Cindy,
My son, Tim (also 14), also has very large lymph nodes in his neck.
(And actually throughout his body, although the ones in his neck are
most noticable.) He has also had PET scans that just showed that he
had enlarged nodes. He also had a biopsy once the just showed that he
had "reactive" lymph nodes - no lymphoma.

He was diagnosed with Evans when he was 4, although the lymph nodes got
particularly large after he turned 10 (and had just had a flu shot...
not sure if that was a factor). They say that all the hormones in this
age range, combined with the autoimmunity, can cause lymph node
enlargement. Tim was treated with Rituximab last year and the lymph
nodes shrunk, but as the drug wore off, the lymph nodes swelled back
up. (And he had another flu shot this year... not sure, again, if
associated with the problem.)

Has your son been evaluated for "ALPS" (autoimmune lymphoproliferative
syndrome)? My son's diagnosis was reclassified as that about 1 1/2
years ago. No real difference in treatment, but it explains the
enlarged lymph nodes and spleen (and other "Evans" issues - low
platelet count etc.). He is in a clinical trial at the NIH, as well as
being followed by his hematologist. That might be worth pursuing.
Where does your son get treated?

According to Tim's doctors, there is no clinical reason to shrink or
remove the lymph nodes if they aren't malignant. If his blood counts
are ok, we are just leaving them as is. There are so many side effects
of chemotherapy, that you might want to ask what the goal of the chemo
would be. They also will not surgically remove any nodes, because they
say another one will just swell in its place.

-- Kate

--- In EvansSyndrome@yahoogroups.com, "looker892003" <looker892003@...>
wrote:
>
> hi my son kyle has evans since he was 13 months old. he is 14 now. he
> has swollen lymph nodes in his neck and lymph nodes through out his
> body. he is going for a cat scan and pet scan. depending if the lymph
> nodes got bigger he will need chemo to shrink them. What could this
be
> from?
> cindy(mom)
>