Whitehouse Abigail, Rehsi Preeya, Hartley Louise, Grunewald Stephanie, Yilmaz Berna Seker, Pegoretti Baruteau Kelly, Yaman Ayhan, Thavagnanam Suren, Baruteau Julien
Department of Paediatric Respiratory Medicine, Barts Health NHS Trust Royal London Hospital London UK.
Department of Metabolic Medicine Great Ormond Street Hospital for Children NHS Foundation Trust London UK.
JIMD Rep. 2023 Jun 16;64(4):274-281. doi: 10.1002/jmd2.12375. eCollection 2023 Jul.
Isolated remethylation defects are rare inherited diseases caused by a defective remethylation of homocysteine to methionine, preventing various essential methylation reactions to occur. Patients present with a systemic phenotype, which can especially affect the central and peripheral nervous systems leading to epileptic encephalopathy, developmental delay and peripheral neuropathy. Respiratory failure has been described in some cases, caused by both central and peripheral neurological involvement. In published cases, the genetic diagnosis and initiation of appropriate therapy were rapidly performed following respiratory failure and led to a rapid recovery of respiratory insufficiency within days. Here, we present two infantile-onset cases of isolated remethylation defects, cobalamine (Cbl)G and methylenetetrahydrofolate reductase (MTHFR) deficiencies, which were diagnosed after several months of respiratory failure. Disease modifying therapy based on hydroxocobalamin and betaine was initiated and shows a progressive improvement and enabled weaning off respiratory support after 21 and 17 months in CblG and MTHFR patients respectively. We show that prolonged respiratory failure responds to conventional therapy in isolated remethylation defects, but can require a sustained period of time before observing a full response to therapy.
孤立性再甲基化缺陷是罕见的遗传性疾病,由同型半胱氨酸向甲硫氨酸的再甲基化缺陷引起,阻止了各种必需的甲基化反应发生。患者表现出全身性表型,尤其会影响中枢和周围神经系统,导致癫痫性脑病、发育迟缓及周围神经病变。在一些病例中,因中枢和周围神经受累出现了呼吸衰竭。在已发表的病例中,呼吸衰竭后迅速进行了基因诊断并开始适当治疗,数天内呼吸功能不全迅速恢复。在此,我们报告两例婴儿期起病的孤立性再甲基化缺陷病例,即钴胺素(Cbl)G和亚甲基四氢叶酸还原酶(MTHFR)缺乏症,这两例病例在呼吸衰竭数月后才得以诊断。基于羟钴胺素和甜菜碱的疾病改善治疗已启动,且显示出病情逐渐改善,分别使CblG和MTHFR患者在21个月和17个月后能够撤掉呼吸支持。我们表明,在孤立性再甲基化缺陷中,延长的呼吸衰竭对传统治疗有反应,但可能需要持续一段时间才能观察到对治疗的完全反应。