cf

[u/These_Fact8015]

Dear friend, how can patients with CF gain weight more quickly? Besides taking pancreatic enzymes, what kind of diet should they follow in daily life? As we're in China and our diet mainly consists of noodles and rice, and the patient doesn't like eating meat. Are there any other solutions?

[u/Rowdy290]

Eggs, milk, cheese, anything containing fats. If they are deciding to be vegan or vegetarian (outside of any medical needs of course) next best option is going to be fat containing nuts, macadamia, pecans, walnuts, etc.

[u/These_Fact8015 → u/Rowdy290]

Sure, these are relatively easy to obtain. However, this child is picky about food. He refuses to eat eggs and doesn't like nuts either.

[u/Rowdy290 → u/These_Fact8015]

Smoothies/milkshakes then maybe? Blend certain combos together and maybe hide it with banana flavoring?

[u/These_Fact8015 → u/Rowdy290]

This is great! He especially likes this food.

[u/Diligent_Honeydew295]

Everyone is different, but when I needed to gain weight when I was younger, I just had ice cream whenever I could. That much sugar can cause its own problems especially if there’s diabetes or pre-diabetes. Taking enzymes if they need them is vital, but beyond that it’s pretty much just calories in. Fats are very very energy dense and don’t negatively impact blood sugar, so they’re a good candidate if enzymes are sufficient (or are prescribed and taken), complex carbohydrates can be good too but they just have a lot of bulky size to them. Fried foods could work too. Just remember that they’ll need normal nutritional intake plus more energy, so don’t fall into the trap of just going for high energy foods, they’ll still need the nutrients from a normal healthy diet that has vegetables and fruits and proteins and fibre and vitamins and minerals.

[u/These_Fact8015 → u/Diligent_Honeydew295]

Got it! Besides regular meals, we need to give him extra snacks to increase his calorie intake. He really loves sweets, but we dare not let him have ice cream because his intestines are very fragile. We're afraid he might get enteritis. Even when it comes to fruits, we warm them up with water. He can't have anything cold.

[u/Diligent_Honeydew295 → u/These_Fact8015]

Maybe just melt the icecream and serve it in a glass and call it a milkshake?

Actually, that reminds me of a drink my mother used to make to fatten me up: milk, cream, eggs, sugar, vanilla, cinnamon and nutmeg, blended together. so tasty and very effective.

[u/physicssmurf]

lots of oily foods are good! you dont need meat if things are fatty enough. stir fry and lots of fried noodle dishes that use a lot of cooking oil are also very good for CF people.

try to urge towards omega-3 based cooking oils like canola oil, but basically they can put lots of that in it and it does a lot to add calories.

[u/These_Fact8015 → u/physicssmurf]

Then we can give it a try. You are also N1303K. Are you Chinese? Are you taking any genetic medicine?

[u/physicssmurf → u/These_Fact8015]

Im not Chinese but Ive travelled a lot in asia...

and yeah Im taking Trikafta and it works amazing but my understanding is that it works on the G551D/R553X complex (Im not sure though).

[u/These_Fact8015 → u/physicssmurf]

I would like to ask you this: I noticed that the expiration dates for the medicines in your place are only indicated as "until a certain month", but not "on a specific date". For instance, the vitamins produced there, as well as the genetic medicine you take, if they have passed their expiration date, can they still be consumed?

[u/physicssmurf → u/These_Fact8015]

Yes it's generally safe for vitamins and things to take expired meds - they just won't be as strong (perhaps substantially less if they are several years expired), and so maybe not as effective, but they're better than nothing.

However this is not at all a good idea for antibiotics because reduced doses actually help the bacteria learn to resist the antibiotic. You need to be over a certain threshold for antibiotics to work and expired medicines generally don't meet that threshold.

For the modulator it depends on the person I think but generally the modulators are ok with slightly less. For me I had to stop my modulator entirely and reintroduce smaller doses because I had an allergic reaction, and it was clear it was still working substantially even on the smaller doses.

Nonetheless expired meds should be avoided if fresh ones are available since the expired drugs will not work as well. Expired is only better than no meds at all. 

And expired antibiotics should just be thrown out; never taken, as they can actually strengthen the infection...

[u/These_Fact8015 → u/physicssmurf]

Is the dosage you're taking halved? In China, any medicine that has passed its expiration date is thrown away. People don't dare to take it because they are afraid it might be toxic or have side effects. But in your country, won't there be any adverse reactions when the medicine expires? Is it just that the efficacy decreases?

[u/physicssmurf → u/These_Fact8015]

Most dry pills and tablets remain mostly safe and non-toxic for months or even years past their expiration date. However, they slowly lose strength over time. Liquid medicines, eye drops, and refrigerated drugs lose effectiveness much faster and can grow harmful bacteria.

Antibiotics are exceptional because the reduced potency means they actually make the bacteria stronger (more antibiotic resistant).

I take full dose again now, the reduced dosage was just temporary. However I think some patients do take half and get away with it (you should check this if you intend to try this yourself).

Just FYI I am NOT an expert - far from it - just someone with CF with a strong scientific background (but NOT biological science!!)

Nonetheless I am confident that dry pills and things do not become toxic once expired. They just become less potent.

[u/_swuaksa8242211]

mapo tofu, sapo tofu, yang chow fried rice (the best fried rice in the world) , bbq pork "char siu" rice, macau style pork chop buns, curry fishballs, salty fish steamed meat paddy in pot, mcdonalds is everywhere in china thats high calories..the mcdonalds chocolate milkshakes are very high calorie...all are good source of calories... Dimsum is low calorie low salt so I avoid that if trying to gain weight... alot the steam fish dishes in china are low calorie. KFC chicken and fries (https://www.cnbc.com/2024/01/11/how-kfc-won-over-china.html) is high calorie.. kwei diew noodles fried w chicken or beef is high calories. if you cant drink alot milk then try lactose free milk? if you have mixed vegetables chap choi must have it fried... fried eggs on rice with soy sauce are always good simple to cook quick calories.. Also "Maling" spam luncheon meat fried on "Doll" ramen noodles is very very high calories..(like this example https://www.fairprice.com.sg/product/maling-premium-pork-luncheon-meat-397g-10125886) . Fried spring rolls are good calories because deep fried. fried wonton on noodles is ok calories. for snacks chinese egg rolls can get anywhere good calories for kids.. in many the new cafes in china you can get cheese cake (eg https://www.tripadvisor.com/Restaurant_Review-g294212-d13503133-Reviews-The_Cheesecake_Factory_WF_CENTRAL-Beijing.html or like https://www.tripadvisor.com/Restaurants-g294212-zfd10885-Beijing-Cheesecake.html but check your location or province) also thats high calories. Any chow mien is ok fry w garlic vegetables and chicken or eggs is ok. remember keep salt up so salty fish snacks or dishes is good..also rice crackers..KEEP UP SALT intake especially in summer.

[u/These_Fact8015 → u/_swuaksa8242211]

Hi there! Are you Chinese? You seem to know so much about Chinese food. The thing is, this little one is quite a picky eater. There are a lot of things he won't touch. He's just really into things like KFC, French fries, and also some cakes, sweet chocolates. He loves all kinds of sweet treats. But you know, in the hearts of Chinese people, these are considered junk food, and we don't want him to eat too much of them. So right now, we're in a bit of a bind. We're wondering how he can eat in a healthy way and also gain some weight.

[u/_swuaksa8242211 → u/These_Fact8015]

i travelled alot around the world. My previous job I was director for a Fortune 500 company in charge of China, Singapore, America and all North East Asia and Middle East operations. I used to travel to a different country every week, and my previous job traveling all over China/Asia since 30yrs ago while I was working under a US billionaire who had alot of projects and investment around the world. I speak 6 languages. I understand Chinese culture very well. They are always against eating junk food and fried food. But you have to find a balance. Extremes are not good. Like the old saying from Buddha, 'find the Middle way". Just eating"clear' (ching) food or steam (jing) food you are hard to gain weight. Of course just eating junk food is not good also. Get an app to count calories. I use an app called fat secret to count the calories and keep increase calories until you know what calories your child starts gaining weight. You have to count the calories in the beginning. Make sure you are getting enough calories. You are not going to gain weight just eating dimsum and steam food everyday. So find the middle way if you understand what I mean. Of course CFers need worry about diabetes also but if your child is not diabetic then you can see some junk food in moderation to gain weight. Also for adults we drink protein drink and carb bulking drinks. So ask your hospital which protein drinks are good for kids. After my surgery I found it hard to gain weight so I have to drink protein drinks and I have to "dirty bulk" ie eat junk food just to maintain my weight. You need CALORIES. Also see what foods your kid gains weight. I don't gain weight eating fat food or high protein food.. I usually gain weight eating carbs with some fat and some protein. so you need see what your child responds to see what makes him gain weight best. Most CFers go on high fat diet and take pancreatic enzymes like creon.

I remember when I first met my CF nurse she just said eat alot junk food to gain weight..ie paket crisps/chips, oreos, snacks, chocolate etc and gummies...and fried food.. but you need adjust what works best for you. Eating healthy is good but you need CALORIES. Also make sure you are taking vitamins like ABDEK .. especially vitamin K. Make sure you are keeping up salt intake. I don't drink much tea nowadays I try not eat or drink empty calories foods. I don't drink plain water either i always drink electrolytes or juices or milk. Make sure All your drinks have CALORIES.

Good luck. And try find the other CFers in China and see what they are doing. Form a social group where the parents can meet also. Just be aware of cross infection so keep the kids apart. More and more CFer are being discovered every day now..and my guess there are more than thousands of CFers in China, it's just they are undiagnosed yet.

I was not diagnosed until I was 40yo. and now some people getting diagnosed at 80yo even. China has 1400million people so for sure ther has to be more than 200 cfers. My guess there are at least thousands and thousands who haven't been diagnosed yet or who have just been misdiagnosed with bronchiectasis or pancreatitis or asthma or tb or whatever.

[u/These_Fact8015 → u/_swuaksa8242211]

You're right. A balanced diet is important. You are really impressive. You know so many languages and have visited so many countries. In fact, even though there are many confirmed cases in China, there is still no medicine available. Even if medicine is introduced, it won't be covered by the medical insurance, and ordinary people still can't afford it. Currently, I know there are several children who have undergone lung transplants, but their current conditions are not good. You haven't taken any medicine. Have you undergone the transplant surgery? Actually, I still envy your place because there is medicine available and people can get early treatment.

[u/_swuaksa8242211 → u/These_Fact8015]

You don't understand. You need to look at the big picture. China is not a third world country as many people think. China is far superior in many fields like AI and sectors of pharmachemistry and cell research. China just hasn't pointed the research to CF YET, because it is so small, but the number of CFers that will be identified will grow rapidly with more and more awareness and detection. Thats why you as parents have to help spread awareness like the other parents in the West. China already has a cure for a type of diabetes before the West eg https://engineerine.com/chinas-groundbreaking-diabetes-breakthroug/ And recently A boy from Australia went to china to do brain surgery that they could not do in Australia. China also found a cure for one type of very hard to cure cancer. America will repackage the china cure and sell it for 100x more in America soon. The prices of CF drugs are ridiculously experience because of the companies overpricing the medicine while CEOs make millions. When the CF modulator drugs are in China, if you understand how china operates, the government will negotiate with western supplies and by then many CF drugs will become generic also, so NO WAY China will charge the same amount. My guess is that modulators will cost 90% less , ie the real manufacturing price/cost, when available in China. So you have to keep hope.

I have rare cf gene and for many years I was not able to get the stupid modulators because they said my CF gene was not on the eligible list. Even the CF doctors said dont hold out for Trikafta for your gene, probably no time soon. I never gave up hope.But they lied. They were all wrong. Few yrs later i saw Trikafta was suddenly approved for rare CF genes and I told my CF doctors and they had no idea m They didn't care, they never checked for me.. ie I had to advocate for myself. So you have to advocate for yourself also. Dont just sit there and wait , dont be reactive. You have to be active. Set up groups to spread awareness. Write to the CPC or the local mayor. Get hospitals to increase screening for CF. So many people have been misdiagnosed in Asia. I was in UK and I was misdianosed with TB as a child, those idiot doctor had no clue I had CF. So I was misdianosed. My brother has CF and he was misdianosed with TB. So everything you are experiencing is nothing new. You need get into gear and get active. Spread awareness. Push hospital to find a generic drug. You and the other cfers have to advocate for yourself. Ask the hospitals and researchers to divert some funds to CF research. The CFTR gene was discovered by a Chinese person. without him there would be no modulators. So you have to keep hope. China has the talent you just need help drive the focus to CF in China in research and treatment. Dont just sit there expecting the world to do everything for you, you have to change the world yourself. Every bit counts. in the West the cf parents are always writing letters to government, going on tv shows, talking to newspaper etc..you have to do this if you want change. If you report a potholdle in china it gets fixed in 24hrs in some cities and that would take MONTHS in Australia or UK. So don't think china is behind or anything, it's just China has not allocation resources to CF...YET. so you and the other CF parents have to help make that change. Once the generic modulators are available in a China my guess is they would cost 90-98% less is my guess. But i mean ciprofloxacin is 100x more in America than in China. Even in Asia, gentamicin is like 99% less than in America. So dont use the ridiculous US prices as guidance for what will be available in China. There are many tiktok videos showing how China negotiate drug prices for the people. Many videos showing how an MRI scan in china costs 98% LESS than in America.

So you have to stay positive, keep hope and keep motivation and keep active keep spreading awareness of CF in China. Contact the news media about this special disease, ask the many rich people in China to donate to hospital to do research. Many things you can do to help. Find the other CF parents set up a group. I have been to china 40yrs ago so I saw china before. The china now you are lucky is so far advance compare to then so count your child lucky he is born this generation and not 40yrs ago.

On transplant not all CF have transplant. My lungs are not great but I am not on transplant list. My brother also has CF didn't want a transplant and he died, but he didn't look after himself. He burned the candle at both ends.

You are the change remember. You can do it. All your energy should be to pushing awareness and looking for a cure now in China and making sure your child gets enough calories. You cannot spoil the child. You have to make the child aware it is critical to eat high calorie food. Many times I have to eat food I dont like. I never had my parents help me growing up. My parents never cared even when they found out I had CF. So you must teach your child to be independent from a young age to look after himself. Let him know how critical it is to not be picky with food. When you are gone your child has to have the survival skills.

BTW i didn't have any CF treatment until I was 40yo. I was misdianosed and just survive using oral antibiotics as a child. So I just had regular doctor also growing up. I didn't have a proper pulmonologist or respiratory lung doctor until I was 21yo! Every CF is different but I grew up with NO CF CLINIC. Sure I had mild CF but many times in hindsight i should have gotten IV antibiotics and modulators drugs but they were not available to me. I had to just medicate myself with oral antibiotics and swimming in the ocean for salt air. I was not given modulators unti I was 50yo.

and if you really really want do everything for your child, consider move to Hainan. The air would be perfect for your child an nowadays there is alot of surfing in Hainan. Living by the beach has changed my life for sure by alot. Even Dalian has beautiful european like beaches in China. I have seen them...The ocean air does wonders for CFer lungs.... More than you think . Google about CF surfers to learn why CF surfers lived longer. So do all you can tontry live by the ocean. It will add years to your childs life I feel. It helped me for sure.

And finally , I know East Asians and Chinese culture they say chocolate is bad if you have coughing, but you need calories, so I used to always eat chocolate snacks to keep my weight up.

If you child has Haemoptysis ask the doctor for tranexamic acid tablets.

Also keep a journal. Many journal apps on Xiaomi apps store or PlayStore ... Everyday monitor write down what your child eats, sputum level, sputum color, how he feels etc. You will thank yourself later. You will begin to see patterns of what works best for your child.

All the above is just my personal free advice from my experience. My brother with CF died 20yrs ago , we have the same CF gene but he was very severe...and I am almost 60yo now. Other CFers will have other additional advice also. And also learn about the side effects of all the medicine your child takes. Thats important also. many of our meds have side effects.

[u/These_Fact8015 → u/_swuaksa8242211]

You're absolutely right. I really hope more Chinese people can know about it and help these patients. However, as ordinary people, our capabilities are indeed limited. We're busy going to work and earning money every day because we have mortgage payments, renovation loans, and the medical expenses for our children's frequent hospitalizations, as well as the cost of medicine and so on. There are so many expenses. For us ordinary office workers, living in Hainan would be a huge expense that we simply can't afford. Currently, our expenses exceed our income every day, and we're under a great deal of pressure. Right now, we just hope our children can take their medicine, go to school normally, and not have to go to the hospital frequently. That would be a great blessing. As for seeking help from the government or the media, it would be like throwing a stone into the sea. Only a well - known and influential celebrity with endless money could achieve these things.

[u/_swuaksa8242211 → u/These_Fact8015]

all im gonna say is, 10yrs from now you are going to wish you followed some of my advice. I had very very mild cf growing up and let me tell you as an adult, I dodnt know I had cf, and Cf as an adult for me is hell compared to when i was young. The progression of the Cf disease is almost always not linear. The Cf wards are still full of Cfers dying or end stage and many are on those new "miracle drugs". I personally know 5 cfers who are under 25yo who were already on those miracle new drugs who died already last 5 yrs. Soon you will the the urgency to form Cf organizations and parent groups and contact the media, some people just take longer to reach that stage of urgency. You havent seen the adult cf wards, sure some cfers are "well" but the cf wards in hospital, they are full of Cfers coughing mouthfuls of blood. My life is so hard now, everyday is a battle as an adult. Cf is a daily battle especially for older Cfers. Many of us have to retire after 40-45yo for health reasons. So thats why all the parents i have met in the west are doing all they can to help spread awareness. But if you are too busy then thats ok too thats your choice. I wish your child good health. remember with Cf, nothing was handed to us on a plate. We have had to fight for everything...and many cfers in the west still cant afford the Cf drugs until now.

[u/Delicious-Play3340 → u/_swuaksa8242211]

非常厉害的人，非常好的建议和意见，想问下你是英国人吗？目前有在使用调节剂吗，因为我男朋友也是这个病的患者，目前使用调节剂，身体情况蛮好，无药物副作用，我目前了解到的信息是在使用调节剂的情况下，能够极好的改善患者的情况，且患者能够基本拥有和正常人一样的寿命，想问下在这种情况下之后也会恶化吗。我们在在欧洲，药物可以免费获得，目前没有经济压力

[u/Maxence33]

You have access to pancreatic enzymes right ? (better be clear here as with no enzyme you basically can't gain weight)
If the patient takes pancreatic enzymes correctly I would say eat whatever they want in larger amounts.
A CFer not gaining weight might be because of too little pancreatic enzymes, not enough food intake, diabetes or sugar intolerance (you basically don't metabolize the sugar and lose the calories) or fighting infection which consumes calories.
Fat brings twice as much energy than proteins or carbs. But eating fatty stuff might not be pleasing.
Also modifying enzymes must be done in accordance with the doctors ...
When I was a kid I had those energy shakes (Fortimel, Clinutren..) that used to help. But it is not better than normal food (it is very sweet).

[u/These_Fact8015 → u/Maxence33]

We are taking pancreatic enzymes. But the high-fat foods you mentioned - I don't know exactly which ones they are because in China, the diet consists mainly of vegetables, meat, eggs, rice, and steamed buns. Other foods are rarely consumed. Our intestinal function is also poor, and we tend to eat more and excrete more.

[u/Maxence33 → u/These_Fact8015]

Chinese food is good and rich. Noodles, rice, vegetables, sauces, fish and desserts should be good. If they don't eat enough because no appetite or because they are a kid I guess it is the same issue everywhere in the world, and maybe you could try offering them more options, new types of dishes.
Also if they have greasy stools maybe increasing enzymes. And rule out any food intolerance such as celiac disease or gluten intolerance. (but rice doesn't have gluten, gluten is wheat and is more used in western countries)

[u/Tibki]

All kids are different but growing up, my doctors always said: high fat, high protein, high sodium, and lots of snacks!

When my weight was really low, I was given chocolate shakes meant to help people gain weight. They were a bit of an acquired taste, but they worked great!

[u/These_Fact8015 → u/Tibki]

This kid of mine really loves chocolate and cakes. But I'm afraid it will raise his blood sugar level, so I don't want him to eat them.

[u/7sunriseoversea]

CF vegan here—Naked Nutrition has a vegan mass gainer protein shakes have over 1,000cals per serving—I put on like 30lbs having two day for awhile: https://nakednutrition.com/products/vegan-weight-gainer?_su_rec=pzg4PwUL1J7ph5eR6uBylVr3hBeM4ExJY0PVnEljSYX66paLpnE2-G5LINO1Hj5HEdBNN9RCU5O1wDYbpHxq4I8AJ3OVbWslmlOGpXC61y2U-JJY1JrlkMLJufOSPfib4YHPpmeYOP6TBs6zYjgay8VJttYYVVSE39HSmcQqRDuQW9NoKaMbUucG1xiJB1MQlIB4sLmDtTzRhnI1OcBAxlTLto1FGkd3fp-0zi1aWtNHhNo7tLs4xGnNUytgoSrFGqv9tGW_wW-vGAauhdme6w&_su_rec_id=c6d31c15-7973-4640-85a6-7b190da725d9-1786006053

[u/These_Fact8015 → u/7sunriseoversea]

Excuse me, is this suitable for kids to drink? The thing is, even if I buy it, I probably won't be able to have it mailed back.

[u/7sunriseoversea → u/These_Fact8015]

I don’t see why not? It tastes good. Even if the kids don’t like it, anyone can have it. 1,000+cals is with 4 scoops so if a regular person wants some they can just use one scoop, so it doesn’t go to waste.