Friday, December 30, 2011

Special Needs Spotlight: Sam



My name is Emalee.  I am almost 32 years old. I am a licensed marriage and family therapist. I have been married for almost 11 years to Mike. He is an attorney in Salt Lake City. Our son Sam is two years old. We also have a naughty dog named Atticus. My husband and I went to grad school after we were married, and so we postponed having children. In 2007, we found out that we were pregnant with our first baby. We miscarried that baby right at the end of the first trimester. If you wish, you could read about that experience on Molly Jackson's blog,www.agoodgrief.com. I had the priviledge of being her first guest poster.  About a year later, we found out that we were pregnant again, and again toward the end of the first trimester (after I had seen that precious heart beat on two separate occasions), our baby girl died.  Four months later, I found out that I was pregnant with Sam.  My son has SEVERE food allergies. He has had anaphylaxis 10 times in one year (he is only 2 years old), and has even been hospitalized. He is the light of our lives and is named after the Old Testament prophet, Samuel. His name means, "God Heard Her."

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Miggy:  So your son Sam, suffers from very severe food allergies.  Although this isn't typically thought of as a special need, it certainly has altered your life and the way you care for your son.  So how do you classify your Sam's condition and how do you explain it to other people so they understand the seriousness?

Emalee:  I have not really thought about how to classify Sam’s allergies. He certainly does have “special needs.” He is allergic to: eggs, peanuts, tree nuts, wheat, oats, green beans, peas, white potatoes, grapes, bananas, pineapple, coconut, and avocado. No, I am absolutely not kidding!! Think about eliminating all of those foods from your family’s diet. It is a challenge to come up with meals for Sam. I also have to prepare and carry around all of Sam’s meals if we are going anywhere. I just do not trust that other people will not cross-contaminate (see the avocado story below for an example) and even if they were very careful, I do not know if food will be available that Sam can eat. He also wears a medi alert bracelet sometimes (it is really hard to get a 2 year old to wear a bracelet—even if it does have cool animals on it), and I always have to carry Benadryl and two epi pens (which inject epinephrine which is adrenaline). Also, many kids who suffer with food allergies have asthma and eczema. Sam has both. I have to carry an inhaler and have a nebulizer in my home. During the winter, I try to stay in as much as possible because the air in Utah can get very dirty. I have not found anything to manage Sam’s skin really well. Any help I could get with that would be great.

I have had to really advocate for Sam by educating people about food allergies. Many people think about food allergies the same way they think about seasonal allergies. They think he may sneeze a lot or get a runny nose if he ate a peanut. Sam’s food allergies are life-threatening. If he eats the foods to which he is allergic and is left untreated, his throat could swell preventing breathing and/or his blood pressure could drop and he could die.


Miggy:  When did you first realize Sam had food allergies?  Did you realize how serious it was right away, or did it take some time?  And do you know all the foods he is allergic to, or is this list constantly growing?  

Emalee:  When Sam was six months old, his pediatrician said we could try rice cereal. Sam did not tolerate solid foods well, and the doctor and I thought that he just might not be ready. When he was nine months old, we tried again. He would throw up a lot and cry when we gave him certain solid foods. I thought he probably had acid reflux. We did not try again for a while. His pediatrician and I began to worry that something may be structurally wrong with his stomach or esophagus. She recommended that we think about doing some further tests. We scheduled an appointment with a pediatric gastroenterologist for an endoscopy consult.  

Before our appointment with the GI doc, Sam turned one. At his first birthday party, I made him a smash cake. It contained the ingredients a normal cake would, such as eggs and flour. Sam played around in the frosting (made with meringue powder which contains eggs), and began getting welts all over his body. He also began throwing up. I made an appointment the next day to see his doctor and she advised me to see an immunologist (a doctor specializing in asthma, eczema, food allergies, etc.). The immunologist did a scratch test and his back lit up like a Christmas tree. She also did a blood test to confirm. She told me that Sam had severe food allergies. At this point, I did not know how serious Sam’s condition was. I knew theoretically that anaphylaxis could occur and that it could be fatal. My immunologist told me that out of her 300+ patients, only about 3 needed to use their epi pens per year and only 2-3 needed to be hospitalized. I just thought that I would keep certain foods away from Sam and would carry some Benadryl and epi pens. Easy peasy. I did not think I would ever need to use them, nor did I think I would ever be in a life-threatening situation.

The next day (seriously), I was at my mom’s house. Sam found a cashew on the floor and ate it. He got welts all over his body and began to throw up. I just stood in the bathtub holding Sam while he threw up all over me. I was on the phone with the doctor’s office and they told me to give him Benadryl, which I did. In total, Sam threw up over 100 times. I did not know it at the time, but he was in anaphylactic shock. I am extremely lucky that he did not die that day. I made a mistake by relying solely on the advice the pediatrician’s nurse gave me. I do not think that even she understood how serious food allergies could be.

Many people, even a few medical professionals, think you only need to watch for breathing problems with an allergic reaction, and as long as the patient is breathing, everything else will be okay. That is not necessarily the case. Technically, anaphylaxis means that two or more systems (usually gut, skin, and lungs) are being affected. If two or more systems are affected, it means the problem is systemic. It also means that blood pressure can drop which can be fatal. Since the cashew incident I do not hesitate to take him to the emergency room or to his pediatrician’s office. I should have a room named after me because of all of the co-pays I have paid over the last 18 months (totally worth it). It took me one day to understand the seriousness of Sam’s situation.

There is no possible way to test for all the foods to which Sam may have allergies. The list is constantly growing. For example, we did not know he was allergic to avocado. One day, I cut an avocado and did not wash my hands before I handed some cheese to Sam. He ate the cheese and went into anaphylactic shock. He was admitted into the hospital and given epinephrine and steroids. While we were there, a nurse gave him a stuffed dog which he actually named Avocado.


Miggy:  Explain how Sam's allergies affect your day-to-day life?

Emalee:  Managing Sam’s allergies are relatively easy if I stay home. My home is pretty safe for him. I have no peanuts, tree nuts, or grapes in my home. Ever. I do have foods that Sam cannot eat (bananas, bread, and chocolate) but they are pretty secure, and because Sam is a big-time climber, I have to keep a constant eye on him anyway. My life becomes more difficult when I leave home. Both sets of grandparents try to be very respectful of Sam’s allergies, as do his aunts and uncles. They vacuum when we come over, they try to limit eating to certain rooms in the house, they try to avoid foods that will hurt Sam, and they try to keep a supply of Sam-friendly foods in their houses. Going to birthday parties makes me nervous. Think about what is served at normal birthday parties for kids. Peanut butter sandwiches, cake, ice cream, grape juice, etc. All of these could hurt Sam. My friend and I toured a candy company in the spring. Some of the candy contained nuts. Not only could Sam not eat any of the candy samples handed out to the other kids, but he could not touch anything either. Needless to say, it was not a really fun experience for either of us. Even building gingerbread houses with his cousins was nerve wracking for me. Sam’s house was made of graham crackers (which contain wheat-- one of his less-serious allergies). A lot of the candy that my family purchased contained wheat, potato starch, or was processed in a facility that processes nuts. Sam could not even touch that candy. Sam’s house was decorated only with marshmallows and he could not eat them after because they had touched the graham crackers.

Sam’s allergies have made me realize how much of life revolves around food. We celebrate with food. We console with food. We remember with food. When all of that changes, life changes too.


Miggy:  What are the biggest worries you face regarding Sam and his allergies?  

Emalee:  Without sounding too dramatic, I am worried about Sam dying from anaphylaxis. In all, Sam has had anaphylaxis ten times. He has been hospitalized once. I am worried about what happens when he goes to school, to camp, to a friend’s house, etc. Most deaths from food allergies occur outside the home and many occur during the teenage years. For teenagers, being able to identify with peers is of the upmost importance. If all of Sam’s friends are eating oreo cookies and he is eating carrots, he may decide to join in and eat that oreo. That is a choice that could have dire consequences. This brings me to my next worry which is that Sam will feel left out. We went to his cousin’s birthday party today and all of the other kids were eating cupcakes while Sam ate a rice krispie treat. This is not a big deal right now when he is 2 and loves rice krispies (who doesn’t!), but I worry about what happens when he gets older.
           

Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to Sam's allergies?  

Emalee:  This Halloween, my husband and I took Sam to a trunk-or-treat. There were probably 30-40 of our neighbors handing out candy. Almost every single person either brought special Sam-friendly candy, or dug through their buckets looking for something he could eat. I got a little teary thinking about how many of our friends had made special preparations for us and really cared about Sam. At the end of the night, Sam got to keep some of the special, safe candy and turned the rest into the Halloween Fairy for some matchbox cars. This was a great solution for us because Sam still got a special, fun, safe Halloween and we got some peace of mind and did not even have to worry about Sam being hyped up on sugar.

Also, because Sam is my only child, I do not know what it would be like to have a child without food allergies. A few days ago, I dove across a room like a mad woman to yank a cookie away from my 2 year old nephew. Everyone looked at me like I was crazy. I just said, “Sorry. I forgot that other kids can eat these.”


Miggy:  What are some of the misconceptions regarding food allergies?  How can people best respond to you and Sam when first learning about his allergies?  

Emalee:  Like I said earlier, I think the biggest misconception is that allergies are not that serious. They are potentially fatal, but they are really manageable if you are careful.

The best way for people to respond to Sam and I is with curiosity, respect, and kindness. I have only had a few bad experiences with others regarding Sam’s allergies. One was when a woman told me that she would not feel comfortable having him over at her house. I really do understand her concerns, but it still hurt my feelings. Sam is an awesome kid and he is worth the effort of vacuuming and securing harmful foods. The other was when the mother of another child in one of Sam’s church classes insisted that her child be allowed to bring grapes to class. This made me angry because I felt like she did not care about my son’s safety. However, when I thought about it, I realized that she just did not know the seriousness of the situation. Once we talked, she was very kind and agreed to leave her grapes at home.

I also wanted to emphasize that I have been extremely lucky. Almost everyone in my life has been so supportive. People have gone out of their way to create a safe environment for Sam. Our church even did a first-aid training especially for him. It was so awesome.


Miggy:  Since having Sam and dealing with this new way of life, what is the biggest lesson you've learned?  

Emalee:  I think that I have learned that we all have hard things to deal with. I have also learned that I can do hard things. People tell me all the time that they could never deal with a child who had such severe food allergies. I want to say, “Sure you can. What other options would you have?” I have also learned that for me, this takes a village. Keeping Sam safe is much easier when I have a lot of help.  I have also learned that the love I feel for my son makes up for the loss of nutella. I really love and miss nutella. I still eat it when I am somewhere without Sam, but it makes me feel guilty—kind of like I am cheating on him or something.

Probably the most important lesson I have learned is a lesson I am fortunate to learn over and over again. Harry Stack Sullivan once said, “We are all much more simply human than otherwise.” Sam is a normal 2 year old boy. He loves cars, dogs, other kids, and running around. He may have some unique challenges, but in the end, he wants the same things we all want. He wants to learn, to grow, to live, to be accepted, and to love and be loved. I want that for him too.  
  
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I want to thank Emalee for participating and for sharing her beautiful boy Sam with us...and I love that bit about Nutella.  I would miss it too!  This definitely opens my eyes to the sobering realities of food allergies.  Additionally, this makes me want to be more supportive of families that I may interact with in the future who have children with food allergies.  
So thank you Emalee!

Thanks everyone for reading and have a Happy New Year!

Hugs, 
Miggy
  

13 comments:

  1. Linda P.7:24 AM

    Thank you, Miggy and Emalee, for sharing about precious Sam. With a special needs child, you do what you have to, even if it is very hard. Although other people think they could never do it, they could, and they would.

    It IS a special "hug," when people show extra grace and understanding in ways that you mentioned and make you feel like they care and are making a special effort to help. I am so glad you have experienced that. I know with my own young adult special needs son, when I experience a special kindness, I feel such love toward that person.

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  2. This was so validating to read! My Eli has food allergies. Although they haven't been as serious (he's only allergic to peanuts, nuts, eggs, and milk and cross contamination problems have gotten a lot better over the years and we've only been in the hospital once), it was just good to get some validation that this is something that more people deal with (obviously, but ya know...) Birthday parties are so scary. And I loved when you described your Halloween - we've had the same thing happen. Friends have been so sweet about Eli's allergies. And rice krispies! Bless them!

    Eli also has a harder temperament (which has gotten sooo much easier as he's gotten older) so it's made everything even trickier. It wasn't until I had my second baby that I realized how much his allergies and temperament effect my life.

    Anyway, I love special needs spotlights, Miggs! I've learned so much.

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  3. Anonymous12:46 PM

    Hi,
    My kids have LOTS of food allergies also as not so severe.
    When it comes to Bday parties I bring my own cupcakes. I make a butch using namaste cake mix and frosting. Do you know that brand?
    http://www.namastefoods.com/products/cgi-bin/products.cgi?Category_Id=4
    Check if it is good for Sam.
    Also kids with allergies like your Sam can my "sensitive" to other types of food. Eczema is usually related to dairy also. And those will not show up on skin or blood testing. For us this test really worked. My daughter is really allergic to dairy and soy also and and those did not show up on skin and blood.
    http://www.greatplainslaboratory.com/home/eng/food_allergy_igg.asp
    I knew my daughter was allergic/sensitive to more foods then shown on skin and blood test. I had to pay for it but it was the best 200 something dollars I ever spend.

    Good luck and Happy New Year!
    Alex

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  4. Anonymous,

    Thanks for the suggestions! We actually did some other food tests that measure immunoglobulin A as well. I think we even went through the same lab you mentioned. Sam shows sensitivities to dairy and weirdly enough, apricots and corn. I still feed him those foods though, sparingly. C'mon! The kid's gotta eat something! Thanks for the namaste foods link. I will check it out, and namaste to you.

    Emalee

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  5. Anonymous2:23 PM

    I love this series. It's like a how-to manual for being sensitive to others. A while back I read this amazing memoir by Genevieve Jurgensen who lost both her daughters in a car accident caused by a drunk driver. Years later she was still angry at the mothers of her daughters' friends who avoided her at the grocery and in the neighborhood rather than express condolences for fear of saying the wrong thing or looking silly. Her pain left such an impression on me and I think the sentiment transfers easily to moms of children with special needs. When I see moms with struggles different from my own, rather than look away and pretend I don't see their challenges, or worse yet - don't see their beloved children, I try to engage them. I often worry that I'll say something foolish or silly, but recognizing the children and their interesting stories seems more dignified, sensitive, and respectful than looking the other way. I am probably clumsy in my execution, so I am thankful for your series as it helps me be more graceful in my approach. Thanks to you and the generous moms who share their beautiful love with us.

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  6. Linda P.--Thanks again for your unique perspective....I love hearing from someone who knows and yet is a little further down the special needs road.

    Abbie--Did I know that Eli has food allergies? I'm not sure...but I can imagine how different it's been from him to A. And even though it's not as serious and he's "only" allergic to a few foods, those few foods are in quite a lot of stuff! I'm glad this gave you some validation...so important in our often thankless jobs. Although I'm guessing one day that beautiful boy of yours will know just how lucky he was to have you raise him.

    Anon #1--Thanks for chiming in! Good stuff.

    Emalee--I feel like I should just say hi to you too since I'm going down the list here....hi! Again, great post. :)

    Anon #2--Thank you so much for taking the time to write that. I love doing these spotlights if for no one else but myself, but I'm really glad to hear they help other people. And I would say that's been the one thing that has been a common thread among I think, every spotlight...don't ignore the kid or their condition, engage and ask! I know that's how I feel and it seems like pretty much every mom feels the same. And just so you know, I STILL put my foot in my mouth, make assumptions and say the wrong thing regarding kids and special needs...so even with my perspective, it's not a perfect science. Hopefully most people understand that you're trying.

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  7. Linda P.6:42 PM

    Hi, again, Miggy! A couple or so weeks ago I noticed you dropped a little "hint hint" ; ) that I might consider doing a guest spot regarding my young adult special needs son. (I feel like a broken record saying "my young adult special needs son" so much when I comment, but I never know when a new person might be reading, and I just like to let them know where I'm coming from!)

    I will definitely consider contributing a post somewhere down the line. I don't have a blog, so I haven't actually written concisely about my son anywhere as of yet. I do see that some info from a mom of an older special needs person could prove helpful. OK, it is down on my list of new year's considerations! Thank you for your kind interest.

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  8. We have battled eczema (pretty much since birth) as well...I have found epsom salt baths to be soothing (not drying like you would think)...as well as switching to a very mild soap (without any sulfates, parabens or other chemicals) by the company "California Baby" You can find it at Target, it is pricy, but for us, worth the cost and avoiding the itchy rashes and bumps.

    My twins also have several food allergies (along with other problems)...although non are to the point of having to use an epi-pen, we still have to be very careful, or they get very sick, lots of hives, itching, etc.

    There are 2 really great resources I have come across that may be helpful for you.

    First a book "Special Needs Kids Eat Right" by Judy Converse
    She talks a lot of asthma, allergies and other developmental disorders and how to use diet to help/change/heal their bodies.

    Another resource we have used for the past 6 months which has been very helpful for our kids is a nutritionist named Donna Pessin. Her "Unique Healing" approach has done wonders for our son. She will also deal directly with the cause of the food allergies, and help you heal the bowel (the cause of the allergies). She is a funny lady, but her approach has been nothing short of brilliant (and simple). http://www.uniquehealing.com

    We are also just finished our 4th IVIG infusion. For people with severe allergies, this can be life altering. If you are not familiar with it...I would look into it. I would be shocked if it hasn't come up in visits to the immunologist and if it hasn't, I would look for a new immunologist who has experience with IVIG.

    You guys are doing a great job. I know the struggles...the kids preschool was great with their allergies...but since starting kindergarten...we have lost a lot of control...and we have starting having to really teach not only our kids, but the recess attendants and teachers about how important it is that they don't get anyone else's food.

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  9. Hi Emalee I hope you're reading comments as i just wanted to say, first of all, thanks for sharing your story. I had no idea allergies could be so serious, I also thought it was only a breathing concern. Also my daughter also has major struggles with eczema.....Aquaphor is an absolute life saver for her skin, she improved the day we started using it. Also, if you haven't already tried this you should ask your doctor about bleach baths. In testing it gave such a relief to severe sufferers that they stopped the study early to allow the other patients who were not using the bleach to have relief as well. We haven't had to do this yet but her condition gets worse as she gets older so we may have to try it out.

    You likely have tried both or at least heard of them but I thought I'd try!

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  10. Mel, Our Little Rock Stars, and everyone else who has commented,

    Thank you so much. Your comments are so awesome and helpful. It is scary to open up your life and especially to put your child out there. Thank you for your kindness.

    Emalee

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  11. Anonymous1:43 PM

    Alex, anonymous # 1 here.
    First of all, no problem.
    Also to all the parents who have kids with eczema. You can bath them in gold if you want but it will not help with the skin long term. Eczema in itself comes and goes in waves. To make it better you have to eliminate what your child is sensitive or allergic to. I have 2 kids with eczema, one still breastfeeding. The only thing that helped 100% was diet according to sensitivities, my diet in case of the breastfeeding child. Like I mentioned before, my daughter doesn't even show allergic to 3/4 of the things she is allergic/sensitive to, through regular blood allergy test at Quest or such.
    And I would never bath my child in bleach, I would never bath my self in bleach, it is poison. But we all make our own choice.
    Emalee check out Ians Foods also if you never heard about them.
    http://www.iansnaturalfoods.com/

    Happy New Year to all.
    Alex

    P.S. I too ready every "friday special". They are awesome!

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  12. ashley2:14 PM

    Thank you so much for sharing this story...It's true, so many people don't understand the severity of true allergies. My son is also 2, and has peanut, soy, milk, and casein allergies. Thankfully we haven't had to use our epi-pen yet, and I hope we never will, but it is terrifying every day knowing there's a chance. Knowing something that's so common everywhere can kill your child...it's horrifying. We were at the mall the other day, and he ran up to the candy dispensers, and I couldn't believe they now put reese's pieces in there. It's a constant fear, everywhere we go. Thank you for sharing; I would never wish this on anyone else, but it's nice to be reminded that I'm not the only one dealing with it, when it often feels that way. When I tell someone he has allergies, they think it means a stomachache or something.

    Anyway, I wanted to let you know, you asked for advice on the eczema, My son has had eczema since the day he was born, which is what got us to test for allergies (along with a horrible reaction to soy formula once). We've tried at least 15 different soaps/body washes, specialty eczema ones, organic ones, all kinds. The one I've found to work the best for him is a brand named "Shikai" which you can buy on amazon, or in some Meijer and Kroger stores. I discovered it in Whole Foods, but I don't think they carry it anymore. There's a few subtle scent options, but it's all natural, and very soothing to his skin. It has worked wonders for him, now there's only a couple spots on his ankle, wrist, and behind his knee. For a long time we had a prescription strength hydrocortizone mixed with aquafor, but our allergist prescribed "Triamcinolone" ointment, at 0.1%, and it's helped a lot. It's just a stronger steroid topical ointment, but it's helped a lot. Ask your allergist or even pediatrician about it. It's worked much better for him than the hydrocortizone. Good luck with everything, I wish you all the best.

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  13. I know that this was posted so long ago - but I have very mild food allergies and my brother has many pretty serious allergies. My allergies among other things, cause me eczema. I have had great success with fluocinonide for treating my eczema. Sam's allergies are so much worse than my brother's and his are pretty bad. He carries an epi-pen for peanuts, and tree nuts, legumes, shell fish, beans, and many more. I know my mom worried a lot when he was younger. We had some scares. But as Ben has gotten older, he understands what he needs to avoid and is very good about his allergies. He is very cautious and I am sure that Sam will be too. Ben would never think about eating one of the foods he is allergic to. I have only mild allergies that cause stomach problems, eczema and a few other symptoms and avoid my allergies as well as I can, because the after effects just aren't worth it. I'm sure Sam will understand his boundaries as he gets older. Good luck!

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