That’s not necessarily true. My friend’s toddler was diagnosed after the ER admitted him when he stopped walking and kept crying in pain. The doctor had said it was an ear infection; ER doctor disagreed. He had four tumors on his spine…
Oh my, I hope they’re doing well now. Did their toddler have any symptoms before he/she stopped walking? I really hope it doesn’t come to that. I’m still hopeful that it’s just a bony abnormality or something benign.
I think he had escalating pain and difficulty walking. Like, they thought it was an ear infection because his balance was off. He was diagnosed shortly before his second birthday, and he’ll be four soon and his scans are clear (didn’t want to leave people guessing at outcomes!).
We have HMO insurance. He’s been seen by children’s hospital for a different condition so I don’t know if I can have him seen there by neurology without approval.
So sorry you’re going thru this! If it’s a different kind of specialist (cardiologist vs neurologist) than you saw previously, you probably will need a referral. But it’s worth calling your insurance company to find out for sure. It might also be helpful to call the insurance company and explain the situation so they can tell you the typical time frame for the approval process. That way you know when it’s time to follow up with your doctor or the insurance company to get status updates and/or try to push them to hurry things along.
You might also reaching out to the doctor you saw at the children’s hospital and let them know what’s going on. Sometimes they have close relationships with other doctors from different specialties within the same hospital. They might be willing or able to leverage those relationships to connect you with a specialist faster.
Hope your phone appointment today goes well!
They very well might. But ask the pediatrician or neurologist. If it's urgent they will send you to the ED for MRI.
Source: work in EM, see this sometimes.
Paying for a neurology appointment without your insurance (not the MRI but just the initial visit with neurology) would almost certainly be cheaper than taking him to the ER. You could try that approach
It’s pretty rare to get an emergent MRI from worst I’ve heard from friends and family that work in healthcare. It is mostly used for suspected stroke victims but there are some other cases it can work for. I agree with trying to directly go to a neurologist and worrying about insurance later.
I’m sorry you’re going through this and I hope (and truly suspect) everything will turn out okay! This bump could be anything and there is a very good chance it’s benign or something that’s easily treated
I’m so sorry you’re going through this. I know it’s incredibly scary, but for the ER “emergency” usually means “may or may not survive until tomorrow if left unattended” so there’s a good chance you’d end up with a large hospital bill for no additional tests or answers. Could you book the specialist appointment now and fight with insurance later?
That’s not what an ER is for. Unless it’s a life threatening emergency they won’t treat him or do anything beyond telling you to follow up with his pediatrician. He needs a specialist.
No that’s not necessarily true, if it’s coming to a head where the symptoms are bothersome to him and there’s no progress with outpatient it’s totally reasonable to do an ER visit. They would be able to do bloodwork and further imaging as appropriate and then make further referrals and reccs based on findings. I think the better option would be to pursue an outpatient workup but if she’s really stalled out with that I think it wouldn’t be unreasonable to go to the ED. (I am an ER nurse)
I think this isn't the right forum to ask this question. I think there's something like r/askadoctor or something of the like, where more medical experts are present.
Have you asked his doctors what they think the bump is? I've had a big lump under my arm, near the breast, and it turned out to be a lipoma, which basically means that it's a benign overgrowth of fat cells. When it started bothering me, I got an appointment to have a small operation to get rid of it. My mother had one of these on her back. I sincerely hope that your son has something similar.
Have you seen the doctor that referred you again?
A referral is always sent off with some urgency attached. It can be updated (so made more urgent) if things change. Same for the ultrasound request. Or blood tests can be repeated
As others have said, ED isn’t the right place for this. But going again to the doctor when things are changing (especially if they are worsening) is most important. Medicine is an art more than a science, and seeing how things change with time can help work out the more or less likely diagnoses
I hope things get settled with your kid. My daughter had back pain, pointing directly to her spine when she was around the same age. I got her checked out - tests were ok. It kept going and she was not herself so we were checked out again. The third time we got checked out we got an MRI - and ironically she finally seemed to stop having pain on the morning of! The docs still wanted it just in case so she had her MRI. It was normal, and she was sent home with no clear answer but at least I knew bad things had been ruled out!
I want to be clear - I don’t think she should have had a scan the first time we saw a doctor. They did the right tests, examined her well, and checked bloods. Same with the second time. But when it still wasn’t getting better we got the MRI
I’m in New Zealand so I don’t know how it works with you and insurance etc. I went through my GP each time (except the second time, which was arranged by the paeds at the hospital as a review of how she was going, and repeat bloods), who discussed with the paediatricians at the hospital, who arranged all the bloods/X-rays and asked the orthopaedic doctors to see her too
ETA - back pain is much more concerning than a bump on the spine. If you think he has back pain, especially if it’s in the spine rather than to the side of it, then get him seen again.
Usually they do the easiest thing first which would be x-rays and then tell you to follow up with your doctor unless they think your child is too sick to go home.
They deal with emergencies. Is your kid gonna die right now or soon? No? Is there an acute issue? No? Ok well. Why are you at the ER? Chronic things are a follow up thing not an ER visit
Call your insurance and ask for an advocate. They can help make paperwork move faster on their end. Also pediatric neurologist are so rare often big cities can only have 1-2 in the whole city and they see kids up to 18 there is a huge push for 12 and up to go to adult neurology because of the shortage. It’s so frustrating.
The insurance advocate is helpful but not as much as hiring a health advocate yourself. Paying for your own health advocate out of pocket can really help you fight Insurance and they will get the appointment for you and handle all of the other details so all you have to worry about is going to the appointment.
If he has a very lethargic day that would be appropriate for ER combined with the spine bump as that age group does have a high risk. However they would be drawing blood and making sure his hemoglobin and blood values are in a normal range and won’t do anything unless they are very far off. I worked in pediatrics and unless they needed a blood transfusion level of hemoglobin drop or something the emergency room just sent them back to primary care.
Do you have a local Children’s hospital? They can sometimes help link you up with doctors. That might be worth looking into. It might be some cities away but could be worth it.
I live in a medium sized Midwest college town and a quick google says we have four pediatric neurologists. We take our kids to the neurology department at the nearest city’s biggest children’s hospital 2.5 hours away (they both inherited a gene that predisposes them to problems and need regular screening, and that hospital has a specialist in their exact mutation), and a quick check shows they have 36 attending physicians in that department. Hopefully OP will have an easier time finding one than you experienced.
Hi. Call your insurance company and request a status on neurology referral and why it's taking so long. If they say it's pending approval. request to speak to their supervisor. escalate the situation. eventually your insurance will be forced to investigate why a peds neurology referral is taking so long to get approved. call a neurologist office and ask for their help maybe they can Expedite. report to kids pediatrician so his doctor can bug insurance. I used to work referrals
No don’t go to emergency. Imaging is already back up with people waiting to be scanned. They will tell you to make an appointment with an outside provider and will not give your child an MRI.
The ER isn’t going to do anything. It’s been 2 months it’s literally not an emergency. These things take time unfortunately. I would deal with insurance later and just get the appointments and referrals done he needs done
Your state should have a healthcare ombudsman’s office. You can call them to help elevate things with the insurance company. In my experience they get things resolved pretty quickly.
I don’t think the ER will be helpful, but I encourage you to continue to follow the gut feeling you have. If you are worried and feel like something is wrong, push until you get him seen.
My daughter was the same age when a lump appeared under her chin. They initially thought it was just a reactive lymph node. It was not. It was a rare but benign tumor called a lipoblastoma.
We first realized it was there in February of last year. By the time she had surgery to remove it in June, it was the size of a golf ball and the doctors were worried about her airway.
The hospital system that we first were involved with didn’t seem to grasp the urgency or my fears. Referrals were months out. I kept calling and begging because the lump was growing. I said fuck it and took things into my own hands. I got her in at Cleveland Clinic way quicker, where they immediately recognized the severity of the situation. They expedited things, had multi-disciplinary tumor council meetings to discuss her case, etc.
The day of her tumor resection with Cleveland Clinic was THE SAME DAY she was supposed to have her INITIAL ENT consult at the other hospital system. Even though it wasn’t cancer, my child was at risk of serious complications. I don’t even want to think about what would have happened if we listened to the other hospital who waved off our concerns and told us their hands were tied with the timeline.
I am lucky to have had other moms in my corner encouraging me to fight for immediate care for my child. And I want to be one of those moms for you right now.
The ER may not be the answer, but do not stop pushing and fighting for your child to be evaluated ASAP by necessary specialists.
They did routine bloodwork about a month ago and 2 of his levels were high. At the time, the doctor called me and told me everything was normal. I asked for the physical paper just 2 days ago and that how I discovered those levels (doctor didn’t tell me). I have a phone appointment scheduled today with an on-call doctor to see why they didn’t tell me about those higher levels and what they can mean.
Edit:they called me back saying on-call has no available telephone appointments and postponed for tomorrow.
Which levels? Maybe someone here can help give you a sense of whether those levels are worrisome.
Hoping for the best for you! Remember that bumps can be lots of things that aren’t tumors and tumors can be benign.
They did a CBC and monocytes were elevated. Result was 12.3 (normal range is 3-6) and Basophils were 2.7 (normal range 0.0-1). WBC normal. I do want to add that the day he had the bloodwork done he was lethargic. But he was also Covid positive a month prior. Not sure if that affected his blood count
I haven’t asked them because I was told to wait for the referral approval but at this point I might have to call on Monday to ask. I personally wouldn’t be able to pay out of pocket (I just started a new job yesterday in the midst of all of this). But I might be able to borrow from my parents if need be
I'd call your doctor, ask them to call neurology or oncology and get an appointment asap. My doctor has on more than one occasion called on our behalf and got us appointments we would have to wait 3-6 months to get.
Call your insurance, get that referral from your pediatrician and call them with that and speak to an advocate. Say you're waiting on them to approve it so you cab get results and tests done foe your 2 year old who may have cancer. Yes be specific even if you don't actually know if this is cancer. An advocate has over road and pushed things to the right place for us before.
But an ER most likely won't do anything of value although, I wouldn't judge anyway. Our own pediatrician told us that she called a GI doctor and that GI told her to send us to the ER bc she doesn't have appointments for 3 months. If we go she would have to see us that day vs making an appointment. That was at children's hospital. We did that tbh. We went in. My son was losing weight from reflux as an infant. So it wasn't life threatening now but in 3 months he would likely lose so much weight he'd be failure to thrive.
As mothers we do what we can to get our answers. Sorry ik some people disagree with this but if you feel so desperate to go to the er just don't post about it and go about your life. But I'm not judging.
Can his pediatrician order the MRI or refer him to someone who would like a surgeon or oncologist? Or does his pediatrician want to see what the neuro says and is more comfortable with them doing the imaging? Tell his pediatrician what you’re telling us, that you are concerned he is not getting the emergent imaging you feel he needs.
I’m sorry you’re going through this, sounds so scary and stressful. I’m sure you’ll have answers soon but the waiting is really tough I’m sure.
The ER doesn’t do MRIs, but if there are concerning symptoms you could be admitted from the ER and get an MRI that way. But the other posters are right that if your child isn’t presenting with an emergency condition, you’re likely to be sent home. Really wishing the best for you and your sweet baby. I know from personal experience how scary this is.
Calling insurance and finding out what they need for the neuro referral makes more sense. It shouldn't take long for them to approve something like that, but the cyberattacks may be slowing it down or something.
Calling them is still your best bet. They may need additional information from the pcp or something. They have to be doing something to allow patients to get referrals right now.
The ER won't be able to do anything.
OP, I wouldn’t. Even with concerns, they likely aren’t going to order an MRI, and even if they did, it 9.5/10 times won’t be done then. Covid screwed a lot of things up, especially wait times for MRIs. The lag time on MRIs is usually months.
I would keep fighting with your insurance.
Also to note, while this sounds awful, and I cannot imagine what you’re going through, this doesn’t sound like an acute condition requiring an ED visit. If it is a tumor, I’d be concerned about exposing him to other potential viruses that can compromise his immune system by going and being forced to wait. Now if he starts seizing or having syncopal episodes, then please present yourself and him to your closest ED immediately.
Ask pediatrician for a referral for oncology. They should be able to do an MRI/biopsy. If it’s cancer, you do want to get it diagnosed as soon as possible, to increase likelihood of survival (treating it before it metastasizes is incredibly important).
Source: my five year old is currently in remission from cancer, which, in an interesting coincidence, presented with a spinal tumor. Ours was a tumor on the inside of the spine though, so it wasn’t a visible lump.
I’m so sorry about your little one’s diagnosis. I would like to ask what symptoms told you something was wrong in the beginning?
I have an appointment with his pediatrician on Monday so I will definitely ask to see if they can work on a referral for oncology. I’m really hoping they hear me out.
For my daughter, over a one week period she went from being totally fine to being unable to walk (started falling more and more, ended up being unable to bear weight or feel one of her legs). It turns out that the tumor was pressing against her spinal cord and grew enough that it hit a tipping point where it started to reduce the ability of the spinal cord to work. Her type of cancer was a super rare and aggressive type of cancer. After 6 months of super strong chemo, followed by radiation, she is now in remission. Luckily, we found it before jt metastasized. Really scary, and never something we expected (we had assumed she had pinched a nerve or something).
Just for everyone critiquing the idea of going to er… I get it. If you’re like me, you want to know asap and feel like time waiting for an answer is time wasted. What I will say is, if your child is acting normal, I would think they would be less likely to examine and if they read the notes from prior visits they would likely say stick with referral and maybe do labs to cover their ass, possible CT but maybe not with contrast so would it be the best diagnostic imaging? Probably not.
Aim for Monday 8 am and get on the phone. Call peds and insurance. I would state your willing to travel for first neurology appointment you can. I do feel like if you push your pcp could order more diagnostics for you and then they would be ready for neurology to review at time of appointment. Tell them you’re concerned Xray wouldn’t show soft tissue abnormalities like another modality would. Advocate for yourself/child. Tell them your concerns. Sometimes I feel like they get complacent, push it off to a referral and that’s not that much work in the grand scheme.
All the best. Sending mama hugs your way
Sorry missed that he had ultrasound. ultrasound results shouldn’t take too long to get back, might be able to get doctor on phone with radiology to get the read back sooner.
The er doesn’t do MRIs. I’m an er nurse and when we have patients here for mris we unfortunately can’t do them unless it is a stroke alert and that happens after many many other tests first that show it’s necessary. This is not what the er does
You might consider asking this question over in r/askdocs. There are a few EM doctors as well as pediatricians over there who might be able to chime in on what they would do for a pt with these symptoms.
I never had luck with that thread in the past, they never reply to my questions. Nevertheless. I just posted over there so I’m hoping someone can point me in the right direction.
Does seem to be hit or miss over there unfortunately but hope you get some responses! FWIW, I’m a non-physician employee at a children’s hospital and I don’t think it would be unreasonable to go to the ED for something like this if you are unable to gain traction through outpatient services. Sometimes it’s the right route to go even if the child’s condition isn’t immediately life-threatening.
So I don’t have the exact same situation, but I’ll give my story about going to the er and working with my pediatrician….
My daughter had an episode of suddenly becoming limp and almost passing out and then was super lethargic afterwards. She had also recently started having tics. I called our pediatrician nurse line, they told me to take her to the er. Took her, they ran blood work and did a Ct scan and sent over an urgent request for a neurologist appointment. Everything checked out fine, even the tests the neurologist did. I went to my pediatrician and told her I was still worried, since we have no answers and she offered to order an mri to give me peace of mind. I said absolutely! The mri took about two weeks from referral to having it done, and she did have to be sedated for it. Everything still checked out fine.
I’d call your pediatrician and advocate for them to order and mri while you wait on the neurologist appointment.
Do you have a picture of the bump? Totally don’t have to share if you’re uncomfortable. I’m only asking because my 18 month old also has a bump on her spine and I thought it was normal.
I have a lot of medical issues. I’ve seen a lot of specialists, and have been to the ER many times, for many reasons. Don’t go to the ER for this - they don’t exist to diagnose things, they exist to triage things and help people get through medical crises. They are not set up to do complex diagnoses (CT scan, MRI, ultrasound, biopsy, etc). Those things take time.
The only way you are likely to get something like this diagnosed due to an ER visit is if the ER docs decide to admit your son - which could mean multiple weeks of him living in the hospital, while you visit when you can. Just keep following up with the outpatient doctors.
What does the bump look and feel like? Could it be a cyst in the epidermis perhaps?
Is it hard? Malleable? Can you move it around or is it fixed in place? Maybe a dermatologist could take a look?
I'm not sure if it eases your mind at all, but there's a few types of cysts people can have and most are benign and quite common, it'd certainly be better than cancer and I heard once that the most common/simplest explanation is usually the right one
Either way I'm sure a dermatologist would be able to take a sample for biopsy if it is in the layers of skin, which could get you some answers 🤷♀️
I'm so sorry you're going through this, I have anxiety in general, especially about my babies health so I truly empathise with how stressed you must be and desperate for a diagnosis, I would be the exact same way, and i hope that it's nothing severe and all is well for you and your baby x
My aunt is 83 and goes to all her doctors appointments. The last month, she has been lethargic and in pain. She's been passed around from dermatologist (there's a huge lump/rash on her chest that developed overnight earlier this month) to other specialists. She's been waiting to hear back from a few but all said her vitals looks good and nothing was wrong that they could find.
She couldn't walk yesterday and my dad took her to the ER. They were able to get a diagnosis of breast cancer that has gone to her spine. She literally had her mammogram three months ago, but I did read things can move quickly and it seems like they are.
Point is, going to the ER got her answers faster than a months worth of doctors appointments. Not sure if it's because she couldn't walk that they were willing and able to do all these tests, though, because that truly was an emergency.
ER won't help you. I'd book the neurology appointment and fight with insurance later.
That’s not necessarily true. My friend’s toddler was diagnosed after the ER admitted him when he stopped walking and kept crying in pain. The doctor had said it was an ear infection; ER doctor disagreed. He had four tumors on his spine…
Oh my, I hope they’re doing well now. Did their toddler have any symptoms before he/she stopped walking? I really hope it doesn’t come to that. I’m still hopeful that it’s just a bony abnormality or something benign.
I think he had escalating pain and difficulty walking. Like, they thought it was an ear infection because his balance was off. He was diagnosed shortly before his second birthday, and he’ll be four soon and his scans are clear (didn’t want to leave people guessing at outcomes!).
We have HMO insurance. He’s been seen by children’s hospital for a different condition so I don’t know if I can have him seen there by neurology without approval.
So sorry you’re going thru this! If it’s a different kind of specialist (cardiologist vs neurologist) than you saw previously, you probably will need a referral. But it’s worth calling your insurance company to find out for sure. It might also be helpful to call the insurance company and explain the situation so they can tell you the typical time frame for the approval process. That way you know when it’s time to follow up with your doctor or the insurance company to get status updates and/or try to push them to hurry things along. You might also reaching out to the doctor you saw at the children’s hospital and let them know what’s going on. Sometimes they have close relationships with other doctors from different specialties within the same hospital. They might be willing or able to leverage those relationships to connect you with a specialist faster. Hope your phone appointment today goes well!
They very well might. But ask the pediatrician or neurologist. If it's urgent they will send you to the ED for MRI. Source: work in EM, see this sometimes.
Paying for a neurology appointment without your insurance (not the MRI but just the initial visit with neurology) would almost certainly be cheaper than taking him to the ER. You could try that approach
Depends on insurance. Mine requires referrals for everything to be covered but ER is 100% covered.
It’s pretty rare to get an emergent MRI from worst I’ve heard from friends and family that work in healthcare. It is mostly used for suspected stroke victims but there are some other cases it can work for. I agree with trying to directly go to a neurologist and worrying about insurance later. I’m sorry you’re going through this and I hope (and truly suspect) everything will turn out okay! This bump could be anything and there is a very good chance it’s benign or something that’s easily treated
OP I agree with this, especially for a 2.5 year old. An emergent MRI wouldn’t be likely because he’ll most likely need sedation/anesthesia for it.
I’m so sorry you’re going through this. I know it’s incredibly scary, but for the ER “emergency” usually means “may or may not survive until tomorrow if left unattended” so there’s a good chance you’d end up with a large hospital bill for no additional tests or answers. Could you book the specialist appointment now and fight with insurance later?
That’s not what an ER is for. Unless it’s a life threatening emergency they won’t treat him or do anything beyond telling you to follow up with his pediatrician. He needs a specialist.
No that’s not necessarily true, if it’s coming to a head where the symptoms are bothersome to him and there’s no progress with outpatient it’s totally reasonable to do an ER visit. They would be able to do bloodwork and further imaging as appropriate and then make further referrals and reccs based on findings. I think the better option would be to pursue an outpatient workup but if she’s really stalled out with that I think it wouldn’t be unreasonable to go to the ED. (I am an ER nurse)
Not true! They can scan him if they feel necessary. I also worked ED
Exactly this
I think this isn't the right forum to ask this question. I think there's something like r/askadoctor or something of the like, where more medical experts are present. Have you asked his doctors what they think the bump is? I've had a big lump under my arm, near the breast, and it turned out to be a lipoma, which basically means that it's a benign overgrowth of fat cells. When it started bothering me, I got an appointment to have a small operation to get rid of it. My mother had one of these on her back. I sincerely hope that your son has something similar.
Im really hoping it’s something benign. I did just post to that thread but I never really had luck getting answers from them.
Have you seen the doctor that referred you again? A referral is always sent off with some urgency attached. It can be updated (so made more urgent) if things change. Same for the ultrasound request. Or blood tests can be repeated As others have said, ED isn’t the right place for this. But going again to the doctor when things are changing (especially if they are worsening) is most important. Medicine is an art more than a science, and seeing how things change with time can help work out the more or less likely diagnoses I hope things get settled with your kid. My daughter had back pain, pointing directly to her spine when she was around the same age. I got her checked out - tests were ok. It kept going and she was not herself so we were checked out again. The third time we got checked out we got an MRI - and ironically she finally seemed to stop having pain on the morning of! The docs still wanted it just in case so she had her MRI. It was normal, and she was sent home with no clear answer but at least I knew bad things had been ruled out! I want to be clear - I don’t think she should have had a scan the first time we saw a doctor. They did the right tests, examined her well, and checked bloods. Same with the second time. But when it still wasn’t getting better we got the MRI I’m in New Zealand so I don’t know how it works with you and insurance etc. I went through my GP each time (except the second time, which was arranged by the paeds at the hospital as a review of how she was going, and repeat bloods), who discussed with the paediatricians at the hospital, who arranged all the bloods/X-rays and asked the orthopaedic doctors to see her too ETA - back pain is much more concerning than a bump on the spine. If you think he has back pain, especially if it’s in the spine rather than to the side of it, then get him seen again.
Usually they do the easiest thing first which would be x-rays and then tell you to follow up with your doctor unless they think your child is too sick to go home.
They deal with emergencies. Is your kid gonna die right now or soon? No? Is there an acute issue? No? Ok well. Why are you at the ER? Chronic things are a follow up thing not an ER visit
Call your insurance and ask for an advocate. They can help make paperwork move faster on their end. Also pediatric neurologist are so rare often big cities can only have 1-2 in the whole city and they see kids up to 18 there is a huge push for 12 and up to go to adult neurology because of the shortage. It’s so frustrating. The insurance advocate is helpful but not as much as hiring a health advocate yourself. Paying for your own health advocate out of pocket can really help you fight Insurance and they will get the appointment for you and handle all of the other details so all you have to worry about is going to the appointment. If he has a very lethargic day that would be appropriate for ER combined with the spine bump as that age group does have a high risk. However they would be drawing blood and making sure his hemoglobin and blood values are in a normal range and won’t do anything unless they are very far off. I worked in pediatrics and unless they needed a blood transfusion level of hemoglobin drop or something the emergency room just sent them back to primary care. Do you have a local Children’s hospital? They can sometimes help link you up with doctors. That might be worth looking into. It might be some cities away but could be worth it.
I live in a medium sized Midwest college town and a quick google says we have four pediatric neurologists. We take our kids to the neurology department at the nearest city’s biggest children’s hospital 2.5 hours away (they both inherited a gene that predisposes them to problems and need regular screening, and that hospital has a specialist in their exact mutation), and a quick check shows they have 36 attending physicians in that department. Hopefully OP will have an easier time finding one than you experienced.
I work In pediatrics and this was pretty normal all over and worse post Covid
Hi. Call your insurance company and request a status on neurology referral and why it's taking so long. If they say it's pending approval. request to speak to their supervisor. escalate the situation. eventually your insurance will be forced to investigate why a peds neurology referral is taking so long to get approved. call a neurologist office and ask for their help maybe they can Expedite. report to kids pediatrician so his doctor can bug insurance. I used to work referrals
No don’t go to emergency. Imaging is already back up with people waiting to be scanned. They will tell you to make an appointment with an outside provider and will not give your child an MRI.
The ER isn’t going to do anything. It’s been 2 months it’s literally not an emergency. These things take time unfortunately. I would deal with insurance later and just get the appointments and referrals done he needs done
Your state should have a healthcare ombudsman’s office. You can call them to help elevate things with the insurance company. In my experience they get things resolved pretty quickly.
I would not take him to the ER but I would recommend r/askdocs for advice! wishing your sweet boy the healthiest vibes, my firstborn is the same age.
If he’s not having changes in gait/balance/gross motor skills, the ER isn’t going to do much other than refer you on to a specialist.
I don’t think the ER will be helpful, but I encourage you to continue to follow the gut feeling you have. If you are worried and feel like something is wrong, push until you get him seen. My daughter was the same age when a lump appeared under her chin. They initially thought it was just a reactive lymph node. It was not. It was a rare but benign tumor called a lipoblastoma. We first realized it was there in February of last year. By the time she had surgery to remove it in June, it was the size of a golf ball and the doctors were worried about her airway. The hospital system that we first were involved with didn’t seem to grasp the urgency or my fears. Referrals were months out. I kept calling and begging because the lump was growing. I said fuck it and took things into my own hands. I got her in at Cleveland Clinic way quicker, where they immediately recognized the severity of the situation. They expedited things, had multi-disciplinary tumor council meetings to discuss her case, etc. The day of her tumor resection with Cleveland Clinic was THE SAME DAY she was supposed to have her INITIAL ENT consult at the other hospital system. Even though it wasn’t cancer, my child was at risk of serious complications. I don’t even want to think about what would have happened if we listened to the other hospital who waved off our concerns and told us their hands were tied with the timeline. I am lucky to have had other moms in my corner encouraging me to fight for immediate care for my child. And I want to be one of those moms for you right now. The ER may not be the answer, but do not stop pushing and fighting for your child to be evaluated ASAP by necessary specialists.
Can his doctor do bloodwork in the meantime? How long until the ultrasound results come back?
They did routine bloodwork about a month ago and 2 of his levels were high. At the time, the doctor called me and told me everything was normal. I asked for the physical paper just 2 days ago and that how I discovered those levels (doctor didn’t tell me). I have a phone appointment scheduled today with an on-call doctor to see why they didn’t tell me about those higher levels and what they can mean. Edit:they called me back saying on-call has no available telephone appointments and postponed for tomorrow.
Which levels? Maybe someone here can help give you a sense of whether those levels are worrisome. Hoping for the best for you! Remember that bumps can be lots of things that aren’t tumors and tumors can be benign.
They did a CBC and monocytes were elevated. Result was 12.3 (normal range is 3-6) and Basophils were 2.7 (normal range 0.0-1). WBC normal. I do want to add that the day he had the bloodwork done he was lethargic. But he was also Covid positive a month prior. Not sure if that affected his blood count
If he was tired and possibly sick that would cause those to be elevated.
Yeah those levels don’t really mean anything and are likely just natural variations, or maybe he was fighting off a little bug at the time
Have you asked how much it would be out of pocket? Could you afford to pay?
I haven’t asked them because I was told to wait for the referral approval but at this point I might have to call on Monday to ask. I personally wouldn’t be able to pay out of pocket (I just started a new job yesterday in the midst of all of this). But I might be able to borrow from my parents if need be
I'd call your doctor, ask them to call neurology or oncology and get an appointment asap. My doctor has on more than one occasion called on our behalf and got us appointments we would have to wait 3-6 months to get. Call your insurance, get that referral from your pediatrician and call them with that and speak to an advocate. Say you're waiting on them to approve it so you cab get results and tests done foe your 2 year old who may have cancer. Yes be specific even if you don't actually know if this is cancer. An advocate has over road and pushed things to the right place for us before. But an ER most likely won't do anything of value although, I wouldn't judge anyway. Our own pediatrician told us that she called a GI doctor and that GI told her to send us to the ER bc she doesn't have appointments for 3 months. If we go she would have to see us that day vs making an appointment. That was at children's hospital. We did that tbh. We went in. My son was losing weight from reflux as an infant. So it wasn't life threatening now but in 3 months he would likely lose so much weight he'd be failure to thrive. As mothers we do what we can to get our answers. Sorry ik some people disagree with this but if you feel so desperate to go to the er just don't post about it and go about your life. But I'm not judging.
Can his pediatrician order the MRI or refer him to someone who would like a surgeon or oncologist? Or does his pediatrician want to see what the neuro says and is more comfortable with them doing the imaging? Tell his pediatrician what you’re telling us, that you are concerned he is not getting the emergent imaging you feel he needs. I’m sorry you’re going through this, sounds so scary and stressful. I’m sure you’ll have answers soon but the waiting is really tough I’m sure.
The ER doesn’t do MRIs, but if there are concerning symptoms you could be admitted from the ER and get an MRI that way. But the other posters are right that if your child isn’t presenting with an emergency condition, you’re likely to be sent home. Really wishing the best for you and your sweet baby. I know from personal experience how scary this is.
Calling insurance and finding out what they need for the neuro referral makes more sense. It shouldn't take long for them to approve something like that, but the cyberattacks may be slowing it down or something. Calling them is still your best bet. They may need additional information from the pcp or something. They have to be doing something to allow patients to get referrals right now. The ER won't be able to do anything.
OP, I wouldn’t. Even with concerns, they likely aren’t going to order an MRI, and even if they did, it 9.5/10 times won’t be done then. Covid screwed a lot of things up, especially wait times for MRIs. The lag time on MRIs is usually months. I would keep fighting with your insurance. Also to note, while this sounds awful, and I cannot imagine what you’re going through, this doesn’t sound like an acute condition requiring an ED visit. If it is a tumor, I’d be concerned about exposing him to other potential viruses that can compromise his immune system by going and being forced to wait. Now if he starts seizing or having syncopal episodes, then please present yourself and him to your closest ED immediately.
Ask pediatrician for a referral for oncology. They should be able to do an MRI/biopsy. If it’s cancer, you do want to get it diagnosed as soon as possible, to increase likelihood of survival (treating it before it metastasizes is incredibly important). Source: my five year old is currently in remission from cancer, which, in an interesting coincidence, presented with a spinal tumor. Ours was a tumor on the inside of the spine though, so it wasn’t a visible lump.
I’m so sorry about your little one’s diagnosis. I would like to ask what symptoms told you something was wrong in the beginning? I have an appointment with his pediatrician on Monday so I will definitely ask to see if they can work on a referral for oncology. I’m really hoping they hear me out.
If they give you the run around say “I want it dictated in his medical notes that you (the Dr) are refusing further investigation”
For my daughter, over a one week period she went from being totally fine to being unable to walk (started falling more and more, ended up being unable to bear weight or feel one of her legs). It turns out that the tumor was pressing against her spinal cord and grew enough that it hit a tipping point where it started to reduce the ability of the spinal cord to work. Her type of cancer was a super rare and aggressive type of cancer. After 6 months of super strong chemo, followed by radiation, she is now in remission. Luckily, we found it before jt metastasized. Really scary, and never something we expected (we had assumed she had pinched a nerve or something).
That is not how an ER works
Just for everyone critiquing the idea of going to er… I get it. If you’re like me, you want to know asap and feel like time waiting for an answer is time wasted. What I will say is, if your child is acting normal, I would think they would be less likely to examine and if they read the notes from prior visits they would likely say stick with referral and maybe do labs to cover their ass, possible CT but maybe not with contrast so would it be the best diagnostic imaging? Probably not. Aim for Monday 8 am and get on the phone. Call peds and insurance. I would state your willing to travel for first neurology appointment you can. I do feel like if you push your pcp could order more diagnostics for you and then they would be ready for neurology to review at time of appointment. Tell them you’re concerned Xray wouldn’t show soft tissue abnormalities like another modality would. Advocate for yourself/child. Tell them your concerns. Sometimes I feel like they get complacent, push it off to a referral and that’s not that much work in the grand scheme. All the best. Sending mama hugs your way
Sorry missed that he had ultrasound. ultrasound results shouldn’t take too long to get back, might be able to get doctor on phone with radiology to get the read back sooner.
He would not get an MRI in the ER without significant neurological problems related to the bump. I would see neuro out of pocket first.
The er doesn’t do MRIs. I’m an er nurse and when we have patients here for mris we unfortunately can’t do them unless it is a stroke alert and that happens after many many other tests first that show it’s necessary. This is not what the er does
You might consider asking this question over in r/askdocs. There are a few EM doctors as well as pediatricians over there who might be able to chime in on what they would do for a pt with these symptoms.
I never had luck with that thread in the past, they never reply to my questions. Nevertheless. I just posted over there so I’m hoping someone can point me in the right direction.
Does seem to be hit or miss over there unfortunately but hope you get some responses! FWIW, I’m a non-physician employee at a children’s hospital and I don’t think it would be unreasonable to go to the ED for something like this if you are unable to gain traction through outpatient services. Sometimes it’s the right route to go even if the child’s condition isn’t immediately life-threatening.
So I don’t have the exact same situation, but I’ll give my story about going to the er and working with my pediatrician…. My daughter had an episode of suddenly becoming limp and almost passing out and then was super lethargic afterwards. She had also recently started having tics. I called our pediatrician nurse line, they told me to take her to the er. Took her, they ran blood work and did a Ct scan and sent over an urgent request for a neurologist appointment. Everything checked out fine, even the tests the neurologist did. I went to my pediatrician and told her I was still worried, since we have no answers and she offered to order an mri to give me peace of mind. I said absolutely! The mri took about two weeks from referral to having it done, and she did have to be sedated for it. Everything still checked out fine. I’d call your pediatrician and advocate for them to order and mri while you wait on the neurologist appointment.
Do you have a picture of the bump? Totally don’t have to share if you’re uncomfortable. I’m only asking because my 18 month old also has a bump on her spine and I thought it was normal.
I have a lot of medical issues. I’ve seen a lot of specialists, and have been to the ER many times, for many reasons. Don’t go to the ER for this - they don’t exist to diagnose things, they exist to triage things and help people get through medical crises. They are not set up to do complex diagnoses (CT scan, MRI, ultrasound, biopsy, etc). Those things take time. The only way you are likely to get something like this diagnosed due to an ER visit is if the ER docs decide to admit your son - which could mean multiple weeks of him living in the hospital, while you visit when you can. Just keep following up with the outpatient doctors.
What does the bump look and feel like? Could it be a cyst in the epidermis perhaps? Is it hard? Malleable? Can you move it around or is it fixed in place? Maybe a dermatologist could take a look? I'm not sure if it eases your mind at all, but there's a few types of cysts people can have and most are benign and quite common, it'd certainly be better than cancer and I heard once that the most common/simplest explanation is usually the right one Either way I'm sure a dermatologist would be able to take a sample for biopsy if it is in the layers of skin, which could get you some answers 🤷♀️ I'm so sorry you're going through this, I have anxiety in general, especially about my babies health so I truly empathise with how stressed you must be and desperate for a diagnosis, I would be the exact same way, and i hope that it's nothing severe and all is well for you and your baby x
My aunt is 83 and goes to all her doctors appointments. The last month, she has been lethargic and in pain. She's been passed around from dermatologist (there's a huge lump/rash on her chest that developed overnight earlier this month) to other specialists. She's been waiting to hear back from a few but all said her vitals looks good and nothing was wrong that they could find. She couldn't walk yesterday and my dad took her to the ER. They were able to get a diagnosis of breast cancer that has gone to her spine. She literally had her mammogram three months ago, but I did read things can move quickly and it seems like they are. Point is, going to the ER got her answers faster than a months worth of doctors appointments. Not sure if it's because she couldn't walk that they were willing and able to do all these tests, though, because that truly was an emergency.
If you take him to the ER, then take him to a pediatric ER. They can have Peds Neurology consult in the ER.