech who did the scan. I am just a bit concerned that the dr immediately said this was what she had the first time he saw her and I am not sure that he is considering other possibilities -- only seeking info that would confirm his initial suspicion. The closest Children's hospital is an hour away and they have not consulted with anyone there.

I agree that the PT seems necessary either way, but I want her to get any other treatment that she may need as well if RSD is not the underlying cause of the symptoms. Of course, this isn't my child so I do need to let her parents decide what she needs. She is a good little girl, though, and I don't want her to suffer any longer than necessary.
 
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