Early diagnosis and follow-up of cerebrotendinous xanthomatosis in infant siblings presenting with congenital diarrhea: A case study from Saudi Arabia

Cerebrotendinous xanthomatosis (CTX) is a rare autosomal recessive neurometabolic genetic disease resulting from defects in the bile acid metabolism. This report describes cases diagnosed with CTX at an exceptionally early age – 4 months (Patient #2 and #3) – making them the youngest reported cases...

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Main Authors: Badr Mohammad Alsaleem, Amna Basheer Ahmed, Muhannad M. Alruwaithi, Tarig Yassin Alamery, Norah Nasser Alrajhi
Format: Article
Language:English
Published: Elsevier 2025-03-01
Series:Molecular Genetics and Metabolism Reports
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Online Access:http://www.sciencedirect.com/science/article/pii/S2214426925000035
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author Badr Mohammad Alsaleem
Amna Basheer Ahmed
Muhannad M. Alruwaithi
Tarig Yassin Alamery
Norah Nasser Alrajhi
author_facet Badr Mohammad Alsaleem
Amna Basheer Ahmed
Muhannad M. Alruwaithi
Tarig Yassin Alamery
Norah Nasser Alrajhi
author_sort Badr Mohammad Alsaleem
collection DOAJ
description Cerebrotendinous xanthomatosis (CTX) is a rare autosomal recessive neurometabolic genetic disease resulting from defects in the bile acid metabolism. This report describes cases diagnosed with CTX at an exceptionally early age – 4 months (Patient #2 and #3) – making them the youngest reported cases to date. All three presented with intractable congenital diarrhea, a hallmark manifestation of the disease. The diagnosis was confirmed through metabolic bile acids analysis in urine and genetic testing. The siblings were treated with Chenodeoxycholic acid (15 mg/kg/day) during the first year of treatment, resulting in an improvement in diarrhea in all three. However, cognitive function remained unimproved in one patient. Additionally, the presence of dysmorphic features, observed in these patients, have not been documented in previous CTX cases. The diagnosis prompted solely by the persistent diarrhea, highlights a critical, under-recognized early manifestation. These findings underscore the importance of raising awareness among physicians to enable early diagnosis and timely treatment, which may prevent disease progression.
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publishDate 2025-03-01
publisher Elsevier
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series Molecular Genetics and Metabolism Reports
spelling doaj-art-6bc3885ba3f744e783e5bb215f82b5c72025-08-20T02:04:15ZengElsevierMolecular Genetics and Metabolism Reports2214-42692025-03-014210118810.1016/j.ymgmr.2025.101188Early diagnosis and follow-up of cerebrotendinous xanthomatosis in infant siblings presenting with congenital diarrhea: A case study from Saudi ArabiaBadr Mohammad Alsaleem0Amna Basheer Ahmed1Muhannad M. Alruwaithi2Tarig Yassin Alamery3Norah Nasser Alrajhi4Pediatric Gastroenterology Section, Intestinal Failure Program, Children's Hospital, King Fahad Medical City, Riyadh Second Health Cluster, Riyadh 11525, Saudi Arabia; Corresponding author.Pediatric Gastroenterology Section, Intestinal Failure Program, Children's Hospital, King Fahad Medical City, Riyadh Second Health Cluster, Riyadh 11525, Saudi ArabiaPediatric Gastroenterology Section, Intestinal Failure Program, Children's Hospital, King Fahad Medical City, Riyadh Second Health Cluster, Riyadh 11525, Saudi ArabiaPediatric Department, South Al Qunfudah General Hospital, Al Qunfudah 28821, Saudi ArabiaPediatric Gastroenterology Section, Intestinal Failure Program, Children's Hospital, King Fahad Medical City, Riyadh Second Health Cluster, Riyadh 11525, Saudi ArabiaCerebrotendinous xanthomatosis (CTX) is a rare autosomal recessive neurometabolic genetic disease resulting from defects in the bile acid metabolism. This report describes cases diagnosed with CTX at an exceptionally early age – 4 months (Patient #2 and #3) – making them the youngest reported cases to date. All three presented with intractable congenital diarrhea, a hallmark manifestation of the disease. The diagnosis was confirmed through metabolic bile acids analysis in urine and genetic testing. The siblings were treated with Chenodeoxycholic acid (15 mg/kg/day) during the first year of treatment, resulting in an improvement in diarrhea in all three. However, cognitive function remained unimproved in one patient. Additionally, the presence of dysmorphic features, observed in these patients, have not been documented in previous CTX cases. The diagnosis prompted solely by the persistent diarrhea, highlights a critical, under-recognized early manifestation. These findings underscore the importance of raising awareness among physicians to enable early diagnosis and timely treatment, which may prevent disease progression.http://www.sciencedirect.com/science/article/pii/S2214426925000035Cerebrotendinous xanthomatosisDiarrheaCholestasisCataractsMental retardation
spellingShingle Badr Mohammad Alsaleem
Amna Basheer Ahmed
Muhannad M. Alruwaithi
Tarig Yassin Alamery
Norah Nasser Alrajhi
Early diagnosis and follow-up of cerebrotendinous xanthomatosis in infant siblings presenting with congenital diarrhea: A case study from Saudi Arabia
Molecular Genetics and Metabolism Reports
Cerebrotendinous xanthomatosis
Diarrhea
Cholestasis
Cataracts
Mental retardation
title Early diagnosis and follow-up of cerebrotendinous xanthomatosis in infant siblings presenting with congenital diarrhea: A case study from Saudi Arabia
title_full Early diagnosis and follow-up of cerebrotendinous xanthomatosis in infant siblings presenting with congenital diarrhea: A case study from Saudi Arabia
title_fullStr Early diagnosis and follow-up of cerebrotendinous xanthomatosis in infant siblings presenting with congenital diarrhea: A case study from Saudi Arabia
title_full_unstemmed Early diagnosis and follow-up of cerebrotendinous xanthomatosis in infant siblings presenting with congenital diarrhea: A case study from Saudi Arabia
title_short Early diagnosis and follow-up of cerebrotendinous xanthomatosis in infant siblings presenting with congenital diarrhea: A case study from Saudi Arabia
title_sort early diagnosis and follow up of cerebrotendinous xanthomatosis in infant siblings presenting with congenital diarrhea a case study from saudi arabia
topic Cerebrotendinous xanthomatosis
Diarrhea
Cholestasis
Cataracts
Mental retardation
url http://www.sciencedirect.com/science/article/pii/S2214426925000035
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