Botulinum Toxin for Children: A Graphic Summary of 30 Years of Innovation and Practice — From a Single Case to More Than 130,000 Sessions

Dear editors,

In 1995, we published our first-in-child successful “rescue” treatment with botulinum toxin in a 6-month-old infant in the Journal of Neuropediatrics.[1] Now, 30 years later, botulinum toxin has become an internationally recognized standard of care. It is firmly established as part of the multimodal, multiprofessional, and interdisciplinary treatment pathways for spastic and dystonic movement disorders, mainly under the umbrella of cerebral palsy (CP).[2]

With this letter, we aim to provide a global overview of the current use in pediatric care across Europe, North America, and Australia. This snapshot is intended to complement the now overwhelming body of literature — over 2,844 publications indexed in PubMed under “Botulinum toxin AND children” as of June 2025.

Building upon pioneering work in both neuropediatrics and orthopedics — such as multilevel treatment,[3] procedural improvement using ultrasound guidance[4] and international consensus on dosing recommendations[2] — botulinum toxin use was driven by the clinicians' experience, clinical research, and interdisciplinary exchange between different subspecialities.

Drawing on our decades of international collaboration, including regular workshops at the annual American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) conferences, we conducted a global survey to assess the current state of clinical practice.

In this communication, we present 10 figures ([Figs. 1] [2] [3] [4] [5] [6] [7] [8] [9] [10]) summarizing the results of our real-world questionnaire, conducted in 2020, which achieved a primary response rate of 89.9%, with 67.5% of respondents completing the survey in full. The dataset reflects a cumulative 882 years of clinical experience across 17 countries on three continents (Europe, North America, and Australia), encompassing 130,420 treatment sessions. Notably, 84% of respondents reported more than 15 years of personal clinical experience with botulinum toxin and reflected the knowledge of at least 31,000 treated pediatric patients. The longtime coworking authors, A.S.S., A.S., S.B., U.M.F., and F.H., together represent more than 150 years of clinical experience with botulinum toxin.

Fig. 1 Geographical distribution. Shows 14 centers/experts in North America, 37 centers/experts in Europe, and 5 centers/experts in Australia. All centers are renowned for their international expertise in the use of botulinum toxin in children.

Fig. 2 Age distribution. Shows that all age groups are treated; due to the dynamics of motor development and the intrinsic changes in spastic muscles over time preferentially the younger age groups.

Fig. 3 GMFCS level. Shows that patients across all GMFCS functional levels — from GMFCS I to V — may qualify for treatment with BoNT. GMFCS, Gross Motor Function Classification System.

Fig. 4 Indications. Shows that the lower extremity is the most frequently treated with BoNT (87.5% of experts reported “very often”), followed by the upper extremity (48.2%) and treatment for pain (17.9%).

Fig. 5 Dosage: licensed (Germany) versus real-world used dosages. (A) Maximum dosage. (B) Maximum dosage per kilogram of body weight. (A, B) The panels compare the licensed doses (orange) with the doses actually used (red dots). The results highlight the discrepancy between recommended and clinically used dosage on the one hand and licensed dosage on the other.

Fig. 6 Side effects. (A–C) The panels illustrate safety and its impact on clinical practice. All experts (%): MW = 6.20; SD = 5.916. Authors of various studies report adverse side effects after BoNT-A treatments in CP patients in 1 to 9% of applications.[5]

Fig. 7 Injection techniques. The figure illustrates the range of injection control techniques. The most commonly used techniques for BoNT injection are ultrasound (53.6%), followed by palpation only (50%), and a combination of both (33.9%). European experts almost exclusively used ultrasound, while in Australia and North America most experts stated to have worked with E-stimulation.

Fig. 8 Injections per year. Shows the number of injections per year, reflecting re-injection intervals in accordance with international recommendations.

Fig. 9 Care continuity. Illustrates the longstanding continuity of care for children with spastic movement disorders.

Fig. 10 BoNT satisfaction. Shows that 82.1% of patients were satisfied with BoNT treatment (mean = 82.1, SD = 13.2).

These 10 figures illustrate

1. Geographical overview of participants

2. Patient age distribution

3. Gross Motor Function Classification System (GMFCS) levels of functioning

4. Leading indications

5. Used versus licensed dosages for Onabotulinum toxin, Abobotulinum toxin, and Incobotulinum toxin

6. Safety — side effects

7. Injection techniques

8. Injections per year

9. Care continuity

10. Botulinum neurotoxin (BoNT) — Satisfaction

We hope that each of the 10 figures will inspire update, reflection, and discussion within the international community of botulinum toxin experts for children.

In summary, botulinum toxin has secured its place as an established treatment — effective, safe, and sustainable over the long term — within the care pathways for CP across all GMFCS functional levels worldwide.

 

MissingLinkText

Conflict of Interest

None declared.

^* These authors contributed equally to the first authorship.

• References

• 1 Heinen F, Korinthenberg R, Stücker R, Deuschl G. Dystonic posture of lower extremities associated with myelomeningocele: successful treatment with botulinum A toxin in a six-month-old child. Neuropediatrics 1995; 26 (04) 214-216
• 2 Heinen F, Desloovere K, Schroeder AS. et al. The updated European Consensus 2009 on the use of botulinum toxin for children with cerebral palsy. Eur J Paediatr Neurol 2010; 14 (01) 45-66
• 3 Desloovere K, Molenaers G, De Cat J. et al. Motor function following multilevel botulinum toxin type A treatment in children with cerebral palsy. Dev Med Child Neurol 2007; 49 (01) 56-61
• 4 Berweck S, Schroeder AS, Fietzek UM, Heinen F. Sonography-guided injection of botulinum toxin in children with cerebral palsy. Lancet 2004; 363 (9404) 249-250
• 5 Blaszczyk I, Foumani NP, Ljungberg C, Wiberg M. Questionnaire about the adverse events and side effects following botulinum toxin A treatment in patients with cerebral palsy. Toxins (Basel) 2015; 7 (11) 4645-4654

Publication History

Received: 23 May 2025

Accepted: 17 June 2025

Article published online:
08 July 2025