Soon after my oldest son decided he was done breastfeeding, he began to have fits in his sleep where he would thrash back and forth and bang his arms and legs against the crib. After receiving my videotape of Jack sleeping, Dr. Weissbluth assured me that Jack would not hurt himself and we continued to monitor him closely. He recommended a pediatric dermatologist that informed us how to change our daily routines and environment to accommodate Jack’s newly diagnosed eczema. I followed every single one. This is where I first got up close and personal with organic products. Remove everything artifical in everything!
As you can imagine, we moved cautiously with Jack who was still thrashing after all the various changes. Thinking back, we even started trying cereals late in his life at almost 6 months or so. Rice went well. Oat just fine. One tiny teaspoon of barley cereal sent us to the emergency room.
You know those moments when life is so good it seems like you are in your own movie minus the soundtrack? After his little meal, we headed out for some weekend fun. When I removed Jack’s little denim hat at the mall, I saw golf ball size lumps all over his tiny head. Immediately he turned shades of red and purple all over as we raced to the emergency room. An epinephrine nebulizer, a shot of adrenaline, dose of Prednisone and a heavy dose of Benadryl later his body chose to accept the treatment and return my child.
Enter the pediatric allergist. I didn’t know that allergy testing on a child before they reach the one year old mark produces many false positives and negatives. Basically it is useless. You can imagine how happy I was when we scheduled his appointment for testing. Finally an answer to what has been hurting him! I was thrilled.
Sadly we landed in the emergency room two days before the test. This time uncontrollable projectile vomiting and hives after picking up a pumpkin at an apple orchard. A week or so later we tested and found that Jack was allergic to milk, eggs, wheat, barley and peanuts. The devastating news brought to light the culprit, but I could not help but feel I assisted with the decline in his health. Milk based formula, baby yogurt, teething biscuits, pasta, bread…you name it. As hyper sensitive as we were while avoiding barley, I never thought that Jack had these sensitivities. I believed when they said that children allergic to milk have blood in their stool not eczema or hives. I listened to all the answers to the never ending lists of questions I had and I believed.
Enter the pediatric nutritionist. Since soy was a common substitute for milk and it affects estrogen in the body, I questioned the limits of his soy intake on a daily and weekly basis. “He’ll grow out of it. Don’t worry.” is what she replied. I cannot tell you how many times I have heard doctors, nurses, relatives, pharmacists, cashiers, friends and even people at the supermarket say this. And it’s four years later and we actually added another allergen. An exposure to animal dander in close proximity (owner prior to us) triggered a severe reaction and asthma.
Fast forward to now and you see a wonderful, smart, patient child who has been deprived of the birthday cake and ice cream at parties, school snack at preschool every day, pretty much anything on any kid’s menu anywhere. Forget a friend’s house if they have an animal or a petting zoo or a circus. He’s held tight to his “medicine backpack” wherever he goes because he can never be without a double epipen jr., several doses of Benadryl and his albuterol asthma inhaler. Ever. He’s been drugged, studied, poked, prodded and literally made to itch every three months since before he can remember. The allergist wants good news as much as we do, but it’s not in the lab results.
The results are in Jack. The happy, confident little man that sits down in restaurants and eloquently states his allergies and how he needs his food prepared. All with a genuine “please” at the end. How could I ever hope for more? I know that there are worse things my son could have. Most days it comforts me to know that we can somewhat manage it, unlike some other families. Still some nights after watching him quietly drift to sleep I think about all the times I have rushed into Children’s Memorial Emergency with a lifeless child gasping for breath while I scream for help and I weep. Anguish for every child who feels pain and every parent who searches for a way to free their child.
Why are our children so allergic? Can someone explain this to me? Can I blame the preservatives I ingested all these years? The Northwest Indiana air I grew up with? My ancestors? The myriad of chemicals in my parent’s dry cleaning plant where I played and then eventually worked?
Once a child reaches five years old, he or she is not likely to ever grow out of the allergies they have remaining at that time. This is what the allergist reminds me as I book Jack’s 5 year old appointment for allergy testing this October. I have every intention of continuing hope and searching for more options.
An original 5 Minutes for Going Green post. You can read more from Jennifer at her blog The EcoChic Organizer and subscribe to her blog at www.functionandspace.blogspot.com.
Poor baby! He’s had it rough!
My oldest son also had allergies when he was a baby. He would cough until he threw up. We did an allergy test and found out he was moderately allergic to dairy, tomatoes, bananas, chocolate, cats, dogs, and several outdoor pollens, etc.
With research I learned that we ALL have allergies to a certain extent that our bodies constantly fight. It’s just when the allergies add up and become more than our body can handle…that’s when we show symptoms.
Long story short…we made a few changes to our indoor environment and stopped letting him drink 2 GALLONS of milk every week. (Yes…he drank that much at age 3.) He is now 10…still eats all those things he “allergic” to…and is doing fine.
Good luck to you as you and your son adapt to the challenge of living with life-threatening allergies. One of my brothers had a wide variety of allergies when he was growing up back in the 60s and 70s and — although you never want to have to deal with the issue — labeling and awareness are much better now than when he was a child. He did not outgrow all of his allergies, btw, but did outgrow some. Still ends up in the ER himself sometimes, but he can manage his own reactions pretty well. I hope your son one day reaches that stage (calm self-management) of his allergies. Best, Jess
Thank you Jessica & Gina. I love to hear stories about outgrowing at least some of the allergies. I look on the bright side. Jack is VERY in tune to his body. He understands what he needs and what he feels and for that I am grateful. And his dad and I are very aware. I even told the allergist that the play-doh was making him itch. She scoffed at me (hyper sensitive mother) until I insisted that he tested positive. Who knew?
Oh yes!! Play-doh. I would have never thought until I met a mom who became a very good friend. Her daughter was allergic to wheat and wheat is in Play-doh. She was also allergic to latex (Band-aids, balloons, etc) Allergies are so very different. Different scales and just plain different reactions. For instance, on a scale of 1 to 5 (5 being highest), all my son’s allergies tested as 2’s or 3’s. And his symptoms are like getting bronchitis, rhinitis, or sinusitis. Very mild and gradual…like a cold coming on.
So many differences. I hate it when doctor’s scoff. Jerks. >:(
Although I can never imagine the worry you must have, I can definitely relate to the whole special diet. We are on the GAPS diet which basically eliminates gluten, casein, soy, starch, sugar, processed foods, and preservatives (I think that’s it, lol). We aren’t able to eat out at any restaurants yet and packing a school lunch is a nightmare, lol.
Check to see if your library has the book Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. She talks a little about allergies in the book. She believes most diseases start in the gut. You can check out http://www.gapsdiet.com for more information.
Jennifer,
Your description of running to the hospital with a child not breathing and you asking for help, made my cry. My baby Josie, she has asthma and she’s only 19months. It comes and goes but we did allergy tests and it was sad to see her poked.
I’m with you, I wonder WHY children have so many allergies. It makes me so sad and confused.
Great sources and links too.
Oh how I understand that hope, it’s all we parents of food allergic children have to hold on to. My son is severely allergic to dairy, gluten, eggs, fish, nuts and soy and each year we hold our breath while the tests are done. My son is now 8 and even though he has yet to outgrow anything we still have hope.
We’ve just finished our first year of food allergies with our 3 year old. She’s allergic to dairy, eggs, wheat and soy. So far, her reactions are all sinus related, reading your account makes me so thankful that it’s not more than that.
And while it is HARD, the fact that she’s been so healthy this year, that she’s been sleeping so well, and that she doesn’t sound like she smokes a pack a day makes it all worth it.
And the hope? Like everyone else, I hope that she does grow out of it, that she can eat a pizza with her friends some day and not feel like crap afterward…..is that so much to ask???
Jennifer,
I’m sorry for your frightening experiences with your son. It’s difficult when any of our children are sick and with no point of reference, can be quite disconcerting. My husband and I spent two days in the hospital with our oldest, one month before his first birthday. Sadly, we left the hospital not being anymore informed than before we arrived. I was also disappointed that the professionals caring for our son didn’t really work w/us, but rather told us what to do; take meds.
Through self-testing and unfortunately accident, we have learned what triggers his asthmatic symptoms. Dairy has been a big culprit. I even had early warning signs with his formula (my only formula fed baby), but was encouraged to “try another brand.”
I do hope your son improves. My son is now six and is still allergic to some dairy products, but not all. He is also familiar w/his body, knows to refuse allergy triggers, and immediately senses when he’s eaten something that may make him sick.
Continue searching for alternatives for your son. I know each case is different, but we have been able to eliminate the regular Albuterol/Pulmicort regimen that was “suggested” to prevent future episodes and replaced it with healthier food choices. If anything, I’ve become a better cook.
Hi there. I have a 2.5 year old daughter that has really bad eczema. Our ped told us it COULD be an allergic reaction to something she might be ingesting. Can anyone refer me to any sites containing good info on changes to make to begin with?
Thanks so much. It makes me so sad to read of parents having to see their children go through all of this. It was hard enough seeing mine in NICU for almost a week… at least they came through it quickly. I cannot imagine how you are able to cope with this every day. you’re a strong woman indeed. I hope he gets good results at the next testing.
=)
Just tried the GAPS site and it is amazing. As I read it makes sense not only for my son but for me too! Thank you for the link!!
Jen- I know it is so hard to watch your child suffer & itch from eczema. I thoroughly believe Jack’s eczema came predominantly from his food allergies- specifically milk. Check http://www.faan.com – The Food Allergy & Anaphalaxis Network and Dr. Rogers in Chicago is our allergist, she could reccommend someone near you. Good luck & don’t give up trying to find a cure for your child. It can & will get better!!!