I cannot believe it has been so long since I’ve updated this blog. I guess we are just really accustomed to Grant not eating any meats and I haven’t thought about sharing anything in a while. Grant was featured in an article in Living Without magazine back in August of 2013. The lady that started the Alpha Gal Facebook page was also interviewed for the same article. When Grant had his blood drawn last January his levels had gone from 7.33 to .43 or something like that. We go again in two weeks so I’ll be curious to see what they are now. The allergist shared that with any other allergy, that the numbers were low enough to do a food challenge, but with Alpha Gal there is so much we don’t know and that she wasn’t going to allow Grant to be the guinea pig! I appreciated that and agreed that we were not ready for that. I feel like we really have things under control and checking labels has just become second nature for me. He has had two times that he has gotten red blotchy spots on his face this past fall and we have no idea why. As far as we know he hadn’t eaten anything that would have made him re-act. One of the times he got himself so worked up over it, he was convinced that he needed the Epi-Pen. Thankfully, Benadryl has always stopped any re-actions that he has had. There are so many adults on the Facebook page that can’t eat dairy. So far, he has been ok with dairy and we were told to eat and drink it until he had a problem with it. He was happy that I found marshmallows locally that he can eat during the fall when we are going to bonfires and our neighbors have their fire pit going a lot. They are made with fish gelatin and they melt really well. I even made him his first batch of rice krispy treats since he had been diagnosed in 2011 with them and he was so happy to be able to have those. Again, I am so thankful that he is old enough to check his own labels if he is out with someone and they offer candy etc. There are still very few places that I have let him spend the night, but I have a few friends that are very on top of things and are wonderful about making sure they have safe things for him to eat. The other day he was invited to a birthday party of a little boy from our homeschool pe class that we don’t really know very well. Like normal, I asked the mom about food for the party so that I could take his if I needed to. She was so sweet and made sure that he could have the cake that she was buying. She wanted him to be able to eat what everyone else was eating. With so many people who don’t get it, that was such a nice feeling that she would care enough to be willing to try to accommodate his needs. While I don’t expect people to do that and would never ask them to, the gesture was still very kind.
I realized last week that I never even asked what Grant’s levels were when he tested positive for alpha gal allergy. His test was done on 10/20/11 and his level was 7.33 which the lab flagged as a very high level. I was reading that anything .35 and above is considered positive and that having a higher number doesn’t necessarily mean your symptoms are worse, just that you cannot tolerate any meat, where a person with a lower number could tolerate some types of mammal meat.
Well, we have passed the 1 year mark since Grant was diagnosed with Alpha Gal. In so many ways I feel like we’ve always lived this way and in others I can hardly believe that this is his life. It really has become so normal for us, I don’t think much about it anymore. I know what is safe and not safe for him. He really likes his turkey burgers, and our whole family made the switch to ground turkey, hot dogs, etc. We all eat much healthier now. I decided to do an interview with him to see how he feels about things:
Me: What is the worst part of having your allergy?
Grant: Not getting to eat Hamburgers
Me: What is your new favorite food?
Grant: Butterball Turkey Burgers and Chicken/Feta Burgers
Me: How does it feel to have to explain your allergy to others?
Grant: Annoying, because everyone asks me why I can’t have meat
Me: What does it feel like to have a re-action?
Grant: My throat feels like it is a tiny little hole and like someone is choking me. Sometimes the hives are itchy. Sometimes I just get hives.
Me: What is one thing that you wish people knew about your allergy?
Grant: It is hard for me to explain it to people. My allergy is to a sugar, not a protein and sometimes people don’t understand why I don’t re-act immediately.
Me: Are you ever mad about your allergy?
Grant: Yes, when I can’t eat burgers from places that I really like.
Me: Have you ever been made fun of because of your allergy?
Tags: Alpha Gal, chiggers, Dr. Platt, Mammalian Meat Allergy, Meat Allergy, seed ticks, University of VA
This morning Dr. Platts Mills (the researcher who discovered Alpha Gal) from The University of VA called me to confirm that it was ok to use Grant’s picture and story at the upcoming allergy conference. While talking to him I learned a few new things about Alpha Gal. There has not been a research study done or released about pediatric Alpha Gal at this time. From what he and his team know there are only about 40 kids who have Alpha Gal allergy. Now, there are probably more, but that is all that they know about! Grant probably contracted this allegy when what we thought were chigger bites all over him were actually seed tick bites. Seed ticks are the larvae stage of a tick. They apparently look a lot like chiggers and cause the same symptoms of chigger bites. I was doing some reading about seed ticks on another mom’s blog, and found out that if you notice after being in a wooded or grassy area that you are covered in seed ticks, you can take a piece of tape and they will come right off. Good to know for the future, unfortunately too late for Grant now.
Tags: allergy conference, Alpha Gal, Meat Allergy, Ticks, University of VA
This week our family was asked by the researchers at The University of VA if we minded if they share Grant’s picture and story at an upcoming allergy conference. They will be doing a session on pediatric Alpha Gal allergy. We are thrilled! We want to do anything we can as a family to help others that are dealing with this allergy. When I told Grant he was so cute. He looked at me and said “so does this mean I will be famous?” I laughed and told him at the allergy conference he would be :o Click here To read more about the studies that have been done, and to follow new information from The University of VA.
Tags: Alpha Gal, Food Allergy, Mammalian Meat Allergy, Qdoba
Grant has really done well with adapting to life with a food allergy. There are so many favorite things that he can no longer have. In ways I think it is harder for him because he was able to eat these things for 8 years, and then suddenly he couldn’t have them anymore. I have been able to substitute with turkey in almost every recipe that I make and after finding a brand that we really like (Honey Suckle White) we can’t tell the difference when we eat it. We are eating much healthier now! But, there are some days when he really just wants to eat a big, juicy cheeseburger… He doesn’t want a veggie burger. He wants to go to Culver’s (his favorite burger place) and order a big fat cheeseburger. It is on days like those that I pray that this allergy goes away, that he doesn’ t have to spend the rest of his life explaining to people what Alpha Gal is, and why he can’t eat mammal meat. I am so thankful for an allergist that is on top of this and that is constant communication with the researchers that discovered and made the connection between the tick and mammal meat to figure this crazy allergy out. Thankful for all of the people who now have answers that had suffered from this for years and had basically been told they were crazy. Thankful for Benadryl and Epi-pens (though I pray we never have to use the Epi-pen). Our families have been wonderful and they always make sure if we are coming that the meal we will be eating is almost all Grant safe food. I am thankful that Grant loves fish and seafood, so that when I make something he can’t have, he can still eat something that he likes and that is good for him. Tonight we went to Qdoba to eat and a crazy thing happened. A piece of beef had fallen into the bucket of chicken and ended up in Grant’s taco. He was eating and it fell out of the end of his taco. Thankfully he didn’t get a bite of it and we immediately had him stop eating that taco so that none of what he had eaten had touched the beef. A good reminder to me to re-check everything before I let him start eating it. I told him how glad I am that he is old enough to know what is safe and not safe. My friend has two children with severe allergies and they have had them since they were babies. She can’t let them out of her sight and they are allergic to milk which is much harder to explain to people than meat. Time to go check on him before I go to sleep just one more time. Even though he didn’t take a bite of the meat, if he were going to re-act we are now at the end of the time that it should happen.
Tags: Alpha Gal, Mammalian Meat Allergy, Qdoba
Another Alpha Gal friendly restaurant. Because Qdoba cooks all of their chicken on a separate grill from the pork and beef Grant is able to eat their grilled chicken. We usually just order him the chicken soft tacos. We don’t do quesdillas due to cross-contamination of other meats being grilled in the same quesdilla grills. I’m sure there are some other combinations that he could have, but he loves these and keeping it simple is the easiest way to avoid a re-action. Right now Qdoba has kids eat free on Sundays from 3 to close.
Tags: Alpha Gal, Mammalian Meat Allergy, Olive Garden
We went to Olive Garden in January and found out that Grant can eat three of their sauces and that they will cook chicken for him in a clean pan to prevent cross-contamination on the grill. Our waiter was very thorough in checking on things for us with the cooks.
Tags: Alpha Gal, Lamberts, Mammalian Meat Allergy
Back in December we went to eat lunch one day at Lambert’s, Home of the Throwed Rolls. I knew from a friend whose children have milk allergies that they had always worked with her when they went there to eat, but I wasn’t sure what they would be able to do for us with Grant’s allergy. That friend actually was with us that day and I’m sure when we left we were discussed in the kitchen for having such different allergies and being together!! I asked our waitress to speak to the cook and explained to him about Grant’s allergy. We found out that Grant could eat the fried okra, because the grease is cleaned eat night, and that was the only thing that had been cooked in that grease that day. He agreed to cook Grant some chicken tenders in a clean pan. Not only that but he served it himself and then wouldn’t let us pay for Grant’s meal! He was just as accommodating for my friend, with her children and their allergies. I was so impressed with the attention that was given and the way that they cook and waitress took us seriously that day. We will definitely be going back to eat at Lambert’s again. If you live near any of the Lambert’s locations and have food allergies, you should give them a try.
Tags: Alpha Gal, smoked meat reaction
In January, just days before his sister’s birthday we had a check-up at the allergist. I explained that we would be going to eat at a BBQUE place for my daughter Merideth’s birthday the next weekend and asked if I could let Grant try smoked chicken that had been cooked on a smoker which had also smoked pork. The allergist said that we could try, but that even if Grant didn’t re-act she did not want us doing this all of the time because we would continually be contaminating his body and his chances of outgrowing this would be affected. Grant was so excited to be able to order the adult half-chicken dinner that night. I looked at him before he started eating, like I do most every meal when we are eating out or eating anything new. After about 10 minutes or so he had some red splotchies appearing on his face. They were not hives, but I knew he needed to stop eating the chicken. We immediately gave him Benadryl. He started itching first on his arms and by the time we got home the itching had moved to his torso and then his back. I decided that I would sleep with him that night because with Alpha Gal a reaction can take 3 to 8 hours to happen and I wanted to make sure that this was all that was going to happen to him. We gave him another dose of Benadryl before going to sleep and he was fine the rest of the night.