As I've mentioned before, my son passed a baked milk challenge last summer. Even though he ate a milk CUSTARD during the challenge, we've had a lot of trouble getting our heads around what's required to dose him with baked milk each day. To complicate things, he seems to be able to tolerate baked milk in most foods, but baked cheese definitely still causes a reaction.
After we learned that some things will still cause a reaction (although all have been relatively minor), we lost our enthusiasm. Since we need to be prepared for reactions at any time, we have to only dose after school and far enough away from bedtime that we can account for biphasic reactions. That means his milk has to be done as soon as he gets home from school, while my husband is still at work. The hospital is 45 minutes during rush hour.
After we were scolded by the doctor for not keeping up with this, we've been trying to figure out how to ramp up our tolerance for anxiety along with his tolerance for milk. The daily dose has become Pepperidge Farm cinnamon bread. It has so little milk in it that he's had no trouble at all.
A few weeks ago, I discovered that Domino's actually offers both a pizza crust (thin) and sauce (plain) that are milk free! A year ago, we would have never considered this because of all the cross-contamination issues. However...with baked milk cleared, we gave it a shot. I'm happy to report he had no problems, although my son did comment "your homemade pizza is SO much better." Score one for mommy! But...having a delivery pizza option is one more important step toward independence at college.
Is it always risk free? Well, no...because if someone contaminates it with raw cheese and the dose is enough, he could still have a reaction. The hope is, though, that the baked milk dosage will some day also raise his tolerance to raw milk, so the small cross-reactions don't occur any more. Time will tell.
Cross-reactivity between fenugreek, a spice used quite often in Indian dishes, and peanut is something that has only recently been studied and not well communicated. I'm afraid people are dying because they are unfamiliar with the high level of cross-reactivity between this herb and peanut. Make sure you know the ingredients in your curry spices!
How do you know how much milk is in pepperidge farm cinn bread? Can you figure out how much per slice?
ReplyDeleteHi kmartin:
ReplyDeleteThe ingredients list for the bread actually indicates the whey in it is less than 2%. It's probably as little milk as we could give him!
We do need to ramp it up. We'll probably start with baked custards next, since they're in the oven for 30+ minutes.
Are you doing baked milk dosing?
FAB
Thanks for the great info. Like you, we need to "step it up a bit" too. Custard is a thought.
ReplyDeleteI'm on it...I'm on it!
I was wondering how to figure out the baked milk dosage in the pepperidge farm cinn bread and was very interested when you happened to mention it - thinking maybe you knew how to figure out the exact amount.
ReplyDeleteI have a 2.5 yr with a dairy allergy. We started seeing an allergist in December. Up to that point we have been careful but not really either. Then, over Christmas she had a scary reaction to potato bread. We just did a food challenge with baked milk and she failed after one bite.
All that being said, in the past she would eat 3 pieces of the pepperidge farm cinn bread and she has eaten english muffins. But, then I started buying Nature's Own because it was less expensive and we moved away from English Muffins just because. So, it's been months since we've had either. I'm just wondering if she could still eat those things and would it ultimately be a benefit to us? Or does the reaction and food challenge definitely indicate she can't?
After reading your post about Total Avoidance I don't want to just "give up." We also eat Italian bread with caseinate. The last time we had it was in January. Wondering if we can still eat this and if would be helpful as well. After the food challenge I'm more paranoid but do I really need to be, is what I ask myself?
KM, I think you probably need to have a talk with your child's allergist about all this.
ReplyDeleteI will tell you, though, that our allergist says to give our child the foods he can tolerate. However, we've grown comfortable (or as comfortable as you can get) with the possibility of reactions.
It may be your daughter tolerates the breads because the amount of milk in them doesn't meet the magical threshold to tip her over into a reaction. It may be that certain types of proteins are more of a problem for her than others. In addition to casein and whey, there are several other allergic proteins in milk:
http://classes.ansci.illinois.edu/ansc438/milkcompsynth/milkcomp_protein.html
It could also be that your daughter's allergies are changing. She may be growing more allergic, in which case giving these foods would be a bad idea because they're going to cause reactions.
All of this needs to be considered in the context of her medical history, how severe her reactions have been, RAST levels, etc. It can be hard to get opinions out of doctors but you really have to hammer away until you come to a decision that works for you guys.
P.S. To figure the dose, it would be the weight (454g) / 2% = 9g. Then divide the 9g by the 16 slices in a bag and you get about 1/2 gram of whey per slice. If you figure a tablespoon is roughly 15g (hard to measure since one is weight, one volume), that's not very much at all.
Thank you. I still have a lot of questions for our doctor and realize we need to make an appt. Have you seen more than one allergist and would you recommend doing so?
ReplyDeleteKM, we see one of the leading specialists in the country who specifically focuses on pediatric food allergies. However, when we want advice about introducing foods and LIVING with FA, we go to one of his partners, my husband's doctor. That doctor has a child with a PA and it makes all the difference.
ReplyDeleteWhat I'm saying is that you definitely need to find a medical professional you're comfortable with, someone who actually helps. Ideally, it would be your allergist, but if you can work out a plan with your pediatrician or any other doctor with whom you have a relationship, I would go for it.
(And yes, if you're not getting any direction from your allergist, shop around.)
The other thing we sometimes do is make an appointment just to talk. When the appointment is taken up with scratch/RAST testing or spirometry, it's tough to get all your questions answered. Making an appointment just for the questions is perfectly appropriate.
ReplyDeleteFenugreek is commonly used as a supplement to help with milk supply for nursing mothers. I used it regularly while breastfeeding my non-allergic child; cannot recall if I used it with my allergic one.
ReplyDeleteI used fenugreek to increase my milk production with my allergic child and of course she is allergic to fenugreek, peanuts, and chick peas, along with all of her other food allergies. This explains why she would projectile vomit my breast milk across the room. We are Indian and she reacted to some Indian food that I didn't think had anything in it other than cumin and mustard seeds, which she normally fine with, and then found out that it did have fenugreek. After finding out it is in the child pea and peanut family, I put two and two together and realized she is allergic to fenugreek. But of course our allergist had never heard of it and non-Indians have also are unfamilar with it. Glad to see that a connection is finally being made so people will know to avoid it if they have a peanut allergy! Thanks for sharing this information.
ReplyDeleteHi I just came across your blog. Very helpful. Do you have the baked custard recipe you used?
ReplyDeleteHi Soma, glad you found me! I typically just use a standard cookbook custard recipe and substitute Rice Dream in place of the milk. The custard bakes flatter and requires longer in the oven, but otherwise it has worked fine (the eggs provide the lattice to get it to hold together).
ReplyDeleteI think what I did for the baked milk trial was to mix up a regular custard recipe with 1 cup of milk in it and bake it in cupcake papers.
1 cup cow's milk
1 cup Rice Dream
1/3 cup sugar
2 Tbsp. corn starch
3 eggs
1 tsp. vanilla
2 tsp. spices (I use a mix with cinnamon, cardamom, etc.)
I then poured this into 8 cupcake papers and baked, so when he got one at the trial he was eating 1/8 cup milk. There are about 8 grams of protein in a cup of milk, so that's 1000mg dose - a pretty good test. We've stopped doing baked milk at this point, but I was doing baked recipes with half the milk/butter real when we quit.
Thanks for the custard recipe. This is a great blog. I was just told by the allergist that I should make muffins for my son for his milk allergy. I am trying to do the baked milk therapy. By chance, do you have any suggestions or recipes? I have search all over the web without luck. I appreciate the help/guidance.
ReplyDeleteHi Concerned Mom:
ReplyDeleteI would check in with your allergist to see how much total milk they want in the final muffins. Our allergist told us to make anything using a regular recipe as long as it baked a full 30 minutes or more. Muffins don't bake that long, which is why we went with custard.
The Allergist Mom did post a photo with a baked muffin recipe a couple of weeks back:
https://www.facebook.com/photo.php?fbid=454855444534656&set=a.344795735540628.78184.282537228433146&type=1&theater
Do make sure you talk to your allergist and do the initial trial in his/her office, though! 20% of the kids who do this cannot tolerate baked milk and the reactions can be severe.
FAB
Where can I find out more about the baked milk studies? Are there any in California? Thanks!
ReplyDeleteJake, you can always use the government site to search for clinical trials:
ReplyDeletehttp://www.clinicaltrials.gov/ct2/results?term=food+allergies&Search=Search
However, what I've been hearing through the grapevine is that most people are just going to their allergist and asking for a baked milk challenge. Some doctors say no, some read the literature and then agree and some are already doing it. That means you may need to talk to more than one doctor if you're interested and your doctor is not. Make sure you understand *why* your doctor is not interested, though, before you spend a lot of extra money. There are RAST thresholds above which it's still very unlikely a child will pass a baked challenge. In other cases, the doctors simply don't want the hassle and liability of in-office food challenges.
Here's the link for food allergy studies in CA. Even if one of these is closed, you might contact the institutions as they are often more aggressive about challenges:
http://www.clinicaltrials.gov/ct2/results/map/click?map.x=70&map.y=209&term=food+allergies&map=NA%3AUS