Meet the Delgado Family. I connected with Tim over instagram and reached out to him with several questions over the past year. Tim’s son Dax has BWS and is 10 years old. Since Owen is only 2 I constantly have questions for the parents who have older BWS children. I have learned so much from Tim and his family. He has been so helpful when trying to navigate some of the challenges that come along with BWS. Last week I sat down with him and asked him some questions regarding overheating. Here is what he had to say
When did you start noticing Dax had issues with overheating?
Tim: Age 1 was when it was obvious, but looking back there were signs all along
Have you spoken with other BWS families over the years about temperature issues?
Tim: Yes. We have been in contact with many BWS families over the years and have seen that most have issues with body temperature regulation. I recognized how Owen looked in some of your pictures from the beach. He looked just like Dax when he gets warm. That red tint. When Dax gets too warm, it’s usually a more purple color.
How have you handled sports and overheating?
Tim: Quite a few parents turned to swimming as a sport due to body temperature regulation and the fact that a lot of BWS boys tend to take on a swimmers build. That is a big part of why we are going the swimming route. Dax did gymnastics for a while but we decided to pull him out of gymnastics because he was having a hard time with the mask. They had to wear a mask the entire time. He was coming home from the gym more purple than usual. He was obviously having some issues with oxygenation and body temperature regulation.
I am nervous Owen won’t be able to play sports like baseball because of temperature issues. Any suggestions?
Tim: We’ve been there before. We talked with the coach about his issues. Brought extra water and towels to cool him off. At a younger age, he would literally drop to the the floor/ground and lay there for minutes until he recuperated and then get up and continued on. Most coaches didn’t appreciate it. Some did. Now I coach his teams to keep things flowing.
I didn’t even think of that as a possible problem. Owen gets super angry when he overheats. Like in a rage. Does this happen with Dax?
Tim: Yes. Dax would turn into the Hulk. I know exactly what you’re talking about.
What would you do to defuse him ?
Tim: Lots of trial and error. When he was a toddler, not much we could do to be honest. As he got older, it was more of recognizing the indicators of an eventual meltdown. What has worked best was a lot of misdirection. Trying to make the situation comical before he recognized he was upset. Or trick him by focusing on something unrelated to the current situation. Now that he’s a bit older, we have an agreement to do push-ups together if I notice he’s losing it emotionally. The idea is that we physically work out the frustration until it’s gone. Works about 80% of the time. I’ve given the counselor at school permission to use the same tactic. Works better with me, but it helps at school better than using words.
How do you decide on how to handle Dax outbursts? I don’t want to discipline Owen if he has an outburst from overheating/sensory issues since that is out of his control.
Tim: Dax has some sensory issues when it comes to sounds/noises. He doesn’t like loud noises (crowds, fireworks, whistles, etc.). When he was a toddler, he would freak out over the creaking sound of the dishwasher opening or the child laughter of his Little People Ferris Wheel. My wife would continuously expose him to these sounds until he didn’t even notice. I wasn’t a fan, but it helped tremendously.
Any general tips for managing overheating while outside ?
Tim: When Dax was little we used to carry a small spray bottle with cool water in it. We even used to get one with a little fan attached. Good spots to spray other than face are back of neck and armpit area.
Every story matters and makes a difference
I am so grateful that I have the ability to be able to connect with BWS families around the world. Just being able to reach out to them and ask them their experiences is so helpful when raising Owen. I have said time and time again. I am just a mom, not an expert or doctor, who wants the best for her son. In a world where research is still evoloving and we dont yet have all the answers I feel blessed to be able to ask questions to people who have traveled this road longer then me. To all of you who have been forthcoming in your journey THANK YOU! You help me more than you know or realize.
Live Large & Stay RARE.