Hi guys, quick question. Any of you or your children become extremely exhausted after spending an afternoon outside when it's warm? My son seems to get this way after we come in and it continues the entire next day with tiredness and even bloodshot eyes. He isn't even doing anything active or physical, just being outside. I am sure he is well hydrated, and gets extra salt on these days, but it still seems to affect him even the next day regardless. He is not in the sun a lot of the time either, mostly I'm the shade. Thanks everyone.
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Now that summer is here
- Thread starter Jshet22
- Start date
A friend of mine's daughter had issues with overheating even in the winter time -- she couldn't wait inside in her winter coat waiting for her mom or the bus to pick her up because she got so hot. It helped once she was put on kalydeco. So could be whatever mutation your child has affecting the salt transport. My kid has always loved being outside and his daycare used to have them walk everywhere, play outside a LOT. We'd send along a salt shaker so he could take hits off it, which seemed to help. The only time I ever recall him having issues was when he was a baby/toddler and trips to Colorado -- higher altitude, drier hotter climate which was the perfect storm to getting him dehydrated. He usually would run a low grade fever, sleep quite a bit.
We have to be careful as well. Lots of Gatorade. If the air quality and humidity is bad try to avoid exersizing that day or during the peak heat hours. Also, maybe the allergy/pollen index could be high. At the end of the school year my daughter went for a hike with her school on the hottest/humid day. The air quality was also bad(I should have made her stay home but it was a learning experience for us both). I picked her up from school and she looked white as a ghost and told me she felt terrible like she was going to pass out. I almost drove her straight to the ER for IV Fluids. But I took her home; made her eat like 3 salt packets, Gatorade and have some sugar candy as well. Had her have some pretzels and rest and increased more fluids and 3 more salt packets; she fet better after about an hour. It was scary. I will use this experience to teach her how important it is for her to take care of herself etc...
That intense tiredness really does sound like dehydration. We use Gatorade, Gatorade, Gatorade! Like 6 or 8 bottles a day. I always make him prepare too by drinking a couple before he even goes out to do anything. But there was one occasion in particular that mine son had thrown up a couple of times and just couldn't rally. He was so tired I was frightened. After about 2 days of this no matter what we did I took him to the ER. They put him on IV fluids and within about 20 minutes he sat up bright eyed and said "Wow. I feel SO much better Mom!" Lesson learned. Don't hesitate to get IV fluids.
Summer and cf
Hey, JakeS here. I have cf, am 41, and summers are very hard on me. The best advice i can offer is make sure your child stays hydrated. Don't use gatorade, as it is not really a good source of electrolytes, instead use coconut water mixed with fruit juice and add salt. I also add coconut water powder to the mix. I add more of i am going to be in the sun all day. The coconut water has a lot of magnesium, which acts as a catalyst for absorption of the other electrolytes, sodium, calcium and potassium. It has literally saved my life. Because we sweat out salts, we need to replace them every day. Hope this helps.
Hey, JakeS here. I have cf, am 41, and summers are very hard on me. The best advice i can offer is make sure your child stays hydrated. Don't use gatorade, as it is not really a good source of electrolytes, instead use coconut water mixed with fruit juice and add salt. I also add coconut water powder to the mix. I add more of i am going to be in the sun all day. The coconut water has a lot of magnesium, which acts as a catalyst for absorption of the other electrolytes, sodium, calcium and potassium. It has literally saved my life. Because we sweat out salts, we need to replace them every day. Hope this helps.
rubyroselee
New member
I get extremely exhausted when spending time outdoors in the summer. Often times, I even end up with a headache as well and I'm out of commission for a day or so. I think the heat is just tough on us, particularly because of our salt imbalance. I find that I need to stay very hydrated and have to keep my salt intake up on those days to help combat the cruddy feeling. So I bring lots of water, gatorades, and salty snacks with me when I'm outdoors for long periods of time. Then, I make sure I get lots of rest in the evening after spending time outside.
Hi Jake S. Thanks for your input - I find it interesting that you suggest Gatorade is not good for hydration issues. Can you point us to any research? There are an lot of people in our community who rely on Gatorade at least in part for hydration! I have no doubt that coconut water would be great but it tends to be pretty expensive, especially with the volume my son drinks!
Blessings
Blessings
Thank you everyone for the great advice. Between the cf doc and GI doc we have decided when he is going to be out for awhile and it's hot that we will run pedialyte through his g tube to give him as much hydration as possible. He's just so tiny weighing only 80 lbs and sweats so much, they think jyst needs more hydration then most. It seems to be working so I'm happy for thst.
I have a question that relates to this thread. Has anyone with CF here been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome)? My daughter was diagnosed with that last year which led us to a CF diagnosis. The symptoms that she has that go along with this thread are: exercise intolerance, inability to regulate body temperature, extreme fatigue and episodes of fainting/dizziness. Her cardiologist put her on salt tabs, drinking her weight in ounces of water daily and an exercise regime, which has helped her immensely. Just curious....
Lots of questions raised for me Veggie. How did they get from POTS to CF? How does the exercise intolerance and inability to regulate body temp manifest? I don't know much about POTS but I thought it was primarily an abnormal increase in heart rate when standing up. We'd love to hear more.
Blessings
Blessings