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Milk Allergy and CF
- Thread starter anonymous
- Start date
Does your child have a milk allergy or are they lactose intollerant? My daughter is extremely lactose intollerant so I use Lactaid milk. I buy rice dream ice cream bars, lactose free yogurt, peanut butter, bread and butter, avacados (3 a week), pasta with butter, a lot of meats like chicken, beef, sandwich meats, etc. I too find that if I put oil on her food is just comes through makes her uncomfortable. It has taken me a year to adjust and find foods that she likes. Keep trying and looking at all the boxes. You might also search on the internet for some dairy free recepies.
What is soya? I have noticed that if he drinks too many soy products he tends to go to the bathroom more.
He does have a true milk allergy....he breaks out around his lips, eyelids swell, and he coughs and wheezes. It is very scary...so far benadryl has worked when he accidentally eats something with milk in it. I am still hoping and praying he outgrows it. The doctors are amazed at how good he has gained weight considering his food variety is so limited. He is in the 25th percentile in weight and just a little above that in height.
He does have a true milk allergy....he breaks out around his lips, eyelids swell, and he coughs and wheezes. It is very scary...so far benadryl has worked when he accidentally eats something with milk in it. I am still hoping and praying he outgrows it. The doctors are amazed at how good he has gained weight considering his food variety is so limited. He is in the 25th percentile in weight and just a little above that in height.
My nephew has CF and is highly allergic to milk. He will be 15 this month. They said he would outgrow it, but it has never happened. And weight gain has been extremely difficult for him. He had a g-tube put in about 3 years ago, and it has helped some, but even then he is extremely thin. He was 2% body fat prior to that, and I don't know where he is now, but still not much more. Would hate to see how he would look without the g-tube. He also has to be given a special formula because of the milk allergy during night feedings in the tube.
There is a Parkay squeeze butter that he can have, that doesn't have milk. And he drinks rice dream milk, I think that is what it is called. Even antibiotics cause him problems, and he is given benadryl in his IV prior to the meds starting. I think that shop n save brand has a butter he can have as well.
My sister carries him butter with them when they travel, and they ask and request that there is no milk products to touch his food. He is highly allergic, and will get sick immediately after digesting it. Even his mouth touching it will affect him.
He truely is a challenge when it comes to CF appts and meeting with the diatricans. They are just running out of suggestions. I hope your son outgrows it, because it really has been a struggle to deal with on top of the CF needed weight gain. Good luck and just keep looking at labels and find something nice an fattening that he likes, and let him eat it whenever he pleases<img src="i/expressions/face-icon-small-smile.gif" border="0"> My nephew loves baked potatoes, eats many a day. He loves steak and chili and beef stew! Again, good luck!
There is a Parkay squeeze butter that he can have, that doesn't have milk. And he drinks rice dream milk, I think that is what it is called. Even antibiotics cause him problems, and he is given benadryl in his IV prior to the meds starting. I think that shop n save brand has a butter he can have as well.
My sister carries him butter with them when they travel, and they ask and request that there is no milk products to touch his food. He is highly allergic, and will get sick immediately after digesting it. Even his mouth touching it will affect him.
He truely is a challenge when it comes to CF appts and meeting with the diatricans. They are just running out of suggestions. I hope your son outgrows it, because it really has been a struggle to deal with on top of the CF needed weight gain. Good luck and just keep looking at labels and find something nice an fattening that he likes, and let him eat it whenever he pleases<img src="i/expressions/face-icon-small-smile.gif" border="0"> My nephew loves baked potatoes, eats many a day. He loves steak and chili and beef stew! Again, good luck!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
What is soya? I have noticed that if he drinks too many soy products he tends to go to the bathroom more.
He does have a true milk allergy....he breaks out around his lips, eyelids swell, and he coughs and wheezes. It is very scary...so far benadryl has worked when he accidentally eats something with milk in it. I am still hoping and praying he outgrows it. The doctors are amazed at how good he has gained weight considering his food variety is so limited. He is in the 25th percentile in weight and just a little above that in height.</end quote></div>
Soya milk. I was speaking to a mother of a girl in my eldest daughter's nursery class a few weeks ago and her eldest daughter was lactose intolerant, but grew out of it when she was 4 years old. She was advised by the Doc for her to drink soya milk. Hopefully he will outgrow it. You must be stressed out!
What has the Doc said?
Charlotte<img src="i/expressions/face-icon-small-confused.gif" border="0">
What is soya? I have noticed that if he drinks too many soy products he tends to go to the bathroom more.
He does have a true milk allergy....he breaks out around his lips, eyelids swell, and he coughs and wheezes. It is very scary...so far benadryl has worked when he accidentally eats something with milk in it. I am still hoping and praying he outgrows it. The doctors are amazed at how good he has gained weight considering his food variety is so limited. He is in the 25th percentile in weight and just a little above that in height.</end quote></div>
Soya milk. I was speaking to a mother of a girl in my eldest daughter's nursery class a few weeks ago and her eldest daughter was lactose intolerant, but grew out of it when she was 4 years old. She was advised by the Doc for her to drink soya milk. Hopefully he will outgrow it. You must be stressed out!
What has the Doc said?
Charlotte<img src="i/expressions/face-icon-small-confused.gif" border="0">
My daughter is allergic to milk also, though not as bad.
I make banana bread but change the recipe to cut out the milk, add extra bananas and extra squeeze parkay (instead of butter)
Soy milk is better than rice dream because it is higher in fat.
If too much Soy makes him poop more maybe add a little Soy creamer to his rice dream to increase fat content without adding too much extra soy.
If he's truly allergic to Cow's milk then probably Goat's milk will cause problems too, but our daughter is less sensitive to goat's milk. We give her goat cheese since it's higher in fat than straight milk and some of the proteins are broken down. You might want to ask your doctor about trying him with goat cheese (or sheep milk cheese for that matter, I'm not sure how different it might be from Cow's milk.)
Unfortunately, goat milk has a much stronger flavor - you may have to look around to find milder goat cheese.
I make banana bread but change the recipe to cut out the milk, add extra bananas and extra squeeze parkay (instead of butter)
Soy milk is better than rice dream because it is higher in fat.
If too much Soy makes him poop more maybe add a little Soy creamer to his rice dream to increase fat content without adding too much extra soy.
If he's truly allergic to Cow's milk then probably Goat's milk will cause problems too, but our daughter is less sensitive to goat's milk. We give her goat cheese since it's higher in fat than straight milk and some of the proteins are broken down. You might want to ask your doctor about trying him with goat cheese (or sheep milk cheese for that matter, I'm not sure how different it might be from Cow's milk.)
Unfortunately, goat milk has a much stronger flavor - you may have to look around to find milder goat cheese.
Where do you find soy creamer? That sounds like a good idea.
Charlotte....His pulmonologist seems to think he will outgrow the allergy. They dont really say too much about it because he is gaining weight and growing. He used to not even be on the growth chart and is now in the 25th percentile for weight and about the 35th for height. They actually asked us at his last visit what in the world we are doing that is making him grow so well. My mother replied "lots of prayer and lots of food". They said just keep it up! I still feed him alot of the baby food that does not contain milk. He likes it and I can slip in a jar or two between meals. I just wish he could have more of a variety. The older he gets the harder....he wants to eat what his brothers and sister are eating...he is a sport about it all though!!
Charlotte....His pulmonologist seems to think he will outgrow the allergy. They dont really say too much about it because he is gaining weight and growing. He used to not even be on the growth chart and is now in the 25th percentile for weight and about the 35th for height. They actually asked us at his last visit what in the world we are doing that is making him grow so well. My mother replied "lots of prayer and lots of food". They said just keep it up! I still feed him alot of the baby food that does not contain milk. He likes it and I can slip in a jar or two between meals. I just wish he could have more of a variety. The older he gets the harder....he wants to eat what his brothers and sister are eating...he is a sport about it all though!!
My son has a dairy sensativity and even at 23 months he still doesn't have a lick of dairy (sometimes cheese seems okay). We also feel it is a blessing in disguise the more we read and research the benefits some Cfers have when they take dairy out of their diet (causes inflammation in many people which can lead to more mucus).
Anyways, I would give a little caution in regards to just replacing every thing with soy subsititutes. Many people who can not tolerate dairy have the same reaction to too much soy. I have also found this true wiht my son when we were giving soy milk on top of soy cheeses, cream cheeses and such. What seems to work for us is lots of proteins from eggs (I hard boil about 6-10 at a time and offer them at snack times and with any breakfast that is not high in protein like pancakes). I also give lots of chicken (Bell & Evans makes the best tenders and nuggets and they are all natural) and he likes turkey now. You can also make bean dips using white beans, olive oil (not too much), avacodo, and a touch of garlic for crackers and tortilla chips. Hummus is great for dipping. I also like to use powdered egg whites to add to smoothies rather than too much soy (Just Egg Whites is the brand I think). He drinks water and Rice Dream Enriched milk (I also use it to make puddings and oatmeals). I nice blend between protein, fruits/veggies, grains, and a little soy here and there (the Veggie Slice brand cheeses are great, I even don't mind them) with these other things can really soup up their diet and you will have the benefits of great anti-inflammatory foods as well. We also do not add oils much as it messed up his enzymes/pooper. I cook with olive, walnut, canola, and flax only for the same Omega 3 benefits.
I am in the middle of creating a web site which will have a section on early nutrition. I have a chef who is going to hopefully be sharing some great recipes for non-dairy cooking and they will be high calorie yet rich in nutrients. Oh, you can also take nuts (if he isn't allergic) and flax seeds and use a coffee grinder to pulverize them and add them to smoothies too or even on top of oatmeal or soy yogurts. They add a nice nutty flavor and lots of protein and easy to digest oils.
Hope this helps. I will be posting to this board once our site is live so you can feel free to email in the in between time at jody@meta4tech.com
Warmly,
Jody
Anyways, I would give a little caution in regards to just replacing every thing with soy subsititutes. Many people who can not tolerate dairy have the same reaction to too much soy. I have also found this true wiht my son when we were giving soy milk on top of soy cheeses, cream cheeses and such. What seems to work for us is lots of proteins from eggs (I hard boil about 6-10 at a time and offer them at snack times and with any breakfast that is not high in protein like pancakes). I also give lots of chicken (Bell & Evans makes the best tenders and nuggets and they are all natural) and he likes turkey now. You can also make bean dips using white beans, olive oil (not too much), avacodo, and a touch of garlic for crackers and tortilla chips. Hummus is great for dipping. I also like to use powdered egg whites to add to smoothies rather than too much soy (Just Egg Whites is the brand I think). He drinks water and Rice Dream Enriched milk (I also use it to make puddings and oatmeals). I nice blend between protein, fruits/veggies, grains, and a little soy here and there (the Veggie Slice brand cheeses are great, I even don't mind them) with these other things can really soup up their diet and you will have the benefits of great anti-inflammatory foods as well. We also do not add oils much as it messed up his enzymes/pooper. I cook with olive, walnut, canola, and flax only for the same Omega 3 benefits.
I am in the middle of creating a web site which will have a section on early nutrition. I have a chef who is going to hopefully be sharing some great recipes for non-dairy cooking and they will be high calorie yet rich in nutrients. Oh, you can also take nuts (if he isn't allergic) and flax seeds and use a coffee grinder to pulverize them and add them to smoothies too or even on top of oatmeal or soy yogurts. They add a nice nutty flavor and lots of protein and easy to digest oils.
Hope this helps. I will be posting to this board once our site is live so you can feel free to email in the in between time at jody@meta4tech.com
Warmly,
Jody
Oh and sometimes a probiotic (acidophilus) is great for their little intestinces and can help aid in digestion. We give a cap a day to both our kids and ourselves as well and it really helps.
We have had similar experiences with our son being totally off the charts then up to the 50%. I just think their might be something to the no dairy thing but it is just a hunch. Sounds like he is doing great, but it is great to share ideas. I like the one about a little soy creamer in the Rice Dream. I might try that once a day maybe in the AM wiht breakfast.
We have had similar experiences with our son being totally off the charts then up to the 50%. I just think their might be something to the no dairy thing but it is just a hunch. Sounds like he is doing great, but it is great to share ideas. I like the one about a little soy creamer in the Rice Dream. I might try that once a day maybe in the AM wiht breakfast.
Archie is allergic to milk also but can have goats milk, so I use goats milk cheese and yoghurt. I have also just switched his formula from soy over to goats milk as well as soy doesn't seem to be too good due to all the phytgo-estrogen hormones and aluminium. I am still BF but just top up with formula from time to time. I find that coconut milk/cream is great to add to food as it is really high in fat. Archie is also allergic to peanuts although this has just been picked up from skin prick test. I suggest you try him on goats milk, its' meant to be a lot better for us anyway although it is still mucous forming. But as Jody has shown, there are heaps on things you can give instead of milk. Archie is just above 50% for height and weight. I know this may change as he grows into being a toddler and becomes fussier with food.
Good luck, food allergies are trying but there are always alternatives out there.
Good luck, food allergies are trying but there are always alternatives out there.
LeeCFMumInOz
New member
My son Joel 4 yo wCF is also Cows Milk Intolerant, which is not like lactose intolerance. Lactose Intolerance is tothe sugar in Milk, Cows Milk Intolerance is to the Cows Milk Protein in Milk. Joel suffered terrible eczema and vomiting and constipation for over a eyar til I just decided to swap him to soy formula, then just soy milk in a tetra pack (Long Life Milk Pack) Then I introduced Coconut Milk, very natural no cahnce of allergy to that, the taste leaves a bit to be desired, but Joel drinks it no probs, with the addition of some Nestles Flavoured Quik! (Powdered flavour additive)
Joel is now o Scandishake and I have worked out that even though tit is Cows Milk based, he can tolerate it in ihis Soy Milk. He also has the odd Yoghurt. It was at teh time he was still ahving 4 or more formula bottles per day that the Cows Milk Intolerance was at it's worst.
He even has a wedge of cheese everyday. SO as long as I don't give him Cow's Milk he's ok. No eczema now for 2 years. No need for horrible cortisone creams which has detrimental effects on the skin after prolonged use.
I'm back using my Laundry Balls, but even with Laundry Powder he wasn't getting eczema then.
Once dairy is ruled out of the diet, boy it makes it hard to find things to fatten them up.
You need to work out whether your child has Allergy or Intolerance. Intolerance means they can still have a bit here and there. Allergy= stay away in case of anaphylaxis. etc
Joel is now Peanut Allergic, yaya! Something else to worry about. That's scary. But no need to carry epi pen around as yet! (epi pen = shot of adrenalin)
Joel is now o Scandishake and I have worked out that even though tit is Cows Milk based, he can tolerate it in ihis Soy Milk. He also has the odd Yoghurt. It was at teh time he was still ahving 4 or more formula bottles per day that the Cows Milk Intolerance was at it's worst.
He even has a wedge of cheese everyday. SO as long as I don't give him Cow's Milk he's ok. No eczema now for 2 years. No need for horrible cortisone creams which has detrimental effects on the skin after prolonged use.
I'm back using my Laundry Balls, but even with Laundry Powder he wasn't getting eczema then.
Once dairy is ruled out of the diet, boy it makes it hard to find things to fatten them up.
You need to work out whether your child has Allergy or Intolerance. Intolerance means they can still have a bit here and there. Allergy= stay away in case of anaphylaxis. etc
Joel is now Peanut Allergic, yaya! Something else to worry about. That's scary. But no need to carry epi pen around as yet! (epi pen = shot of adrenalin)
My son has CF but not milk allergy - but one of his playmates is horribly allergic and it's been interesting to note that milk solids appear all over the place in snackfoods. But equally interesting to stumble on things that are milk-free. The latest in the milk-free surprise category were chocolate covered MoonPies.