Behavior Issues with CF Children?

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hjmomva

New member
I thought I saw a post on this recently but couldn't find it so starting anew.

I wonder sometimes if my son's meds/nutrition/genetics are influencing his behavior and wonder if others have had the same challenges. It seems my 11 year old is often on edge, negative, stubborn and looking for a reason to snipe. Also once he gets something in his head "I'm going to quit X!", it's tough to convince him otherwise. I'd chalk it up to preteen issues, but seems like we've had this for awhile.

He is reluctant to try new foods, go new places (unless there's clear kid entertainment involved!), etc. We try to work around it by giving him enough notice, structure, choices, information about 'what's in it for him', but I don't much care to be walking on eggshells so often.

Anyone feel that certain CF meds influence "edginess"? (Other than steroids that is... We did do a round of them last year and got to day 4 when he turned into a grizzly bear.) Regularly, he's on pulmozyme, omneprezole, Zithromax, inhaled TOBI (just tried podhaler....didn't work for us), enzymes and a variety of vitamins.
 
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Ratatosk

Administrator
Staff member
Sounds like typical "tween" behavior to me -- finding their way -- wanting to be independent, yet still not ready to be responsible. Have you checked out Lisa Greene's website or book http://www.happyheartfamilies.com/TipsForCFParents.html or parenting children with health issues? Mine's always been a picky eater and a bit stubborn; however, he's a relatively happy, laid back kid... If you think it may be health related... Does he have sinus issues? Friend of mine's daughter wasn't sleeping or eating well due to major sinus issues. Completely different child after she had treatment/surgery...
 
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Beccamom

New member
I would second a concern about sleep. I have read articles about children with CF being more prone to sleep apnea. I would see an ENT your CF team recommends. Does your son snore? Is his sleep cut short by his treatment schedule or is he up later then you would prefer trying to get everything done at night. My daughter has multitasking down to a science if you need strategies.
 
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LouLou

New member
Due to the lack of minerals in our soil (erosion, over farming, etc.) our food is not providing the nutrition it once was. Soil depletion is a real issue for all of us. Add in absorption issues and most cf patients are probably quite minerally deprived. Without the proper minerals we can't absorb vitamins no matter how much we try. I have started taking a liquid superfood containing 9 seaweeds and aloe vera that provide 121 nutrients that has helped me greatly. I have seen it help with ADD, ADHD, Autism, and Parkinson's - all disorders that, like your son, have rigidity issues.
 
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hjmomva

New member
Thanks for all the suggestions. We did have sinus surgery about a year and a half ago and noticed a behavior difference but it seems it was short lived. Maybe I need to take him back to the ENT! Also have sleep issues. We do okay with the therapies but even if he gets to bed early, he comes downstairs an hour later and says he can't sleep. Then he wakes up early. Maybe we need a sleep study.

Interesting about the minerals idea. Were you tested for minerals? We do ok on our annual labs but I do wonder sometimes about all that we don't test for. What is the name of your liquid superfood? Would love to check it out and ask our nutritionist about it. I do give him C, D, Omega3s, and Garlic in addition to his AquaADEK.

I will definitely check out Lisa Greene's tips. Thanks much.
 
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