This entry might be long but it's worth reading. It's not just for this particular group of patients but to all mothers, takers and carers out there to monitor and to watch our children's intake of nutritions. Prevention is better than cure.
I've become a member to a yahoogroup - myspecialchildren. As I have been in a room with a neprotic syndrome kid, and of course her mom and sister (nobody was taking care of his sis that moment, his mom has to take care both in the hospital), the latest topic is very much interesting for me to share with the readers.
From my previous post about this:
From Langone Medical Center:
Nutritional requirements for a child with nephrotic syndrome (source here):
Hope this valuable information will help us in providing healthy foods to our children. If you want to listen personal experience from the patient and mother themselves, you can ask for their phone number through my mail.
I've become a member to a yahoogroup - myspecialchildren. As I have been in a room with a neprotic syndrome kid, and of course her mom and sister (nobody was taking care of his sis that moment, his mom has to take care both in the hospital), the latest topic is very much interesting for me to share with the readers.
FW: [Relexjap] SWR - Penawar Penyakit Nefrotik Syndrome
Posted by: "A.Rahim, Noraini" Noraini.ARahim@ap.sony.com nza1202
Tue Jun 16, 2009 6:53 pm (PDT)
FYI,
Mungkin ada sahabat2 yg boleh menolong.... ..Ibu ini....
saya cuma memanjangkan email ni kepada sesiapa yg boleh menolong....
From: Relexjap@yahoogroup s.com [mailto:Relexjap@yahoogroup s.com] On
Behalf Of alia_abil
Sent: Tuesday, June 16, 2009 2:50 PM
To: Relexjap@yahoogroup s.com
Subject: [Relexjap] SWR - Penawar Penyakit Nefrotik Syndrome
Assalammualaikum,
Nama saya, Alia.... Ibu kepada Muhammad Nabil Fakhrullah berusia hampir 4 tahun. Disahkan menghidap sindrom nefrotik pada Aidiladha baru baru ini.
Sindrom Nefrotik adalah kebocoran pada penapis buah pinggang yang menyebabkan tubuh seseorang itu membengkak. Setakat ini anak saya diberikan prednosolone oleh Dr. Ubat ini mempunyai kesan sampingan yang begitu menakutkan. Antaranya adalah boleh menyebabkan katarak mata dan kerapuhan tulang. Menurut Dr. Nabil perlu mengambil ubat ni dalam jangkamasa yang lama ... mungkin bertahun tahun.
Nabil masih kecil untuk memahami segalanya. Dia perlu berpantang - tak boleh makan benda masin. Pernah juga dia menangis nangis minta dibawa ke KFC. Tapi apakan daya kami. Sedih juga memikirkannya. Lebih lebih lagi memikirkan kami pernah kehilangan anak sulung ketika berusia setahun. Diet nabil - makanannya perlu kurang garam. No MSG, Maggi dan macam macam lagi.
Saya merayu kepada semua yang mempunyai pengalaman berkenaan penyakit ini untuk berkongsi dengan saya. Banyak lagi yang saya tak faham mengenai penyakit ini. Atau mungkin ada sesiapa yang tahu tentang penawarnya.
Salam,
Alia
WPKL
From my previous post about this:
Childhood nephrotic syndrome can occur at any age but is most common between the ages of 1-1/2 and 8 years. It seems to affect boys more often than girls.
From Langone Medical Center:
Nephrotic Syndrome
Pronounced: Neh-frah-tik sin-drome
by Laurie LaRusso, MS, ELS
Definition
Nephrotic syndrome occurs when the kidneys let protein leak into the urine. When this happens, there is too little protein in the blood. Low protein in the blood allows fluid to leak out of the blood stream and into body tissues.
Nephrotic syndrome is a collection of the following signs and symptoms:High protein in the urine Low protein in the blood Swelling of body tissues High cholesterol in the blood
Nephrotic syndrome is not a disease itself. It is a set of signs and symptoms that indicate another disease has damaged the kidneys, and they are no longer working properly.
This is a serious condition that requires care from your doctor. Contact your doctor if you think you may have nephrotic syndrome.
[...]
Nutritional requirements for a child with nephrotic syndrome (source here):
Children with nephrotic syndrome may have trouble regulating their body's water balance. This can cause fluid retention (also known as edema). The diet for a child with nephrotic syndrome may include a sodium and fluid restriction. These restrictions in the diet may help to regulate your child's fluid balance. Any food that is liquid at room temperature counts as a fluid. This includes the following:milk, water, juice, soda, and other beverages ice cubes ice cream, sherbet, frozen yogurt popsicles gelatin soup pudding
Helpful hints for restricting your child's fluid intake:
Your child's physician will discuss with you how much fluid your child should consume on a daily basis, based on his/her medical condition. The following recommendations may help with effectively monitoring and restricting your child's fluid intake. Consult your child's physician for additional information.Identify the amount of fluid your child's favorite glass or cup holds, so that you do not have to measure your fluids every time. Try using small glasses. Small amounts of fluid in a big glass look like less than small amounts of fluid in a small glass. Keep track of how much fluid your child drinks each day; record amounts on a chart by the refrigerator, or another convenient place. Avoid salty foods, as they increase thirst. Iced tea and lemonade quench thirst better than soda. Frozen pieces of fruit (i.e., melon, berries, grapes) can help quench thirst. Chewing gum or hard candy can help to quench thirst. Have your child rinse his/her mouth with cold water, but do not swallow. Sucking on a lemon wedge can stimulate saliva and moisten the mouth. Splashing cold water on your child's face and body can help him/her cool off. Staying out of the sun can help keep your child from becoming thirsty on a hot day.
Helpful fluid conversions:
Your child's physician or dietitian will advise you on how much fluid your child may have each day. This amount is usually given in ounces, cups, or cc.
1 ounce = 30cc
1 cup = 8 ounces = 240cc
1 pint = 2 cups = 16 ounces = 480cc
1 quart = 4 cups = 32 ounces = 960cc
1 tablespoon = 1/2 ounce = 15cc
1 teaspoon = 5cc
Following a low-sodium diet:
A low-sodium diet or salt restriction may be used to help prevent or reduce fluid retention in your child's body. The amount of sodium or salt allowed in your child's diet depends on your child's medical condition. Your child's physician or dietitian will determine the amount of sodium allowed in your child's diet. This is usually expressed in milligrams (mg) per day. Some common sodium restrictions include 2,000, 3,000, or 4,000 mg per day. With most sodium-restricted diets, high-sodium foods are limited and salt is not allowed in food preparation or at the table.
What foods are high in sodium?
The following foods are high in sodium and should be avoided if your child has been prescribed a low-sodium diet:canned foods (vegetables, meats, pasta meals) processed foods (meats such as bologna, pepperoni, salami, hot dogs, sausage)
cheesedried pasta and rice mixes soups (canned and dried) snack foods (chips, popcorn, pretzels, cheese puffs, salted nuts, etc.) dips, sauces, and salad dressings
What foods are low in sodium?plain breads, cereals, rice, and pasta (not dried pasta or rice mixes) vegetables and fruits (fresh or frozen) meats (fresh cuts; not processed meats) milk and yogurt (these tend to be moderate in sodium) beverages such as juices, tea, fruit drink/punch, and soda (sports drinks have sodium so these may need to be limited)
What are low-sodium seasonings?
The following are considered low-sodium seasonings and do not require restriction:
What seasonings are high in sodium?
The following seasonings are high in sodium, but may be used in limited amounts, in most cases:
Limit the following seasonings to 1 tablespoon per meal:barbecue sauce cocktail sauce ketchup mustard hot sauce low-calorie salad dressing steak sauce
How can I help my child to reduce his/her salt intake?
The following recommendations may help to decrease the amount of salt in your child's diet:Do not use salt in cooking or at the table. Cook with herbs and spices or, if permitted by your child's physician, use salt substitutes such as Mrs. Dash®, NuSalt®, NoSalt®, or Morton's Lite Salt®. Seasonings with salt in the name, such as garlic salt, are high in sodium. When seasoning foods, use fresh garlic or garlic powder, use onion powder instead of onion salt, and try celery seed rather that celery salt. Eat home-prepared meals, using fresh ingredients, instead of canned, frozen, or packaged meals. When dining out, request dressings and sauces on the side for your child. Ask the chef to hold the salt in food preparation.
Sample plan for 3,000 mg sodium restriction:
In many cases with nephrotic syndrome, your child may be placed on a 3,000 mg per day sodium-restricted diet. If this is the case, the following meal plan has been designed as an example to meet this restriction:
Definitions for sodium claims on food labels:
As you prepare foods for your child, it is important to read food labels carefully. Consider the following:
Hope this valuable information will help us in providing healthy foods to our children. If you want to listen personal experience from the patient and mother themselves, you can ask for their phone number through my mail.
3 comments:
Hi,
We have just added your latest post "Diet for patient of neprotic syndrome" to our Food Directory . You can check the inclusion of the post here . We are delighted to invite you to submit all your future posts to the directory for getting a huge base of visitors to your website and gaining a valuable backlink to your site.
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http://www.foodnrecipes.info
Marshall:
Thanks.. I've visited the site and registered. And thanks for visiting this blog.
Regards.
Thanks for the info. Sayalah Ibu pada Muhammad Nabil Fakhrullah. Secara tak sengaja saya terbuka blog puan ni. Dan saya dah baca. Terima kasih banyak banyakye. Banyak info yang berguna dalam ni untuk nabil. By the way. Salam buat salam buat syafiah. semoga puan sekeluarga tabah menghadapi dugaan hidup ini. Saya juga pernah ada anak cerebral palsy. Anak sulung saya yang meninggal waktu berusia 1 tahun 1 bulan. Yang kedua nabil nefrotik syndrome dan yang ketiga haiqal hampir setahun mengidap penyakit hyper airway desease. banyak yg boleh dikongsikan. tapi sekarang anak sedang menangis. nanti di waktu tenang saya mahu membaca keseluruhan blog ini.
Salam
Alia
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