Re:OCD, behaviors/learning older chargers, martha

March 31, 2002

>I'd like to know, too, if others with older CHARGErs have noticed increases

>in OCD, etc. in the mid to late teen years.

>Martha

Martha,

I think you have asked a very important question.

For us, and of course all children with CHARGE are different, the answer is

'no'. Kendra is 15 and 1/2 now and since age 10 her behaviors and learning

have all improved. Significantly.

From before age 3 years old to age 10 were very, very difficult in all

aspects.

Since age 10 we have implemented a variety of approaches and techniques and

in nearly every way Kendra has improved and is closer to the happy bright

little girl she was before age 3.

We still have a long way to go. Very long. But it looks as if the

language therapies, sensory-integration types of therapies, including The

HANDLE Institute, dietary improvements and eating gains, medicine use, and

immune system approaches are all helping.

I would love to know and share with others what they have discovered that

has helped so we can all consider it as well as what seems to aggravate things.

Thanks again for asking an extremely important question.

Mom to Kendra, 15, CHARGE, , 21 and Camille, 24

California

March 31, 2002

My strong suspician, often voiced here, is that has trouble (OCD,

self-abuse) during periods of ongoing pain. It's as though there's an

underlying tendency to these things that becomes greatly increased during

such periods. My suspicion, too, is that Paxil, etc. work well when she's

well but not when pain is a factor. As someone at Perkins has said to us

several times, we all get sick, etc., but discomfort doesn't usually last or

occur 6 months or more of the year. It's all very sad. Martha

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