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June 16th, 2013.

Sunday, June 16, 2013

Wow does time fly. Its been a very long time since I've used SP. So much has changed. In January of 2011 I had my third and final child, my son, Mason. He adds so much life to our house I feel so blessed that he made it out of my 'uterus of doom' in one piece. Barely, but he did make it.

I had such great intentions of jumping right onto weight watchers after he was born and losing all that pregnancy weight. When he was 5 weeks old I marched in and signed right up. All was well.

Just 11.5 weeks later my first grand daughter was born, our sweet Adelaide. Suddenly after so many years of infertility and miscarriage and sadness our house was full and we were happy.

Things did not go smoothly with my son's health, however. He was lucky to make it here alive. We discovered he had a true knot in his cord upon his birth. This explains why he stopped moving and we were told had he not come at 37 weeks we probably would have lost him. After birth he had serious blood sugar issues. His blood sugar level was 20 and needed to be around 70. I was forced to feed him formula to keep his BS up. Then we had the jaundice scare and of course the 'he's not gaining enough weight' ordeal.

After starting him on solids he began vomiting all the time. By 9 months it was clear there was a problem, but getting his Dr. to listen was difficult. Drs. live in the realm of statistics. Genuine food allergies are rare. I suspected a dairy allergy but his symptoms were totally random. Some days he'd hive up with something that contained dairy, sometimes he'd be fine. But always there was vomit. He vomited 5 times a day.

At 12 months I gave him his first taste of milk. Oh I was so looking forward to weaning this kid. I've found that as an older mom I struggle to lose weight when nursing. Its like my body just won't let go of the weight and worst I gain so quickly. I can gain 6 pounds overnight and it will take 3 months to lose it. So discouraging. He drank about 4 ounces of milk and then proceeded to vomit for hours.

A few days later I have him a bottle with milk in it. He drank one ounce and vomited 5 times. Ok. Dairy is clearly an issue. But then why was he able to eat cheese? Sometimes. Sometimes not? It didn't make sense.

The day of his 12 month checkup I fed Mason a scrambled egg yolk and he broke out in hives. Up to this point his Ped. didn't think my complaints about vomit and hives were anything to worry about. She was convinced I wasn't paying attention to what I was feeding him because if he was truly allergic his reactions would happen every time he ate a food, not randomly. I casually mentioned the egg hives at our check up and the Dr. took this very serious. She ordered an allergy panel. I was a little surprised that the 6 months of random hives and daily vomit hadn't worried her, but a few hives on his face after egg yolk did.

I was certain that he'd be allergic to dairy and eggs and at the time had no idea how serious this was. I was worried it would come back negative and then the world would continue to think I was nuts when I complained of the random reactions. This test was on a Friday afternoon the day after he turned 1. Jan 27th, 2012.

It is never a good thing when the phone rings at 6am and its the Pediatrician. Never. She told me my son was a very allergic kid. He'd tested positive for everything. Highly allergic to everything in the panel. Well, except shrimp. She told me not to panic, because most tests are false positives and reactions are what count. She referred us to a pediatric allergist. It was ironic because I had googled and read about a kid that was allergic to everything. I remember saying, "Can you imagine that?" to my husband.

Do you know what its like to have a small baby, who is barely clinging to the 5th percentile and be told everything he 's eating is a potential allergen? I spent some time researching and learned very scary things about food allergies. As in...hey your kid could die if he eats something he has an Ige mediated allergy to. Ige mediated are food allergies that happen immediately. They are the only kind that they can really test for either through a skin prick test or a blood test. s

So scary. After meeting with the Pediatric allergist and keeping diligent food diaries for our son it appeared that he was indeed allergic to everything. He vomited or hived up with nearly every food we tried. I can't tell you how difficult this time in our lives were. Grocery shopping was a nightmare and I appeared crazy as I sobbed in the aisles searching for anything my son could eat. I found a support board for food allergy parents, but this was depressing as it seemed that everyone had symptoms that were consistent and were only managing one or two foods. We only had a few foods he could eat. I found a message board for kids with a horrible disease called eoe and I read them to make myself feel better. At least my kid didn't have that.

Luckily he was still nursing so we had that to fall back on. After we removed all but a small handful of foods from his diet things got better. He could eat beef, shrimp, pork, rice, olive and canola oil, apples, bananas, peaches carrots and beans. For 5 months life was pretty good. He stopped vomiting. He didn't have to go to bed hungry. I was happy.

Then he started breaking out in hives with peaches. Then we lost beans. I still mourn for beans. Then he started vomiting again.

When I'm on my deathbed I think this time will be some of my darkest memories. Here, after SIX miscarriages we'd finally had this beautiful baby and yet keeping him alive was proving to be rather a challenge. I confess to outright panic with every hive. Sobbing every night as I put my 1 year old to bed with virtually no nutrition in him as he'd thrown it all up. What had happened? We were doing so well.

It was than that I suspected something more than "Just" food allergies was going on. I requested our Dr. refer us to a Ped. GI. I needed to rule out EoE which stands for eosinophilic esophagitis. I feared this disease. I wanted to prove he couldn't have it. The other EoE moms on the support board had been warning me that all the vomit would be a red flag for them. Yet I knew that God wouldn't do that to me. He couldn't. He only gives you what you can handle. And a kid that literally was allergic to most food...FOREVER was more than I could handle. Go ahead...search eoe on youtube. You'll cry. We are talking about kids who have birthday cakes made of ice as that is all they can have. Sometimes forever.

EoE is a rare food allergy disease that causes white blood cells to attack the esophagus when trigger foods are eaten. The immune system goes haywire and thinks that food is a disease that needs to be fought off. Its tricky because the reactions are delayed. Unlike Ige Mediated food allergies which happen immediately upon eating (within 2 hours, but usually within a few minutes), eoe symptoms can take days or even weeks to occur. This makes figuring out what is causing the symptoms (usually vomiting and choking, stomach pain).

Usually EoE kids test negative for food allergies. But sometimes they light the entire panel up.

We met with the GI and I explained our situation and was so sure she was going to say, "well all his reactions happen immediately so it can't be eoe". But what she said was, "So Jennifer, you think since he has so many food allergies he can't have EoE which are food allgergies".

Crap. The only way to diagnose this disease is to have biopsies done of the esophagus. Watching my baby be put under was horrible. What if he never woke up?

At the surgery we found that he had visible furrows, and white plaque on his esophagus. In other words..."Text book" visual of what eoe looks like. I was shocked. I mean shocked. Even though I think on some level I always knew...I was so shook up by this there are not words to express my sorrow.

Crap. I have never been so worried, scared and devastated in my life. There was a moment when I thought of just getting in my car and getting the hell out of this situation. I did not want this for my son. This is a life time, chronic illness that has no cure. There are some kids who never can eat food. They live on feeding tubes fed by medical formula. These kids are in constant pain. They will literally starve to death rather than eat. My poor little guy was sick. He looked healthy, but he wasn't. He in all likelihood has been in pain his whole life, but since he has always been in pain he didn't know that eating isn't a painful ordeal. It was just normal for him.

This September it will be 1 year since we learned our son has EoE. We have adjusted to this new normal. I've come to peace with the situation as best I can. It has changed my relationship with food forever.

Food cannot be the center of our lives. It cannot be the center of celebrations for us. My son has a small handful of foods he can eat. Everything must be prepared by me from scratch. I have to mix our own safe flour blends. There are very few products available that he can eat so my days are spent cooking, and then cleaning, and then cooking again. Family get togethers are difficult. Explaining to people that something as innocent as a Dorito could kill my son sucks. I'm the crazy peanut allergy mom on the airplane. You know the one that has to wipe the plane down before we can put my son on it and that they make the announcement that there is a peanut allergy on the flight so no snacks will be served? Yep...that is us. And guess what...the one time we did fly, Mason broke out in hives anyway. We have no idea why. But being at 35,000 feet with a kid that may or may not be going into anaphylaxis was scary enough to make me realize its not worth it.

We can't eat in restaurants. Mason will never be able to go to McDonalds. We can only vacation if there is a kitchen there. There is no stopping for a bite on the road. Milk causes anaphalaxis in my son. A few drops and he collapses. This means he can never go to day care. All those years spent studying and getting my degree and Professional Engineers license? Goodbye career. Going to the park is terrifying with all those kids with bags of pb&j's and doritos and milk. Their grubby little fingers touching everything. Mason breaks out in hives nearly every time we go to Target. I think its the Starbucks. Food allergies suck people.

I know people who don't have food allergy kids think I'm crazy. There are a lot of people out there who don't know the difference between a food intolerance and a true allergy. Food allergies are serious business and scary. My own family think I'm crazy and say things like, "how do you know he really is allergic". As if he faked stopping breathing and all those hives, and the testing. Sigh. But that is ok. People will think I am crazy. I don't care as long as my kid stays safe. I used to be one of those people who thought food allergy parents were crazy. Ask me about peanut allergies..I've got a million jokes. At least I used to. Its not so funny anymore.

Life has continued and between the slow economy and the expense of managing a chronic illness (Mason's food is EXPENSIVE, his medicines are expensive and his medical bills are expensive), there have been other challenges.

Meanwhile my sweet 7 year old "non food allergy" kid has grown into an egg allergy. We found out when her throat closed up after eating eggs one day. One day they were fine, the next she couldn't swallow and thought she was dying. I thought there was no way she'd grown into an allergy so I fed them to her again. I'm grateful that she is still with us. Sigh. Did I mention this happened right after we started raising hens? Yep...God has got a pretty funny sense of humor. He must know how much I'd appreciate the timing.

I also started having major knee pain. I finally went to the Dr. and did the whole x-ray, MRI, ordeal to be told I had a torn meniscus in three places. Only when they did the surgery to correct this did they find my menisci are lovely...its that I have zero cartilage under my knee cap that is causing issues. Zero. Apparently some old injury that could have been 20 years ago caused this. I'm in extreme pain everyday. I've been told I can no longer walk for exercise. Or really do anything. No elliptical, no treadmill, no jogging in place. Awesome. My only option is to lose weight (with no exercise) and take narcotics to manage my pain. I hate narcotics. I won't take them so I live in constant pain.

So...there it is. That's my excuse. I could say I've let myself go, but in reality I didn't have anything left over to even put myself on the list of things to be cared for. Until this knee issue. Now I have no choice. I've been swimming everyday. It hurts like a (insert favorite cuss word here). But its all I've got. My son weighs 25 pounds and carrying him kills me. Its excrutiating. And guess what...I've got 50 pounds of extra fat on my right now. That's 2 of him.

So my plan is to do upper body and core strength work, swim and cut my calories until I lose about 50 pounds. I've already lost about 10.5. My current weight is an astonishing 200.8 pounds. Sigh. I'm not proud. But I'm not mad at myself either. I've kept my egg allergic daughter happy with her favorite foods now egg free. And most of all I've kept Mason off a feeding tube. There is no guarantee that he won't need one in the future...but so far he is growing and healthy. And that's a BFD.

So here are my stats for posterity:
Upper Arm:RT-14.25", LT-14.125
Chest:45" (still nursing, still dying to wean, hard to deny my son this comfort)
Waist:38.5" (Sigh)
Hips:48.25"
Thigh: Rt-27, LT:26.75"
Calves: Rt 16.5, LT 16.5.

So there it is. My life since last I spoke about it.

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Member Comments About This Blog Post
  • AUDREYSMOMMY
    Thanks Janet & Kim! It sure would be easier if we could just give up food altogether...though under the circumstances I get uncomfortable even making that joke.

    I assume the allergy is to the egg white because with IgE mediated allergies it is the protein that the immune system responds to. Unfortunately you can't completely separate the white from the yolk 100% so even yolks aren't safe. Honestly I don't even know for sure that its an egg allergy. All I know is that twice upon eating eggs her throat started closing up and she struggled to swallow and breath. Part of me hopes it was a panic attack. She's seen a lot of scary stuff with our son. But the only way to know for sure would be to do an In Office Food Challenge at the allergist's office and she says she'll die if she eats another egg. Yikes.

    I've never used an egg replacer because I can't find a commercially available one that is safe for my son (usually potato starch, sometimes corn starch or soy is included), but I've started using flax gel and that works great. I've replaced up to 4 eggs before. It comes out a bit dense.

    I'm now a fan of gluten free vegans for obvious reasons. I used to make fun of them emoticon !

    I am so thankful that we have no reactions to dye's etc. Sadly food allergies make me things that are artificially flavored something we can give our son without worries (dum dum suckers) because there is no protein in them. I feel horrible for the moms who don't have this option!

    I'm going to have to google about the chiropractor! At the surgery the Dr. gave me a cortisone injection and for 8 weeks I thought I was cured. Then I woke up and it was worse than ever due to the scar tissue I now have.
    2961 days ago
  • DETERMINEDJANET
    I read this and just found myself nodding my head understanding how people "don't get it" until they have to walk through it. We get that with our son because of his autism (mild) and his food sensitivities. Gluten gives him something like a drug high and crash. Eggs make him so angry. Red Dye 40 makes him irrationally angry. I know...mild in comparison to what your little guy has to endure, but in my own little way I "get it."

    Is your daughters egg allergy to the whole egg or just white or yolk? Isaac's is the whole thing and in any quantity so I use egg replacer and can't make anything that asks for more than 2 eggs or it just doesn't work.

    Your knee.... my hubby has the cartilage issue and he found a chiropractor that has done pressure point activation and after about a month he will be getting an injection. It appears to be working and his knee is better than it has been in years. Something you might look into.

    Praying for you!
    2962 days ago
  • no profile photo CD13365703
    You have got a lot of challenges and they all center on food. That is tough because food is something you can't ignore. Good luck with your plan. Losing the weight will make doing things easier, but it's a tough road ahead. emoticon
    2962 days ago
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