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Emergency Rooms

We are also on the FRAXA Listserve and we noted some discussion recently about emergency rooms. We thought we would share what we have done after an less than stellar experience in an emergency room with our son.

First, we need to note that while our son needed medical treatment he couldn’t receive from his doctor because of the time of day, he was not experiencing a life threatening emergency. He had croup and it was, of course, midnight on a Saturday night. That’s just the way croup rolls. In a life threatening situation everyone needs to recognize that nothing is going to be “ideal” and you need to let the doctors and nurses use their best training and judgment to treat your child.

That said, our experience in the ER was not a good one and it could have been improved had the doctors and nurses understood Fragile X Syndrome. We, as parents, were worried and tired and not the best advocates we could have been under more ideal circumstances. Our son was having a hard time breathing and after our time in the waiting room and in the triage area his breathing worsened to the point where he was going to be admitted.

It’s hard to breath with croup. It’s nearly impossible to breath with croup while you are overstimulated and crying. We avoided being admitted after a very kind nurse (much love to the nurses!) moved us to a tiny room with a door (closed), a light switch (off) and an Elmo DVD (sigh) so our son could calm down. After an hour and a half there, he was stable enough so we were able to take him home.

After that trip, we spoke to Dr. Picker at the Fragile X clinic at Children’s Hospital in Boston. Dr. Picker gave us a letter, on letterhead, that we now carry with us or send with our son when he is away from home. The letter is intended to very briefly explain what is going on with our son and the best way to handle him so that he can be medically assessed.

I’m including the text of that letter below. I would encourage you to ask your pediatrician or fragile x specialist for a letter of your own or even just keep the attached text printed someplace you can grab it if it’s needed.


To whom it may concern:

[INSERT CHILD’S NAME] is a boy with Fragile X syndrome.

This disorder results in physical, cognitive and behavioral effects, particularly hyperarousal and sensory integration issues. These features mean that the high stimulation environment of an ER can be acutely distressing and may well result in significant emotional decompensation that may include physical acting out towards himself and others. The nature of this disorder means that it is not really feasible to try reasoning and explanations to calm matters down.

Typically with Fragile X, the key to good management is to anticipate the reaction and act prospectively.

Therefore I would strongly urge that [INSERT CHILD’S NAME] be triaged quickly and, at the very least, placed in a quiet room away from the high stimulus environment of the waiting room. This will result in a much calmer child, who can be more readily assessed and treated.

If you have any questions, please do not hesitate to get in touch with me.

Yours sincerely,


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