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Cystic Fibrosis
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Posted 5/14/2015 2:04 AM (GMT 0)
Hello everyone, I'm new here and don't really know how to go about this but here it goes. I have a 13yr old w/ CF and recently has had frequent headaches with nausea, gauging reflexes and severe pressure under right eye w/ pulsation under the same eye. Has anyone had similar symptoms? Or know of any side effects similar do to medications. I have taken my son to his CF clinic and even hospital for the sever pain this has caused him, yet nothing has been done or said about it. They continue to brush it off and say it maybe a lack of water, sleep, or vitamins. I find it hard to believe when he is increasing all 3things and yet the symptoms hit him out of the blue.
Posted 5/14/2015 8:13 PM (GMT 0)
I'm a pharmacist so may be able to help in the arena of medication side effects if you don't mind sharing his medication regimen with me.
Posted 5/20/2015 11:41 AM (GMT 0)
Sounds a lot like migraine headaches. I've had antibiotics make me more prone to those. Not fun.
Posted 6/4/2015 1:21 PM (GMT 0)
The diet many young people follow can result in disease since they do not get enough of the vitamins and minerals necessary for good health. Some people think they can take a vitamin pill then drink the soda and eat the french fries. It doesn't work that way. We need to get our vitamins and minerals from the food we eat. Good health is the result of putting good things in our bodies and keeping the bad things out. Raw fruits and vegetables are the good things and fast food and process foods are bad. Might try a diet of raw fruits and vegetables for a month and see if it makes a difference. Leave the soda and candy out.
Posted 6/8/2015 8:02 AM (GMT 0)
Hello, and welcome to healing well,

While nutrients are important please only follow a diet set by your sons dietician. A high fat, high calorie, high salt and in some cases high sugar diet is recommended due to malabsorbtion of fat and fat soluable vitamins. A raw diet is not generally recommended in cf because of the way our digestive systems work and the added fibre can do more harm than good. Please consult your sons cf dietician if you think changing his diet will help.

I know you say he is drinking lots, is he also having lots of salt? Because we lose 100% more salt in our sweat than a normal person then we don't have as much in our bodies available to transport water where is needs to be, so you can drink gallons of water and still end up dehydrated. Symptoms of dehydration are headaches and nausea, lethargy and feeling achy. There are salt tablets available to help with this, they're called Slow-sodium and can be prescribed by your sons doctor. Also recommended when feeling a bit heat drained and woozey is eat a couple of bags of salty crisps.


Some medication can cause headaches too. It's worth speaking to a pharmacist and ask them to check what he is on and whether any of them cause headaches. Or list them here and we can try to help. :)
Posted 6/9/2015 10:03 AM (GMT 0)
Eat2bwell, I have tried to privately message you but you have no contact details so hopefully you will see this here. Will you please becareful about any dietary advice you give out on this forum. Giving out the wrong dietary advice can be harmful in cases of cf and making people feel bad for not feeding their children a diet you feel is suitable isn't really acceptable. It's actually really difficult for people with cf to absorb nutrients from food so the only way to get the required vitamins is in tablet form.

People with cf used to be on zero fat diets but that was when life expectancy was 5 years old. They then found enzymes and the advice now is a high fat, high protein diet with enzymes to digest it. That is advice from dieticians specialising in cystic fibrosis care all across the world. Low weight is an issue for people with cf as the body requires so much more energy to function and a chest infection can wipe any weight gain away within a few days. The general recommended calorie intake is 3,000 and up calories a day, I've known some patients having to try find 6,000 calories a day to get their weight to start moving up.

I'm sure your advice is good for some conditions but for CF it isn't so good and I can't say this enough that people should always speak to their cf team first when making changes.
Posted 7/14/2015 1:57 PM (GMT 0)
Gemsi That is true for many with CF, but when I switched to a no-fat diet, I was able to go off enzymes AND no longer had trouble keeping weight on! Too weird, right? I was severe failure to thrive until I did this in my late teens. My docs think that my gut bacteria are doing the digesting for me and doing a darn good job since I have to work hard to keep my BMI from getting too high.

I totally agree with you that a typical person with CF doing just a fruit and veiggie diet would have serious issues. I HAVE to eat tons of low fat meat and low fat dairy, or I would lose weight. But fat makes me sick as a dog. I used to take tons of enxymes and have serious GI pain and issues, but that hasnt been a problem for decades, unless I eat fat. Everyone is so different :)
Posted 7/15/2015 11:30 PM (GMT 0)
I agree, everyone is different and some with CF are pancreatic sufficient. I was the opposite, my mum could only get me to eat fruits and veggies as a child and I was severely underweight. It was only when I started on the junk food that I started putting any weight on at all. I just didn't agree with then tone of eat2bwell's post. The attitude of "you cause these problems in your child because you don't feed them a raw diet" is wrong, especially in CF where diet plays a huge role in having the energy to fight disease. Getting vitamins is a pain and we have to have 5 times the dose a "normal" person has to reach a point where our vitamin levels are somewhere in the normal range.

Mostly, I worry because I hear from parents on a facebook group I'm on, how they've stopped all their kids meds and they're just feeding their kids raw diets and colloidal silver and cannabis and their kids have lung functions of like 30% and they can't work out why as they're doing all this good stuff for them and not feeding them any of the "bad" stuff the doctors have suggested (seriously one parent was asking whetehr they should let their two year old smoke cannabis and would it help them.....). Parents are impressionable when they're worried about their kids. Sometimes I think the internet can be a harmful place and it should never take precedent over what is suggested by the childs own doctors, dieticians, medical professionals who can do tests and have the childs history infront of them.

I'm not against people trying new diets to see what suits them best, however they should do so with guidance as what's right for one person isn't right for the next.
Posted 7/17/2015 7:07 PM (GMT 0)
Yep, I heard you loud and clear. I was the same way as a kid, had to eat 5000-7000 calories a day to keep weight on and the only way was add quite a bit of junk food. So I ate that way until college and then figured the whole "fat is a problem for me" issue and now I have trouble keeping weight OFF. (I have always tested PI) I know this is NOT typical of DD508, however, I have heard of a few others like me out there.

I definitely agree that folks need to keep lines of communication open with their docs at all times, but I have discovered that the GOOD docs are open to learning from their patients as well. Mine is downright fascinated with a ddf508 who is PI, doesnt take enzymes, and works hard to keep her weight from ballooning.

There are some really scary folks out there though, with regard to how they will experiment with their childrens health and life.........I have two daughters, I just couldnt imagine. Maybe its total desperation? I do know some docs simply just dont listen when the patient tells them the meds are either not working or making them feel horrible. Some dont seem to care in the slightest as long as protocol is followed and their butt is covered. So people do have to think for themselves too. And I have had a very well-known doc ask me if I wanted to try some cannabis pills, see if they would help with the asthma and pain. Wasnt ready to go there yet :)
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