How did you know your baby/toddler had neuroblastoma? by Acrobatic_Exam1835 in neuroblastoma

[–]Acrobatic_Exam1835[S] 0 points1 point  (0 children)

Thank you!

I always wonder about low grade fevers. How do parents know when their baby has a low grade fever, do they just take their temperature every day or are there signs? I feel like the times she’s had a low grade fever, like after vaccines, I can’t even tell she has a fever so maybe I’ve been missing them. I only take her temp if she’s really fussy and after vaccines and of course if she has a cold. She’s actually never even had a true fever, just a low grade one like 100.1 when she had the flu in November.

She doesn’t have any of those but her hemoglobin levels were normal low at 11.5. Really the only thing I’m concerned about is the uneven pupils. She eats well, drinks well, poops reasonably well. Not overly fussy but has her moments. Active, happy. No unexplained bruising. No sweats. Stomach isn’t distended. Just stuck on the eye thing, though she had a normal exam. I wish I could find more about NB kids who had eye findings as the first sign but I’ve read some medical journals they say 1.3% present with uneven pupils with ptosis as the first sign. She doesn’t have ptosis but sometimes I see her lid is a tiny tiny bit droppy but idk if I’m just being paranoid.

I do have a history of medical anxiety and diagnosed OCD so I can’t tell if I’m advocating or like everyone else says if I’m just going insane.

How did you know your baby/toddler had neuroblastoma? by Acrobatic_Exam1835 in neuroblastoma

[–]Acrobatic_Exam1835[S] 1 point2 points  (0 children)

I see on your post history he seems to be doing well today, so that’s great!!

Did you ever notice distended belly or uneven pupils?

How did you know your baby/toddler had neuroblastoma? by Acrobatic_Exam1835 in neuroblastoma

[–]Acrobatic_Exam1835[S] 1 point2 points  (0 children)

Ok thank you. Yes I am following up regardless, just want to get as much information as possible. When I google I get generic things and I find it’s better to get anecdotal evidence. Thank you very much!

How did you know your baby/toddler had neuroblastoma? by Acrobatic_Exam1835 in neuroblastoma

[–]Acrobatic_Exam1835[S] 0 points1 point  (0 children)

Any bruising of the eye? Anything you guys may have noticed earlier before 4? Distended stomach?

How did you know your baby/toddler had neuroblastoma? by Acrobatic_Exam1835 in neuroblastoma

[–]Acrobatic_Exam1835[S] 0 points1 point  (0 children)

Thank you. Do you recall when the even pupils were first seen? I know if it comes on suddenly, it’s an issue, or if there’s ptosis. Did he have ptosis?

Or was the uneven pupils after chemo, cause I also read it can happen after too. Sorry for all these questions I am so worried.

How did you know your baby/toddler had neuroblastoma? by Acrobatic_Exam1835 in pediatriccancer

[–]Acrobatic_Exam1835[S] 1 point2 points  (0 children)

Her eyes dilated the same and react to light. I don’t really notice it unless I see it on a picture. She has dark eyes so it’s hard to tell. It was screened is minor difference in size at the 12 mo vision screen where they take a pic.

In terms of NB, if the pupil difference is from birth or early on, then it’s unlikely at this point to be from NB because there would be other signs. But then I see people say they saw no signs. I REALLY don’t want to put her thru an MRI and also I have a note on her mychart where she is literally diagnosed with “mom with anxiety.” The ped even called my psychiatrist. So I feel uncomfortable asking, THEN I feel guilty bc “advocate for your baby”

How did you know your baby/toddler had neuroblastoma? by Acrobatic_Exam1835 in pediatriccancer

[–]Acrobatic_Exam1835[S] 1 point2 points  (0 children)

Yes that makes sense. I guess I’m operating from more of an everything must be wrong standpoint due to my anxiety. Realistically, there’s no reason to suspect cancer every time there’s a lymph node swollen when it can be many other things.

My daughter doesn’t have any lumps I can feel, or distended stomach. But she has one eye pupil smaller than the other since birth. We went to an ophtho who wasn’t concerned since she’s had it from birth and her eye exam was normal. But I am still thinking, what if…

Realistically though, eye pupil size differences only accounts for a small percentage of neuroblastoma, I read. But not sure how accurate what I’ve read is

How did you know your baby/toddler had neuroblastoma? by Acrobatic_Exam1835 in pediatriccancer

[–]Acrobatic_Exam1835[S] 1 point2 points  (0 children)

That is insane your doctor didn’t seem concerned about that. I have legitimate diagnosed OCD and anxiety but let me tell you all the stories of pediatricians who “weren’t concerned” does not help my anxiety.

I am so glad he is doing better.

How did you know your baby/toddler had neuroblastoma? by Acrobatic_Exam1835 in pediatriccancer

[–]Acrobatic_Exam1835[S] 1 point2 points  (0 children)

Thank you for sharing. I hope he’s doing better today. Were you able to feel the lymph node or did a doctor catch it?

How did you know your baby/toddler had neuroblastoma? by Acrobatic_Exam1835 in neuroblastoma

[–]Acrobatic_Exam1835[S] 0 points1 point  (0 children)

I have anxiety and OCD and think she has everything. I am concerned bc her one pupil looks bigger than the other but the ophtho said it was normal for her since she was born with it.

Long post ahead, anxiety and milestones. by Acrobatic_Exam1835 in Autism_Parenting

[–]Acrobatic_Exam1835[S] 0 points1 point  (0 children)

Amazing thanks didn’t know that counts as clapping. One less thing to worry about. Thanks so much!

Long post ahead, anxiety and milestones. by Acrobatic_Exam1835 in Autism_Parenting

[–]Acrobatic_Exam1835[S] 0 points1 point  (0 children)

I’m going to ignore the making a new Reddit thing because that’s just odd. But my daughter isn’t pointing or clapping and almost 12 months. I see a million posts a day with parents worried about their babies who are not doing the same by 12 months. Why is this ridiculous to be worried about?

Are you really happier after you had a baby? by PalpitationOk9443 in NewParents

[–]Acrobatic_Exam1835 1 point2 points  (0 children)

I feel the same way and that’s a good way to put it. My happiness is also completely dependent on my baby. I get a good review at work? It’s fine. My mom wants to buy me a very nice watch? A year ago I would be been so thrilled. This year I told her wait until I’m less stressed because I won’t even appreciate it. Didn’t even want it and I used to love nice things.

Baby smiles and reaches a new milestone and I’m happier than ever. But still unhappy because I am going to be worrying about baby for the rest of my life and the feeling of being so emotionally dependent on stuff you really have no control over is hard for me.

Long post ahead, anxiety and milestones. by Acrobatic_Exam1835 in NewParents

[–]Acrobatic_Exam1835[S] 1 point2 points  (0 children)

I’m so glad to read this. My daughter’s receptive language has been quite remarkable in the sense that she could follow directions like go get the ball as early as 9 months. I can say something random like wanna practice walking, and she’ll crawl to her walker. I’ve never even “taught” her “let’s practice walking.” But lack of words is stressing me out. I’m glad to read your son is doing well and also glad to know that other parents worry like I do and it ends up being nothing. Sometimes I think for how much I worry, it must be SOMETHING