Re: Lymphnodes

[Guest guest]

Terri, I don't know what to tell you.but wanted to let you know that I will

be praying for you and your family. Please keep us posted. I have heard

from others about Las Vegas and the docs there. One SDS mom used to live

there, but now lives in Seattle. She is so glad to be GONE.

(((HUGS)))

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

cerdaclan

Sent: Sunday, June 11, 2006 4:36 PM

Subject: Lymphnodes

I am having a hard time. Seems quiet in here lately. A few months

ago, it was brought to our attention that enlarged lymphnodes is one

of the problems associated with CVID and Maggie (my 3 year old) has

always had an enlarged tonsil on the right, but I never noticed

anything else. Even on IVIG, she is still getting tired easily and

has circles under her eyes. She is gaining weight just fine...but

also still gets diahrrea easily and very frequently.

This past week, I noticed that she has a very noticeable lymphnode

along the front of her neck...next to her trachea mid neck on the

same side as the inlarged tonsil. She also complains of being cold

alot. Now I am very worried. For months, I have asked the

immunologist and the hematologist if we are sure we should not be

worried about anything else. I am sooooo petrified that Maggie has

developed Lymphoma and I cannot get anyone to talk to me or even

check her. I have tried to call her pediatrician and he is not

returning my calls. I have sent e-mails to her immunologist and,

while he addresses some of the things I ask about, he has not

answered my questions about this. I have brought up her dwindling

white cell count (3.2) and her nutropenia and low lymhocyte count,

but he says he will look at it and never says anything. We cannot

get the lab results from blood work that was ordered 3 months ago.

AND HAVE I SAID I HATE LIVING IN LAS VEGAS?????!~!!! I am so

frightened for her and I feel like the only thing I can do is start

insisting. My understanding is that there should be some sort of a

scan done to take a closer look at her lymphatic system...including

the lymphnodes that are deeper in her abdomen that we may not

notice. What should we be doing???? As all of our children our

special to all of us...it would crush me if my suspicions are

confirmed. I am angry....I am frightened and I don't know what to

do. HELP>

Terri (mom, Molly (5) and Maggie (3) have CVID with B Cell disorder.

[Guest guest]

---Hi,

She needs to have a Galium CTscan. I hope thats right.It's the

scan with the dye and they have to drink some nasty stuff..Maybe

even a PET scan.They can't tell you it's CVID with Lymphoid

Hyperplasia without a biopsy.Some lymphomas do not show up in the

blood.My son with CVID has lymphadenopathy. He has had CT scans and

a Pos.Pet scan. We are waiting to see about having a biopsy of the

supraclavicular node and/or abdominal nodes.don't let anyone tell

you that she would go down hill fast. Also not true.For the

aggressive ones Yes, Indolent ones,No.We have been talking to his

Ped about lymphoma and that the CVID is actually secondary.He had

biops last yr but they were in-conclusive.But abnormal.I'm lucky,I

have all my son's labs and scans (actual pitures) surgery records.

Have caught his docs in lies becouse of them.I have no faith in the

medical field anymore.They are not very informative.But I have had

to learn the hard way not to follow the Drs. blindly.They need to

amit that they are human and are somtimes wrong.Our Immuno always

sidesteps my questions to. I used that saying " when you hear

hoofbeats its not always horse " something or other that has to do

with Zebras.We are looking for zebras.I'm not going to repeat my

son's comment about that.LOL. He can have a mouth on him sometimes

and I'll just let it rip.Specially on a nurse who sucks at IVs.

Sorry,Angry Mom with issues!!!!

PUSH...Your not crazy either.I'm an offial nut case in my town-

since none can relate I don't care.

Patty , Mom to a very discusted 11 yr old with CVID/Lymphadenopathy

In , " cerdaclan " <tcerda@...> wrote:

>

> I am having a hard time. Seems quiet in here lately. A few

months

> ago, it was brought to our attention that enlarged lymphnodes is

one

> of the problems associated with CVID and Maggie (my 3 year old)

has

> always had an enlarged tonsil on the right, but I never noticed

> anything else. Even on IVIG, she is still getting tired easily

and

> has circles under her eyes. She is gaining weight just fine...but

> also still gets diahrrea easily and very frequently.

>

> This past week, I noticed that she has a very noticeable lymphnode

> along the front of her neck...next to her trachea mid neck on the

> same side as the inlarged tonsil. She also complains of being

cold

> alot. Now I am very worried. For months, I have asked the

> immunologist and the hematologist if we are sure we should not be

> worried about anything else. I am sooooo petrified that Maggie

has

> developed Lymphoma and I cannot get anyone to talk to me or even

> check her. I have tried to call her pediatrician and he is not

> returning my calls. I have sent e-mails to her immunologist and,

> while he addresses some of the things I ask about, he has not

> answered my questions about this. I have brought up her dwindling

> white cell count (3.2) and her nutropenia and low lymhocyte count,

> but he says he will look at it and never says anything. We cannot

> get the lab results from blood work that was ordered 3 months

ago.

> AND HAVE I SAID I HATE LIVING IN LAS VEGAS?????!~!!! I am so

> frightened for her and I feel like the only thing I can do is

start

> insisting. My understanding is that there should be some sort of

a

> scan done to take a closer look at her lymphatic

system...including

> the lymphnodes that are deeper in her abdomen that we may not

> notice. What should we be doing???? As all of our children our

> special to all of us...it would crush me if my suspicions are

> confirmed. I am angry....I am frightened and I don't know what to

> do. HELP>

>

> Terri (mom, Molly (5) and Maggie (3) have CVID with B Cell

disorder.

>

[Guest guest]

" I am sooooo petrified that Maggie has developed Lymphoma and I cannot get

anyone to talk to me or even check her. I have tried to call her pediatrician

and he is not returning my calls. I have sent e-mails to her immunologist and,

while he addresses some of the things I ask about, he has not answered my

questions about this. I am so frightened for her and I feel like the only thing

I can do is start insisting...What should we be doing???? "

Terri -

I am so sorry that you are going through this. There is nothing worse than

having a sick child and not being able to rely on providers.

In 2002, we tried to get our daughter help and failed. Eventually, we ended

up leaving the state to get her help and it was the best decision we have ever

made. Obviously, this is not always the best answer. If you can work with the

doctors at home and maintain continuity then quality of care is better. BUT, if

you can't get the docs to work with you and you feel that something is wrong

with your child -- and are hitting walls -- then, oy, you have to find people

that will help. Sometimes, disease specific organizations can provide good

contacts, info, etc. Perhaps they can suggest an oncologist/hematologist that

is trustworthy...

I can not advice you about how to investigate the health issues you raise but,

as a mom, I would encourage you to keep fighting for your child. You can't be

too pushy when it comes to protecting your children.

Strength and prayers,

mom to CVIDer

[Guest guest]

Terri-

I am currently in the same sort of situation(different medical concerns) but

feeling like my daughters doctors are not addressing some pretty serious

questions/issues. Please whenever you feel like you are overreacting come to

this group. These ladies remind me quite frequently that only you as your childs

mother/father can properly advocate for your child. No one knows your child like

you do, no one knows her health history like you do, and only you can stand up

for her. These doctors are not perfect...nobody is. So if you feel like

something is wrong get a second opinion. What can it hurt?

~~

cerdaclan <tcerda@...> wrote:

I am having a hard time. Seems quiet in here lately. A few months

ago, it was brought to our attention that enlarged lymphnodes is one

of the problems associated with CVID and Maggie (my 3 year old) has

always had an enlarged tonsil on the right, but I never noticed

anything else. Even on IVIG, she is still getting tired easily and

has circles under her eyes. She is gaining weight just fine...but

also still gets diahrrea easily and very frequently.

This past week, I noticed that she has a very noticeable lymphnode

along the front of her neck...next to her trachea mid neck on the

same side as the inlarged tonsil. She also complains of being cold

alot. Now I am very worried. For months, I have asked the

immunologist and the hematologist if we are sure we should not be

worried about anything else. I am sooooo petrified that Maggie has

developed Lymphoma and I cannot get anyone to talk to me or even

check her. I have tried to call her pediatrician and he is not

returning my calls. I have sent e-mails to her immunologist and,

while he addresses some of the things I ask about, he has not

answered my questions about this. I have brought up her dwindling

white cell count (3.2) and her nutropenia and low lymhocyte count,

but he says he will look at it and never says anything. We cannot

get the lab results from blood work that was ordered 3 months ago.

AND HAVE I SAID I HATE LIVING IN LAS VEGAS?????!~!!! I am so

frightened for her and I feel like the only thing I can do is start

insisting. My understanding is that there should be some sort of a

scan done to take a closer look at her lymphatic system...including

the lymphnodes that are deeper in her abdomen that we may not

notice. What should we be doing???? As all of our children our

special to all of us...it would crush me if my suspicions are

confirmed. I am angry....I am frightened and I don't know what to

do. HELP>

Terri (mom, Molly (5) and Maggie (3) have CVID with B Cell disorder.

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]

Terri,

Please hang in there, and keep hounding the docs for answers and stay

strong........

Marlo

Mom to Chelsea 11 (CVID) Brittany 15, Devin 14

Marlo

Independent Jewelry Consultant

Cookie Lee

818-425-7847

805-584-8251 (fax)

Lymphnodes

I am having a hard time. Seems quiet in here lately. A few months

ago, it was brought to our attention that enlarged lymphnodes is one

of the problems associated with CVID and Maggie (my 3 year old) has

always had an enlarged tonsil on the right, but I never noticed

anything else. Even on IVIG, she is still getting tired easily and

has circles under her eyes. She is gaining weight just fine...but

also still gets diahrrea easily and very frequently.

This past week, I noticed that she has a very noticeable lymphnode

along the front of her neck...next to her trachea mid neck on the

same side as the inlarged tonsil. She also complains of being cold

alot. Now I am very worried. For months, I have asked the

immunologist and the hematologist if we are sure we should not be

worried about anything else. I am sooooo petrified that Maggie has

developed Lymphoma and I cannot get anyone to talk to me or even

check her. I have tried to call her pediatrician and he is not

returning my calls. I have sent e-mails to her immunologist and,

while he addresses some of the things I ask about, he has not

answered my questions about this. I have brought up her dwindling

white cell count (3.2) and her nutropenia and low lymhocyte count,

but he says he will look at it and never says anything. We cannot

get the lab results from blood work that was ordered 3 months ago.

AND HAVE I SAID I HATE LIVING IN LAS VEGAS?????!~!!! I am so

frightened for her and I feel like the only thing I can do is start

insisting. My understanding is that there should be some sort of a

scan done to take a closer look at her lymphatic system...including

the lymphnodes that are deeper in her abdomen that we may not

notice. What should we be doing???? As all of our children our

special to all of us...it would crush me if my suspicions are

confirmed. I am angry....I am frightened and I don't know what to

do. HELP>

Terri (mom, Molly (5) and Maggie (3) have CVID with B Cell disorder.

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 DD has had this huge thing in her upper neck, right at the top, below the

jaw but on the front of the neck. It's only on her right side. When she tips

her head back you can see it, that's how big it is. A few months ago I showed

it to one ped, he didn't say anything. A couple weeks later I showed it to

another in the practice, thinking it was a HUGE lymph node. She said it was two

medium lymph nodes (not large enough to be concerned about any malignancy

issue), but that they can stay enlarged for up to a year after illness.

I recently showed it/them AGAIN to ped #1, just to let him know it was still

there several months later. HE TOLD ME -- get this -- that it is normal

tissue, it's a tonsilar node or similar term -- it's " a sign she's building

immune

tissue " . HUH?

OKAY, here's the part that stuns me. A different ped in his practice told me

this lumpy thing was two enlarged lymph nodes. This ped is feeling the exact

same thing and telling me it's ONE normal node. Who is right? This blows my

mind.

(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]

our non-PID teenager had a similar lump in her neck when she was about

9 or 10. She had it watched by the ped, ultrasound was done and even an

evaluation by a pediatric surgeon. A two rounds of antibiotics cleared it

up before the surgery date rolled around. THey did tell us that she might

be prone to getting these again in the future but none have happened since.

Ursula - mom to Macey (11,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org