Oh nuts! (Allergies and Anaphylaxis)

A few weeks ago I was paying our medical bills and realized we reached our out of pocket max.  I had this crazy idea pop in my head to take the girls to get allergy tested - it would be free after all!  In retrospect it was a tender mercy.  I didn't really expect to find anything big, but with my genetics I wanted to check just in case.  And I'm glad we did!

I scheduled all the girls at one time.  I asked my friend, Emily, to come with me and help wrangle them.  A few days before my appointment the nurse called just to make sure I brought someone.  I thought that was weird.  Then during my appointment she said many unhelpful things.  Like "Dr. Song sure has his work cut out for him today." (in a snotty way)  "Aren't you guys just providing the entertainment for the whole office." (after they were crying)  For a pediatric allergist I could have done without the grumpy nurse.  Yes the girls cried, cause it was scary and hard.  But they are not wild and misbehaving.  Sheesh lady, maybe she should transfer to adult allergy.  Part of me wondered if I was being too sensitive but Emily thought she was mean too!  (and yes in this picture I'm nursing Skye)

Dr. Song said based on my history and my concerns that we should do the skin scratch test.  I told the girls that it was the "tickle test" - a poor choice of words cause they were expecting something a lot more fun than what actually happened.  First Siena laid on the table - all excited for her tickle test.  The nurse used a marker to draw on her back.  Then two nurses used these scratchers that take off some skin and leave liquid allergens in each spot.  When they started the scratching Siena started screaming!  Oh my goodness!  That made Jaide and Scarlett start screaming too.  Jaide wanted me to hold her so Emily had to pry her off me all while Scarlett was hiding underneath a chair in the corner.  It was so loud!  Thank goodness Skye falls fast asleep with their crying!  After Siena got her scratches I had to hold her back-to-ceiling for 5 minutes.  She just wanted to bury her head in my shoulder, so I had to hold her against her will flat on my lap while she screamed.  Tears and snot streamed onto my pants.  After 5 minutes they wiped off the liquid on her back and she got to cuddle for the next 10 minutes while they let the hives form.  Emily and I switched twirls so she could comfort Siena while I started the process with Jaide (all while Scarlett was still under the chair screaming "I don't want the tickle test!")  Again I had snot and tears on my arm and pants while I forced Jaide to lay on my lap.  The nurse came in after 5 min to wipe off Jaide then Emily took her while she "read" Siena's results.  They have a control positive and negative histamine to verify that the skin is reacting properly.  Both the controls worked and no allergens showed a reaction!!!  Whoo hoo!  Then we read Jaide's - no hives either!  But Jaide's positive histamine didn't work.  Dr. Song and I discussed if we needed to do her test over.  I am pretty sure that I got her positive histamine on my arm while holding her down (cause I had a hive on my arm!)  He said that since Siena's worked and they are identical twins we can probably say that everything went ok and the positive just got rubbed off.  How often does the positive histamine rub off on the mom's arm but you happen to have an identical twin getting the same test at the same time?  Probably not that often!  haha!

Just because they don't have hives, doesn't mean they are in the clear.  Often nut allergies don't develop til after exposure and I don't think they've ever had nuts.  Plus people can develop allergies at any age.  We'll continue teaching them they are allergic to nuts (for my safety as much as theirs).  But I'm grateful that right now their results look great!

The twirls calmed down once we put their shirts back on.  We got them settled down while I dealt with Scarlett.  They even took turns holding each other!

Scarlett was sooo scared after watching her sisters.  I basically had to lay on top of her to hold her down while they did the test.  She was so upset.  But once the scratches were over she started to settle down a little.  I fed her smarties and wiped her tears while she laid down.  After the 5 minutes were up she asked to go to the bathroom.  When we got back she asked if she could be "maked" aka just in panties.  I was willing to do whatever she wanted.  Poor thing.  Then she was cold so I wrapped a blanket around her and fed her more treats.  She kept complaining about her back itching - and rightly so!  Hives were breaking out all over the place!  The nurse came in and before she measured them she asked me "Have you taken pictures of this!?"  She got her ruler and started measuring the hives.  SAT means Satellites (a bunch of small bumps). CP is the longest side of an oval.  Poor girl is super allergic to dogs - which we knew.  She's allergic to Dust Mites which means I have to wash her sheets in super hot water weekly and she's not allowed to keep stuffed animals on her bed.  She was sad about that but Dr. Song told her she should get a special bin for them on the floor, she got excited about that (we took her to IKEA to pick one out).  Dr. Song put her on child Singulair (I take it too.)  He said it would help with her under eye allergy shiners and how she always is clearing her throat.

But of all the results, the nuts surprised me the most.  I have always treated the girls like they are allergic just cause I don't want them kissing me with peanut breath and giving me a reaction.  But I didn't think that they have inherited my nutty genes.  Especially all the tree nuts!  My mom pointed out that her eyes were swollen one day when my mom had shared her Snickers with Scarlett.  It's funny how, even with all my experience, I still didn't put it together until we did this test.  Dr. Song ordered 6 epipens for her - for a total of $1200!!!  Thank goodness we reached our out of pocket max this year!  PS - isn't Emily amazing!  Every time I turned around she was just handling the other girls - exactly what I needed.  What an amazing friend!  Hopefully this experience didn't scare her from having kids!

A few days later I had to take Scarlett to get her blood drawn.  Janice came to watch the other girls so I could have some one-on-one time with Scarlett.  We talked about what was going to happen and she cried but then seemed to be ok with it.  Once we got in the chair she started screaming!  I had to hold her tight on my lap while a big, strong black guy held her arm in place and the other lady took her blood.  I felt so sad for her, but then it was over.  She said she needed to go potty, so I took her in the bathroom and helped her calm down.  She told me "My heart went down to my stomach.  I can't stop crying.  It makes me so cold.  I never never never want to do that again, it was so rough.  It hurt as bad as if a porcupine needle went in my eye."  So sad!  After she calmed down she asked the lady if she could see her blood.  So she took her to the back and showed Scarlett how they spin it down before sending it to the lab.  I took her photo in front of the machine.  Right when I snapped it that sad little girl smiled - just like a pro!  Poor girl!

I had the same blood allergy test done three years ago.  The results show your IgE levels to a specific allergen at that time.  It's kind of like your security detail.  If you eat a nut you're allergic to (a terrorist attack), your body will send out a ton of IgE (security officers) for that allergen.  Then the next time you are "attacked" all the officers "fight" and you have a big reaction.  But over time, as you stay away from that nut (a time of peace), your body slowly decreases the security staff.  Then the next time you eat a nut the reaction isn't as big cause there aren't as many officers to fight.  The IgE levels are always fluctuating but they are a way to kind of see how allergic you are to specific chemicals at that moment in time or how likely you are to have a reaction to a specific allergen exposure.

Class 0 (No significant allergy - scores less than 0.35 kU/L)

• Almond
• Crab
• Shrimp
• Pecan
• Lobster
• Brazil Nut
• Macadamia Nut
• Pine Nut, Pignoles

Class 1 (High IgE - scores listed below in kU/L)

• Hazelnut (0.39)
• Walnut (0.49)

Class 2 (Higher IgE - scores listed below in kU/L)

• Peanut (0.76)
• Sweet Chestnut (1.26)
• Cashew (0.70)
• Pistachio (1.05)

I told Scarlett she was going to get a medical ID bracelet to wear all the time.  She was so excited she couldn't stop talking about it.  Then at church the next Sunday I saw her wearing this little doll on her wrist.  I asked her what it was and she said it was her medical ID bracelet so she could practice.  haha!

I have been wearing a bracelet of my own for some time now.  But I came across this website (http://www.medicalidstore.com/) where they let you print on both sides of the tag.  I love that I can put our names and contact phone numbers on the back side where they are hidden from public eyes.  I put Jake's number and my Dad's on the back of mine.  Even though my dad isn't in Michigan he is the most reliable person to get in touch with.

Scarlett's bracelet came with 4 different bands.  The twirls wanted to wear one too so they put on one of her extra bands.  They wear them 24/7!  We take them off at shower time, but after they all put their new bands on for bed time.  I had to wear mine at night too (Scarlett kept asking why I didn't have mine on).  Scarlett knows to be extra careful with nuts.  She even asked "Can I have coconut?"  (Reasonable) "Can I have donuts?" (Reasonable, and hilarious)

After wearing my new ID bracelet for several days I realized I needed a new bracelet.  The current one was too hard to snap on my own wrist and I couldn't slide it up my arm when I washed my hands so it kept getting soggy.  So I came up a new solution.  I wanted something elastic that was easy to put on.  I found a bag of 100 elastic hair ties on Amazon for $15.  Then I picked my favorite and stitched it to the size of my wrist and used nail polish to finish off the ends.  I asked Scarlett if she wanted a soft band but she told me she liked her butterfly one the most (and I like that she can't really take it on/off by herself).  But I took a yellow and green hair ties and made little bracelets for the twirls.  If they go to bed after showers without their bracelet they will yell from their room "I need my medical ID bracelet!"  I love that the twirls call their bracelets "Medical ID bracelets" haha!  (Even baby Skye joined in the fun!)

Then a few nights ago Scarlett woke up in the middle of the night with hives all over.  Poor thing!  I think she had a reaction to the sunscreen (it gives me hives too).  Poor girl inherited my reactive body.  I found this picture of me as a little girl - look at the eczema, cold sore, and dark allergy shiners under my eyes:

So let's talk about anaphylaxis.  (More info here and here).

What is Anaphylaxis?
Anaphylaxis is an acute, life-threatening hypersensitivity reaction, involving the whole body.

What causes Anaphylaxis?

Which is usually brought on by something eaten or injected.  Things like pollen or animals rarely cause anaphylaxis.  

What are the symptoms of Anaphylaxis?
Anaphylaxis is a medical emergency that develops rapidly and can be fatal. A few or all of the following symptoms, often developing in this order, may be experienced:

• Itching of the lips, tongue and palate, swelling of the lips, tongue and throat
• Swelling of the eyelids, itchy, watery eyes
• Generalized itching, flushing, swelling of the skin, and hives (urticaria)
• Increased heart rate
• Abdominal cramps, nausea, vomiting, diarrhea
• Difficulty in breathing due to throat swelling, wheezing and asthma
• A sense of impending doom
• Collapse, loss of consciousness, weakness and faintness caused by a drop in blood pressure.

How long does Anaphylaxis take to set it?

Severe initial symptoms can develop within minutes following an encounter with an allergen, and usually reach peak severity within 3-30 minutes. Sometimes there can be a second phase reaction, 1–8 hours after the initial anaphylaxis caused by the first episode (don't need allergen exposure).

Do people die from Anaphylaxis? (info here)

Generally what distinguishes a fatal from non fatal reaction is often just the rapidity to apply correct therapy.  Prevention is clearly the key and should identify high-risk patients in an attempt to minimize the likely of a severe reaction.  All people at risk should carry an epipen and practice aggressive treatment with exposure to known allergens.  When in doubt, use your epipen.

How do you use an Epipen?

Epipens are to be shot in the thigh.  They can even go through denim!  Check out this info graphic that shows how to use it.  Plus when you get a box of Epipens they come with trainers that help you feel how hard to hit your leg.

Can you use an expired Epipen? (info here)

Epipens need to be replaced like once a year.  But old epipens still have value.  We keep all my old epipens in our emergency supplies - so we're prepared for the zombie apocalypse!


So what do I do if I am watching Scarlett?
If you are with Scarlett and she eats something with nuts, give her Benadryl right away.  Liquid Benadryl is absorbed the most quickly - I have little travel, single dose blisters of liquid Benadryl for her to keep with her Epipen.  If she develops any severe symptoms, then use the Epipen and call 911.  When in doubt, use the Epipen.  Often in severe cases a second dose of epinephrine will need to be administered after the first dose wears off (sometimes as soon as 5 minutes after).  That's why it's so important to call 911.  Here is the chart that our allergist gave us to keep with Scarlett's medicine.

We are careful. We don't have nuts in our home. My friends know our allergies. I am teaching Scarlett to ask before eating food from other people. I don't eat food at potlucks (except the food I bring myself). But still, anaphylaxis can happen. I have had 2 cases of idiopathic anaphylaxis. But do you remember when I went into anaphylatic shock the day Scarlett was blessed? You can read the whole story here. But I thought I would share this photo just to remind us all (me) how serious we (I) need to take this.

I reread the story I posted about this incident.  There was one part that I left out.  After we were escorted to a room in the ER I had to rush to the bathroom.  I didn't know at the time that anaphylaxis causes major GI distress.  But I learned firsthand as I sat on the potty with #3 issues (#3 is my code word for something that rhymes with miarrhea).  And since it's from the reaction, normal #3 meds don't help you.  You just have to wait for your body to calm down from the reaction.  The worst part?  Our room shared a potty with another little room.  I could hear on the other side of the door that it was a young couple in the ER with their little baby.  Scary for them.  But if I could hear them, then.... doesn't that mean that they can hear me!?!?!?  And to add insult to injury: there was no more toilet paper!  I found what I thought were like little wet wipes for cleaning yourself before urine samples so I used those to wipe with.  I have no idea what they actually were for - they burned so bad!  They had some kind of astringent!  Then for the next few days (until I healed) every time I used the bathroom I was reminded of my horrifying experience.  At least I can laugh about it now!