Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 My son is Isaac. He will be three on 27th August. Isaac has diffuse bilateral PMG, we were told by Dr Guerrini that he is very severe. Developmentally we are still working on head control! Isaac has seizures which are currently controlled (Clonazepam and Topamax), reflux (prepulsid and zantac) secretions, which often wake him up at night, choking and gagging. Isaac also has CVI (legally blind). Isaac also has the brightest smile and the loveliest dark brown eyes and he loves being held and walked and driven and sitting by the sea, with the breeze in his face! Isaac eats orally, although we have had feeding problems along the way, the worst being biting his tongue and lips and making them bleed while trying to 'chew' his food. Isaac has been very healthy up until June this year when he got pneumonia and was in PICU on a ventilator. We are taking part in Dr Dobyns genetic research project in Chicago and also working with Dr Guerrini in London and Dr Carrozo in Italy. Isaac has a five year old brother, and he lives in Jamaica and England. Good wishes Kate and Isaac (2yrs 11mos) Quote Link to comment Share on other sites More sharing options...
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