Zuzu

Zuzu

Female / 5 years & 10 months

Latest Update

Read all updates

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.

May162022

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)

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0 months – 18 months

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3 minutes to complete

Zuzu completed this assessment at 0 months.

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Your Emotions with a New Baby

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0 months – 24 months

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8 minutes to complete

Zuzu completed this assessment at 4 years and 11 months.

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Development in Year 4

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47 months – 58 months

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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 Symptom
At 1 year & 10 months
Severe

Ongoing Symptom

Observed at 1 year & 10 months

Observed: Always

Severe

Fine motor weakness

Sign or Symptom
At 1 year
Moderate

Ongoing Symptom

Observed at 1 year

Observed: Always

Moderate

Gross motor weakness

Sign or Symptom
At 1 year
Moderate

Ongoing Symptom

Observed at 1 year

Observed: Always

Moderate

Speech Delay

Sign or Symptom
At 8 months
Mild

Ongoing Symptom

Observed at 8 months

Observed: Always

Mild

Asymmetry in face

Sign or Symptom
At 6 months
Moderate

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 Symptom
Parent isn't sure

Symptom

Related To

Diagnoses & Conditions

2020

microcephaly

Condition or Diagnosis
At 3 years & 1 month
Unsure

Condition

Diagnosed at 3 years & 1 month

Unsure

Cerebellar hypoplasia

Condition or Diagnosis
At 1 year & 6 months
Very Confident

Condition

Diagnosed at 1 year & 6 months

Very Confident

Missing cranial nerves

Condition or Diagnosis
At 1 year & 6 months
Very Confident

Condition

Diagnosed at 1 year & 6 months

Very Confident

2021

Brain Tumor

Condition or Diagnosis
At 4 years & 6 months
Very Confident

Treatments

2020

PROMPT therapy

Treatment or Therapy
At 2 years
Neutral

Treatment

Began at 2 years

Neutral

Comments

PROMPT was so expensive that I had to find another solution.

Related To

Occupational Therapy

Treatment or Therapy
At 2 years & 6 months
Helpful

Ongoing Treatment

Began at 2 years & 6 months

Helpful

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