Prairie Wife of the Week: Dyani Jaime (Food Allergies)
Posted September 23, 2016 by Prairie Wife - 8 comments
With the start of the school year and Halloween soon upon us we’ve all been hearing about how we can keep children with food allergies safe. I’ve never had a problem with sending the Cowkids to school with peanut free food. After all, I would want someone to do the same for me! I’ve known this week’s Prarie Wife for several years and I was so pleased when she agreed to share her experience as a mom of a child with severe food allergies with our readers.
Readers, I have to tell you, I thought I had a pretty good handle on this food allergy thing…
After talking with Dyani I realized that I actually had no idea, none. I cringe now when I think about how I told her “Don’t worry I didn’t feed the kids peanut butter toast today, and I wiped the table off!” when she came over with her kids for coffee. It never occurred to me that my kids still might have had allergens on their toys, shoes, and Lord knows where else. I’m surprised she didn’t grab her kids and run away screaming. After completing this interview I am now way more educated on how I can keep her and other children with food allergies safe. And, I know how I can be a better friend to her AND her son Marcial.
Those of you that are going through the process of having a child diagnosed with severe food allergies, make sure you check out some of the helpful links at the end of the interview!
Prairie Wife (PW): First tell me a little bit about you and your family.
Dyani Jaime (DJ): I was born in Casper, Wyoming. My twin brother and I were the first on my dad’s side to not be born in Florida. I am the 5th child in my family. My brother is 5 minutes older, and uses it against me all the time! I met my husband when I was 14 on the first day of high school, and we have been together for almost 16 years. I have a 14 year old daughter, a 7 year old son and a 5 year old daughter. I have three degrees, one Bachelors and two associates, all of them are the educational field and cultural diversity. It took me a long time to get my degrees because I did it bit by bit after my daughter was born. It’s something I’m really proud of, and am SO thankful I have.
PW: Tell us more about your children.
DJ: My oldest daughter is extremely artistic and talented in all the Fine Arts. For the first 7 years it was all about her, she is such a blessing to us, and when her brother was born it could have been a hard transition but, she dotted on him like he was her little baby doll. My son is bright and sensitive, he’s so interested in everything and busy…typical boy! My youngest daughter is an absolute spit fire and adores her big sister and brother.
PW: When did you first realize that your son had food allergies?
DJ: When Marcial was 14 months old we made him scrambled eggs and within 7 minutes he passed out, and was vomiting and shaking. I thought it was a seizure but, when he became covered in hives and his mouth started to swell I knew it was an allergic reaction. We have another member of the family that has severe allergies so I recognized what was happening. We rushed to the ER and even though he was lethargic I somehow got some Benadryl into him on the way there. We were completely unprepared for it and it changed our life forever.
PW: Can you share how you found out what foods triggered him (caused a severe allergic reaction)?
DJ: When we were at his pediatrician’s office in Wyoming they did a preliminary blood test and found 14 different food allergies. We went to a specialist in Colorado to find out what his triggers were. When we did the scratch test we found out that in total, he has 51 food allergies.
This includes a wide variety of peanuts (legumes), tree nuts, fish and shellfish, bananas, eggs…just to name a few. With wheat and soy he has a minor allergy so, we are actually feeding it to him (at the recommendation of his immunologist) in small amounts to build up his immunity.
Allergies are categorized numerically with 5 being the worst reaction. For Marcial if it’s a level 5 he goes into anaphylactic shock. If it’s a lower level reaction it makes his lips swell and his tongue burns, sometimes he has a GI reaction (diarrhea, vomiting, cramps, dry heaving). Many people aren’t aware that this too can be a moderate-severe allergic reaction. Every reaction is different every single time so it can be really stressful to try and figure out what is happening.
PW: Once you found out what he was allergic to, how did your life change?
DJ: Like most families we are on a budget. The cost of buying food for my family has gone up…more than $2,500 a year.
Most of the time we can’t buy store brand…I’ve had the most luck with name brands not containing his allergens (ingredients that he is allergic to). Living in Wyoming there simply aren’t as many choices for shopping so at times I have to order items.
Also, there is a contamination issue, and reading labels…don’t get me started on that lol! I can’t just run and grab a box of mac and cheese for dinner. It isn’t required by law to list every single ingredient (other than the top 8 most common food allergies) on the labels. There is no consistency in how companies label ingredients either, it took me months to learn all the different terms for peanuts or milk. I’ve learned to go without the kids because reading the labels with them along was impossible! You have to get out of your comfort zone and call the companies and the 1-800 numbers and ask them questions. I’ve learned to get creative with cooking and have accepted that I will be making most things from scratch.
My son’s food allergies and keeping him safe makes me feel pushy (I’ve become THAT mom) and it gives me anxiety to go anywhere new. I have to work really hard to fight the fear and resist the reclusive behavior. Truthfully it’s scary to go to other people’s houses. Even if they know about his allergies and clean up the table and dishes, what if one of their children touched peanut butter yesterday and then a toy that my son is playing with?
PW: Is there anything you now know that would have made things easier as you went through this process?
DJ: I wish I had known that the testing process is from 4 to 6 hours. It’s emotional for both you and your child, you should have a supportive friend or family member with you for this appointment. There are feelings of why my kid? No one can fix what’s happening and your life will change. A child with severe food allergies is considered medically disabled, it’s a huge deal.
Shortly after his diagnosis, someone gave him a cookie when I was in the bathroom and he almost died. They were so kind but it almost killed my kid! That’s when I was done, it was what broke me for a bit. When this happened the anxiety took me over, and I nearly became homebound. How was I going to keep my child alive?!
As a parent of a child with a severe food allergies you need to find support and NOT let anxiety take over. Research and asking a trillion questions, take a notebook and pen every time you go to your appointments. When you’re emotional it can be hard to process all the information. There are so many websites and support groups, use them, take advantage of all the wisdom that can be learned from others who are in the same position. You are NOT alone. Never second guess yourself, an epi pen will never hurt your kid (it hurts their leg and their blood pressure will rise) but if you don’t give it to them in time, they can die.
If you think your kid may have a food sensitivity check it out because each reaction can be worse.
One of our doctors explained it us like this. Your body is like a Dixie cup. When you eat a food your allergic to, a few drops go in and the next time maybe a few more…then the third time it could make it over flow and have all heck break loose. Each person’s Dixie cup is different. Some people it can be 15 times until it overflows, others it can only take one time.
Accept that this is the way life is for your child. Don’t hope for them to grow out of it, deal with the reality of the situation.
PW: How did your family and friends react when you told them?
DJ: I’ve found that the older generation is the hardest. They really have a hard time grasping how serious the situation is. Some people were supportive and were there for that first hard adjustment period. As I mentioned before, I have nephew with food allergies, so my family knew a bit more about the situation.
I’ve had friends and family that think we are just being picky. I’ve learned who has my back and who is willing to be compassionate. Many people are understanding. They call and ask if they have food questions, they are conscious and understand when I ask them to take shoes off before they enter my home. Also, I try and remember that most people don’t mean any harm with their comments. I’ve learned I had to find my tribe, and take a deep breath and just embrace who I am.
PW: How do Marcial’s food allergies effect your other children, and your husband?
DJ: They don’t know any different, it’s our life, and has been for 6 years. We take our oldest daughter with us to appointments so she knows how to care for him if my husband and I aren’t there. His sisters are vigilant for him, and don’t mind washing their hands etc. They can have food he can’t but, they are very conscious of what they need to do to keep them safe.
I am blessed because protecting Marcial has been something that my husband and I have been a team on. In the very beginning there was a lot of educating I had to do. As the mom I’m the one that makes the food, and has done most of the research so at first it took my husband a bit longer to pick up on all the do’s and don’ts. But he’s got my back!
PW: What did you do when your son was school age?
DJ: He tried one semester in public school and it was scary for me. There were a lot of prayers and I was panicked with the daily stress of trusting my kid’s life to other people. Living in a small town people weren’t familiar with what needed to be done to keep him safe. The majority of teachers were supportive but, there were others that just didn’t understand. He couldn’t sit with the other kids at lunch, he couldn’t attend class parties with food. The things we had to do to keep him safe ended up making him feel left out. I finally decided that it just wasn’t working for our family and I took him out and I now homeschool him.
PW: What do you wish other parents knew or would understand about having a child with severe food allergies?
DJ: Plain and simple, NO food item is more important than a life.
I’m not trying to make your life harder, I’m trying to keep my son alive. I am not a hypochondriac, I am his main advocate and his voice.
Don’t say that my child will “grow out of it.” My kid will hear that and have false hope, and I will have to break his heart when I tell him the truth.
How would you feel if it was your child? Instead of thinking of what you can’t have, think about what your child will learn about compassion and kindness by being friends with my son.
I want him to be a part of what you’re doing, birthday parties etc. Please think about how you can include him…please. You can have a holiday party at school with games and decorations and no food…the kids will still have fun! Call me if you have questions. I would be happy to answer them, to support you, to make all the treats. We want to welcome you and your child into our home and our family’s lives.
PW: What are your concerns and hopes for the future?
DJ: I know there is probably no cure for my son’s medical condition. Independence for him is a long way away, he has to trust the adults around him to keep him alive. But, I hope and pray that the independence will come for him someday.
Many people have mentioned the peanut patch. While it may be a great step forward, it is not a cure. It offers medical support that may help my son build resistance so he can survive an unexpected interaction with one of the foods that causes his most severe reaction.
For the immediate future, we are working on getting him a service dog. The cost is anywhere from $13-$18,000 and it would offer him so many opportunities! He would still have to be vigilant but he could participate in sports and attend school.
PW: Any last Prairie Wife words of wisdom?
DJ: Allergy Moms: Pray and know that there are people out there to help educate and support you. Do your research and learn as much as you can from valid sources. Just because you aren’t a doctor or nurse doesn’t mean that you can’t take care of your child. You can do this. You will grow so much through the gift of being your child’s mother. You and your child are not alone. Reach out to others and find your tribe, they will help you through the bad days.
Friends and Family Who Love Allergy Kids and Their Families: Listen and be supportive and love us through the ups and downs. Include us and know that asking us, even if we always say no, means so much. If you want to get together call and ask me what will work!
These websites have a variety of tools and resources-specifically any food recalls, tips for parents and teachers, recipes, and a parent forum.