Hi my name is Margaret. My foster son, Xavier is 9 years old now and has AHC. We live south of Dunedin, New Zealand near Lake Waihola. He started going to hospital for treatment of what was diagnosed as partial seizures when he was 6 months old. He had his first hemiplegic episode at about 8 months, but was only diagnosed with AHC when he was nearly 7 years old.
By that time he was on the ketogenic diet, which reduced his trips to hospital for treatment of his eye-flicking and head-turning to zero within two months of starting the diet. However, his hemiplegic episodes remained and continue to remain to this day. His right sided losses lead to him not being able to walk or crawl, but often when he loses his left side it is mainly his arm affected and he still walks but drags his left leg.
Right sided losses happen every week or so (3 days to 13 days apart, and 1-2.5 days long), and his left sided losses happen most days in between and can be anything from 10 minutes to several hours long. Xavier has multiple allergies and is sensitive to lots of chemicals (eg. cleaners containing sodium benzoate, chlorine, cold wash soap powder topical anaesthetic, and Remove the product used to removed EEG cement to name a few).
We noticed a relation between exposure to Allergens and these chemicals and his hemiplegic episodes. I am very interested in making contact with other families in New Zealand and also families who have members with AHC who have allergies and sensitivities.