Not So Fast

Charlotte had her skin test to see if she's still allergic to sesame seeds/oil.

The skin test involves pricking the skin with the food allergies in question (in this case, sesame seeds and peas), a control, and a histamine. The histamine is added to give a comparison in allergic reactions.

I can't rotate this picture, but you'll see that the allegy tech wrote a letter next to each prick to remember which is which. P = Peas, S = Sesame, C = Control, and H = Histamine. This was taken early on in the test.

Anyway, the plan was to do the skin test with a possible food challenge afterwards. We waited in the lobby during the process with Charlotte using my sweater to keep her front warm (her shirt had to remain off). While Charlotte was doing a game on the iPad, Dr. K, her allergist came out to chat with us. He looked at her back and immediately could see that sesame was having a fairly strong reaction.

At that moment, the timer went off and the allergy tech came out with a ruler to measure the size of the welts as well as the corresponding redness. The good news is that she had absolutely no allergic reaction to peas (I could have told them that, as she's had a few peas since then). The bad news? The sesame welt and redness was bigger than the histamine welt. Dr. K did not want her to undergo a food challenge with that kind of result. But since this was the first time Charlotte had undergone a skin test, we didn't have any baselines with which to measure it. Would it have been bigger two or three years ago? As a result, he recommended we do the same thing in a year (blood test, followed by skin test) to see if anything changes.

In the meantime, continued vigilance against errant sesame seeds - those sneaky little things that get stuck to baked goods like bread and bagels. I'm disappointed because I was hoping we'd be sure she'd outgrown it. Plus, I know how hard it's going to be when she's in elementary school. What if she sticks a carrot in hummus? What if she takes a bite of a hamburger with a sesame seed bun? I hope that in one year things will have changed.

Anyway, on a happy note, Charlotte's having a great time at soccer practice. When she focuses, she does really well. Case in point: yesterday, she scored a goal. Right after that, she spaced out and started pulling up grass.

They got to decorate their team bench with stickers after practice yesterday, and as a reward, they all got popsicles! (Too bad the Team Mom spelled Charlotte's name wrong on the bench - Charolette - this after I specifically emailed her the correct spelling).

 

I think they're all shouting "Pink Lightning" here! (Oh and the little girl next to Charlotte is one of the little sisters, in case you wondered why she looked so young)

I'll be back soon with tales of the Crazy Phoebe Bibi at 17 months. Talking, climbing, screaming.

On My Way to Where the Air is Sweet...

Can you tell me how to get, how to get to Sesame Street??

We are singing over here.

We got the results back from Charlotte's blood test.

You guys. The blood test showed a scant, and I mean scant, reaction to sesame seeds.

Three years ago, the level of sesame seed antibodies in her blood was 7.21 ku/L, which put her at a Level III, which showed a high allergic reaction.

Today? 0.24, or a Level 0, as in not-allergic.

They also checked for peas and that one also came back as less than 0.10, or a very unambiguous Level 0.

I chatted via email with her allergist, Dr. K., who advised doing a skin test in his office to get a better read on the skin's reaction to sesame. If it's clearly negative, we'll proceed to an in-office food challenge. If it's highly positive, we likely will continue to act as though she's allergic. I scheduled the test for the beginning of August because Dr. K. needs at least three weeks after her arm has stopped swelling from the vaccines last week (oh yeah, did I mention that Charlotte's arm swelled to three times its size and was really hot to the touch? She didn't seem to be bothered, but she looked like a little football player with really big deltoids).

So I'm trying not to get our hopes up in the even that it was a false negative, but it would be so great if we didn't have to check every bagel from Panera or the bagel shop for errant sesame seeds (the sneaky little things). Even the baguettes we get from the grocery store have had sesame seeds baked in. I mean, every hamburger bun lists sesame seed as an ingredient.

Okay, so I'm not about to douse her in hummus and send her on her way, but this is super great news.

"After All, Tomorrow is Another Day"

I must say, four days in, and I am loving Charlotte's new daycare lady, Miss D.  More importantly, Charlotte is loving Miss D. Monday, Chris and I went together to drop Charlotte off.  We were there for a little while and when we went to leave, Charlotte made one little noise of protest and that was it.  Each day since, she's only given Chris a wave bye-bye and blown him kisses.  When I go to pick her up, she's busy playing and running around, so busy that she doesn't run straight up to me and cling to my legs like she did at the other place.

What's also wonderful is that the other kids are not all there everyday.  On Monday, it was just Charlotte and the girl closest in age, Ava. On Tuesday, there were three, including Charlotte.  On Wednesday, four. And today and tomorrow, five.  Charlotte gets a lot of attention, and most days, Charlotte is the first one there, so she gets plenty of one-on-one time with Miss D.  On Tuesday, D took Charlotte, Ava and Addy to the nearby park, where they had a picnic and met up with some of D's friends, who also watch toddlers (one is the grandmother to triplets and watches them everyday, can't imagine!).  They saw geese and had a great time, according to D of course.

And of course, Chris is happy to not have to give Charlotte breakfast in the morning.  It saves him a lot of time, and Dione makes yummy breakfast treats like pancakes, scrambled eggs, waffles and French toast. The food overall is varied and much better than the other daycare.

I've already met the parents of all the other children, as they all seem to arrive for pick up at the same time I do.  I'm not sure I met a single parent at the big daycare. They spend time chatting with D, and I can tell she's got a good rapport with everyone. So yeah, in short I'm very happy with this new arrangement. Charlotte seems super happy almost to the point of not wanting to leave in the evening.

Also in good news:  We had our second food challenge yesterday with lentils, to which she had tested positive on the RAST test.  It wasn't as long as the first challenge (thank goodness!), and it was pretty apparent that she's not allergic to lentils, which is great since she loves them and they're such a good source of iron, fiber and protein.  So really, the only confirmed allergies are peas and sesame seeds. And that's it for food challenges for now, thankfully.  We need to do one with cashews at some point, but Charlotte's allergist recommends waiting until she's old enough to describe what she's feeling.  We might do it around her second birthday.  In the meantime, we're avoiding all nuts, which is fine.

The sleeping has improved drastically.  Pushing her bedtime to 7:30 seems to work really well, although she'd be happy until 8 or 9 if we let her.  Charlotte still lets out a cry sometimes when we first put her to sleep, but not the hysterical sobbing like last week.  It probably has to do with the nonstop playing she does at D's.

The Face of "Pre-existing Condition"

We've been able, through careful scrutiny of food labels and asking questions of waiters at restaurants, to keep Charlotte's sesame allergy under control.  However, it's not always in our control, and we know there will be a time in the future when she'll be at a friend's house or at school and ingest sesame.  Case in point.  When I was in Dallas, Chris received a call from daycare that there had been an incident.  Another one of the toddlers had brought in a cracker (and you know how much Charlotte is obsessed with crackers) that was covered in sesame seeds.  Charlotte, being the cracker-lover that she is, tried to grab the cracker from the other boy.  The teachers were able to pry the cracker out of her hands before she ate it, but not before she touched it.  She then rubbed her hands on her eyes and they started to turn red and swell, a little.  The teachers gave her Benadryl, and Chris came right over to pick her up.  I was really mad to hear this a few hours later and gave a stern scolding to the school the following Monday (as in, maybe you need to tell the other families not to bring in outside food?!).  But I say all this to remind myself that as much as Chris and I try to protect Charlotte, there will be more incidents in the future.

***********

I don't think I've mentioned this before, but we received our bills from Charlotte's reaction to the sesame in the baba ghanoush.  All told, the ER visit, which consisted of an hour and a half of us sitting in an exam room, a physician assistant and a nurse taking Charlotte's vitals and administering an extra dose of Children's Benadryl and steroids, and waiting until the swelling went down enough to go home, came to about $2000.  $2000!  There were no blood tests, no x-rays, no other types of tests, and we were seen by a mid-level provider and not even a doctor.  I have no idea how that can add up to $2000, but that was the total. And the ambulance bill was over $1000.  Our of out-of-pocket cost? A measly-by-comparison $100. Charlotte's three Epi Pen Jrs were only $20 total, when the real cost would have been 10 times that much. All because we are blessed to have really good insurance through our jobs. We're lucky, but we know that there are so many who are not, who stay up late, worrying about medical bills.

Keeping that in mind, I sent a letter to the editor of the Sacramento Bee yesterday about the six month anniversary of the passage of the Affordable Care Act, the health reform bill.  It hasn't been published (yet), but here's the gist:

Today marks the six month anniversary of the passage of the Affordable Care Act, which means that children can no longer be denied health insurance due to a pre-existing condition.  Sadly, my 15 month old baby has joined those ranks.  We discovered that our daughter, through no fault of her own, has a life threatening food allergy, which caused a trip in an ambulance to the ER.  We're blessed to have good insurance, but now we are heartened to know that if we were to ever lose our insurance, we would be able to purchase insurance for our baby with her allergy covered.  And her condition is nowhere near as serious as hundreds of thousands of children out there whose parents cannot purchase insurance on the individual market.  It upsets me to no end that there are legislators out there, including my own congressman, who wants to repeal this law, which has the potential to help so many people, like my own small family.  Shame on him.

What today also marks? Children can stay on their parents' insurance until age 26, regardless of whether or not they're full-time students.  When I graduated from college, I was allowed to stay on my mom's insurance because I was still going to graduate school, but I knew many friends who lost their insurance the day they graduated.  Many chose internships or other entry-level positions that either didn't provide insurance or was made too cost-prohibitive.  Today, young adults don't have to worry.  They can take that internship, they can study abroad, all without the fear of getting in an accident and not being able to pay the hospital bills.  Should this be repealed?

Today, new plans must offer preventive services free of charge.  Mammograms are covered 100% without a co-pay, immunizations are free, well-child visits no longer require parents to pay money out-of pocket.  Should we take this provision away?

Lifetime and annual limits are banned.  This means that people with serious illnesses don't have to worry about whether they're going to hit that lifetime cap of coverage, at which time they're on the hook for every dime of coverage.  There are people who have to change jobs constantly because of chronic illnesses because they hit this cap.  One of my colleagues has no immune system and must receive a blood transfusion every three weeks to fend off infection. This provision directly benefits her.  Should this be replaced?

Finally, today marks the day that insurance companies can't rescind your coverage just because, you (gasp) actually use your insurance. I have heard countless stories of people getting cancer, only to have an insurance company drop them from coverage (despite paying hundreds of dollars in premiums) when they try to get care.  

Many more important changes roll out in the next few years, including prohibiting the denial of care based on pre-existing conditions for all age groups in 2014.

 

And please don't start yelling to me about the individual mandate.  I don't want to hear it. The individual mandate is what will make the insurance reforms work.  It will ensure that the risk is spread around; otherwise, it will all fall apart.  You can't ban pre-existing conditions without making sure that everyone has insurance, or people will wait until they're sick or in a car accident to buy insurance.  And to ensure that people enroll, you have to make it affordable by providing subsidies and hardship exemptions.  It's a fragile three-legged stool, and I'm determined to make sure that it doesn't fall apart.

It's my job to be passionate about this. It's my job to understand and defend this law, which expands coverage to millions, many of whom are the patients our clinics care for each and every day.  And it's my job to be an advocate for Charlotte, who has been to the ER more times in her short life than I think I have in my entire life.  It makes me breathe a little easier to know that today (and hopefully forever), she'll have access to insurance.  And I hope that the readers here (however few there are) will remember that the face of health insurance reform isn't just some poor person who isn't taking responsibility for his or her health, it's my daughter, my baby. And it could be yours too.

Soy Vay...

We took Charlotte to her first food challenge today.  A food challenge is when you give a suspected amount of allergy-causing food in the safety of the doctor's office and see what happens.  It was quite the ordeal.  We were at the allergy department for four hours, right in the middle of naptime/  Today's challenge was soy, so we were asked to bring soy milk for Charlotte to drink.  The nurse first put a very small amount on her lips to see if that would react.  We waited thirty minutes, and then the nurse gave her 20 mL in Charlotte's sippy cup.  And then we waited thirty more minutes.  This continued every thirty minutes, with the amount doubling each time and maxing out at 160 mL (about 4 oz).  It was exhausting. Can you imagine how hard it is to force a 14 month old to keep drinking liquids when she doens't want to? And poor Charlotte couldn't eat anything during that time for fear of cross contamination, so it was horrible when she saw crackers in the diaper bag.

(By the way, Charlotte learned how to sign cracker last week, and now it's all she does. She asks for crackers for breakfast, lunch and dinner.  And if she even hears the word she starts signing it.  So you can imagine how mad she was when she couldn't have any.)

During the three hours of the test, we couldn't leave the waiting room.  Luckily, we were prepared and brought a lot of toys and Finding Nemo.  Charlotte has the attention span of, well a one year old, so television thankfully doesn't hold a lot of interest.  Chris and I, on the other hand, enjoyed watching the movie.

Anyway, as you may have guessed by the tone of this post, nothing happened, thankfully.  No rash, no hives, nothing.  Obviously soy was a false positive, so we can now scratch that one off the list.  (We'd already suspected this based on the fact that everything, including all of Charlotte's precious crackers, contain soybean oil, and we've had no reactions.) 

Next up is lentil.  Lentils were one of Charlotte's favorite foods a few months ago, but we stopped giving it to her around the time we found out about the peas.  We really want to do the challenge with cashew, but it's going to be hard.  For one, she's never had any kind of peant-type butter, so she may not tolerate the texture. For another, she's still a little young to eat hard nuts for fear of choking.  So that's going to wait.

We're slow rolling the next challenge because it requires both of us to take at least half a day off from work, so the next one won't be for another six weeks.  In the meantime, it's good to have one fewer food to worry about! (Make that two; Charlotte ate a couple cherry tomatoes the other day with no reaction). Bring on the tofu and edamame. :)

(Tomorrow I leave for Dallas.  Upper 90s and incredibly humid.  I don't get back until about 10 on Saturday night, so Chris has a long day entertaining Miss Charlotte.)

Thirteen Months

Really quick post. We're leaving for Maui tomorrow. Yippee!  I. Can't. Wait. My parents will be there, so Chris and I will actually be able to spend some time together without Charlotte. This is a rare occurrence, as usually one of us is forced to stay home, while the other goes out with friends or to tennis or volleyball.

Anyway. Charlotte is thirteen months old today.  And she started really taking steps today, about six before she'd fall down.  So exciting.  Maybe she'll have perfected the cute toddle by the time we get back from Hawaii.

We also met with the allergist today and got the results back from her second RAST test.  As we knew, she is mildly allergic to peas, but also lentils.  Not tomatoes.  So maybe it was a contact irritation.  Nothing much to it. We'll be going back for a food challenge September 1 to test her allergy to straight soy.

Discovered she weighs in at a whopping 22 

On Friday, Charlotte got her first real haircut at a place that specializes in children's cuts.  They have this great play area, and when it was time for her cut, she didn't want to leave.

Not so sure about this.

 In the toy car seat because it has a booster chair for little kids.

All done! She even got a pretty barrette.

Okay, back to packing.  We have a 6AM flight, which means leaving for the airport at 3:45AM. Yikes!

The Gift that Keeps on Giving

Quick post:

We received the results back from Charlotte's RAST test.  They tested for a number of things, but as suspected, Charlotte scored very high for sesame seeds.  The RAST scoring goes from 0 to 6, and as her sesame reactions were in the 7.4 KU/L, that puts her at a level III, HIGH LEVEL OF ALLERGEN SPECIFIC IgE.  0 is no allergy, 6 is off the charts, don't leave the house type of allergy.  She also scored a II for both soy and cashews. To my knowledge she's never had any cashews.

I spoke to her doctor, who recommended that I talk to an allergist.  But before I was able to to that today, Charlotte had another allergic reaction last night, this time to delicious, fresh heirloom tomatoes.  I made her pasta with butter, Parmesan, and diced heirloom tomatoes.  After eating the tomatoes, which she didn't like, her chin turn bright red, as did her cheeks. Oh, joy.  I gave her Benadryl, and it subsided within an hour.

Fast forward to today.  I spoke at length with an allergist.  Talked about the reactions, the food she's been eating, what's caused reactions and what hasn't.  He ordered a new RAST test, this time checking for all of the following: eggplant, tomatoes, peas, lentils, lamb, chickpeas, pet dander, pollen, and a mix of related spices.  I just can't wait to take Charlotte to the lab this afternoon to have her get her second blood draw in a week. Poor thing.  And we have an appointment with him on Monday morning, the day before we go to Maui. Oh. And the allergist has prescribed three epi junior pens, two for home and one for daycare.  This is in case Charlotte goes into anaphylactic shock. He also wants to do a food challenge for soybeans and cashews.  This means giving her some soy milk in the clinic and seeing if she reacts (same with cashews, probably in the form of cashew butter).  Soybean oil is in absolutely everything, including most if not all of the crackers and bread she eats, and Charlotte hasn't shown any signs of allergic reactions, so I'm hopeful that she can continue.

Overall, feeling a little down about all of this. Worried about what I can give poor Charlotte, short of really boring food. Feeling better that the issue has been elevated, but also worried because it's been elevated, if you know what I mean.  And we can't keep doing blood draws. Charlotte hates it.  Uggh, uggh, uggh.

I guess this went longer than expected...

Allergy Update

Thanks everyone for your kind words.  It's been an uneventful week, on the allergy front anyway.  We went to Charlotte's pediatrician last Thursday, and he was sympathetic but probably more realistic than we wanted to hear.  He basically said that he would support us in any way we want to figure out what food actually caused the reaction, but that referring us to an allergist would not suddenly be a cure-all.  For one, the test that they do to figure out allergies is the RAST test, which is a blood test to test for antibodies.  You can only choose a few specific allergens to test for.  He recommended this over the skin prick test, which is basically when they inoculate you with various allergens, because he didn't believe Charlotte would be able to tolerate it.  Because Charlotte was pumped full of Benadryl and steroids, Dr. M didn't want to do the test right away.  He also said that this age is when allergies present themselves because you're exposing babies to more and more foods.  And he said that this will probably happen again because a blood test will not show conclusively what they're allergic to.  So we're just supposed to have Benadryl available at all times and either go to the ER or call 911 if she starts to swell again.

It's kind of frustrating because I guess we were hoping that we could find out exactly what to avoid.  I asked the doctor to order the blood draw yesterday, and Chris took Charlotte in today to get it drawn.  We decided to test for tree nuts, peanuts, sesame seeds, and eggs.  I don't think it's eggs because she's had them a few times before without so much as a rash or sniffle.  And the reaction happened almost immediately after eating the baba ghanoush.

Anyway, we've been living in a kind of state of paranoia ever since (Chris more than I, but I've definitely been kept awake thinking about it).  We've been giving her bland, one ingredient foods, or foods that she's had many, many times (like crackers).  But Charlotte can't subsist on crackers, bananas, bread, turkey, avocado, and cheese for the rest of her life.  She's a great eater, who's had so many different kinds of foods. I want to expose her to a diverse palate, but until we can rule certain things out, complex foods with a lot of ingredients and spices just don't seem like a good idea.  We don't want this happening all the time because the reaction might just get worse.  We're trying to keep a log of foods we know are on the okay list (because it would be really sad for our Berry girl if les framboises were on the bad list).

Oh and Chris's mom informed me (and reminded Chris) that he did have some food allergies when he was a baby, but they only presented themselves as eczema, and he outgrew them.  Nothing nearly as severe as Charlotte's reaction last week.

Open Sesame?

So in Charlotte's 12 month recap, I wrote: Charlotte appears to be allergic to peas (peas!).  Twice now, she's broken out in a blotchy rash on her face and then furiously rubs her eyes until they're both bright red.  It's strange because she's had peas before with no adverse effects, but maybe allergies develop over time? No idea. The Kaiser Advice nurse dubs her a "sensitive" child.  Anyway, Benadryl is now on hand.

I wrote this thinking it was strange, but not overly disconcerting. I mean, how hard is it to avoid peas?
Not hard at all, I thought, until we realized that peas aren't the only thing Charlotte's allergic to.

Last night, we bought some take out from a local Mediterranean place. I got the chicken shwarma and Chris got the gyros.  Both platters came with a side of baba ghanoush, a roasted eggplant dip similar to hummus.  I was giving Charlotte pieces of lamb and chicken and she was happily eating them.  Then I thought I'd have her try some baba ghanoush, so I dipped some lamb in it and gave it to her.  Almost immediately after sucking on the piece of lamb, Charlotte started fussing.  We assumed she was just tired, so Chris gave her some milk in the sippy cup.  Suddenly, we saw the tell-tale sign of an allergic reaction with a blotchy rash appearing on her face. But it didn't stop there.  Her lips started swelling.  Chris grabbed Charlotte from the high chair, and I ran to get the phone.  I hesitated, wondering whether to call Kaiser or just dial 911, but giving the swelling, I opted to just call 911.

A team of firefighters arrived within five minutes and Chris met them outside.  We explained what happened, and one of the firefighters asked if we'd given her any Benadryl yet.  We hadn't, only because the swelling gave us pause.  By this point, Charlotte's lips had swollen to five times their normal size, and her bottom lip had started to blister like hives.  I gave her Benadryl, while one firefighter continued staring at Charlotte's lip.  He exclaimed that he thought it was still swelling, so to be safe, they should take her to Kaiser in Roseville via ambulance.  Chris went in the ambulance with Charlotte, and I gathered up important documents to follow behind in our car.  Just as I was about to leave the EMT comes running up and says that they think her tongue is swelling and aren't willing to risk the 20 minute drive to Roseville and wanted to take her to the nearest emergency room, about two miles from our house.

(While all of this was happening, Charlotte, despite swollen lips, is smiling and laughing at the firemen - she seemed completely oblivious to the fact that the rest of us were panicking.)

We arrived at the hospital. Actually, I got there first because the EMTs took a longer route.  She got seen right away, and within a few minutes they gave her an upped dosage of Benadryl combined with some steroids.  We stayed at the hospital for about 90 minutes, but were discharged with the instructions that we wake Charlotte up at 2AM to give her more Benadryl.

Needless to say, we're a bit shaken.  We're not entirely sure what ingredient in the baba ghanoush caused the allergy -- it was such a small amount of food.  It could be the eggplant, which she's had before with no prior reactions, or maybe it's the tahini (ground up sesame seeds) that's causing it. Or it could be any number of spices added.  Who knows? Chris is terrified now of giving her anything that we don't know exactly what's in it.  I'm suspecting that maybe it's the sesame seeds, as I've read that it's not uncommon for children who have allergies to legumes (peas, lentils, peanuts, etc.) to also have a sesame allergy.  If this is the case, it will be rough.  Sesame seeds are in a lot of breads (hamburger buns for one, breadcrumbs for another) and are used in a lot of cosmetics like lotions.

I spoke with Charlotte's pediatrician this morning as I had the Kaiser advice nurse send a message to him to request a referral to an allergist.  He wants to see her this afternoon and do some blood tests to check on the most common allergies before needing a specialist.  All I know is that I hope we can get this allergy isolated so that it doesn't happen again.  And I wonder where this allergy came from?  Neither Chris nor I have any known food allergies, and from what I've read, allergies are generally hereditary.  And it seems surprising for Charlotte to have such severe reactions.  In any case, now Benadryl really must be on hand at all times.