Re: WHAT I AM ASKING !

[Guest guest]

Patty:

When I was concerned about some big nodes in my DD's neck, I took her back a

couple times -- first to show them and second when they didn't go away. She

always has marbles under her jaw, probably from all the sinus infections and

URIs, I'd guess. They never have a chance to go down?

The one(s) that concerned me are on one side of her neck toward the top. It

felt like the width of a little Dove chocolate easter egg to me, maybe a

chocolate egg-and-a-quarter in length. One ped told me it wasn't one big one,

but

two medium ones right next to each other. Not big enough to need to check on or

do anything about. When it/they didn't go away, they told me they can stay

enlarged for up to a year just with general illnesses. It has now been there

around five months. You can see it/them when she cranes her neck back.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

Hi Patty,

My son Conner has lympadenopathy. Last August our immuno thought he had

lymphoma and he sent us back to hem/onc. The nodes never got bigger and

were " too small " to be seen on the PET, I think they have to be at least 2cm

to show up? We did the PET as a precaution, just to see if anything would

light up, but it was clear. Most of his lymph nodes that we can feel (along

the neck and collar bone) have decreased, but we were told that they will

likely come back from time to time, as this is a common problem with immune

issues. They tell us that Conner will spend a lot of time at hem/onc due to

this problem. Conner's last chest CT still shows the original enlarged, yet

small nodes, along with a newly enlarged node. None of those showed up on

the PET either.

Does your son have a lot of symptoms of lymphoma? Conner had just about

every one and even some things in his bloodwork that pointed to lymphoma.

My best friend's husband had lymphoma and after talking with Conner he was

convinced he had lymphoma too. Thankfully most of his symptoms went away

when we started treating the thyroiditis.

By the way, our immuno still was pushing for a biopsy even after the clear

PET. Once Conner's symptoms started to decrease he changed his mind. He

still is a little concerned about the nodes in the chest, but we decided to

wait a few more months to repeat the lung CT. My suggestion is that you

directly ask the doctors if they think your son has lymphoma and consider a

second opinion.

Good luck!

Mom to Conner (11, possible combined immune deficiency, Asperger's, mild CP,

partial seizures, asthma, GERD, Hashimoto's disease and resolved adrenal

insufficiency),

Hayden (11, unknown PID, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, unknown PID, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown PID, asthma)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

Patty,

occasionally will have one enlarged lymph node here or there....I think

's son has gone through this...they have been doing alot of other

testing and I haven't seen her post lately.

I will send her off listand see if she is around.

Hang in there..

Wish I knew more to tell you.

Quoting willikye2002 <willikye2002@...>:

> I am asking if anyone that has CVID has Lymphoid hyper plasia.

> (Enlarged lymph nodes).If any kids Has Lymphoma is basicly what I'm

> asking without being down right rude. Along with CVID .Alot of PIDs

> have enlarged lymph nodes is what I was told.

> What I am going thru is:Are the drs. gonna tell me those nodes are

> Reactive or Malignant without doing a biopsy on the ones that have the

> hotspots from the PET scan.

> Has anyone kids had a PET scan done and had hot spots.

> Patty

>

>

>

>

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to: /messages

>

>

[Guest guest]

My son's glands are always swollen. We saw an oncologist at the time of

diagnosis (5 years ago) and he refused to do a CT scan to rule out lymphoma.

He said his blood work was not consistent with Lymphoma. To this day, no

one never did a CT scan to check. When I asked him, " How can you know for

sure????? He said, a biopsy or a CT Scan to see his internal nodes. " But

no one has ever looked again. The swollen glands in his neck have

decreased, but never went back to normal again. His immunologist says he

probably had mono that comes and goes...Don't know for sure, but at

diagnosis, he was swollen all over....in his neck the size of walnuts, at

least.

Kim, Mom to 9-CVID

WHAT I AM ASKING !

>I am asking if anyone that has CVID has Lymphoid hyper plasia.

> (Enlarged lymph nodes).If any kids Has Lymphoma is basicly what I'm

> asking without being down right rude. Along with CVID .Alot of PIDs

> have enlarged lymph nodes is what I was told.

> What I am going thru is:Are the drs. gonna tell me those nodes are

> Reactive or Malignant without doing a biopsy on the ones that have the

> hotspots from the PET scan.

> Has anyone kids had a PET scan done and had hot spots.

> Patty

>

>

>

>

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

>