Friends and Family - Your Guide to Food Allergies

With the holidays in full force that equates to food and parties and navigating to keep you safe!

It takes a village. I would love for others to be more understanding and less judgy - for example, I get lots of eye-rolls when I am incessant about hand washing, yes with soap and water pre-eating and post-eating, every meal and every snack. That includes others that probably ate/touched foods you are allergic to and then they touch you, play with you, share toys, phones, etc. Sadly, you have had a reaction simply from others not washing their hands properly after a meal.

At this point in the game, I DO NOT care what others think about the way I parent you. It is my duty to keep you safe, alive and thriving.  Although, it would be grand if others were more understanding. I did come across a nicely written piece that does define great pointers for grandparents, which carries over to family and friends. I encourage everyone that loves you Jahan, to read this.

• We’ve been told that “It takes a village” to raise a child and that certainly is the case for a child with food allergies.  As a grandparent, you naturally want the best for your grandchildren, yet the notion of a life-threatening allergy to an innocent food can be hard to grasp.
  
  If your grandchild has been diagnosed with food allergies, you must take this medical diagnosis very seriously. Even if he or she is one of the lucky ones who will eventually outgrow the allergy, it is crucial that you err on the side of caution.
  
  Leading pediatric allergist Dr. Robert Wood of Johns Hopkins explained that “One of the most common causes of reactions in allergic children is related to food being provided by the grandparents who never really understood or believed the notion that their grandchild had this severe food allergy.” 
  
  The good news is that studies have shown that when caregivers are trained in avoiding, recognizing and treating allergic reactions, the frequency and severity of these reactions decreases.   The following tips can help you to ease the burden on your loved ones and will enable you to become a more reliable caregiver.
  
  1.    Abide by their rules—even if you don’t understand them.  Since the day their child was diagnosed, your son or daughter has been learning a new way of life with severe food allergies. There are a lot of ambiguities and there is a lot of stress.  Assume that the parents know best.  You won’t get a chance for a “do-over” if your grandchild has a reaction.
  
  2.    Doctor’s orders  Let your grandchild’s physician handle his or her medical care.  Allergy parents are bombarded with hokey tips and media stories of treatments and cures involving everything from worms, to herbs, to acupuncture.  Some of this research is very promising but for now, assume your grandchild is in good hands with his current physician.                     
  3.    Engage but don’t overstep. I read once that grandparents are like pinch hitters. They need to sit on the bench until they’re called up. Allergy parents (especially after a recent reaction or diagnosis) often have a lot of anxiety over their child’s condition.  If you are asked and are able to help, fantastic. But unless you truly believe your grandchild is in danger, don’t suggest alternative ways of managing allergies.
  
  4.     Pick your battles!  Holidays are one of the most challenging times for allergy families. Prioritize. What is the most important thing about the holidays? As Suze Orman says “People first.”  Yes, you want to make your traditional nut braid and thumb print cookies, but believe me, you can have a festive and loving holiday without cookies, candy, mashed potatoes, even pumpkin pie. But you can’t have a glorious family holiday if one family is missing. So think and think again about what’s most important.
  
  5.    Phone Home Ask an allergy mom where the phone is when she takes a shower, and 99% of them will tell you that it’s right outside the shower door. Most of us have gotten that call about an allergic reaction at one time or another. And when we’re leaving our child with a caregiver, our fingers have a mind of their own and we need to make that call to check in.  So when you are caring for your grandchildren, keep your phone within reach at all times.
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• 6.    Serve it our way.  You may have a swell idea about how to reheat little Johnny’s dinner but you did not realize that they spray you just put in the pan contained dairy.  You saw Alicia eating strawberry sorbet last month. You didn’t realize that the brand you purchased is processed on lines with butter pecan ice cream. Daniel’s noodles tasted so bland, you thought you’d add a little seasoning, not realizing that it contains wheat. Well-meaning people who are not accustomed to living with food allergies can easily make a dangerous mistake and put a child at risk. Hidden ingredients and cross-contamination have caused serious, even fatal reactions. Do yourself a favor, and serve your grandchild only the foods that his parents have approved and serve them in exactly the way they’ve asked.
  
  7.    Emotions count  You may find yourself thinking that your son or daughter is going overboard with precautions or restrictions. Perhaps you believe that they could safely attend a family picnic, vacation or wedding. You may be right. But consider the family’s emotional heath and stress level, especially if the child was recently diagnosed. Sometimes the anxiety level in the home is so high, that it is just not worth all of the preparations and worry about an event.  Sometimes it’s better to decline a stressful invitation and keep the family safe and calm at home.  The emotional well-being of the family members is as important as their physical health.
  
  8.    Get support for yourself   Recently, my mother explained that a good friend of hers was a tremendous support to her after my son was diagnosed. I’m embarrassed to admit that I actually thought “Why would you need support?”  And then the light bulb went off and I realized that my mother, my son’s grandmother, had also gone through the myriad of emotions that follows a scary diagnosis. Once you really grasp the severity of this life-changing medical condition, it can be overwhelming. So if you find yourself feeling  sad, or scared or grieving about your grandchild’s condition, get the help and support that you need from friends, your spouse or a mental health professional. 
  
  These tips are not a substitute for learning about food allergies, and how to avoid, recognize and treat an allergic reaction. However, if you show the willingness to become an informed caregiver, you will go a long way in alleviating the stress and allowing your son or daughter some much needed time off duty. Your concern will nurture and strengthen your relationship with the entire family. Isn’t that what grandparenting is all about?

One more point I would like to make - 1) Do not pity Jahan - you are not a victim. You were made this way. Mommy and daddy are moving mountains to unravel and "fix" your immune system.  We will celebrate the holidays in the coming years without food allergies. Maybe not this year, but soon.

Going Out to Eat with Food Allergies

Spontaneity goes out the window when you are allergic to foods.  So what does it take to go out to dinner or any meal when you have strict diet? Not much, frankly. But planning and calling ahead is key. Most people do not understand allergies, so a little explaining goes a long way.

Jahan, in your second year of life you have now decided to actually try pizza and you decided that you like it, (imagine that), well love it, we are venturing out to a local pizza spot. Taking a one and two year old out to dinner is a whole other adventure, but we are doing that too.

So what does it take?  So first off,  I found a restaurant that is "allergy-friendly" - they understand allergies (sort of) and offer items that are friendly, usually gluten-free (GF) and/or exclude the top 8 allergens (wheat, soy, eggs, dairy, nuts, peanuts, fish and shellfish).  Next, I call them during non-peak times. 2pm is a good time. I ask for the manager. I explain your allergies, what I would like for you to eat and ask for them to read the ingredients to me off every single item you will be consuming or offered.  After ensuring all ingredients will be safe, then comes the risk of cross-contamination. That means that other items that may have touched items you are allergic to then comes in contact with your food. For example, a spoon. Or butter that a utensil went into that previously touched wheat for example. None of that can happen - big no no, since we already know you have reacted this way.  Okay, so by now, the manager is either completely freaked out and tells me he/she cannot guarantee safety OR the manager is willing to accommodate and guaranteeing safety.  We like safety. Anything other than 100% is no go for us.   If safety is guaranteed, I tell the manager my name, when we are coming and that's it. Then when we arrive at the restaurant, I ask for the manager and all communications and expectations are set. I literally do this for EVERY SINGLE RESTAURANT. EVERY TIME. EVERY TIME WE TRAVEL. We have to live and venture out and explore the world. We will NOT put you in a bubble, so we take risks. We mitigate these risks as best we can, the only way we know how.

Cheers to pizza...and hopefully wine for mommy!

"How Do You Do It?"

Friends often ask me, "How do you do it?" Before I can answer, they often answer their own question, "I don't know how you do it."  I honestly don't know how I do it. What even is "it"...it's a lot.

Having a child with a chronic health issue is the most challenging thing I have ever gone thru and continue to go thru. Every day. Every party. Every play date. Every meal. Every label. Every bite. Every single damn ingredient. I would be lying if I said it's easy. It's incredibly challenging to be that parent.

You see Jahan, all I want for you is normalcy. I try so hard every day to fight for that. In your school, your classroom, with your friends, your family, at the table, at the restaurant.  I yearn for this for my baby.  We DO NOT believe in wrapping you in a little bubble, requesting food bans, which would impact so many others. Accomplishing this means, you are around foods so close in proximity to you, that it could do serious harm, as we have seen.  As your parent, I am trying to keep you safe, that means I feel the burden, the stress, the what-if.  Trying to educate others, I am often viewed as overbearing, overreacting, a helicopter mom and the list goes on, mostly negative. It is a hard journey.  Co-parenting is equally challenging.  Daddy and I will continue to be diligent in maintaining your safety and also your quality or life, including relationships and experiences.  Then there will be new challenges that OIT will bring. Many in fact. For starters:

• Will we all relocate to California? The thought of separating you from Emrys breaks my heart.
• Will we stay in Maryland and travel back and forth to California every few weeks for the duration of the treatment that takes years?
• Will you be successful with this treatment plan? Will we be successful?
• How will we manage your schooling while in treatment?

The list goes on and on. I don't know what we will do or how we will do it, but we will do it and you will ride off into the sunset, free from these shackles. 

The Cost of Allergies - Uncle Sam Give Me a Break!

As your mom - I manage most of your health and so I know how expensive all this can be and those costs can add up really quickly, and we have reasonable health insurance. 

From the steep $600+ for an Epi-pen to thousands of dollars each month on food suitable for your long list of allergies and doctor appointment visits to ambulance rides and hospital stays. The costs are high and climbing.  Since I am a CPA, I often get questioned on taxes and credits, etc. The short answer is, I have no idea about taxes! Well I know enough to be dangerous and hold a conversation at a cocktail party. But this got me thinking, are any of the costs related to your allergies deductible?

I did some digging and the answer is Yes! And no.

First, what can we deduct:

• Co-pays
• Transportation costs, including mileage, using the standard mileage rate
• Parking 
• Overnight stays
• FOOD!

Yes, you read that right. The costs of special food can be deductible. The food must meet certain criteria. Those criteria include:

• The food must not be used to satisfy normal nutritional needs;
• The food must alleviate or treat an illness; and
• The need for the food must be substantiated by a physician

"The amount you can deduct as a medical expense is limited to the amount by which the cost of the special food exceeds the cost of a normal diet.  So, for example, if you buy special flour that costs $7/bag because of a wheat allergy and regular flour is $5/bag, you can only include the difference ($2) for purposes of calculating the deduction.  In other words, you cannot deduct the cost of all of your special food; you can only deduct the difference between the cost of your special food and your "normal" food.  If there is no such "normal" equivalent, however, the entire cost of the product is deductible."

Keep records to substantiate the claims. The expenses may be subject to phase outs, eligibility requirements and other limitations and we can only deduct those expenses which exceed 10% of our adjusted gross income (AGI).

What you cannot deduct:

• OTC medicines, even if doctor recommended, example: Motrin
• Non-prescription based personal care products, example: oatmeal bath, creams

The big take-away here is to track all of our expenses all year and if we meet the 10% floor of our AGI, we can start deducting. 

Raisins are the New Candy!

Another trip in the books. This time we went to Seattle for a family wedding. We stayed with Grandma and Grandpa Perry. These sorts of trips where we are staying with someone and have a kitchen on hand are super easy for us to make your food and ensure you are safe. This makes planning really easy.  Except when you have a reaction, which you did.

You and Greyson enjoying juice

It was Friday night and chili and cornbread was on the menu. Cornbread, made of corn right - not so fast, there is in fact wheat in many versions, not all though.  You and your cousin Greyson, who is about six months older than you were eating. He had cornbread and you did not. He even washed his hands. Then you two went about playing like you have known each other for years! Then as I am eating, Daddy was bathing Emrys, I hear that cough you have when you have a reaction. That dreadful, sudden iconic cough. I stop eating and sit by you and watch. I don't think anyone noticed at this point what I was doing. I certainly don't want to draw attention to something if it is nothing because I think many people that don't deal with food allergies are on edge or they think I am over the top and making the situation more intense than they think it needs to be.  Anyway, you did stop coughing after a few minutes, so I went back to eating.   Everyone, including Greyson goes home. You get your bath and then your coveted milk. And then I saw it on your face, projectile vomit. At this point I knew you had come into contact with something, likely wheat, since that was the only thing prepared that you are allergic to.

I clean up the stinky mess with Grandma's help while Daddy bathes you again, much to your displeasure. You already bathed, why again!? Daddy and I watch you for about an hour and nothing else happened. I know you didn't eat any wheat, but came into contact with a very very small amount. You are very sensitive now, which means we all have to be incredibly careful about wheat.

Sharing raisins with Great Grandpa

Fast forward a few days, to the wedding. I cooked your dinner before we went and ensured I had endless amounts of food for you. During the cocktail hour, you noshed on your safe snacks, sharing some with your Great Grandpa Perry all while Emrys was able to eat freely on the sesame chicken, bruschetta and whatever else Auntie Chantel wanted to feed him.  What a feeling to not have to worry. I long for this day for our family. The fear and anxiety is real and it's every damn day, every damn meal, every event, every party, everything. But we still live, fly on airplanes, go on vacation, have dinner dates, attend play dates, laugh, smile and eat.  We will not let food allergies control us, we control them.

Knocking on Death's Door: Anaphylaxis

With you having your first full blown allergic reaction requiring medical intervention to derail the possibly life-threatening symptoms, I am hearing the same questions from friends and family,

• What was it like?
• Did Jahan swell up like Will Smith in Hitch?
• Was he gasping for air?
• Did it happen after one bite? 
• How fast did it happen?
• How did you know you needed to use the Epi-pen?

I want to address all of these. 

I had a conversation with your daddy on Sunday night that took me well past my 10:30pm bedtime when I asked him if he thought your reaction to a mere 281 milligrams of wheat was a wake-up call to him, would he have used the Epi-pen had I not been there? Would he have called 911, gone to the hospital, etc. etc. Daddy did not correlate the symptoms that your were having with having a severe allergic reaction. He didn't want to use the medicine and DID NOT want to go to the hospital.  Scary right? But why didn't he recognize the symptoms, why no Epi? Why skip the hospital? 

Your first symptoms included coughing, nothing crazy, but an obvious sign that there was something going on in your airway. That progressed to you vomiting, which is a great thing.   30 minutes went by and coughing began again, heavier, more frequent. Then itching, then throat itching. This is when I knew we had to intervene. There were clear signs of a systemic response and airway distress. Daddy did not agree with me. I pushed, we called and gave you the Epi-pen. Your symptoms stopped almost instantaneously. Wow - it was that fast. 

Daddy, like many people, including myself, thought that the reaction that would require medical intervention would be really fast, like in the movies, and it certainly can be, but it doesn't have to be. Daddy thought you would swell up, be gasping for air and turning blue. None of that happened, it could have, but it didn't get to that point. The reaction was slow, 45 minutes after ingestion to Epi-pen. Daddy also thought that the Epi-pen administration meant, we are in the clear, that's your parachute to safety, well sort of, but not entirely.  The epinephrine, which is the medicine in the Epi-pen, without getting too technical, helps to stop anaphylactic shock.  The medicine works almost immediately and then can wear off after 20 minutes or so and the reaction can persist. That is exactly what happened to you my love. When you got into the ambulance, about 20 minutes after you were given the Epi-pen, smack dab in your left thigh, the reaction began again. Head to toe hives, huge and small, red and clear. All. Over. YOU.

One of the hives - after Epi, Benadryl, Pepcid and Steroid. The size of my palm

Recovering in the hospital, scared, latching onto daddy

Daddy, like many, thought the hospital was more of a burden then a necessity, that was until he saw the post-Epi reaction begin.  The hospital would monitor your vitals, provide additional medicine (epinephrine, steroids, pepcid) to derail any further reactions. 

Anaphylactic shock can present itself in many ways, but a few take-aways for us, our family and friends:

• Allergies are no joke
• When giving new foods, pay attention for up to four hours for a reaction
• DO NOT WAIT - give the epinephrine before blue, swollen shut and knocking at death's door
• Go to the hospital post Epi
• Every reaction is different than the next and previous

Angel, recovering, you are so resilient Jahan

TGIF! We're in the Hospital

Some lessons tonight. You are NOT ready for wheat. We can confidently administer your meds. Epi-pen is worth every damn cent they charge. 

Here's our update on our at home wheat challenge: You failed. miserably.  Coughing occurred 15 minutes after ingesting three mini pretzels. Then a vomit. We thought that would be it. It wasn't. Coughing continued which can be indicative of an itchy throat, throat closing, swelling, etc. I got Hopkins on the phone, they said the reaction appears local, give Benadryl. We did. Coughing subsides. 30 minutes pass and I am watching you like a hawk.  You begin itching all over. Itching your throat. This is not good. Now a systemic response and it's moving around. I call 911 and tell daddy to get you on the ground flat. I grab the $600 Epi-pen and swing it into your left leg. You are not crying...yet.  A few seconds pass and I realize I had to stab you my son, I did it. Whew. You begin wailing and I know the needle went in. EMTs arrive and off we go to the hospital. On the way you had a third reaction. Giant hives head to toe. We are at the hospital and safe. You, my baby boy, are iv'd up and feeling better now. You are chatting about the fire truck and ambulance, typical for a two-year old.

A Feat with Wheat is on the Menu

It's the cocktail hour prior to our cousin's wedding. Many of the cousins traveled from all over the states to be together and here we are at the big shebang in Chicago! All are dressed like they're at the Oscars, and not just attending, but actually receiving an Oscar, Angelina Jolie style. And all the cousins have been practicing for some time, to surprise the bride and groom with an Indian flash mob dance! So exciting, but yet we were all pretty nervous. We had some time though, and cocktail hour was sure to relax the mood.

You at the cocktail hour, loving that wheat pouch

Not so fast though.  I turn to you and  you are eating a baby food pouch, you love them, they are virtually baby-crack, but more healthy than that.

I look at the pouch as you suck every last drop out and my heart sank, panic set in.  The picture on the front has a grain on it, I grab the now empty pouch from you and turn it around to read the label. I briefly scan the ingredient list and boom, there it is, "Kamut (wheat)" - oh my goodness. How did I miss this?? I have never messed up before. I immediately grab daddy and tell him what happen. We decide to administer Benadryl before anything happens hoping to ward off any reaction.  You gladly take your "vitamin" - and then I go over to a little corner with you in my arms and cry. I deserve the worst mom-award of 2016! I feel terrible. How could I mess up when there is zero margin for error. Many cousins, some of which are doctors come and find me and give me some pointers to watch out for. Benadryl is kicking in and making you really sleepy, which it has never done before. It usually gives you a boost of energy. Now my little party-loving, dancing baby boy is passed out in your stroller and will at best miss the reception we have all been waiting for. The reception starts, dancing performances are on. I am watching your chest go up and down in a steady rhythm. This goes on for an hour. I feel terrible still. Our flash mob happens and the rest of reception goes on. I know everyone had the most amazing time at this beautiful celebration, but I screwed up. I did not enjoy these hours at the reception,  hoping and praying, watching you like an eagle scouting it's prey, that nothing would happen.

Sleeping in your stroller while the reception goes on

The reception ended, I took ouy up to our hotel and you slept, and I continued to watch. Nothing ever happened, which makes the allergy journey all the more confusing. Your iGe for wheat has hovered in the 30s and 40s, it's your highest allergen. But then nothing happened.

On mommy's shoulders at the Baraat, waiting for the groom

You and Daddy 

Fast forward a few months and an allergy appointment later and I get a call on Monday morning September 19th 2016, it's Hopkins.  The doctor tells me that they have researched the pouch and despite your high iGe numbers for wheat, they want us to try a wheat challenge at home. I am....over the moon, elated and scared.  Doctor gives me the protocol for the wheat challenge and tells me that had you not had that accidental exposure in April, we would likely not be challenging you. We would still be strictly avoiding.  So maybe I get a pass on this one, maybe I am not the worst mother of 2016.  Here we go...stay tuned for results!

Cuckoo for Coconut

So about two weeks ago, your allergist called with the annual update and surprised us with good, but scary news. Your coconut number is likely a false positive and to proceed with trying at home.

Wow - ok, daddy and I thought. It is one thing to talk about foods getting added to our "safe" list, but to actually go through the process of adding them requires quite the courage.  We actually have to feed these once taboo foods to you and hope and pray nothing happens all while being fully ready and capable to address any reaction, which has happened in the past very quickly.

Saturday morning now, a full 24 hours since Dr. Wood's scribe called - I went out and bought the coconut water and milk and was committed to feeding it to you my baby boy.  I got home and I pushed to start. Daddy was more reluctant.  He usually is with this sort of thing.  I put some coconut water in a Tylenol-like syringe and told you it was a vitamin, which you are all too familiar with and ironically gladly ingests.  Daddy and I wait. We wait a total of about five minutes, which is usually enough time for you to react. Nothing happens.  It's real now. After four hours, nothing happened. This is what it feels like - it feels about as good as that coconut water tasted. Ecstasy. Exhilaration. Freedom. You are clear to eat coconut in all forms!! This is a cause for a celebration - which I have been doing for about the past week.  I have been celebrating by buying and cooking all things coconut! Oil, water, milk, coconuts, oh my!


I thought I would share a few of my favorites from this week's meal plan - hope you enjoy as much as we did!

• Toasted coconut brussel sprouts
• Honey garlic butter shrimp in coconut milk
• Coconut chia pudding
• Avocado coconut chia pudding

Ready, Set, Go Peanuts for the Baby!

Over the past decade, the prevalence of peanut allergies has exponentially increased.  For parents, children, families, physicians and teachers, there is significant frustration because the reason for this is still unknown.  There are many theories however, but nothing that is overwhelmingly responsible.  I will table this topic for another day. Back to the actual allergy to, rather than the cause - with this increase, peanuts are getting a lot of attention in the food allergy community and with that comes a lot of studies using them. One in particular, is known as the LEAP (Learning Early About Peanut) study. The study parameters, subjects and results were released in Q1 of 2015.

                                  

WHO: The subjects were infants (less than one year old) that were considered high-risk. High-risk equated to the infant having severe eczema (as described by the parent(s)), having a confirmed egg allergy or both.

WHAT: Some subjects will strictly avoid peanut protein until 60 months of age. The other group will receive peanut protein, regularly in their diet, multiple times per week until the age of 60 months.

ADDITIONAL INFO: Subjects were further stratified by sensitivity to peanut evidenced by a skin-prick test. Subjects experiencing a severe reaction to peanut at this point were dismissed from the study since they would likely be unable to consume the weekly requirement of peanut protein.

CONCLUSION: The results were remarkable. High-risk (eczema and/or egg allergic) infants showing mild sensitivity to peanuts or no sensitivity to peanuts via a skin-prick test that regularly ingested peanut protein until 60 months of age had a dramatically lower chance of developing an allergy to peanut when compared to the strict avoidance group.  There small window of opportunity to potentially change the infants sensitivity to peanut protein.

Ultimately what this study illustrated went against the American Academy of Pediatrics' (AAP) recommendation to delay peanuts.  The AAP has since revised their stance on the introduction of peanuts in high-risk infants.

In summary, at the earliest signs of eczema and/or egg allergy, an infant should be tested for a peanut allergy. If negative, introduce peanut products and have infant/child regularly consume following the LEAP protocol of at least two grams three times per week indefinitely.  If positive, complete the initial introduction of peanuts under medical supervision.

Pregnant? What Your OB is NOT Telling You

You're tired. You're hungry. You're nauseous. You're late.

You're pregnant! Congratulations! Babies are the world's greatest gift and they provide endless joy and challenges. What happens when those challenges are health related and could have been prevented or been less extensive?  Well, from experience, it sucks and you then work to restore the baby's health.

When pregnant with Jahan, I followed the advice of my OB, she was board certified and it was her fiduciary duty to guide me to optimal fetal health. She prescribed me prenatals that were rather pricey, $100 for a month supply, and didn't provide any other recommendations. I would visit her monthly until I was 36 weeks along and then I visited her weekly until my son was born.

There was no other guidance from my OB, so I opted to do my own research.  Some things I learned included:

• There is a vaginal advantage versus a c-section. A recent study from the Canadian Medical Association Journal discusses this further.
• There is a clear advantage in breastfeeding versus formula feeding. Here are 18 breastfeeding benefits and here is a more scientific article that credits breast milk with a lot of positives. The immune system boost to the baby when breastfeeding is undeniable.  A simple google search will yield endless articles, scientifically backed showing the benefits of breastfeeding.

So shoot for a vaginal delivery and breastfeed the baby - easy enough. 

Once Jahan arrived and started showing baby eczema, we learned a lot of other things that we could have done while pregnant to ensure the highest immune system possible. My OB never shared these tips. Perhaps she didn't know. Maybe a new protocol could be to see a pediatrician or immunologist at week 20 of pregnancy. There has got to be a way to ensure pregnant mothers receive all information that may impact their baby. Some things to consider while pregnant:

• Avoid antibiotics while pregnant and get Group B Strep tested closer to delivery instead of at 35-37 weeks
• While pregnant, supplement with prebiotics and probiotics
• Ensure you are getting adequate Vitamin D
• Limit sugar intake while pregnant
• If a c-section is required, inoculate the baby with mom's vaginal flora immediately following the c-section delivery 

When pregnant with my second child, Emrys, I applied all of the above and he has had no immune system issues. His microbiome is flourishing.  He has had none of the complications Jahan has had and we also expose him to germs and dirt! 

That Dreaded Call

It's been a week. A week since your  last blood draw, probing for the latest and greatest, ok maybe not the greatest.

This is pretty standard protocol for someone with food allergies. Test the patient annually for new trends in the numbers, expose new allergies and sometimes, but not all that common, drop some allergens off the list.

This call for us has only ever been bad news. Actually all results from any doctor you have seen has always been bad news. More allergens should be added to the list. Avoid more foods. Your immune system is working on overdrive all day every day.  It's exhausting and temporarily depressing.

Daddy and I are curious where your numbers are now that you are two and your immune system is more mature and has been getting massive boosts from Dr. Wong's supplement protocol.

It's now been a week and a half. Friday morning, the phone rings and I know it is Hopkins because there is no caller ID. I answer, it's the doctor's scribe. The scribe takes all the notes and makes all the calls. She is also an MD.

She starts with, "La-Tasha, there are a lot of numbers, where shall we start?"

My heart is pounding, I'm thinking, "shit, what now?"

The scribe proceeds by asking if I have been giving you seeds like they suggested. Chia seeds, flax seeds, pumpkin seeds, etc.  No, I have not because I am SCARED! I am scared to give you anything new. When we give new foods, it must be on a weekend about midday. That way if you react, we are home and awake and can manage. She tells me I have to try the seeds, today. Once you have tried all of those seeds, try sunflower because that number came back low. Woohoo, small win there since we thought sunflower could be a new allergen. Now we have homework.

Then she tells me that coconut came back very low and there is likely no allergy anymore. We have been avoiding coconut like the plague for a long time. I am beside myself with glee, just imagining the possibilities with adding a new food. Coconut milk, and water and oil and yogurt and ice cream!  She tells me to try it at home and the medical team is confident you will tolerate it with no reaction!  More homework.


Next she tells me, you will need to come in within the next year, to Hopkins to challenge peanut! Your numbers are so low and following overall decreases to most allergens and because of risk of anaphylaxis they will feed you peanuts in the hospital setting while monitored and under the doctor's care.  The good news keeps coming - This. Is. Unreal.

We chatted for a few more minutes and concluded the call with a summary. Your numbers are decreasing for many items, but he is still highly allergic. Seeing overall reductions in a two-year old is a trend that points to a high likelihood of outgrowing many of these allergens.

I hang up and just sit there.  That dreaded call wasn't. It was delightful.  A flood of emotions continue with all this amazing news.  This is the first time that I feel real hope that you will be ok. We will get thru this.

Now it's time to try our new foods! Coconut, we are coming for you! 

A Glimpse into 2020

With the boys' school closed today, we opted to make great use of our time together and explore the local area.  First up, a farm. Pony ride, check. Petting zoo, check. Goat feeding, check. Now time for lunch. Jahan plowed thru his sandwich and fruit, the sun amps up his appetite for some reason.




After lunch, we hopped into the car to pay a visit to this restaurant I have been wanting to try for sometime. It's called One Dish Cuisine. The restaurant prides itself in being very allergen friendly and free of most things that could send Jahan into an allergic tailspin.

We pulled up and went inside and were greeted by the owner. After a short intro, I learned that his wife has many food allergies and he was inspired to create an atmosphere for people like Jahan, to eat safely. Freely. And be a normal kid and eat a damn cupcake or a cookie or both.

Jahan asked for a chocolate cupcake. This was a first, not the cupcake part because I cook and bake all sorts of things at home, but the part about ordering dessert in a restaurant and eating it at a table in the restaurant. Seems basic for most, but not for Jahan.  We all sat down as I placed the chocolate cupcake in front of Jahan. I smiled, watched and waited with joy and my camera of course. Jahan still is unaware of how his allergies impact him, so this moment really was for me. Jahan removed the frosting and ate one-third of the cake - then he was done.  The freedom I felt in not having to ask one question about what was in that cupcake, what is the risk of cross-contamination, what are the "natural flavors" was indescribable  - to my surprise, that is all I really got from this moment. There was no extreme exhilaration as I thought there would be. Jahan is not a "foodie" by any means. His appetite is very small, so he did not show the excitement I was expecting even when eating the cupcake. He just doesn't really care about food or even sweets. In a big way, this makes dealing with his allergies much easier.  The joy I was expecting will only come when I see Jahan excited with glee, usually while he is playing soccer or trucks with his brother or at the beach with friends or a backyard barbecue with a slip-n-slide.  Fun>food.

Jahan removed the frosting - his least favorite part

Jahan all finished with his cake

This moment let me take a glimpse into our future and feel what that freedom will be like when Jahan is completely cured, yes I said cured of his food allergies.  

It's About the FUN not the FOOD!

With our beach vacation wrapped up, I am reflecting on this experience and how I felt throughout our beach weekend.  The trip included 22 people, 12 adults and 10 kids. The kids' ages ranged from six months to eight years old.

The kids enjoying their Maryland beach vacation

Trips like this allow Mehul and I to see how other kids eat. Freely. Wow - what a luxury that most parents take for granted.  One had a hot dog at the boardwalk. Others were allowed to eat anything from anyone without question. And of course no required label reading  The kids on this trip were far less picky than our sweet boy. Their diets seem so diverse.  A part of this is because innately the other children are simply not as picky as Jahan. They would eat foods with color also known as fruit and vegetables!  Their appetites much larger. And then of course, no food allergies, not even one.

It still is a tough pill to swallow to have to tell Jahan he cannot have what his friends are eating and it will make him sick. He cannot have the french fries on the boardwalk that daddy is eating because of the oil it is fried in. He cannot have the chicken that was made for dinner because of ambiguous ingredients.  It hurts my heart that my boy will soon know that he is very different from his friends.

With all of the "nos" and"cannot have those" this past weekend, Jahan was shown some love by one of our dear friends.  She sought out a Jahan-safe recipe separate from the others that would mimic what the others were having.  Jahan loved it!  Moments like this shows us how much Jahan is loved and we cannot express how grateful we are to have such wonderful and understanding people in our lives.

With all of the emotions that come with having a child allergic to many many foods, I have to remind myself, that the life we live is about the fun we are having, not about the food we are eating.

No horseback riding, but this was the next best thing!

Jahan won this lil monkey all on his own!

Super Foods - Part 1

As Hippocrates once said, "let food be thy medicine."  Despite Jahan's multiple food allergies, which will all be treated starting in the next 24-30 months using OIT, food is the best option for medicine. Food will address the most pertinent issues (excluding the allergies) currently plaguing his two year old body. Leaky gut, inflammation, the presence of pathogens, unacceptably low levels of of good bacteria and eczema can all begin to heal by eliminating the inflammatory foods, ingesting a diversity of fruits and vegetables and taking daily vitamins and supplements.

While none of us are doctors, my husband and I have consulted with multiple functional doctors, functional/holistic dietitians, allergists and dermatologists and we have compiled a list of some of the best foods to help obtain optimal gut health based on their recommendations and our personal results.

Getting your two year old to actually consciously eat these foods or any foods other than juice, pasta and milk is an entirely separate and equally challenging endeavor.  Consider yourselves extremely blessed if your toddler is eager to eat and try new and different foods.

Here is part 1 in the Super Foods Series

1. Jicama - If an apple and a potato had a baby, Jicama would be the result.  This starchy tuber is packed with vitamins and minerals, especially vitamin C. Vitamin C is great for boosting the immune system of which a whooping two-thirds is located in the gut.  Jicama contains a prebiotic called inulin. Probiotics seem to get all the love these days, but prebiotics are ultra important too because they are food for the good bacteria.  If you don't feed the probiotics, they go away. Prebiotics promote the growth of the good bacteria in the gut. Jicama is refreshing raw sliced in a salad, added to a smoothie or cooked like any style potato you may fancy.  
2. Sweet potato - This starchy tuber is the gift that keeps on giving. Sweet potatoes provide high amounts of sustained energy without causing the body to spike.  Sweet potatoes are a also a prebiotic, so the good bacteria feeds off of these. Sweet potatoes are delicious baked, steamed or fried. 
3. Turmeric - This spice is used daily in our house. Turmeric is very commonly used in Indian cuisine, but word is spreading about this 8th wonder of the world. Turmeric is known for it's anti-inflammatory properties and can be used to treat a wide variety of digestive inflammatory diseases including Crohn's disease, irritable bowel syndrome (IBS) and indigestion.  Turmeric can be added to smoothies or sprinkled on potatoes.  We simply add to our toddler's milk at each serving and he gladly downs it. 
4. Salmon (wild caught) - All salmon are NOT created equal.  Farmed and wild salmon may look similar, but farmed salmon are loaded with antibiotics, which are extremely harmful to the gut flora's environment.  In addition to that, wild salmon has more protein and less fat per serving, less toxic compounds and lacks the artificial coloring that farmed salmon contains.  Oh and the taste, there is no comparison.                      
5. Plantain - A resistant starch. What does this mean?  Without getting too scientific, plantains resist being absorbed as sugar, instead, these starches travel to the small intestine where they are turned into a short-chain fatty acids, which provide energy to the cells in the colon.  Inflammation reduction also occurs.  Green plantains are delicious fried. This Puerto Rican version is similar to how I cook them at home. 

Stay tuned for more posts in the Super Foods Series. 

The Squeaky Wheel Gets the Grease

It's the last weekend of the summer of 2016, well according to the schools anyway.  The Patel's last hurrah and we are super excited to be doing it with five other families, one which we have never met. Vacations used to be the source of a lot stress and anxiety.

• What food will we pack for Jahan? 
• Will we have a kitchen?
• Have we considered all the precautions at the airport and on the airplane?
• What will he be able to eat at the restaurants? 
• Will the restaurants be able to accommodate his multiple allergies?
• Did I research all the restaurants and call ahead to speak with the chef and manager(s)? 
• How and when do we break it to the others in our group that they are important players in the game of keeping Jahan safe and reaction free? 
• Will they have stores nearby to restock should we need more Jahan safe food? 
• How close are the nearest fire stations, hospitals, etc. should he have a reaction?

And the list could go on and on - the squeaky wheel gets all the damn grease! What I mean by this is Jahan usually gets most of my attention in planning for a trip that often I forget something for Emrys - never fails me. 

There is zero margin for error. I, we, none of us can make a mistake.  This is a lot of pressure for people to carry. We are all much more comfortable with this process now because we do it all the time.  We includes not just Mehul and I. Our friends, our family, the school teachers, all are nothing short of amazing.  I am quite vocal, maybe to the point of being annoying, but everyone we associate with knows Jahan has allergies and while he is still young, it's everyone's duty to help keep him safe.  

My mantra for Jahan is that he may have a restricted diet, but he will not have a restricted life. We will actively participate in everything - Jahan goes to a group setting school, has a better social life than most 30-somethings, has stamps in his passport and will be going on his sixth vacation this summer.  Isolation does not work for us. Here is to an amazing reaction free weekend with wonderful people and not forgetting any of Emrys's things! Let the memory making begin! 

The Scratch that Itches and the Itch that Scratches

Jahan's eczema at seven months old

The correlation between eczema and food allergies although undeniable, is often not common knowledge to all.  Jahan's food allergy journey began shortly after birth with full body eczema covering his tiny body by five months old. Weeping, bleeding, itching, repeat. It's the scratch that itches and the itch that scratches.  We have had ups and downs, learning a lot along the way, but around the age of 14 months old, Jahan's baby skin was finally just that, soft and supple, like it's supposed to be.

This lasted for six short months and then a chest to knee flare began. Wet-wraps, diet revisions, elimination diets, creams and ultimately steroids. Ugh, that feels like the ultimate fail, having to resort to god awful steroids on my toddler's young and still thin skin.  All to end up back with an unwavering flare.  We opted to see our functional doctor, think east meets west, a holistic, natural MD.  The marriage of the two had produced some amazing results in the past, so I thought, lets get in to see Dr. Wong.

As we meet with Dr. Wong, Jahan is fearful, he must be thinking what will this doctor do to me. He has seen more doctors in his short two years of life than I have in my 32 years.

Right away Dr. Wong takes a look at the eczema and then scans Jahan's tongue and suggests eliminating cow diary. That's all milk, cheese, yogurt, mac n' cheese, string cheese, pirates booty, milk chocolate and the list goes on. We will switch to goat dairy, no problem since we live in an area where we have access to these foods and Amazon basically delivers same day now.  Dr. Wong also reminds us that Jahan's eczema is his body's way of showing the internal inflammation and suggests we complete a stool sample to see inside of his gut, where two-thirds of his immune system lives.  We agree.  Then Wong as Jahan calls him tells me that I have to prepare the samples at home, FedEx them overnight to the lab and wait.

Eczema flare at 22 months old before dairy elimination

So off we go.  Waiting for Jahan to have a bowel movement was our next step, which thankfully was only the next day (Saturday).  Jahan does his business and quickly I start in on this home scientific lab.  This was not fun.  Spooning fecal matter into various tubes, mixing and smoothing, repeat. They should really consider sending a mask home with this sample kit.  Not one of my finer mothering moments, but someone had to do it.

I package it up and off the stool goes to the lab for testing.

The results are in and right away from them I can see there are issues that need to be addressed. Inflammation. Leaky gut. Dysbiosis. Minimal bacterial diversity. And worst of all, two pathogens. Shit, how did this happen to my little guy? He was born vaginally, solely breastfed for 6 months, no antibiotics for the first year of life, probiotics from birth. He's only two!

Jahan's eczema and gut resolution regimen 

We circle back with Dr. Wong and he confirms everything from above.  Mehul and I are not interested in putting a "band-aid" on Jahan's symptoms, we want to solve the problems at the root. Wong knows this. He works to find "safe" supplements for Jahan's issues. This is quite the task given all of his food allergies, but ultimately we go home with our list of supplements and prescription to remove all dairy, even goat. So now Jahan is dairy free and ingesting 11 vitamins, supplements and herbs multiple times daily in hopes to improve the gut.

With this routine, the eczema has dissipated entirely with the exception of one stubborn patch.

And now we will continue the routine for eight weeks and then I get to spoon, smooth and smell the fecal matter of my adorable two-year old....again all while hoping we can stabilize Jahan's gut and entirely eradicate the scratch that itches and the itch that scratches.

Sometimes You Feel Like a Nut

Sometimes you feel like a nut...so you eat it. Not my sweet Jahan, no nuts for him, at least not yet.

Jahan is allergic to tree nuts and peanuts among many other foods. Today Dr. Wood, yes the renowned Dr. Wood, provided a glimmer of hope in the allergic world in which we live and have lived for almost all of Jahan's two years of life. "Coconut and almond appear to be false positives, but we will need to confirm with a blood sample."  I know what you're thinking, "who is allergic to coconut, it's hypoallergenic?!"  Jahan is or wait maybe he was...allergies are complicated!

And off we go to get labs done. This never gets easy. Jahan does not appreciate being dealt the allergy card thus resulting in recurring pokes and prods. Jahan has had many many blood draws, more than me through both of my routine pregnancies.  Today was good, it was a successful draw which included only a few tears coupled with tortuous shrieks.  I know soon those wretched screams, welled-up eyes and that flailing toddler body will become more subdued during these all too common procedures.

The aftermath, REM covered with banana bread crumbs