From the Foundation

What tests to request?

Standard Tests After a Diagnosis

Last week, we asked for you to submit questions that you had about White Sutton Syndrome (WHSUS) for which you didn’t already have an answer. While we still need your submissions, there was one question submitted that addressed a subject universal to parents facing a new medical challenge, and one for which we thought a ready answer should be provided: tests.

After diagnosis, what other tests are recommended for children with White Sutton Syndrome?

It’s a great question, but unfortunately not an easy one to answer fully. WHSUS is so new that doctors and other medical professionals have yet to come to a consensus on a specific battery of tests that should be performed. So here’s the short answer: there aren’t yet specific tests everyone diagnosed with WHSUS should have following a diagnosis.

As is so often the case though, the full answer is more nuanced. There are relatively universal claims that can be made about those diagnosed with WHSUS. For example, almost all individuals with WHSUS have some level of developmental and/or behavioral concerns. This would indicate that following a diagnosis, a thorough evaluation by a child psychologist or developmental pediatrician is usually warranted. While testing for common WHSUS conditions like Autism is usually justified, it is always best to consult with these medical professionals when deciding which specific tests would be most appropriate for an individual case.

Likewise, there are also possible medical complications associated with WHSUS. It’s very important to schedule a fresh examination with your child’s physician, so that they can look at any symptoms in light of your child’s new diagnosis and give any proper referrals. For example, it is known that some children diagnosed with WHSUS have a condition called a diaphragmatic hernia. A primary symptom of this condition is difficulty breathing. If doctors are made aware of these childrens’ diagnoses, the list of probable causes for this breathing difficulty is shortened and they can quickly order the right tests.

So again, we can boil it down to this simple answer: Following a diagnosis, schedule an appointment with your child’s primary care physician. They are the best-equipped to determine the best tests for your child, or to offer referrals to doctors who can. Be sure to go to this appointment prepared with a list of your questions and concerns. If they are unable to answer these to your satisfaction, ask for a referral. It’s also important to provide them with a complete and detailed list of any and all symptoms you have noticed, if you haven’t already done so.

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