I need advice...please -

I need advice…please

I need some advice for people in the know. Last Friday, Emmett was at the immunologist. She manages Emmett’s rare fever disorder.

This was just a follow up visit but we left with new concerns.

I mentioned a few times how Emmett complains of pain in his joints, mainly his elbows. Something I have noticed is that his hands are almost hot to the touch, even when he’s not running a fever

I forgot to mention that while we were at the appointment, however, because of Emmett’s joint pain, the immunologist is concerned that Emmett may have rheumatoid arthritis.

We are waiting for our appointment with the rheumatologist. This has us a bit worried and I’m wondering if anyone has had any experience with juvenile rheumatoid arthritis?

My second question is about Elliott. I haven’t posted about this yet but Elliott has been complaining about hip pain.

I didn’t really think anything of it but it has been bothering him on and off now for about a week. We called his pediatricians office today and he will be seen in the morning.

They mentioned that they are concerned about connective tissue disease or something like that. They said that his extremely low muscle tone many actually be secondary to this connective tissue thing. Basically, they are concerned that the low muscle tone may actually be a symptom of this.

They said that with some of the things Lizze has going on that this is a possibility.


Does anyone have any idea what this means? Julia, I guess this is more directed at you. πŸ™‚

As I’m writing this, and I can’t remember if it was Elliott or Emmett -Lizze will know for sure- but one of them had their hips looked at when they were younger because there was to much movement in the socket. I can’t remember which that was now and it’s driving me crazy.

Anyway, if anyone could shed any light on this for me I would greatly appreciate it.

Thanks πŸ™‚

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The replys have some wonderful information in them I am going to forward this site to a friend of mine, thanks so much! πŸ™‚
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Ehlers-Danlos syndrome is a connective tissue disorder that comes in various types: hypermobility, classic, vascular, and three others whose names I can't pronounce or spell. All but one have a (potentially hard to get) genetic test. The hypermobility type is the most common, but is the one that doesn't have any genetic test available. Some people think EDS-hypermobility is the same as something called benign joint hypermobility (though lots of people think 'benign' doesn't belong in that name). All of the types have a wide range of associated symptoms, and it seems that more symptoms keep being recognized. I will note that fibromyalgia keeps coming up as a misdiagnosis for ehlers-danlos, or as somehow connected to ehlers-danlos.

I've done some researching of my own into Ehlers-Danlos, and actually just got back from my first rheumatologist appointment to discuss my joint problems and bendiness. I have to wait for bloodwork to get back now… the doc thinks my problems might be getting worse because of a vitamin D deficiency in the winter.

The links I found most helpful are from wikipedia and from the National Institute for Health. The wikipedia article is http://en.wikipedia.org/wiki/Ehlers-Danlos_syndro…. The NIH links are http://www.ncbi.nlm.nih.gov/books/NBK1244/ for the classical type(s), and http://www.ncbi.nlm.nih.gov/books/NBK1279/ for the hypermobility types. You may want to skip down to the "differential diagnosis" section for both NIH pages which is toward the middle of the page or at the following links: http://www.ncbi.nlm.nih.gov/books/NBK1244/#eds.Di… and http://www.ncbi.nlm.nih.gov/books/NBK1279/#eds3.D…. The differential diagnosis sections provide a list of conditions that can be similar to Ehlers-Danlos in the case that ehlers-danlos doesn't quite seem right. Most of them have something to do with connective tissues, so it might give you a broader idea of what connective tissue disorders are. The highly technical NIH sections aren't too helpful for understanding the disorder, so I'd suggest skipping those.

I also want to note that something like Ehlers-Danlos syndrome hypermobility type, or even classic type, is often rather mild as diagnosed conditions go. It doesn't have to be something that significantly impacts your quality of life. On the other hand, some people can be severely impacted by it. Physical therapy to help strengthen muscles (and therefore protect joints) is very helpful.

Hope this helps!


I have a friend who has connective tissue disease, but she didn't find out she had it until recently and she's in her 20's. She also has arthritis. Most days she does pretty well, and is taking meds to help manage it. She also may not be able to have children because of it, but that's about all I know.

My daughter had hip dysplasia as a baby also. She had to wear this brace for about 6 months that kept her hips a certain way to help build up the muscle. They told me to bring her back if she ever started walking with a limp, but so far not a problem. I hope things get better soon! πŸ™‚


Hi Rob, I havent treated kids with arthritis..so not much help there. In terms of Elliott's hip pain, it may be due to his tone and hyper mobility..the muscles are working harder because the joints aren't sitting right..I know that's what happens to mine anyway πŸ™‚ the only specific disorder I can think of at the moment is something called ehler-Danlos syndrome which can be tested for..I do think there is a genetic component as I once saw brothers with it.

Would love your thoughts, please comment.x
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