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PubMed This is a summary of 23 peer-reviewed journal articles Updated
Pediatric Endocrinology · Septo-Optic Dysplasia

Building Your Child's Care Team

At a Glance

Managing Septo-Optic Dysplasia requires a coordinated team of specialists, including a pediatric endocrinologist, ophthalmologist, and neurologist. Parents must act as the primary care coordinator by maintaining a detailed medical binder with all imaging, lab reports, and emergency plans.

While you may feel like a parent suddenly dropped into a medical world you didn’t choose, you are the most important member of your child’s team. Think of yourself as the “CEO” of your child’s care [1]. Because Septo-Optic Dysplasia (SOD) is so complex and affects multiple systems, you will need a dedicated team of specialists who communicate with each other to provide the best support for your child [2][3].

Your Child’s Specialist Roster

A multidisciplinary approach is the gold standard for managing the “SOD spectrum” [2][1]. Your team will likely include:

  • Pediatric Endocrinologist: The expert who monitors and replaces essential hormones (like growth hormone, cortisol, and thyroid hormone). They are your primary contact for managing adrenal insufficiency and growth [4][5].
  • Pediatric Ophthalmologist: Responsible for monitoring optic nerve health and managing vision-related issues like shaking eyes (nystagmus) or misaligned eyes (strabismus) [6][7].
  • Pediatric Neurologist: Focuses on the brain’s structure and function. They monitor for seizures and help manage the neurological impacts of midline brain differences [8][9].
  • Neuropsychologist or Developmental Pediatrician: Specialists who evaluate developmental milestones and help coordinate therapies like PT, OT, and speech [8][10].
  • Early Intervention Coordinator: A professional who helps you access state-funded services (such as vision teachers or physical therapists) that are critical in the first three years of life [2][11].

The Care Binder: Your Master Record

Because you will see many different doctors, keeping a centralized “Care Binder” (physical or digital) is essential for safety and coordination [12][13]. Your binder should include:

  • Imaging: Physical discs or digital access to all high-quality MRI scans of the brain and pituitary gland [14][15].
  • Endocrine Logs: Serial growth charts (tracking height, weight, and BMI) and all lab reports for cortisol, thyroid, and growth hormone levels [16][17].
  • Vision Reports: Results from fundus exams (a detailed look at the back of the inside of the eye) and specialized tests like Optical Coherence Tomography (OCT) (a special camera that maps the layers of the eye) [18][19].
  • Neurological Data: EEG reports if your child has had seizures, and records of any formal developmental assessments [20][21].
  • Emergency Plans: A copy of your child’s written “Sick Day Plan” for adrenal insufficiency and a list of all current medications and dosages [22][2].

Preparing for the First Specialist Visits

When meeting a new specialist, it is okay to “vet” them to ensure they understand the nuances of SOD. Consider asking how many other children with SOD they manage and how they handle emergency calls [1].

Early diagnosis and regular follow-up with this specialized team significantly reduce long-term health risks and help your child thrive [23][11]. By staying organized and asking informed questions, you ensure that every member of the team is working toward the same goal: your child’s well-being.

Common questions in this guide

What specialists does a child with Septo-Optic Dysplasia need?
A child with SOD typically needs a multidisciplinary team that includes a pediatric endocrinologist, pediatric ophthalmologist, pediatric neurologist, and developmental specialists to manage their complex, multi-system needs.
Why is a pediatric endocrinologist important for SOD?
A pediatric endocrinologist monitors and replaces essential hormones like cortisol, thyroid hormone, and growth hormone. They are the primary doctor responsible for managing adrenal insufficiency and ensuring proper physical development.
What should I include in my child's medical care binder?
Your care binder should contain physical discs or digital access to all brain MRI scans, serial growth charts, endocrine lab reports, vision exam results, EEG reports, and a written sick day plan for emergencies.
How should I prepare for a new specialist visit for my child's SOD?
When meeting a new specialist, ask how many children with SOD they currently manage. You should also clarify their after-hours protocol for emergencies and how they plan to communicate with the rest of your child's care team.

Questions for Your Doctor

5 questions

  • •How many children with Septo-Optic Dysplasia or complex pituitary disorders do you currently treat?
  • •What is the exact after-hours protocol if my child experiences an adrenal emergency or severe hypoglycemia?
  • •What is your process for coordinating care and sharing lab results with my child's other specialists?
  • •What specific 'red flags' should prompt an immediate call to your office between scheduled visits?
  • •Can you recommend local early intervention or low-vision specialists who have experience with CVI and ONH?

Questions for You

4 questions

  • •Who is currently the main point of contact for coordinating my child's care—the pediatrician, a specialist, or myself?
  • •Do I have a reliable system (like a physical binder or secure app) for storing and organizing my child's medical discs and lab reports?
  • •What are my family's biggest priorities for my child's care right now (e.g., vision, growth, or developmental milestones)?
  • •Am I comfortable asking my child's doctors to explain things in simpler terms when I don't understand?

References

References (23)
  1. 1

    The central diabetes insipidus associated with septo-optic dysplasia (de Morsier syndrome).

    Hetman M, Fułek M, Zajączkowska K, et al.

    Pediatric endocrinology, diabetes, and metabolism 2018; (24(4)):197-203 doi:10.5114/pedm.2018.83367.

    PMID: 30963758
  2. 2

    Septo-optic dysplasia.

    Sataite I, Cudlip S, Jayamohan J, Ganau M

    Handbook of clinical neurology 2021; (181()):51-64 doi:10.1016/B978-0-12-820683-6.00005-1.

    PMID: 34238479
  3. 3

    [Optic nerve hypoplasia and septo-optic dysplasia].

    Lohmüller R, Gangloff AS, Wenzel F, Lagrèze WA

    Der Ophthalmologe : Zeitschrift der Deutschen Ophthalmologischen Gesellschaft 2017; (114(8)):759-766 doi:10.1007/s00347-017-0535-6.

    PMID: 28699050
  4. 4

    Hypernatremia in an Infant: A Case of Septo-Optic Dysplasia.

    Oyadiran OO, Gonzalez N, Khiami A

    Cureus 2021; (13(1)):e12450 doi:10.7759/cureus.12450.

    PMID: 33552768
  5. 5

    Pituitary abnormalities in midline brain defects.

    Zucchini S

    EClinicalMedicine 2020; (19()):100260 doi:10.1016/j.eclinm.2020.100260.

    PMID: 32021967
  6. 6

    Selected Ophthalmological Features in Children with Septo-Optic Dysplasia and Optic Nerve Hypoplasia.

    Salman MS, Hossain S, Carson E, et al.

    Neuro-ophthalmology (Aeolus Press) 2022; (46(6)):367-374 doi:10.1080/01658107.2022.2077967.

    PMID: 36544587
  7. 7

    Increased Intraocular Pressure in a Patient With Septooptic Dysplasia: A Case Report.

    Ulloa-Padilla JP, Izquierdo NJ, Oliver A

    Journal of glaucoma 2016; (25(7)):e713-7 doi:10.1097/IJG.0000000000000391.

    PMID: 27136085
  8. 8

    Clinical and Radiologic Spectrum of Septo-optic Dysplasia: Review of 17 Cases.

    Alt C, Shevell MI, Poulin C, et al.

    Journal of child neurology 2017; (32(9)):797-803 doi:10.1177/0883073817707300.

    PMID: 28482731
  9. 9

    Six adult patients with septo-optic dysplasia and drug-resistant epilepsy: Clinical findings and course.

    AlKhateeb M, McLachlan R, Burneo J, et al.

    Epilepsy & behavior case reports 2017; (8()):73-84 doi:10.1016/j.ebcr.2017.04.001.

    PMID: 29159066
  10. 10

    Neurodevelopmental impairments in children with septo-optic dysplasia spectrum conditions: a systematic review.

    Mann A, Aghababaie A, Kalitsi J, et al.

    Molecular autism 2023; (14(1)):26 doi:10.1186/s13229-023-00559-0.

    PMID: 37491272
  11. 11

    The Prevalence of Septo-Optic Dysplasia in Neonates with Absent Cavum Septi Pellucidi Identified during Routine Prenatal Imaging.

    Phillipi MA, Khaki S, Kim AJH, et al.

    American journal of perinatology 2025; (42(12)):1630-1637 doi:10.1055/a-2521-1020.

    PMID: 39837560
  12. 12

    Septo-optic dysplasia plus diagnosed in adulthood.

    Infante-Valenzuela A, Camara-Lemarroy CR, Reyes-Mondragon AL, et al.

    Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology 2017; (38(9)):1705-1707 doi:10.1007/s10072-017-2985-7.

    PMID: 28474147
  13. 13

    Neuro-Ophthalmological Manifestations Of Septo-Optic Dysplasia: Current Perspectives.

    Ganau M, Huet S, Syrmos N, et al.

    Eye and brain 2019; (11()):37-47 doi:10.2147/EB.S186307.

    PMID: 31695544
  14. 14

    Review of the MRI brain findings of septo-optic dysplasia.

    Ward DJ, Connolly DJA, Griffiths PD

    Clinical radiology 2021; (76(2)):160.e1-160.e14 doi:10.1016/j.crad.2020.09.007.

    PMID: 33019967
  15. 15

    Septo-optic dysplasia: Ophthalmological abnormalities in a series of 5 cases.

    Hernández-Almeida S, Dorado López-Rosado A, Muñoz-Gallego A, et al.

    Archivos de la Sociedad Espanola de Oftalmologia 2022; (97(1)):28-33 doi:10.1016/j.oftale.2021.02.003.

    PMID: 35027141
  16. 16

    Recurrent Hypoglycaemia Leading to Early Diagnosis of Septo-Optic Dysplasia in a Small-for-Gestational-Age Infant-A Case Report.

    Tan YRL, Dong X, Lek N, et al.

    Clinical case reports 2026; (14(2)):e71985 doi:10.1002/ccr3.71985.

    PMID: 41674888
  17. 17

    Management of transient central diabetes insipidus with intravenous desmopressin in a premature infant with gastroschisis and septo-optic dysplasia: A case report.

    Kim F, Towers HM

    Journal of neonatal-perinatal medicine 2021; (14(2)):293-297 doi:10.3233/NPM-200465.

    PMID: 32804104
  18. 18

    Septo-optic dysplasia.

    Kumar V, Karunakaran A, Valakada J

    International ophthalmology 2018; (38(1)):337-338 doi:10.1007/s10792-016-0437-7.

    PMID: 28050731
  19. 19

    Patients with septo-optic dysplasia: General ophthalmologic assessment and retinal imaging.

    Eibenberger K, Rezar-Dreindl S, Briem J, et al.

    European journal of ophthalmology 2023; (33(5)):NP11-NP20 doi:10.1177/11206721221128865.

    PMID: 36163692
  20. 20

    Co-occurrence of Attention-Deficit/Hyperactivity Disorder and Septo-Optic Dysplasia: A Neurodevelopmental Case Report.

    Centner A, Centner S, Ikeda J, et al.

    Cureus 2024; (16(5)):e60441 doi:10.7759/cureus.60441.

    PMID: 38883061
  21. 21

    Sleep Disturbances in Children With Septo-Optic Dysplasia: A Retrospective Cohort Study.

    McCarty G, Iyer M, Danieli H, et al.

    Pediatric neurology 2025; (172()):111-117 doi:10.1016/j.pediatrneurol.2025.08.013.

    PMID: 40939567
  22. 22

    Gastroschisis Complicated by Septo-Optic Dysplasia: Two Distinct Anomalies with a Common Origin.

    Garvin J, Sampath V, Karody VR

    AJP reports 2016; (6(1)):e15-7 doi:10.1055/s-0035-1563720.

    PMID: 26929863
  23. 23

    Epileptic Spasms in Septo-Optic-Pituitary Dysplasia: A Retrospective Cohort Study.

    Shields LBE, Shahi S, McCarty G, et al.

    Pediatric neurology 2025; (170()):98-105 doi:10.1016/j.pediatrneurol.2025.06.019.

    PMID: 40664004

This page provides organizational strategies for managing a child's Septo-Optic Dysplasia care for educational purposes. It does not replace professional medical advice from your child's healthcare team.

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