Special Diets

Iridescent - posted on 10/27/2010

Lol! We have the same joke! Sadly, it has to be hard liquor as beer still has too much protein.

Tonya - posted on 10/27/2010

my niece has OTC and can't have protein. she can have lots of sugar and all the liqour she wants haha

Iridescent - posted on 10/25/2010

Our GI warned us that that may very well happen (clear in one scope, reactive in the next). It all depends on what the person is reacting to and when they were last exposed; as little as a few days to a week without being exposed can cause a false negative in some. A friend of mine on facebook has that commonly happen to her, and she is scoped every few months.

Chelle - posted on 10/25/2010

Also my son is on Neocate Jr, unflavored and he loves it.

Chelle - posted on 10/25/2010

My son is allergic to milk and soy. They recently found blood still in his stool and are going to do an endoscopy and colonoscopy again and test for EE and celiacs and all that jazz. :/

For those whose kids have eosinophilic disorders, were any of your kids fine in their first scopes and biopsies and then they did another scope and found they did indeed have it?

Iridescent - posted on 10/25/2010

It's possible to be allergic to anything, honestly. Our ped was telling us we were wrong to eliminate tomatoes because he couldn't be allergic to them...WRONG! It's one of his proven protein allergies. Stupid assumptions.

Ann Marie - posted on 10/25/2010

Dawn, my daughter is also allergic to oranges, severly allergic. She is not able to even touch a surface where they have been. So many people think it is impossible to be allergic to them. My sister is also allergic to them.

Lana - posted on 10/22/2010

My 4 yo daughter has not seen a doctor but when i spoke to our local GP about what was happening when she had cows milk he said that she was probably A2 protein intolerant. Right from 3 weeks old I couldn't breast feed as every time I tried she would break out in a rash around her mouth. As we ventured into the feeding stage we found she could eat cheese and yoghurt, but she cant handle ice cream, cream or flavoured chips as the use a milk base in the flavouring process. My daughters lips started turning blue and swelling. My 2 yo son has an umbilical hernia and we have been told that when he gets the slightest bit sick he becomes milk intolerant as well. For those with lactose intolerances in Australia I would like to suggest a milk I use for my kids that is lactose and gluten free it is made by Pauls it is called Zymil it has a little bit of a sweet taste to start with but after while you don't notice that i use it for the whole family. I don't know if it is available in the US.

Dawn - posted on 10/22/2010

I have twin boys, who will be 9 next month. Travis, the older one, have servere food allergies. Casine (which is milk protein), chicken, gluten, wheat, mushrooms, cinnamon, licorice, anise, fennal, oranges, soy, fish, shellfish, coconut, cotton seed oil, peanuts and treenuts. Oranges, shellfish, fennal, anis, licorice and peanuts gives him problems when he come into contact with them. He also have a lot of enviromental allergies as well. His twin Tyller is allergic to bread mold and enviromental allergies.

I want to let you know that you ladies are very strong. Not many people understand how much we have to handle and how strong we have to be to even watch our children go through this.

Many hugs and kisses to all of you.

Ann Marie - posted on 10/22/2010

I have read, not tried my daughter is not lactose intolerant, that people who are lactose intolerant can drink raw milk. Milk that you buy in a regular grocery store has been homogenized (sp?) which breaks down the fat to a point that the human body cannot digest or absorb it properly. We do get raw milk sometimes but where we live it is illegal unless you own a share in the cow. Make sure you know the farm and how they are handling the cows and equipment.

Gena - posted on 10/22/2010

Yes my middle child (with DS) cannot have dairy or wheat/glutten. We have adapted but it was hard at first. Where do you live? we lived in Ca and when we were living there we drank RAW milk and it was SO helpful! Most folks are allergic to what happens to milk when it is pasteurized. Go to Organic Pastures Dairy to learn more. It's so good for your childrens gut and helps to keep them healthy. I now live in Texas and we cannot drink it here and have SEEN a difference in my girls health! go here:http://mommymattersonline.ning.com/event...
to get more support
Gena

Lynn - posted on 10/20/2010

we have 2 older boys also. They will go with us. The first appointment is 5 days long and done on an out patient basis.

Iridescent - posted on 10/20/2010

That poor baby! Things like that are NOT behavior; some people are so stupid despite the degrees they hold. We haven't even gotten that far yet (finding the clinic to see and find if it's covered) because they are simply so far away. It appears about 1000 miles minimum, and with 5 kids...they'd have to come with because it's a long trip.

Lynn - posted on 10/20/2010

Jaden began vomiting when we introduced food at the age of 8 months. He has vomited every day of his life until now. In August he began vomiting blood. All the medical providers we are seeing were convinced it was a behavior issue? when they did his last scope in August his insides looked like raw meat. We are hoping to go to the Cincinatti Childrens hospital for Eosinophilic disease. Currently it is held up by our insurance.

Iridescent - posted on 10/20/2010

That's great that he takes it! Justin was already off all formula, and on foods...and got sicker and sicker over the course of the past year. Last spring he had 2 food allergies and 2 food intolerances, then in the summer he got another allergy. But 2 months ago it's like a freight train hit us and he became allergic to everything. We only left corn, apples, marshmallows and unprocessed meats in his diet, and added the Neocate products, but a solid 2 weeks with no contamination and diarrhea and he's still showing symptoms during the scans (although down to 2-4 soiled diapers per day, from 6-8). He does react to citrus though, so now we're wondering if the EO28 might be causing this too? Or if we have to simply take every food out of his diet and use his tube once he gets it for Neocate Jr only, until scans show he's ok, then trial? Are you able to go to a clinic that treats EE? We live so far away we don't know if we can even make yearly trips yet.

Lynn - posted on 10/20/2010

my son drinks Neocate Junior unflavored. He would not touch any of the flavored formulas. due to other medical issues and developmental delayshe is still on a bottle. We cut the formula he liked with the neocate and slowly switched. currently he is drinking 8 oz of the formula every 2 hours.

Iridescent - posted on 10/20/2010

Lynn, that is also what we're facing with Justin. He is 3. Does he take the formula orally? We've tried the Neocate Jr (both types) and tried flavored, and he hates it! He's on EO28 Splash but not taking half his needs even.

Lynn - posted on 10/20/2010

My son is 5. He cannot have any food! He has Peptic Esophagitis & Eosinophilic Esophagitis. He has tested negative for all allergies. When he has food he vomits continuously which has caused ulcers and erosions. He has been food free since 8/3. He has a special formula, orally every 2 hours.

Iridescent - posted on 10/19/2010

Julie, we just had the Upper GI done today for Justin and while it doesn't appear he has the Eosinophilic Esophagitis the doctor was suggesting he may have, it does appear he has Eosinophilic Gastroenteritis. His scope is being scheduled and we're being called with the time tomorrow, plus his G-tube 2 days later the doctor wants. He's reacting to everything! Literally! The doctor today said his stomach also looked like he may have Dumping Syndrome, and the GI was thinking Leaky Gut Syndrome as a result of so much damage. Did your daughter's ever calm down, or was she not reacting to everything?

Holly - posted on 10/19/2010

Wow. You have your hands full Sabrina. I would like to piggyback on this request and add a reguest for info from those of you who's kids have gone through bullying about their special diets.

Otillua - posted on 10/19/2010

my 4 yr old cant have whole milk at all thats it reading through this im very thankful

Julie - posted on 10/19/2010

I'm there with you all too! McKenzie, now almost 5, had chronic diarrhea her whole life. She never tested allergic to anything but was obviously intolerant of something! We mixed matched foods and diets forever. She was diagnosed with Eosinophilic Esophagitis which we narrowed down to being caused from dairy. Most of her diarrhea was being caused from dairy as well ~ makes her stool very acidic and burns her skin. She also does not produce growth hormone, so she is very tiny. She was only 11lbs at 1 years old. In January, she became very sick and her kidneys were shutting down. We figured out after about two weeks in the hospital that she is Glucose Intolerant. That diet has been lots of fun!!! She can basically only have fruits, veggies and protiens. We really have to watch eating out - PF Changs is awesome for children with allergies. We've had our share of issues with this and since McKenzie doesn't get all of the minerals and vitamins she needs, I did find one that provides everything without the fillers, preservatives and sugars. It's been really helping her nutrionally. We also give her a Tums every day for calcium. We still do not have an answer to the glucose intolerance, but we are working on it. Luckily she seems to tolerate fructose, otherwise she would really be craving sugar. She's also deaf so she craves the stimulation of "crunchy" foods ~ there's aren't many that are grain, dairy and sugar free! ; ) Hang in there! It's not easy, but I sure have learned alot about what's in your food!!! Ewwwww..... : )

Evelin - posted on 10/19/2010

Awww poor things! I can definitely relate. My son Andre has severe food allergies and sensitivities. He went into anaphylactic shock when he was two the first time, as has gone into it about 4 times since! He is severely allergic to: strawberries, kiwi, sesame seeds and is gluten, soy, and lactose sensitive. My contradiction lies in the gluten and sesame seed....I'm also gluten sensitive so I'm mostly gluten free as well. However, MOST gluten-free products rely on other grains such as rice and u guessed it seeds, such as sesame to gain the same texture and such. Soy is found in EVERY processed food under the sun. So I've learned to bake extremely well, we've gone organic, and our meats/poultry are also organic and free range (since they feed regular cows/chickens wheat), we eat mostly veggies, and the kids never buy the school lunch. Though living this way (organic) is SUPER pricey, it's worked out for us. We recently underwent a HUGE lifestyle change all in the name of health by moving to the country. We now buy all our organics at a local farm which has helped lower our food bills. My advice to you is to find a nutritionist that can help you make good food choices and can even provide modified recipes tailored to your children's needs until you get the hang of it. Keep up the good work! :) If you are in the Northern Jersey area, I can provide you with my sister in law's information- she's a nutritionist.

Iridescent - posted on 10/18/2010

Very few restaurants use care with food allergies. The ones we've gone to, the only two that were careful and we're able to safely feed the kids are Olive Garden and Applebee's. Costs more, but your child isn't sick!

Sabrina, depending on how your child's health is and diet once she becomes school age, if she still has a diet requiring monitoring you can request (aka demand) an aide. They are also required to provide an appropriate safe meal for your child, at their expense. Schools are getting much better at this! :)

Sabrina - posted on 10/18/2010

My 2 year old has the same problem. Anything made with milk, soy or fish cause her to have a severe allergic reaction. Even the burgers cause her problems because they do not clean the grills and they are cooked in grease with cheese. Theres a lot of places that she can't eat at because of that problem. We've even tried giving her lactaid pills but they didn't work on her. I'm also allergic to milk products but never as bad as my daughter. The redness could easily be from the oil they use to cook the food in, the breading, etc. McDonald's isn't exactly clean.

Sabrina - posted on 10/18/2010

Oh I understand it all. I'm amazed how much that my youngest is allowed right now. My family is still in the denial stage and think that I am overly protective over their diets. Were about to move again but this time to SC and my husband's family is just as bad. But both the girls are able to have almost every fruit and vegetable out there. Thankfully though the girls would rather have that over meats and candy. I've tried the tofu but its actually a lot worse for my youngest. I really don't know what I'm going to do when they enter school. I mean I can send them a lunch but whose to say that they will eat it and not eat someone elses food.

Jenny - posted on 10/17/2010

My little daughter can not eat the chicken nuggets at McDonalds because it makes her hands turn re and her cheeks. I figured they must have milk in them. Thank you for letting me know. We usually only do a hamburger for her and she prefers the apples.

Iridescent - posted on 10/17/2010

That does make complete sense. It's good you have seen a doctor regarding them where you can, in both children. I know the mouth ulcers are so horribly painful! I get them, but haven't been able to pinpoint the cause despite trying for so long; I know it's a common ingredient in some things, but not which one. Sores like that...yes, avoid.

Jenny - posted on 10/17/2010

My older daughters are intolerances and our allergy doctor said that we could either stay away from them or try them in moderation. The honey he said to stay away from as her mouth breaks out. As far as my little one, our allergy doctor said that the lactose intolerance we should try and keep lactose out of her diet and we haven't seen him for her other allergies. She has sensory processing disorder and has a hard time being touched. It has just been easier to keep these foods out of her diet.

Iridescent - posted on 10/17/2010

http://en.wikipedia.org/wiki/Food_intole... - Intolerances, which list all the symptoms you describe very well.

http://en.wikipedia.org/wiki/Allergy#Sig... - allergies, which don't list the constipation, mouth ulcers.

You're likely dealing with a combination of them, but it is so vital to know. If it's an allergy to milk for example, you MUST read every label for whey, casein, all milk products, plus be aware of where and how cross contamination occurs (McDonald's has milk in their fries and chicken nuggets, Burger King has milk in their chicken nuggets)... If it's an intolerance, the small amount of these items simply isn't an issue for most people, and the great majority never realize it. You can't even find that information in their allergen brochure! But we checked, and it is there.

Iridescent - posted on 10/17/2010

Jenny, I'd suggest you set up an appointment with an allergy doctor as a lot of the symptoms you're listing simply don't go with allergies, nor the fact that even small amounts of the food being tolerated. They may easily be intolerances, but there is a huge difference between the two. It still does restrict the diet quite a bit. Intolerances can be treated sometimes, a bit easier than actual allergies, and doing so might help expand your children's diets.

Jenny - posted on 10/17/2010

My little daughter is allergic to milk, lactose, artificial sweetener, soy, rice, and goats milk. She drinks a potato based powdered milk called Dairy Free. If she eats or drinks any of those things except for the artificial sweeteners, she becomes constipated, with a bloated belly and exima, the artificial sweeteners cause vomiting. My older daughter is alletgic to peas, carrots, chocolate and honey. Her's aren't as severe as my little one. She can have chocolate in very limited amounts and depending on what kind, and the peas and carrots give her diahera. The honey makes her mouth break out. We didn't find out with my little one till she was two that she was lactose intolerant and then we found out from trial and err that she was allergic to every thing else. She was formula fed as an infant in I think that some of her weight and growth are from being allergic to her formula. She also has PVL and CP. She is 6 1/2 years old and is 40 inches tall ( I think) and 28 lbs. She wears 3 t clothes. She was first diagnosed as being developmentally delayed, failure to thrive because she wasn't gaining weight as a baby.

Iridescent - posted on 10/17/2010

Yes. It was more of a problem when they were younger, and with any new changes. My family thought I was being overbearing, hypochondriac...causing these problems and making the doctors diagnose diseases that don't exist. I wish! Food is such an integral part of our society that few people think to ask mom or dad if it's ok to give baby a cracker, or toddler whatever they request...and we've had to leave many family gatherings as a result.

We have to weigh out all of Cassie's food on a digital gram scale. Nearly every food contains protein, so we have to calculate each item and weigh them out, then weigh when she's done eating and calculate how much she received. 1 teaspoon is ~5 grams, which is 1 gram of protein. For a 1 year old, 4 teaspoons to 6 teaspoons is double what Cassie was allowed at the same age of a "protein" item, and she's still able to eat fruits, veggies, candy, juice, bread... We have to weigh those as well. It's a bit easier right now because we've been doing this for so long, but it's wearing. The constant math and stress and planning, some days she's hungry and some days won't eat. It's hard.

Cassie is now 39.5 inches tall and 36 pounds! Very good proportions.

Justin is 39.5 inches tall and down to 33 pounds last week - 6.75 pounds less than he's ever weighed, despite being proportional, and shows how severely he's losing weight quickly from what is wrong. His grandma thought we were insane when we banned milk and tomato. She kept saying he needs them to live. NO! She was raised to believe that, but it is not true! Most recently when he was put on the formula (she works in the pharmacy) she came over after work to find out what was going on, since she was too busy at work that day to talk much. He was a limp little rag doll. She realized how ill he is, and is no longer fighting us. Now, we just hope he lives.

Kaylee is 38 inches tall and 28 pounds. She's pretty significantly underweight, but when we got custody of her she was, too, from severe malnutrition. She's doing much better now and all her nutritional labs showing she is getting enough in every area (we get them drawn every 6 months now that she's stable), and we feed her very often, 5-6 meals per day. A feeding tube is not a consideration for her since she's nutritionally stable and continuously growing, albeit slowly.

When your little one goes in for allergy testing, you can request they also draw the immunity labs - IgA, IgG, IgM, IgE and IgD. Problems with them cause many problems, and most are easily treated! It's also very very common (1:300 or more). It's actually Total IgA Deficiency that has caused Justin's problems, all except his autism and hypotonia (that form of immune disorder is very rare though thank god), and it was the allergy doctor that was intelligent enough to draw it.

Sabrina - posted on 10/17/2010

Right now my 1 year olds protein limit has to be measured by teaspoons. Shes allowed 6 teaspoons at the maximum but should stay within 4 teaspoons. My 2 year old has to go this week for allergy testing she had to have surgery last week because her nose was completely blocked off by large amounts of snot and her nose was completely inflammed. My oldest was under weight until she was 18 months when they realized that she was severely allergic to milk products. She was on Allimentum (sp?) but now shes off of it. I've been adding breast milk into some of her meals since her younger sister is breast feed because of her problems. The Dr's almost did a feeding tube with my oldest but she finally reached 25 lbs by her 2nd birthday. Its just so hard to find meals that they can both have that wont mess with them. My family doesn't understand why they are on a special diet and always try to give them whatever they can find... Everytime I have to bring them to the Dr's office to take care of this problem. Do you have that problem as well?

Iridescent - posted on 10/17/2010

Oh thank God! I'm so glad someone else has this issue as well! It's so hard to find others that can even relate to ONE!

Our son Justin has just been tentatively diagnosed with Eosinophilic Esophagitis/Gastroenteritis. He is reacting to everything and just started on an elemental diet to be supplemented with foods he doesn't react to (ie marshmallow, mustard, salt, unprocessed meats, water, corn). He's getting a feeding tube within the next couple weeks. Before this fall, he was allergic to milk and tomato, then developed allergies to soy, citrus, goat's milk, wheat, rice, then it was just everything all at once. The first are full allergies by skin testing; the more recent seem to be eosinophilic reaction. They said he's never going to recover fully, will always need a feeding tube, and may be able to get a couple reactionary foods back in the future, IF we can get to a clinic that treats it (right now, not an option). His scopes and such are all very soon, it appears it will be via emergency surgery after his upper GI on Tuesday night.

Kaylee is underweight and on a high protein, high fat diet. Not too hard at all!

Cassie has OTC Deficiency (ornithine transcarbamylase deficiency) and can't have protein. We have to count it in tenths of grams per day, total to be between 10.0-13.0g per day right now. She's also on formula and will be for life, low protein but contains all her vitamins and minerals that she can't get from foods thanks to her disease. She has a feeding tube as well because she has a low stomach volume and needs continuous feeds through the night for that and hypoglycemia.

All 3 of these kids are 3 years old.

What is your child's protein limit?