Celiac Plexus Block to Treat Refractory Feed Induced Dystonia in Children with Severe Neurodisability: A Single Center Case Series

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TL;DR

This case series describes the use of CT-guided celiac plexus block (CPB) to treat severe feed-induced dystonia (FID) and feed intolerance in five children with life-limiting neurodisabilities. A positive outcome was observed in 3 out of 4 FID cases, with improved pain scores and feed tolerance, and no post-procedure complications were reported. The findings suggest CPB may be a safe palliative option when standard therapies fail, though careful patient selection and a two-stage approach (temporary block before neurolysis) are recommended.

Full summary

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**Background:** Children with severe neurodisability often develop feed-induced dystonia (FID), a condition where enteral feeding triggers severe pain, dystonic spasms, and autonomic disturbances that resolve with fasting. Standard treatments include reducing antidystonia medications and gut rest, but some children remain refractory and may require parenteral nutrition (PN) with its associated risks. The celiac plexus carries afferent sensory fibers from the foregut; blocking these signals could theoretically interrupt the aberrant pain-dystonia cycle. This case series from a single UK tertiary pediatric hospital reports the use of CT-guided celiac plexus block (CPB) in five children with life-limiting conditions and severe neurodisability.

**Methods:** Five children (all female, aged 7–17 years) with severe neurodisability (genetic/metabolic disease, perinatal asphyxia, traumatic brain injury) and FID or refractory feed intolerance were recruited between May 2013 and September 2018. All had failed standard therapies. Four had a history of feed-induced abdominal pain; three had documented FID. Four were on PN. Under general anesthesia, a 22G spinal needle was advanced via a posterior para-aortic approach to the celiac plexus under CT guidance. A diagnostic block with local anesthetic was performed first; if successful, a neurolytic block with 100% alcohol was offered later. Pain was assessed using a visual analogue scale (VAS) scored by parents (0–100 mm) comparing the mean score 2 weeks before and 48–72 hours after the procedure. Feed tolerance (mL/h) and analgesia use were also recorded. Complications were monitored clinically and with biochemistry (amylase, lipase).

**Key Results:** A total of 10 CPB procedures were performed across 5 patients. No post-procedure complications were documented. - **Case 1** (9-year-old, trisomy 3 monosomy 5, chronic intestinal pseudo-obstruction): Underwent 5 CPBs (1 diagnostic, 4 neurolytic). Mean VAS reduction was 48.2 mm (range 34–57 mm). Mean increase in enteral feeds was 13.6 mL/h (range 6–24). Oramorph requirement reduced after 3/5 procedures (to 30–50% of pre-blockade levels). Effect was not sustained; further procedures deemed futile. - **Case 2** (17-year-old, Leigh encephalopathy): Had a temporary then a neurolytic CPB. VAS improved by 65 mm. Enteral feeds increased by 40 mL/h after the first block, maintained for 6 months after neurolysis. Analgesia was weaned off completely. Loose stools (up to 3/day) accompanied improvement; when diarrhea resolved, pain and feed intolerance returned. - **Case 3** (6-year-old, chromosome 2q deletion): Required PN for life-threatening status dystonicus. After CPB, VAS improved by 84 mm. Oramorph requirement fell from 4 times daily to 2–3 times per week (daily morphine equivalent from 1 mg/kg/day to ~0.08 mg/kg/day). Feed tolerance increased but not enough to stop PN. Stools transiently loose. - **Case 4** (15-year-old, traumatic brain injury): Single CPB resulted in only 2 mm VAS reduction, no change in analgesia or feeds. Regarded as failed procedure. - **Case 5** (7-year-old, cerebral palsy): Only a temporary block was performed; no perceived benefit by parent or professional. No neurolytic block was done.

Overall, a positive outcome (improved pain and feed tolerance) was observed in 3 out of 4 cases of FID. Two of the three PN-dependent patients had improved feed tolerance post-procedure.

**Clinical Implications:** This small case series suggests that CPB can be a safe and potentially effective palliative intervention for carefully selected children with life-threatening FID or intestinal failure when all other therapies have failed. The two-stage approach (temporary block before neurolysis) helps identify responders and minimize risk. The association of loose stools with success (Cases 2 and 3) may indicate that intestinal hurry is a marker of effective blockade. However, the study has significant limitations: it is a retrospective case series with only 5 patients, no control group, and use of an unvalidated observer-reported VAS for pain assessment. The authors emphasize the difficulty of assessing pain in nonverbal children and the risk of over- or underestimating pain. Larger, prospective studies with validated pain tools are needed. Nonetheless, for children with limited life expectancy and severe suffering, CPB offers a compassionate option that may improve quality of life by reducing pain and enabling enteral feeding.