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Chest X ray description.
Hi, My daughter has had a swollen lymph node in the neck since November, she has had lethargy and sweats a lot at night. She had a blood test done which showed she was anaemic. We have been referred to the hospital and they prescribed iron and vitamin supplement and anti biotics. They took a xray. There is a "shadow" on the chest xray which they say could be vascular? or a lymph node. They want to repeat the xray again in a month and the referral says - Cervical lymphadenopathy and
CAR in predominant hlium? The lump in the neck is still there so another set of anti biotics has been prescribed.. She is only 3, I am concerned that she has lymphoma and that this is not being taken seriously. Thanks for any responses in advance.
CAR in predominant hlium? The lump in the neck is still there so another set of anti biotics has been prescribed.. She is only 3, I am concerned that she has lymphoma and that this is not being taken seriously. Thanks for any responses in advance.
COMMUNITY LEADER
How about eliminating all dairy for a week? That'd be the next suspect. Plus, you have the advantage of not needing any tests done to see if there is a benefit, because if the tummy pain goes away you can think you are on the right track.
Although tummy pains are common in children, that wouldn't normally be so frequent, would it? I think frequency is more important here than intensity.
Also, did you ask elsewhere to find out what CAR means? You want to know if that might be an artifact.
"lot of tiny red pin pricks. It didn't itch" Not itching makes me think maybe it's not from histamine as we would have expected. Did she have a CBC at that point to eliminate thrombocytopenia and resulting petechia? There was no bruising or bleeding?
Although tummy pains are common in children, that wouldn't normally be so frequent, would it? I think frequency is more important here than intensity.
Also, did you ask elsewhere to find out what CAR means? You want to know if that might be an artifact.
"lot of tiny red pin pricks. It didn't itch" Not itching makes me think maybe it's not from histamine as we would have expected. Did she have a CBC at that point to eliminate thrombocytopenia and resulting petechia? There was no bruising or bleeding?
Hi Ken,
Thank you to you and Mochadelicous for your replies. I understand one of the first blood tests done by our GP back n January was for Celia disease and this must have come back ok, as they have not said anything more about it. There also has been no comment on the shape of the red blood cells.
We have not been away prior to her getting sick and no one else in the family has been poorly just before. No one else has food allergies either.
We hope that we will get the appointment pretty soon so we can discuss these things with them.
I did wonder about the tummy pain, but the Dr doesn't seam overly concerned as she isn't doubled up in pain with it. Its great she isn't getting worse, but as I have said before, she just isn't right.
Time will tell.
Thankyou to you both again. Best wishes Carrie
Thank you to you and Mochadelicous for your replies. I understand one of the first blood tests done by our GP back n January was for Celia disease and this must have come back ok, as they have not said anything more about it. There also has been no comment on the shape of the red blood cells.
We have not been away prior to her getting sick and no one else in the family has been poorly just before. No one else has food allergies either.
We hope that we will get the appointment pretty soon so we can discuss these things with them.
I did wonder about the tummy pain, but the Dr doesn't seam overly concerned as she isn't doubled up in pain with it. Its great she isn't getting worse, but as I have said before, she just isn't right.
Time will tell.
Thankyou to you both again. Best wishes Carrie
COMMUNITY LEADER
Hi, although the anti-gluten craze is mostly hype, in your daughter's case I'd suggest eliminating all gluten for a week and see if the tummy pain eases.
But then, having specific immune activation symptoms such as a swollen node and night sweats doesn't fit with celiac disease, AFAIK.
Still, I wouldn't get the surgical biopsy unless the gut was looked at via endoscopy first. I don't think it is merely a coincidence that iron is absorbed in the same place as she usually feels the ache (proximal small intestine). I also don't believe that adults respond so well and so quickly to iron supplementation (I don't know about children), so that seems like a clue.
The thing that seems mostly ignored, the anemia, is very possibly the key. What is causing that is also causing everything else...
The blood smear was most likely done to try and answer that, but apparently no RBCs were misshapen or you would have said so. Something caused iron malabsorption.
Did she travel or otherwise get exposed to some unusual parasite in food?
She's not eating vegetarian, right?
Was she around anyone who was sick shortly before she herself got sick?
Does anyone in your family have food allergies?
But then, having specific immune activation symptoms such as a swollen node and night sweats doesn't fit with celiac disease, AFAIK.
Still, I wouldn't get the surgical biopsy unless the gut was looked at via endoscopy first. I don't think it is merely a coincidence that iron is absorbed in the same place as she usually feels the ache (proximal small intestine). I also don't believe that adults respond so well and so quickly to iron supplementation (I don't know about children), so that seems like a clue.
The thing that seems mostly ignored, the anemia, is very possibly the key. What is causing that is also causing everything else...
The blood smear was most likely done to try and answer that, but apparently no RBCs were misshapen or you would have said so. Something caused iron malabsorption.
Did she travel or otherwise get exposed to some unusual parasite in food?
She's not eating vegetarian, right?
Was she around anyone who was sick shortly before she herself got sick?
Does anyone in your family have food allergies?
Hi Carrie,
Ugh. I so understand your frustration at this point. I do think it is good news that the lump hasn't grown any larger. However, what about the shadow that was seen on the original chest x-ray? Is her doctor concerned about that?
If you haven't already done so, I'd ask for copies of the radiology and ultrasound reports. It's important to note the size and internal architecture of the lymph nodes if possible. Look for words like "reactive lymph node" or "fatty hilum". These are good phrases to see and suggest a benign diagnosis. Because the neck node hasn't grown in size, it may just be a residual lymph node left behind from a previous infection. Sometimes lymph nodes develop scar tissue inside of them that doesn't allow them to shrink back to normal size. However, because of her night sweats, low grade fevers and overall fatigue that's been going on for so long, I don't blame you for pursuing a biopsy. It's true that young kids don't get lymphoma nearly as often as teens or adults, but they do still get it. At least a biopsy will hopefully take the lymphoma option off the table so you can pursue other diagnostic avenues.
When you meet with the doctor, talk to him about biopsy options. Usually, an excisional biopsy is recommended (where they take out the whole node and biopsy the whole thing). Fine needle biopsy would be less invasive, but it could also be less accurate.
Thanks again for keeping me informed. I know it's a roller coaster ride but keep at it. I predict you will have more definitive answers soon.
Ugh. I so understand your frustration at this point. I do think it is good news that the lump hasn't grown any larger. However, what about the shadow that was seen on the original chest x-ray? Is her doctor concerned about that?
If you haven't already done so, I'd ask for copies of the radiology and ultrasound reports. It's important to note the size and internal architecture of the lymph nodes if possible. Look for words like "reactive lymph node" or "fatty hilum". These are good phrases to see and suggest a benign diagnosis. Because the neck node hasn't grown in size, it may just be a residual lymph node left behind from a previous infection. Sometimes lymph nodes develop scar tissue inside of them that doesn't allow them to shrink back to normal size. However, because of her night sweats, low grade fevers and overall fatigue that's been going on for so long, I don't blame you for pursuing a biopsy. It's true that young kids don't get lymphoma nearly as often as teens or adults, but they do still get it. At least a biopsy will hopefully take the lymphoma option off the table so you can pursue other diagnostic avenues.
When you meet with the doctor, talk to him about biopsy options. Usually, an excisional biopsy is recommended (where they take out the whole node and biopsy the whole thing). Fine needle biopsy would be less invasive, but it could also be less accurate.
Thanks again for keeping me informed. I know it's a roller coaster ride but keep at it. I predict you will have more definitive answers soon.
Hi, I hope that your well. I thought I would bring you up to speed with how things were going. So Laurie had her Ultrasound and the radiologist said" I cant tell you anything definitive apart from yes she has a large lymph node" A biopsy is the only way. So then we had to wait a couple of weeks for a follow up with the Dr. They then met and wanted to do further blood tests to rule out Epstein Barr Virus and TB. These have all come back clear. Lauries Anemia has improved which is great and no longer requiring Iron suppliments. Though her LDH was showing above average, Im not too sure what this means though the Dr wasn't concerned by it.
He has spoken to a oncologist at a childrens hospital 50 miles away and he said its very unlikely it Is Lymphoma- she isn't the right age? And too uncommon in children. But we can do the biopsy if we want.
So they have put the ball in our court- which Im a little upset at as its making us out to be hypocondriact parents. But the more I have understood about lymphoma is that the only way they can categorically say it is not that, is by doing a biopsy. So I think we have made the right decision.
Because this lump has not grown the Dr is still trying to convince me that her neck would be like a bulldog- I did actually challenge him on this and asked him what about indolent types and he was stumped. I am also aware that this sounds like I am convinced it is Lymphoma. Im just petrified that we do not do everything in our powers to get to the bottom of this.
They were not prepared to do a ct scan because of the risk of future malignancies.
So we are now waiting for the appointment with the Maxillofacial department to be in touch and we will take it from there.
Laurie is pretty much the same- yes more energy but still days where she is not happy, still lack energy come late afternoon, sweating at night and not a great appetite. Grazing more than eating. We now know this as a new norm as this has been going on since Nov 13!
I do hope summer is treating you well.
Kind regards
Carrie
He has spoken to a oncologist at a childrens hospital 50 miles away and he said its very unlikely it Is Lymphoma- she isn't the right age? And too uncommon in children. But we can do the biopsy if we want.
So they have put the ball in our court- which Im a little upset at as its making us out to be hypocondriact parents. But the more I have understood about lymphoma is that the only way they can categorically say it is not that, is by doing a biopsy. So I think we have made the right decision.
Because this lump has not grown the Dr is still trying to convince me that her neck would be like a bulldog- I did actually challenge him on this and asked him what about indolent types and he was stumped. I am also aware that this sounds like I am convinced it is Lymphoma. Im just petrified that we do not do everything in our powers to get to the bottom of this.
They were not prepared to do a ct scan because of the risk of future malignancies.
So we are now waiting for the appointment with the Maxillofacial department to be in touch and we will take it from there.
Laurie is pretty much the same- yes more energy but still days where she is not happy, still lack energy come late afternoon, sweating at night and not a great appetite. Grazing more than eating. We now know this as a new norm as this has been going on since Nov 13!
I do hope summer is treating you well.
Kind regards
Carrie
Hi Carrie,
Thanks for the update on Laurie. It's good to hear that the x-ray was clear and her anemia has improved. I hope the ultrasound will bring good news as well.
Sorry to hear you are having a rough time communicating with the hospital. It really shouldn't be like that but unfortunately, from my own personal experience, it is this way with many health care professionals. I think some patients who tend to be "overly worried" and make mounds out of molehills kind of ruin it for other patients who have legitimate health concerns. Some doctors and nurses can easily become hardened and too dismissive.
As a patient and a mother myself, keep up the good work of advocating for your daughter. Please keep me posted on her ultrasound results if you get a chance.
Thanks for the update on Laurie. It's good to hear that the x-ray was clear and her anemia has improved. I hope the ultrasound will bring good news as well.
Sorry to hear you are having a rough time communicating with the hospital. It really shouldn't be like that but unfortunately, from my own personal experience, it is this way with many health care professionals. I think some patients who tend to be "overly worried" and make mounds out of molehills kind of ruin it for other patients who have legitimate health concerns. Some doctors and nurses can easily become hardened and too dismissive.
As a patient and a mother myself, keep up the good work of advocating for your daughter. Please keep me posted on her ultrasound results if you get a chance.
Hi, I hope that your well. We have Lauries xray back and this was clear and the anemia has improved with the iron supplement.
She stil has this lump though so they are referring her for a ultra sound. This will be in another couple of weeks. Laurie is the same as last time,No change, no worse which is great, but not still 100%.
I just thought Id let you know where we are at. Im getting quiet despondent with the hospital as they make you feel like you are being a nuisance. They call to say that they will call with a set day to give you results then don't, then they give a air of annoyance on the phone when you chase them up!
Feel in a very frustrating place at the moment.
Best wishes
Carrie
She stil has this lump though so they are referring her for a ultra sound. This will be in another couple of weeks. Laurie is the same as last time,No change, no worse which is great, but not still 100%.
I just thought Id let you know where we are at. Im getting quiet despondent with the hospital as they make you feel like you are being a nuisance. They call to say that they will call with a set day to give you results then don't, then they give a air of annoyance on the phone when you chase them up!
Feel in a very frustrating place at the moment.
Best wishes
Carrie
Hi Carrie,
Well I have to agree with you about lumps that look like a bulldog (funny analogy by the way). I do believe that there may be some faster growing sub-types of lymphoma that tend to have very large lymph nodes that show up all of a sudden, but not all lymphomas are like that, especially the slow growing (indolent) kind. I had an indolent lymphoma, and my largest lump was about the size of a quarter and I had no other symptoms other than it was slowly getting bigger. Also, keep in mind that we have hundreds of lymph nodes throughout the body, many of them are deep inside where we wouldn't be able to tell if they are enlarged without a scan to see them.
I'm a mother myself, and I can't even imagine how scary this is for you. I applaud you for staying with it and being her advocate. You know her better than any doctor, and if she is "not herself", then it is your responsibility to investigate why. It is my opinion that most general doctors (family physicians, pediatricians, etc.) aren't as knowledgeable as a lymphoma specialist and have a very basic understanding of lymphoma. It's a very complex disease so I can understand why.
I think if I were you I would push for a biopsy or at least a CT scan if the blood work and x-ray come back inconclusive. Good luck and please keep me posted once you get the results.
Well I have to agree with you about lumps that look like a bulldog (funny analogy by the way). I do believe that there may be some faster growing sub-types of lymphoma that tend to have very large lymph nodes that show up all of a sudden, but not all lymphomas are like that, especially the slow growing (indolent) kind. I had an indolent lymphoma, and my largest lump was about the size of a quarter and I had no other symptoms other than it was slowly getting bigger. Also, keep in mind that we have hundreds of lymph nodes throughout the body, many of them are deep inside where we wouldn't be able to tell if they are enlarged without a scan to see them.
I'm a mother myself, and I can't even imagine how scary this is for you. I applaud you for staying with it and being her advocate. You know her better than any doctor, and if she is "not herself", then it is your responsibility to investigate why. It is my opinion that most general doctors (family physicians, pediatricians, etc.) aren't as knowledgeable as a lymphoma specialist and have a very basic understanding of lymphoma. It's a very complex disease so I can understand why.
I think if I were you I would push for a biopsy or at least a CT scan if the blood work and x-ray come back inconclusive. Good luck and please keep me posted once you get the results.
Hi Mochadelicous,
I appreciate your reply. Laurie's rash was just on the top part of her body. Mainly on the front of her chest and followed her rib line and the top of her back and neck. It was like a lot of tiny red pin pricks. It didn't itch, she has had itching at the start of all this but she hasn't complained of anything like that for a few months.
She still complains of tummy ache in the same spot always above her tummy button, This has been there intermittently from the beginning.
The Dr really didn't seam overly concerned about the lump but he couldn't answer why it was still there and why it hadn't gone away with Anti biotics and why it would be there with no other signs of illness like tonsilitus and flu or general colds. The one thing that did slightly frustrate me was, he was making out that people with Lymphoma had a HUGE neck that sticks out like a bulldog. I know that this is rubbish as my friends husband had Lymphoma and it was found by the Dr doing a routine check up. (They were is the US) No Bulldog neck, but a raised gland. But I don't want to sound obtuse to someone who has FAR more medical experience than I do in my little toe!
Her Lump is still there and when she looks up you can see it protruding out.
They have thrown into conversation the possibility of a CT scan, no mention of a PET scan. I think they are just waiting to see what the results of the bloods are and the xray. Not sure how long the blood tests take for the results to come back, but he said he would call if he had to.
Laurie is just" not right", which I know sounds very vague, but one minute she is fine, The next she is very cranky and weepy and happy to sit snuggling on the sofa. She doesn't really get a temperature but she has been consistently 35.5 and at night when she is sweaty she is not high temperature.
I just want to get her right, make sure that she is happy and healthy. Its so hard when you are being an advocate for her without wanting to sound like you are a hypochondriac or a neurotic mother on her behalf.
I appreciate your reply, and I also am aware that you have very much first hand experience of this so that makes it even more valuable. A big thank you.
Best wishes Carrie
I appreciate your reply. Laurie's rash was just on the top part of her body. Mainly on the front of her chest and followed her rib line and the top of her back and neck. It was like a lot of tiny red pin pricks. It didn't itch, she has had itching at the start of all this but she hasn't complained of anything like that for a few months.
She still complains of tummy ache in the same spot always above her tummy button, This has been there intermittently from the beginning.
The Dr really didn't seam overly concerned about the lump but he couldn't answer why it was still there and why it hadn't gone away with Anti biotics and why it would be there with no other signs of illness like tonsilitus and flu or general colds. The one thing that did slightly frustrate me was, he was making out that people with Lymphoma had a HUGE neck that sticks out like a bulldog. I know that this is rubbish as my friends husband had Lymphoma and it was found by the Dr doing a routine check up. (They were is the US) No Bulldog neck, but a raised gland. But I don't want to sound obtuse to someone who has FAR more medical experience than I do in my little toe!
Her Lump is still there and when she looks up you can see it protruding out.
They have thrown into conversation the possibility of a CT scan, no mention of a PET scan. I think they are just waiting to see what the results of the bloods are and the xray. Not sure how long the blood tests take for the results to come back, but he said he would call if he had to.
Laurie is just" not right", which I know sounds very vague, but one minute she is fine, The next she is very cranky and weepy and happy to sit snuggling on the sofa. She doesn't really get a temperature but she has been consistently 35.5 and at night when she is sweaty she is not high temperature.
I just want to get her right, make sure that she is happy and healthy. Its so hard when you are being an advocate for her without wanting to sound like you are a hypochondriac or a neurotic mother on her behalf.
I appreciate your reply, and I also am aware that you have very much first hand experience of this so that makes it even more valuable. A big thank you.
Best wishes Carrie
Hi Grimace, thanks for the update on your daughter. May I ask where the rash was on her body? Was it all over or localized to one area? Was it making her itch? I ask because some people (although I think rare) who have lymphoma present with an all over itchiness. Keep in mind though that there are many other causes of itchiness.
Diagnosis can take such a long time and it can be so frustrating. I'm guessing that they would have to use anesthesia to put your daughter to sleep if they decide to do a biopsy. There is always a certain amount of risk when putting someone under anesthesia, so the doctor is probably weighing the risk. Has he considered doing a CAT or PET scan? It would probably be difficult to do with a 3 year old, but surely they've done it before.
Stay strong and keep digging until you get answers. I hope to hear from you again after you get the results of the x-ray and blood test.
Diagnosis can take such a long time and it can be so frustrating. I'm guessing that they would have to use anesthesia to put your daughter to sleep if they decide to do a biopsy. There is always a certain amount of risk when putting someone under anesthesia, so the doctor is probably weighing the risk. Has he considered doing a CAT or PET scan? It would probably be difficult to do with a 3 year old, but surely they've done it before.
Stay strong and keep digging until you get answers. I hope to hear from you again after you get the results of the x-ray and blood test.
Hello Mochadelicous, I hope that you are well. I just thought I would bring you up to date with my little girls progress. We are still in the waiting game. We have been back at the hospital this week for a review as Laurie had a funny rash last week. This lasted less that 48 hours so they suspected this was viral, but has prompted the Dr to do another Blood test. This time for a Blood Film. The lump is still present after 2 weeks of anti biotics. It hasn't grown but not got smaller. She is still sweating lots at night. So the Dr is thinking about talking to the Maxollfacial people and see what they think and maybe do a biopsy, but he isn't concerned about the lump? And this will all depend on the blood results and the xray that is being redone in 2 weeks. Bless her she is definatly more energised after the Iron, but still is very tiered by mid afternoon and wont walk very far as she gets tiered.
She is keeping us all going as she is non the wiser on what the ? all could entail. I am finding the uncertainty a little hard to cope with at the moment.
The Dr keeps saying Im not concerned...but will just do this, or talk to them? So I may be reading too much into the but bit. As I think you have said things can take a while. And I have to learn to be a bit more patient.
I do hope that your good and enjoying spring!
She is keeping us all going as she is non the wiser on what the ? all could entail. I am finding the uncertainty a little hard to cope with at the moment.
The Dr keeps saying Im not concerned...but will just do this, or talk to them? So I may be reading too much into the but bit. As I think you have said things can take a while. And I have to learn to be a bit more patient.
I do hope that your good and enjoying spring!
Mochadelicious, many thanks for taking the time to reply. I appreciate it. I think I am just realising that I will have to patience and positivity.
I hope that your are well and once again thank you.
I hope that your are well and once again thank you.
Yes, your concern does make sense. Would waiting a month make a difference? Well, it probably would depend on what type of lymphoma she had (there are many sub types), where it is in her body and how fast it's growing. A month seems a little long to wait and see if an infection gets better, but it probably won't make a huge difference if it turns out to be something worse. When I was diagnosed with lymphoma, the question of infection was on the table too. They gave me antibiotics and two weeks later I had a follow up appointment with my doctor. At that point he did a needle punch biopsy because my lump didn't go away (actually it got a little bigger). It took a few more weeks after my biopsy to get the results and then another month or so to actually start treatment. It's amazing how long it can take to get diagnosed, but it's very important that they get the diagnosis right as they formulate the treatment plan on what type of lymphoma you have.
Hi, Thanks very much for your response. Assuming that it is an infection, the xray should read differently I suppose. Would the wait of a month have any negative effect if it was lymphoma. Naturally I am very much hoping that it is infection and nothing serious, but I am also concerned that a month is a long time to wait if it turned out it wasn't infection. (does that make sense?)
I appreciate your time and knowledge on this subject.
I appreciate your time and knowledge on this subject.
Hello and welcome. It sounds like they are taking a conservative approach since doing a biopsy is probably something they don't want to jump into right away, especially with a 3 year old. I'm not exactly sure what CAR in predominant hilium means, but the prescription of antibiotics tells me they probably think there is a possibility of this being a lymph node enlarged by infection, which would be good news compared to the alternative. However, if you or the doctors don't see any improvement with the antibiotics, biopsy will probably be the next step. X-ray and scans may help the doctors decide if a biopsy is warranted, but only a biopsy of the affected lymph node can definitively diagnose lymphoma.
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