Showing posts with label Dr. Wood. Show all posts
Showing posts with label Dr. Wood. Show all posts

December 6, 2016

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.


  • 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.

  • 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.

September 19, 2016

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!

September 9, 2016

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!

August 28, 2016

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! 

August 17, 2016

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