How we help minimize our child’s episodes
Posted: 14 November 2008 05:30 PM   [ Ignore ]
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Our child, my grandson, Miles, was diagnosed in 2006 after being misdiagnosed for many years.  He is 14 years old and we are learning more and more about this condition.  Prior to the 2006 diagnoses, we focused on diet and wholistic approaches as a way of minimizing what was going on with him.  Because he had seizures, we leaned toward a diet as wheat free as possible, and avoided allergens in his environment and food.  We had to make the doctor test him for allergies and he had 12 known allergies.  We also noted that he had a reaction to tomato based products and white potatoes, so it remains a task to monitor these foods. 

I have read where others on this site, have made it a point to keep tight bedtime schedules.  Seasonal and barometric changes wreak havoc on him.  During the time changes, it is very hard on him.  We also use ion cleansing and detoxification as there also seems to be something in the environment that triggers him.  I have taken my grandson to yoga classes with me which had a calming effect on him and he was like another person.  Sugar is not his friend and he loves to drink water. 

The big thing is to keep stress and anxiety down.  As I have learned about “the feeling” that comes over him, I can observe when he is experiencing it.  We have developed some cues that involve him talking about being “mad and sad” and telling us what makes him mad and sad so that he can reduce the impact of the stress.  I also notice that he likes order, familiarity and a sense of certainty.  It seems to help him to know when a major or minor change is going to happen.  Of course, we could not have prepared him for the death of his father and great grandmother, which precipitated the most devastating episodes so far.  It looks like stress and allergies are such reliable triggers.

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Posted: 09 February 2009 03:11 PM   [ Ignore ]   [ # 1 ]
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My daughter had so many complicating factors. When she had her first episode at 10 she was very very stressed physically. She had bad allergies, poor sleep, got a broken arm over almost nothing - we didn’t know she was getting thin bones from Celiac. She was diagnosed with depression and put on an SSRI antidepressant (at 9) when we later found out she has central hypothyroidism. She was having a terrific school year but was physically incredibly stressed. That’s when the first episode was and they thought it was more depression even though we said she didn’t seem like it, but they increased the SSRI again.

It wasn’t until this happened again and again we knew - THIS WAS NOT DEPRESSION!!!

So, what are her triggers? I have no idea. She was so allergic and physically stressed for so long, who knows.

But she is much healthier now at 21. She is GF/CF/Ef/SF diet, exercises, takes hormones, and food supplements and has good sleep hygiene. Still, she has her days. They cannot completely correct her hormone levels so she will always be somewhat physically stressed.  And of course, being female, levels fluctuate.

But take home lesson about minimizing episodes for my daughter? Keep away from known allergens, and correct every physical stressor possible.

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