Therapy

    Your child may need therapy.  We have found therapy to be extremely beneficial for Ethan.  It's amazing the progress he's made with some simple interventions.  There are several issues to be on the lookout for.  Remember that there is a lot more affected skin than you might think of at first. 

 Some things to consider:

-Your child automatically qualifies for EI (Early Intervention) services because Ichthyosis is a disorder with risk of developmental delays.  Many of our children are also premature & that also automatically qualifies them.  Even if your child does not have delays, your caseworker can help you find services/devices your child may need.  Assistive technology (for example: cooling vest) funds are available!

-Contractures of the fingers

        *the tight skin on the fingers can lead to contractures

        *if you notice a limited range of movement, please ask for an OT (Occupational Therapy) evaluation

        *we have found that fingerless compression gloves have helped some... we are still dealing with limited range

-Tight skin in the mouth/decreased mobility of the tongue

        *We never thought about the skin in Ethan's mouth being problematic

        *Ethan was never able to take a bottle (breastfeeding is easier)

        *Your child may have difficulty with solids/various textures

        *You may need to experiment with various sippy cups... the nuby straw cup worked best for Ethan

        *These problems can be addressed in OT & ST

-Sensory Integration Disorder

        *Your child may have decreased sensitivity because of skin build-up

        *Your child may be extra sensitive to things like clothing/textures if they irritate/tear skin

        *This can be addressed in OT

-Range of movement (gross motor)

        *Tight skin can cause your child not to move as well

        *You may notice gross motor delays or compensatory behaviors when they reach gross motor goals

        *We have noticed gross motor problems/regression during "peels" or "bad skin days"

-Foot issues

        *Ethan wears Answer2 shoes to help resolve some of the issues he has with his feet

        *Ethan has been casted (July 08) for AFOs/night splints to address toe walking, pronation/supination, and tight tendons

-Speech

        *I strongly suggest beginning sign language (modeling) at around 6 months of age (or earlier) in case your child does have a speech delay related to oral motor issues.  We were introduced to Signing Time DVDs at the 06 conference & they are AWESOME!

        *Oral motor intervention in speech & OT can help