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Discussion Starter · #1 ·
We are now looking to find out what is going on with our youngest. He has had chronic rash issues for the past two years and now he has lumps that are growing on his arm and hand. Last summer we noticed a lump on the back of his heel and after taking him to the ped 4 times for it I mentioned it to his derm. she referred us to a surgeon who referred us to a pediatric orthoped and he mentioned that though he wasn't sure what it was he thought that it could be either Juvenile Rheumatoid Arthritis or Neurofibromatosis, both of which I have been researching and thought were possibilities. I called and got appointments with both the Rheumatologist (the end of July) and the NF clinic (the end of Sept) so now we are waiting, while the lump on his heel and the one on his finger are starting to get smaller. I know that this sounds crazy but I am afraid that they will disappear and we will be left with less to diagnose with, this has been a long road and I would love to make Finn feel better. Also when the Ortho reviewed the x-ray he saw two spots on Finn's heel ( the bottom of his foot not the back where the lumps usually are), he decided that he couldn't tell what they were and we are going back in 4 months to check them to see if they have changed in any way. I have been trying to research whether there are any usual findings of bone dysplasias with either JRA or NF, so far I can't find any that I can see are like the ones on the x-ray. I am really getting concerned that something really big is going on with Finn as the bloodwork that he had last month showed slightly low WBC and neutrophils and that can point to many really big health issues.<br>
I am posting a picture of what the lumpy (what Finn's calls it) on his arm looks like, it is not a great picture but I can't seem to figure a way to get a better picture.<a href="http://i269.photobucket.com/albums/jj64/oldeschoolknits/-MediaCard-BlackBerry-pictures-IMG0.jpg" target="_blank">http://i269.photobucket.com/albums/j...tures-IMG0.jpg</a> Does this look familiar? I am not sure whether it is a Rheumatoid nodule or a Neurofibroma and the Ortho wasn't sure either......<br>
Thanks for your help!<br>
laura
 

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((Laura)) have no idea but say your post everywhere with no replies while I was searching for other JRA mamas.<br><br>
Did you ever figure out what was going on?
 

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Discussion Starter · #3 ·
We unfortunately have not found what is going on with Finn. We have gone to Boston Children's Hospital and they are not sure that it is JRA based on the fact that the nodules on his arm, hand and heel have all but disappeared and they could elicit no real pain response from him upon examination. I am still pretty sure that whatever he does have is immune or or some other serious issue. We have an appointment with the NF clinic in Boston the last day of September and perhaps they will be of some help, though I am not sure he really has any definitive signs of NF, as the lumps have disappeared and the last doctor said that is not really possible with NF. Finn has gotten a few more cafe-au-laits in the past few months, I think that they are just more prominent now as he is in the sun more.<br>
I am still trying to track down a doctor who is as convinced as I am that there is something serious going on with Finn. We are currently keeping the rash that he has now, the Derm is convinced that it is all insect bite related under control with some heavy duty antihistamine. I am not happy about this but he hasn't spent every night tearing his skin apart from the pain/itching.<br><br>
Hopefully we can find something soon as I am really getting exhausted of the almost full-time job of trying to figure out what is up with him....<br>
Thank you so much for your concern, it really helps sometimes to have support and encouragement when I am feeling like we are treading water here. Were you searching the boards for any specific reason, I hope that you and yours are all healthy,<br>
laura
 

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How many cafe au laits does he have? My understanding, actually, is that some types of neurofibromas can get bigger and larger, though that doesn't usually happen and suggests autoimmune more. The rash is also immune related usually. I assume they ruled out the possibility that the lumps were enlarged lymph nodes? (not that that would explain the heel anyway).<br><br>
It is good you are going to the NF clinic. I think it is a pretty good one and the doctors there are likely to know other causes of lumps. Doctors who don't really know about NF talk out of their butts about it a lot. I think it's something everyone spends part of an hour on and sees lots of dramatic pictures so they make assertive pronouncements that are just wrong or some theory someone made up. It's obviously not typical and you are certainly right to pursue it thoroughly.<br><br>
Sherri
 

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Discussion Starter · #5 ·
He has 4 or 5 CALs and I have more than that, though mine are not all large enough to be counted for a diagnosis for an adult. The problem with the lumps on Finn is that they have all but disappeared in the last few weeks and that is considered not consistent with NF. I am hopeful that when we go to the clinic we will get someone who will be as interested in finding out what is up with Finn as we are. I am perfectly fine with the doctors not knowing what is going on and searching for an answer, I would just like to find someone who is really willing to push to look for it.<br>
I will totally agree with the whole aspect of doctors not knowing what is going on in relation to NF and just about making stuff up so that they don't sound as clueless, it seems that for every specialist we go to we have to weed through and find one who is really a specialist.<br>
I don't think that the lumps are enlarged lymph nodes as they are not where typically you would find a lymph node, though one doctor did mention that they could be tissue that is reacting instead of the lymph node, though I am not too sure about that. I really was convinced that they were lumps from JRA but the Rheum that we last saw was pretty adamant that they couldn't be because the rest of Finn's history was not consistent with what they were looking for. We go to the clinic next month, so here goes wishing that we will have an answer by the end of the year....<br>
laura
 
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