Zuzu
Female / 6 years
Latest Update
Clear MRI!
We had an MRI a few weeks ago and the results were stable, thank goodness.
The confusing part is that the oncologist said the tumor looked the same, but he said that radiologist actually said that it looked like it shrunk.
Zuzu’s Journey
Share the first part of Zuzu's story for readers on Sleuth! When and why did you start to feel concerned?
I distinctly remember leaving a message for my pediatrician after Zuzu's 8 month appointment because I had forgotten to mention that she wasn't babbling. She's my second child so I knew that the expression of noise was very different than babbling. My pediatrician said to "wait and see" and that maybe her bilingual environment contributed to some form of 'normal delay.' I took her advice and kept an eye on it. I got most concerned when Zuzu was 15 months old. A family member wondered why her face was asymmetrical and that tipped me over to decide to go to a neurologist. I was already aware - and concerned - that she was behind with walking and talking, and this seemed like yet another issue (incidentally, I didn't notice the asymmetry myself!) To be honest, I had somehow convinced myself that she probably had an issue but that the issue wasn't serious. After all, there are a thousand reasons why a child would be talking late and I figured it was mild. My mind didn't put all the symptoms together b/c I guess I was in denial about the bigger picture - it's hard to see that there's something wrong with your child. Eventually, by 18 months, I finally 'saw' that all these small concerns might actually add up to something more important that I had been missing.
What was your experience, if any, seeking a diagnosis or treatment?
This part was not fun. I finally pushed my pediatrician for a referral to a neurologist not because of any of the symptoms I previously mentioned but because her head size was consistently small at every well visit. Finally, they said, 'ok, if you're worried about her weight and height then go see a neurologist.' At our first neuro appointment, I was shocked that the doctor recommended an MRI. I thought she'd clear us and it'd be a matter of something mild or that she was just a late bloomer. It was frustrating because I was the one who had to self-refer; why hadn't anyone put together all these things I had been mentioning? We got a second opinion who was the Head of Pediatric Neurology at NYU.; he had been practicing for more than 30 years, so I really trusted him. He observed her for 45 minutes and said she looked ok and that an MRI wasn't necessary. I literally danced in the streets with joy. But, I pursued an ENT appointment b/c her tongue was deviated and there, the doctor said we need an MRI asap. They worried that the deviating tongue meant she had suffered a stroke in utero. The MRI showed she was missing four of her cranial nerve and part of her cerebellum. It's kind of mind-blowing that the Head of Pediatric Neurology didn't recommend an MRI. Sometimes I feel like experts are looking for one big diagnosis that would explain everything and so miss something like my daughter's diagnosis which is 'smaller' and more 'rare'. I don't want to think about where we would be if we hadn't gone to the ENT. That eventually explained everything.
Do you have any other thoughts or advice you would like to share from this experience?
My advice is to go with your gut if you think something is wrong. And, if you feel that something is wrong but find internal resistance to accepting it, just remember that Early Intervention can really, really, REALLY help your child and you don't want to window of time on that to close. For me, the best way to advocate for Zuzu was to try to figure out the source of the problem. Also: Facebook groups were useful to find and vet doctors. You still need to vet them yourselves, but they're useful for local resources and to get started on making phone calls to specialists.
Timeline
Below is a timeline of Zuzu’s observed symptoms, diagnosed conditions, and treatments and therapies.
More about Zuzu
Baby's Emotional Development (under 18 months)
0 months – 18 months
3 minutes to complete
Zuzu completed this assessment at 0 months.
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Your Emotions with a New Baby
0 months – 24 months
8 minutes to complete
Zuzu completed this assessment at 4 years and 11 months.
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Development in Year 4
47 months – 58 months
5 minutes to complete
Zuzu completed this assessment at 4 years and 6 months.
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Zuzu’s Notes
Signs & Symptoms
2020
Unilateral vocal chord paralysis
Sign or SymptomAt 1 year & 10 monthsSevere
Ongoing Symptom
Observed at 1 year & 10 months
Observed: Always
Severe
Related To
Fine motor weakness
Sign or SymptomAt 1 yearModerate
Ongoing Symptom
Observed at 1 year
Observed: Always
Moderate
Gross motor weakness
Sign or SymptomAt 1 yearModerate
Ongoing Symptom
Observed at 1 year
Observed: Always
Moderate
Speech Delay
Sign or SymptomAt 8 monthsMild
Ongoing Symptom
Observed at 8 months
Observed: Always
Mild
Related To
Asymmetry in face
Sign or SymptomAt 6 monthsModerate
Ongoing Symptom
Observed at 6 months
Observed: Always
Moderate
Comments
Our doctors said she'd likely grow out of this and it looks like she has. If she hadn't, they said we would discuss surgery when she was closer to being an adult.
Related To
2021
head tilt
Sign or SymptomParent isn't sure
Symptom
Related To
Diagnoses & Conditions
2020
microcephaly
Condition or DiagnosisAt 3 years & 1 monthUnsure
Condition
Diagnosed at 3 years & 1 month
Unsure
Cerebellar hypoplasia
Condition or DiagnosisAt 1 year & 6 monthsVery Confident
Condition
Diagnosed at 1 year & 6 months
Very Confident
Missing cranial nerves
Condition or DiagnosisAt 1 year & 6 monthsVery Confident
Condition
Diagnosed at 1 year & 6 months
Very Confident
2021
Brain Tumor
Condition or DiagnosisAt 4 years & 6 monthsVery Confident
Condition
Diagnosed at 4 years & 6 months
Very Confident
Treatments
2020
PROMPT therapy
Treatment or TherapyAt 2 yearsNeutral
Treatment
Began at 2 years
Neutral
Occupational Therapy
Treatment or TherapyAt 2 years & 6 monthsHelpful
Ongoing Treatment
Began at 2 years & 6 months
Helpful