Comunidad Hemiplejía Alternante (HAI)

Reúnase, debata y apoye a otros pacientes o familias que viven en Hemiplejía Alternante (HAI). Contribuya a los temas o simplemente comparta lo que piense

Living with AHC in New Zealand

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.

Hi Margaret, that is an interesting trigger. I'm glad that you have found the ketogenic diet helpful! We are on keto and it helps Claire when she decides to stick to it too. We live in Auckland, Claire and her parents are an hour further north in Mangawhai. It would be great to keep in touch! Claire knows a few of the other people in New Zealand with AHC and could possibly help connect you there as well.

I will pass on your email address if you'd like?

Please pass on our address, that would be great. It is" We have family in Northland so were up there for a wedding in January and stayed in Auckland on the way up. We would certainly make time to meet next time we venture up that way if it fits in with your family. Thanks for your post which enabled me to get in touch.
Best wishes, Margaret