← Return to Anyone with keutel syndrome?

Discussion
Fernanda (@fernandavidigal)

Anyone with keutel syndrome?

About Kids & Teens | Last Active: Mar 17, 2020 | Replies (17)

Comment receiving replies
@lisapraska

I am connected with the Facebook group for POGZ White-Sutton Syndrome, and I have asked if any have a abnormal brain MRI, and no one does. Could I be dealing with 2 separate issues, I have noticed that many of them suffer with migraines and cyclic vomiting, yet my concern is that if my son’s abnormal brain MRI could be the main cause of his migraines getting more frequent and severe, the school staff that work with my son say yes kids get migraines but not anything like your son.

Jump to this post


Replies to "I am connected with the Facebook group for POGZ White-Sutton Syndrome, and I have asked if..."

Hi @lisapraska
It’s hard to say if an abnormal MRI will tell you anything about migraines or their severity because it would depend on what abnormal findings are there. Much of the time the findings are considered “incidental” – which means “We looked inside to see what was going on, didn’t find a big flashing ‘x’ marking the spot…but we saw this on the way.” Frustrating I know, but at least it’s better than nothing. An MRI cannot diagnose or differentiate between migraine, cluster, or tension headache. It can help rule out other things that may be contributing to symptoms. An example would be a build up of cerebrospinal fluid on the brain. A paediatric neurologist would likely be a good fit for you. Migraine is not fun at all and I’m very sorry to hear that your son suffers from them. I know that for adults they usually start with keeping a log of when they hit and how often, what you have been eating (food can be a big trigger) the medication used to treat them, (too much of certain medications can cause rebound headaches that don’t respond to treatment) and other general lifestyle questions. They usually suggest keeping the log (filled out daily, headache or not) for 3 months. It might be worth giving it a try while you wait for your next appointment.
Also keep in mind that sometimes MRI’s show things that look rather “abnormal” but don’t actually hinder the patient in any way. Our brains are so complex that even though the technology is available to see them from the outside looking in, we still don’t know exactly how they work! Keep me posted?

@lisapraska ….. I just reread your post- you think he has migraines, or he has been diagnosed as having migraines? Is he verbal?

Hi, @lisapraska – thinking of you today and wondering how your son is doing?

  Request Appointment