Undiagnosed Conditions

[vittleswife]

My 9 yr old son has had Lymphandenopathy since April 07. No labs have turned up any infectious causes. IE: mono, ebv, toxoplasmosis, CMV all negative. We have been going back and forth between doctors saying it is just an infection, give it time... etc.. Waiting to see the specialist. Now the infectious disease doctor has ruled out almost everything except Lymphoma. But the lymph nodes are all under doctors danger size but they are generalized. On his CT it showed some soft tissue density within the anterior mediastinium "most consistant with residual thymic tissue", also he has " nonspecific sclerotic focus involving the posterosuperior left ilium." Could this be related to the lymph node issue? Would a 9yr old still have thymic tissue or could it be lymph node swelling? What could the sclerotic focus be inside the ilium?
Now he has come down with a funky itchy rash in the last 4 weeks and they did a biopsy on the skin of his head to see what it is ( still no results from that yet). However, specialist won't biopsy lymph nodes until rash clears. He is blaming last 6 months of lymph node symptoms on undiagnosed rash Which he even said he doesn't think the timeline fits but...??
I think that all of this could be related. I am not really sure if we can dismiss Lymphoma so easily, since he has no other reasonable explanation for his symptoms. Unless it is autoimmune.
Also is fatigued and puffy under the eyes.
I just need to know what kind of a doctor to take him to for a second opinion, or what could be wrong it isn't lymphoma.

[UroDoc]

A pediatric oncologist may be of value or just going to a children's hospital for evaluation

[vittleswife]

Thank you. I will look into how to see one of those doctors or facilities with our insurance. In case we need a referral. Even if we don't need a medical insurance refferal. I am not sure if I can just make an appointment in the Childrens Hospital here for an assessment with out a doctors refferral. I am calling this afternoon to talk to them to find out what we need to do to see them.

I appreciate your help.

Kristen

[vittleswife]

Just another note: If anyone has experienced similar situation I would appreciate info.
The Skin Biopsy came back after 8 days and it was not what I expected either. His itchy rash that is spreading (isn't contagious/ thank goodness).
It showed No viral/bacterial infection, no fungal infection , no psorisis, etc...they don't think auto immune either. No malignancy in that skin either. In initial report.
They beleive it is a Reactive Process of tons of Lymphocytes all in a mass under the skin. Everywhere he has a rash or a bump.It is almost like he is " making his own lymph nodes " so the doctor says. He is not sure what is causing this reaction in him. They now want to compare the lymph nodes to the skin biopsy to see if it the same reaction, or a quirk that he is having two lymph node symptoms at the same time. They also are having a special pathologist look at the sample again.
So, we are at least getting somewhere hopefully. I am not sure if anyone had the same issue with a rash caused by lymphocytes? What was the outcome if so? The doctors are leaving all speculation open until they get more info on other biopsy and possibly more testing. They also mentioned he could be having a systemic allergic reaction. But, that is really unlikely since he does'nt have any food allergies or symptoms.
They are still not sure about the malignancy in another area until they do more tests, if warrented.
Like I said if anyone has info that could help to take ideas to the doctors. They are all trying but it is difficult to figure all of this out.
Thanks...
N's mom