Нужна помощь в лечении цитомегаловирусной инфекции

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Нужна помощь в лечении цитомегаловирусной инфекции
 
Хотим обратиться к вам за помощью, четвертый месяц наш ребенок борется с болячкой. Диагноз – генерализованная цитомегаловирусная инфекция с поражением ЖКТ, печени, глаз (слабовидение). Возраст 7 месяцев.
Первые признаки болезни проявились 4 месяца (конец мая) назад (температура до 37,7-38,7, перестал гулить, престал переворачиваться, плохо ел, жидкий стул). Попали в ГДБ №1 (точнее сами кое как напрасились). При поступлении-нейтропения, гиперферментемия, в связи с чем заподозрено течении ЦМВ-инфекции, что в дальнейшем подтверждено методом ПЦР крови(1,0*10 в 7-й копий). Выявлено большое количество ДНК-копий вируса в крови, в связи с этим был назначен неоцитотект в дозе 1 мл\кг каждые 48 часов, (3 раза) начались улучшения. Анализы при при выписке АЛТ 89,АСТ 182,ПЦР на ЦМВ при поступлении 1*10^7-й копий, при выписке ПЦР 2,2*10^ 6 степени, Ig G1,812 Ig M 1,009. После выписки через неделю у ребенка стали прорезаться зубы и все симптомы снова вернулись.
В 20-числах июня мы попали в реанимацию НИИ Детских инфекций с поражением легких (за 3 дня до реанимации были у них на платном приеме, никто проблем с легкими не заметил), сильно увеличена печень, селезенка. Пролежал 2,5 недели в реанимации, потом 2 недели с мамой. Помимо восстановления легких гасили ЦМВ. Поставили 2 раза Неоцитотект и 9 дней ставили Цимевен. Ребенок стал оживать, начал переворачиваться, гулить, набирать вес. Брали иммунограмму, состояние иммунодифицитное. Тест на спид отрицательный. Выписали в 20 числах июля. 2 недели находились дома, и снова начали проявляться симптомы. Перестал гулить, стал сопротивляться переворотам, а также стали замечать, что пропадает зрение у ребенка (не реагирует на игрушку, смотрит куда-то мимо, иногда хаотично бегают зрачки).
В данный ребенок лежит в ГДБ №1 Санкт-Петербурга, поступил 14 августа (вялый, температура до 37,7, замечали что перестал видеть). При поступлении прокапали цимевен в течение 2-х недель (ПЦР крови при поступлении(1,0*10^6-й копий), сильно поднялись трансаманизы (до 1500), цемевен отменили. На фоне цимевена ребенок ожил, стал активнее (ПЦР крови снизились на 1 порядок). После отмены цимевена, через 2 дня начала снова подниматься температура (до 38), снова стал вялый. Из-за большого количества клеток ЦМВ (снова поднялись до 10^6) в спино-мозговой жидкости и крови 9 сентября вернули цимевен (планируют проставить 3-4 недели). Врачи прямо говорят, не знают что с нами делать так как с такими случаями не сталкивались. Никаких других инфекций и заболеваний не обнаружено.
Хотелось бы получить консультацию (а если возможно и лечение) у специалистов, имеющих опыт в таких ситуациях. Ребенок угасает на глазах, уже лишились зрения (поражена сетчатка) и что будет с ним дальше совсем не известно.
Заранее спасибо, будем очень признательны за любую помощь.
 
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