Monday, December 10, 2012

A Night "Out"

The Big Overachiever and I keep saying that we need to find someone to sit with the kids so we could get out of the house for an evening.  The ideal plan would include prompt service so we can focus on conversation that does not revolve around the children.  What is it that they say about the best of intentions?

Last night we got 6 hours out of the house together.  Six whole hours!  Unfortunately, we didn't get to enjoy our kid free time because it was spent in the emergency room. The Big Overachiever took me in when I went from fully awake to barely conscious within a matter of minutes.  There was initially some concern that I may be having an anaphylactic allergic reaction because I had just started an antibiotic.  (My body doesn't like antibiotics!)  But my vitals were all perfect.  My only symptom was that I was sleeping.  I vaguely remember medical personnel pinching and yelling as they attempted to get me to respond to their questions.

They ordered a CT scan, an EKG and toxicology screens.  Somewhere along the way, I awoke on my own with no ill effects.  It was as if I'd just awakened from a short nap, refreshed and ready to go.  Word of my awakening spread quickly through the ER.  A parade of medical staff came through to ask me how I was feeling.  Each doctor went through the same list of questions.  No, I do not drink.  Nor do I smoke.  I am not now, nor have I ever been, a user of illicit drugs.  No over the counter or prescription medications had been added except for the antibiotic.  No, Doctor, I did not try to kill myself.  I promise!  You'll believe me when the test results come back...

In the end, I was pronounced to be in apparent good health, with no brain tumors and perfect cardiac tracings.  I did not have a seizure.  There was no sign that I had overdosed on any medication, singularly or in combination.  In fact, no one could explain how I was awake and fully functional after having been barely conscious just a few hours earlier.  My instructions are to discontinue the new antibiotic and see my primary care provider on Monday with the message that the ER attending (who trained my PCP) has classified me as a medical mystery.

So we got our evening without the kids and we didn't even have to wait all night for service.  Exactly what we were hoping for, right?!  I think maybe we need to be a little more specific about our expectations...

My sudden attack of sleep was eventually determined to be an overwhelming need to sleep brought on by multiple sleep disorders.  Severe sleep apnea is being treated with a CPAP machine.  Delayed Sleep Phase Disorder is more difficult.  I was told that I could either start working 3rd shift to take advantage of my body's messed up sense of time, or try to train myself to sleep and wake at normal hours.  Narcolepsy is a third possibility, but they can't even evaluate for it until other sleep disorders have been addressed.

Thursday, December 6, 2012

Lunch Bag Mix-Up

When Overachiever #1 first started school, I was terrified.  How could they possibly keep my helpless preschooler safe with so many kids running around and too many adults in charge?!  For the first few weeks, the ring of the telephone sent chills down my spine.  Was that the phone call that I had been dreading?  The teacher, principal and staff were very understanding of my fears.  For the first few weeks, they started every call with "He's okay!  I just wanted to ask you/let you know..."  With time and a great deal of patience on their part, I learned to extend little bits of trust.

It has been four years since my overachieving, allergic to the world child first entered school.  Somewhere along the way, I learned to relax.  His teacher earned my full trust by consistently following the 504 plan that had been so carefully assembled with input from the pediatrician, allergist, teacher, principal, school nurse and, of course, me.  When we encountered situations that were not adequately addressed by the plan, we worked out a short-term arrangement and then scheduled a meeting to formalize how such a situation would be handled in the future.  By the time Overachiever #2 started preschool, I couldn't wait for each school day to start so that I could have a few hours of kid-free time.  What a transformation from those first few weeks!

When the school's phone number popped up on my caller ID today, my first thought was that head lice had found the boys.  (What an ordinary thing to dread!)  Lucky for me, that was not the case.  The school nurse was simply calling to let me know that Overachiever #1 had Overachiever #2's lunch, and vice versa.  This is an issue because Overachiever #1 can only have unflavored Neocate, granulated white sugar, artificial colors and artificial flavors.  Overachiever #2 is able to drink flavored Neocate, and he also has several safe foods.  This sort of mix up is exactly what we need to keep from happening!  Luckily, Overachiever #1 was not in the mood for an ambulance ride and so he immediately told the adult that supervises the nut free table.  She took him to the nurse who who called me to describe the contents of the lunch bags.  She thought she knew what contents went to each kid, but she wanted to confirm that with me just to be sure.

As I said in an email to the school nurse and assistant principal, today's situation is a perfect example of why I am able to leave my allergic children at school each morning with full confidence that they will greet me with hugs in the afternoon.  I am incredibly proud of my little overachiever for doing the right thing!!!  More than that, I am glad that we were able to establish a good relationship with the school and a 504 plan that helped them to address this issue appropriately.  Each school employee that was involved in correcting today's lunch box mix up may simply have been doing their job.  But they did it well.  They are overachievers in our community, and for them I am thankful.

Tuesday, December 4, 2012

Medication and Food Allergies

Food allergens are often found in medications.  Who knew?!

When an elimination diet is prescribed for EoE or food allergies, most patients and their parents understand that they must read food labels.  A common mistake is for someone who is otherwise diligent in their avoidance to assume that doctors would not prescribe a medication if it contained an allergen.  The fact of the matter is that physicians do not have the time to devote to label reading because they spend all day with their patients.  When they have time to sit down and read, it is journal articles and other professional resources which must be first devoured.  The truth is that doctors often do not know whether the medication they have just prescribed is safe from the perspective of food allergies.

If not the doctor, then why not the pharmacist?  You've given them a list of food allergens so they should only be giving you medications that are free of those foods, right?  Well...kind of.  In a perfect world that would be the case.  But we don't live in a perfect world.  The reality is that label reading is hard!  Food labeling laws do not apply to medications or supplements.  Therefore, even the most common allergens can be hidden in flavorings or as long words that a pharmacist will not recognize as an allergen.  They are trained to understand medications. Training that allergists receive on food allergies is very basic.

In the real world, the burden of label reading falls to us - the patients and parents managing elimination diets at home.  If you have not already read my previous entry, Label Reading Rules, you should read it now before proceeding with this entry.

The process that I follow to ensure that my Overachievers' medications are safe sometimes feels long and impossible, but it has become much easier with time.  It helps that we have a good medical team (doctors, nurses, pharmacists, dietitians, etc.) to lean on!  I try to schedule doctor's appointments for mornings.  Before I leave the office, I write down the exact name of the medication, whether it is a brand name or generic, the dose, and the form (pill or liquid) that is preferred.  I also ask whether pills can be substituted for liquid.

Once I have left the doctor's office, I call my pharmacist to see if they have the medication in stock.  If so, I ask them to pull out the package insert and read me the list of excipients.  (Excipient is just a fancy word that means "inactive ingredient.")  Then I follow my previously mentioned label reading rules to determine whether the medication is safe or not, keeping in mind that even the most common allergens can be listed in ambiguous terms.  See my Allergy & Eos Resources page for sites that can help with this process.  If the product is safe, then I have it filled.  When the same medication is needed in the future, I ask the pharmacist to fill it with the same NDC Code which is a number that identifies not only the type of medication, but also the manufacturer, form (ex: pill vs. liquid) and packaging information.  I still personally inspect the list of ingredients every time that I pick up a new medication.  For over the counter (OTC) meds, the ingredient list is printed on the box just like it is for foods.  For prescription medications, you will typically need to look at the package insert.  To find the ingredient list in the sea of itty bitty print, I look for the chemical symbol which looks like a big hexagon with a bunch of lines connecting smaller hexagons.  Often, the package insert for prescription medications will include ingredients for both pill and liquid form, so it's important to read closely to ensure that you are looking at the form that you need.

If our pharmacy does not have a needed medication in stock, or if what they do have includes allergens, then there are still ways to look into safety right away.  In that case, I pull up DailyMed and type in the generic name of the medication that we need.  If you type cefdinir (a generic antibiotic) into the search box today, you will get links to all 23 package inserts that are available.  I start at the top and read each package insert until I get to one that does not include any allergens of the Overachiever in question.  Once I have identified a safe version of the medication, I call our pharmacist and give them the NDC number at the bottom of the package insert.  During the week, our pharmacy can order medications for next day delivery as long as I contact them before they put their order in for the day.  They do not get deliveries on weekends, so I try to get in with the pediatrician no later than Thursday morning to allow time for me to research and for the pharmacy to place an order.  If it is a Friday or Saturday and we can't wait until Monday, then I start calling around to other local pharmacies.  Every so often, I will get get lucky!

If I cannot locate a safe version of the medication that has been prescribed, then I call the doctor to find out what to do next.  Often, they will have me repeat the same process for a second medication.  If time is a factor or we just can't seem to find a safe oral medication, then we look at other options.  Medications that come in shot form often are more pure than oral versions of the same medication.  IV versions of the same medication are even more pure.  A compounding pharmacist may be able to make a safe version of the medication you need.  However, if you go that route then you need to be very clear that they need to start with the pure active ingredient.  Most compounding pharmacists will just grind up pills to make a liquid version for patients who are unable to swallow pills.  That obviously will not work if the pills include your allergen!  You should know up front that insurance companies do not always cover the cost of compounded medications, and often they assess a higher copay than if you go with a medication off the shelf.  Still, it's an option to consider...

If your pharmacy adds flavoring to liquid medications to make it easier to convince your child to take it, don't forget to check that ingredient list as well!

Occasionally, there will be a true medical need to administer a medication that includes allergens as inactive ingredients.  I am personally not comfortable going this route unless our allergist is involved in the process to limit the risk, though we have had to do it on occasion.

As always, please keep in mind that I am not a medical professional.  I am just a mom and patient who has spent a great deal of time managing my Overachievers' allergic reactions and reading labels to prevent repeat occurrences.  Please consult with a licensed medical professional with any questions that you have about your own medical treatments, including the level of diligence that they expect you to maintain with regard to label reading.

Please share below if you have additional information or ideas about the identification of allergens in medications.

Friday, November 30, 2012

Label Reading Rules

When my older son was first diagnosed with anaphylactic food allergies in 2005, it was the experience and encouragement of other parents that helped me through the process of purging my pantry and restocking it with safe foods.  I again relied on other parents when both of my boys were diagnosed with eosinophilic esophagitis (EoE) in 2008.  I still look to other parents when we are able to add a new food, or when we must give up yet another.  They are a source of information when I don’t have the ability or energy to find it for myself.  My hope is that consolidating some of what I have learned can ease the transition for other families.  Please bear in mind that I have no medical training.  It is important that you consult with your (child’s) medical team for guidance that is tailored to your specific needs.

When a doctor tells you to exclude certain foods from your diet, the concept seems pretty simple.  You just need to get rid of foods containing those foods that must be avoided (allergens or potential allergens) and replace them with safe foods.  But then you start reading the food labels and realize that the process is not so simple.  Ingredient lists can be confusing.  You can’t even pronounce these words, so how can you possibly know if they are safe or not?!  The task can be daunting, but it is not impossible.  Below are a few rules that I follow to minimize accidental exposures that could have been avoided with careful label reading.

  1. Check every label, every time.  Manufacturers can change ingredients without any change to their packaging.  The only thing they must change is the list of ingredients.  Sometimes the ingredients used to manufacture an item in one plant will vary from the ingredients used to manufacture the same product in another facility.  It is easy to become complacent and grab a “safe” item from the shelf without remembering to check the label.  Therefore, I read labels at the grocery store and also when I pull an item out of my pantry to use it.  It would be an embarrassment to divulge how often that one last peek at the label saves me!
  2. Assume nothing!  Allergens turn up in unlikely places.  For example, I have seen chili recipes that call for peanut butter and turkey bacon that contains pork fat hidden as “natural flavor.”  If you cannot examine the ingredients of a prepared food, or if the food may have been cross-contaminated by shared utensils, skip it.  You do not want to explain to your allergist how you earned an ambulance ride because you decided that homemade cookie should be safe based on appearance.  Trust me on this!
  3. Use your resources. If you don’t know what something means on a label, then take the time to find out.   Current labeling laws require that any foods containing milk, soy, wheat, egg, peanuts, tree nuts, fish or shellfish must use plain English to identify those foods.  (This is not the case for foods bearing the USDA logo, medications or cosmetics.)  Any other ingredients can be listed ambiguously, or hidden under terms such as “flavoring” or “natural flavoring.”  Resources can be “been there done that” parents, informational websites and your (child’s) medical professionals.  You can also call the manufacturer to ask for more information about their product.
  4. When in doubt, put it back on the shelf.After all of the time you spent trying to identify the cause of your (child’s) symptoms and banish them, why would you knowingly chance the ingestion of a food that could include an allergen?  Look for a safe alternative or make it yourself instead.  If the item in question is a medication, consult with the prescribing physician to determine the best course of action.

Tuesday, November 20, 2012

So...I'm a blogger. Now what?

For years, people have told me that I should write a blog.  Apparently I sound like a blogger.  Whatever that means!  So here I am.  Not that I know what I'm doing...  I guess I'll just introduce myself and those that I will be writing about the most and try to figure it out from there.

I am a wife and stay at home mom.  Note that I did not say "housewife."  I am not here to keep a perfect house!  I'm here at home to take care of my kids.  On my more cynical days, I have been known to refer to myself as a medical manager.  Whose care I manage changes from day to day and even from minute to minute.  My children, Overachiever #1 and Overachiever #2, are regulars in too many doctors' offices to count.  Their cuteness makes the nurses fall for them.  The doctors are impressed by the way that they can turn something like simple ear infections into an entire afternoon of phone calls to to identify and locate a safe antiobiotic for the children who are allergic to everything that was ever alive.  And don't get me started on the drama of peeing in a cup!  My husband, who recently revealed himself to be a conspiracy theorist -- like 5 minutes ago when I started writing -- shall be known as the Big Overachiever.  He is typically an unwilling patient and is, in that respect, a very bad influence on the previously mentioned Overachievers.  I rarely provide myself with services that would be classified medical management -- not because I don't need them but because I am a typical mom in that I do not always practice what I preach.  While I would love to talk about something other than my Overachieving Bunch, that's kind of my life right now.  So until my life changes -- probably when my little Overachievers have what I hope will be little Underachievers -- I guess my writing will focus on overachieving and all that goes with it.