Monday, July 18, 2016

Reading Every Label, Every Time

Last Friday I went to a certain "Mart" for school supplies.  While there, I thought I'd pick up a few items, mostly pantry staples.  I had just stopped at the butcher and picked up our CSA box the day before, so I really needed "supplies" for meals and snacks for the kids.

One thing I needed was corn.  I usually purchase frozen corn, but the "Mart" was out of frozen corn except for it's store brand which is labeled "may contain wheat, eggs, and nuts".  So I went over to the canned food section to see if I could grab a can of corn.  It's going to be used in this slow cooker chicken taco recipe which is a family favorite.  Much to my dismay, I found this.

So I ended up at my regular grocery anyway to get my usual brand of frozen corn.  But this was just another reminder that it's really important to read every label, every time.

Thursday, July 14, 2016

Post Allergic Reaction (Originally posted 4/24/2014)

Thank you all for your kind comments and concern for Middle Man.

He is doing excellent and is fully recovered from his asthma/allergy hospital stay.

I hesitated to share the story because I knew that there would be judgement on how we handled all of this but it was minimal and mostly confined to Facebook.  I think in hindsight of these types of situations, we all wish we would have done things differently.  But I shared the story so that others can learn from the decisions that we made and from the mistakes the hospital made.

Middle Man has seen both his Allergist/Pulmonologist and his Pediatrician for follow ups and he is doing well.  The Allergist did switch one of his asthma medications but other than that we are keeping on the same action plan.  We just wish we knew what threw his asthma so out of control.  He has always been so controlled and this was a big shock.

The boys are on spring break this week and although we had a short trip planned, we cancelled all plans and are keeping things quiet and close to home.

Some things that have come out since we left the hospital:

1.  The gluten free kitchen was shut down as of last Tuesday.  They contaminated it by using the non gluten free product.  I'm hoping that it's still shut down...

2.  I asked the Allergist how a hospital doesn't have emergency epinephrine on the floor and he said that it has to be there.  He thought that it was probably on the crash cart and the Resident wasn't familiar enough with an emergency situation to call for the crash cart (but we don't know for sure that it was there but that's where it's usually kept).

3.  I asked if I should have overridden the medical staff and used my Auvi-Q.  No one wants to say yes or no because it's complicated.  There are a lot of things to consider then taking over your own medical care especially in a hospital setting. Giving too much epinephrine isn't going to hurt, but not giving it will.  Even though I could have caused some issues, in the future I would give it myself or give it to the Resident and make her use it.

Thank you again for all your concern and prayers.  We appreciate it!!

Food Allergies and Hospital Stays. Think You Are Safe? Think Again. (Originally posted April 2014)

I hesitate to write this.  I wasn't sure that I was going to.  But I feel like I need to let others know what happened so that they can guard against it.  I'll apologize now for this post being a novel, but there's no other way for me to share Middle Man's story without sharing ALL of it.

Almost two weeks ago, Middle Man caught a virus and woke up Wednesday night throwing up.  We kept him home from school Thursday and he was better.  He returned to school Friday and was fine Saturday and Sunday during the day.  Sunday night he had intestinal issues and was up all night.  We kept him home Monday and during the afternoon the Little Monkey got sick and started throwing up.  Monday evening Middle Man started coughing and that is usually a sign that his asthma has been triggered (he has illness induced asthma).  So we started breathing treatments and first thing Tuesday morning I took both boys to the pediatrician.  She said that they both had a virus, and that Middle Man's lungs sounded pretty clear.  She said that she could hear a slight "hitch" but that other than that he sounded good.  Even though the breathing treatments weren't helping the cough, she said to keep up with them just in case his asthma kicked in.

Wednesday morning, Middle Man felt better even though he was still coughing a little and he wanted to go to school.  So I sent him, but I fully expected to get a call to come and get him at some point.  And that call came from the school nurse around 10:30 am.  I was in the middle of spring cleaning, so I hopped in the shower, threw on some sort of matching clothes and went and to get him.  When we arrived at school the nurse walked him to the lobby and he looked AWFUL!  He was very pale and had big dark circles under his eyes.  You could visibly see that he was having trouble getting air.  The nurse said his pulse ox was 90.  As we walked to the car, I thought that I'd take him straight to the pediatrician and I'd call on the way there.  But looking in the review mirror he looked so horrible that I instead drove around the corner to a local Emergency Room.  When the admitting nurse took his vitals, his pulse ox was 90 and his heart rate was 240.  They rushed him back and immediately hooked him up to albuterol and a pulse ox meter.  We ended up being in that ER for around 5 hours that day.  His care was lacking to say the least.  The on call doctor and the Resident in charge didn't quite get on the same page so some of the treatments that were discussed were not administered.  They were busy that day, but that's no excuse for substandard care.  His oxygen level never did get stabilized so around 4:30 pm they decided that he'd be better off at a children's hospital in downtown Cleveland and they called for an ambulance to take him.  When the ambulance team arrived, they were visibly shocked and upset by the lack of care and treatment that he received and they administered all the meds that he should have been getting all day.  His oxygen level came back to the normal range even before we left.  When they listened to his lungs, they heard nothing.  No wheezing, no air moving, nothing.  His lungs were basically bricks and nothing was getting in there.  The ambulance team was great and they did a great job of taking care of him.  We discussed his food allergies and they made note of it because the ER never did even though I mentioned that he has "life threatening food allergies" to several people and told them what they were.  The ambulance team was concerned because one of them was eating peanut butter crackers in the front seat.  They made sure never to touch him without gloves on.

Once we got to the children's hospital, he was admitted to the PICU and he was triaged and every team came to assess him and come up with a plan.  He was going to be on continuous albuterol nebulizers for at least 12 hours along with steroids.  After that they would start spacing him out to 1 hour in between treatments, then 2 hours, then 4 hours.  Once he was able to get to 4 hours and was doing well, he'd be transferred to the Pulmonary Floor for further treatment and to be released.  He also wasn't able to eat or drink anything until he got to that 4 hour point.  He ended up going without eating for 36 hours and he was miserable. I did have Hubs grab some shelf stable snacks from home and bring those but the hospital assured me that they would be able to feed him safely when the time came.  Of course everyone that we came in contact with got the same statement about him having "several life threatening food allergies" and I'd rattle each one of them off.

We spent Wednesday night and all day Thursday in the PICU.  Hubs came to the PICU around 2 pm Thursday and that gave me a chance to run home, check on the other boys (who were being taken care of by Grandparents), shower and get a few things we needed.  He was still on every 2 hour treatments when I left, but they moved him to every 4 hours while I was gone and gave him the go ahead to eat.  Hubs did a great job calling the contact we had for food service and going through all of his allergies and having them check labels for what was safe and what wasn't.  There was a menu for us to look at that had ingredients listed but that menu was for the "regular items".  We had a gluten free menu but there were no ingredients listed on it.  We could only go by what food service told us.  They wanted to stick to the gluten free menu because even though it was only safe for three of his allergies (wheat, rye, barley), it was cooked in a gluten free kitchen, with gluten free pans and was safer in general than the regular kitchen.  We just had to avoid his other allergies (oat, eggs, peanuts and tree nuts).  His lunch that day was Amy's Gluten Free Mac and Cheese, turkey sausage and gluten free French fries.  Hubs had pre-ordered dinner for him too and he had gluten free pasta with tomato sauce.  He did fine with lunch.  When dinner came, he only took a few bites and said that he didn't like it and that his stomach hurt.  I called the nurse and she got him some Motrin for the stomach pain and he seemed better.  For the rest of the night, we stuck with prepacked potato chips that we brought from home and he seemed fine.

Around midnight they came in and moved us up to the Pulmonary Floor.  We were both asleep at the time so I tried to gather up all our stuff (we don't travel lightly at all) and we were escorted upstairs.  He was given another breathing treatment and more meds and we didn't see a doctor until 8 am.  The attending doc came in and said that Middle Man was doing great and they were going to move the treatments out to every 6 hours and if everything went well, we'd be released Friday night, or Saturday morning (and more likely Saturday morning).  Some Residents came in to look at him and our nurse changed.  After everyone checked him, I called down to order him breakfast.  The contact we had in food service was not in that day and there wasn't anyone else to speak with.  I explained to the person taking the order about Middle Man's food allergies and she got the ingredients from the pancakes on the gluten free menu and I ordered him pancakes, turkey sausage, yogurt and a banana from the gluten free menu.  Middle Man didn't like the look of the pancakes (they looked different than what he's used to, so it made him nervous to eat them) so he skipped those.  He ate the turkey sausage and part of the banana and by-passed the yogurt because instead of coming in a Dannon package, it was spooned out into a bowl and that made him nervous too.  We spent the better part of the morning and early afternoon watching movies and playing games.  He was very antsy to get released and was hoping for Friday night.  His breathing was good.  He still had a few wheezes but was doing well and his oxygen levels were between 100-97.

He was ready for lunch and due to the fact that our contact wasn't in that day, we decided to order him the same lunch that he had the day before and was already deemed safe.  I ordered him Amy's Gluten Free Mac and Cheese and gluten free French Fries.  When it came he didn't seem all that excited which was odd because he loved that same meal the day before.  He ate 2 French Fries and took one bite of the Mac and Cheese and said that it didn't taste or look the same.  He asked me if I was sure that it was safe, and I told him that they went over everything with us and they told us it was but if he wasn't comfortable he didn't have to eat it.  He then started to complain of stomach pain.  I called his nurse and told her and she called the Residents to come check him out.  He was writhing in pain and we were trying to figure out what was going on.  That's when his nose started running, which it wasn't doing before.  The Residents thought maybe it was reflux, constipation, etc.  That's when I said "I just don't understand.  He had the same problem last night but he has no issues with the prepacked chips".  And that's when the light bulb went off and we all looked at the food.  At this point he was screaming, his skin was bright red and he was yelling "Help Me!".  The one Resident ordered Benadryl for him.  I told her that he has known anaphylaxis and he gets epinephrine not Benadryl.  That's when she informed me that he was not having an anaphylactic reaction because he wasn't having breathing issues and he would get Benadryl.  They gave him that and it did nothing.  He was still screaming and tearing at his skin.  I had taken his shirt off and I was starting to see hives pop up.  That's when I told her that she needed to give him epinphrine NOW.  She ordered it and another nurse came in and gave it to him.  At this point we had 3 nurses and 2 Residents taking care of him.  Nothing happened with the epinephrine.  The Resident that seemed in charge was yelling at him to calm down and give the medicine time to work "It's not magic.  It takes time".  I knew when she gave him the Benadryl first that she wasn't too familiar with anaphylaxis.  But when she made that comment, I completely dismissed her.  Yes, epinephrine is magic or at least it should be.  It has always worked within seconds for him.  He was still screaming and yelling for help when the two residents left and it was just me and his nurse who was like a deer in the headlights.  She was visibly scared and wasn't saying a word.  At this point I started to panic and I was yelling "This isn't normal.  He needs help.  He needs a second dose of epinephrine".  I ran out of the room to the nurses station and yelled for them to get those doctors back.  When they came in a minute later I told them he needs a second dose and I had my Auvi Q in my hand was going to use it.  Another dose was ordered and another nurse came in and gave it right away.  Then the head nurse came in with all the nurses on the floor. She got oxygen going and more albuterol.  His oxygen level was in the 80's.  At this point the team from PICU came in and took over giving him a third shot of epinephrine, magnesium, more Benadryl, Zantac, steroids, aterax, heliox, and other stuff that I just can't remember.  The PICU team raced him back to their floor.  The last I saw his oxygen level on the monitor it was 78.  They had anesthesia waiting in case they had to insert a breathing tube.  After working on him for what seemed like an eternity, he was finally stabilized.  I really thought we lost him.  I thought he wasn't going to be able to come back from this.

We stayed in the PICU for the rest of our stay and were finally released Sunday afternoon.  The doctor in charge of the PICU wanted him there in case he had a biphasic reaction.  That was fine with me because I wasn't going to allow him back up on that Pulmonary floor.

So what happened?

From what we have been able to gather, the Mac and Cheese wasn't the gluten free kind, but regular Mac and Cheese which contains semolina flour and wheat.  According to food service, the distributor who sends them the product sent the wrong product and no one caught it.

But what even scares me more than the food mix up were two things:

1.  The Residents on the Pulmonary Floor had NO idea what anaphylaxis was or how to treat it.  You ASSUME that doctors get it.  Assume NOTHING.  All food allergy parents, or individuals with food allergies know that you NEVER give Benadryl first.  Epinephrine, then Benadryl.  We also know that epinephrine only last for 20 minutes in the system and another dose may be necessary if the reaction isn't subsiding or if it increases in intensity.  I had to tell them that.  And no one had any idea what time the first dose was administered.  I looked at my cell phone at 2:26 pm and said that if he wasn't better by 2:36 pm I was demanding another dose or giving it to him myself.  The lack of knowledge on handling anaphylaxis makes my blood run cold.

2.  Epinphrine had to "ordered".  There wasn't any emergency epinephrine on the floor.  The first dose seemed like it took 5 minutes to get there.  5 minutes is way too long!!  When you need it, you need it now.  This part pisses me off.  There is just NO excuse for this.

What are my take-aways from this:

1.  I should have had the school call an ambulance for the asthma.  I didn't realize how bad he was until we got moving.  He's never had an asthma attack this bad before.  Hind sight being 20/20 I should have had an ambulance transport him to our usual ER that is 20-25 from the school.  I knew the one we went to wasn't the best.  I just didn't realize how bad it was.

2.  The food service spiel sounded safe.  But it wasn't and I had misgivings and I should have trusted my gut.  I didn't feel comfortable and I should have just had him eat chips until I could bring him something safe from home or elsewhere.

3.  ALWAYS CARRY YOUR EPINEPHRINE, even at the hospital.

4.  Don't trust that doctors understand anaphylaxis and know how to treat it.  Clearly that was NOT the case here.

5.  When they say IT ONLY TAKES ONE BITE, it's the honest truth.  He could have died from one bite of that Mac and Cheese.

6.  NEVER be afraid to advocate for your child, yourself or loved one, even if you feel you are under-schooled.  Schooling isn't everything and some lessons may not have been taught or some people may not have common sense.

After Middle Man was stabilized, the Resident that failed to treat him properly, patted me on the shoulder and said "Way to advocate for him mom".

7.  I should have karate chopped her in the wind pipe like I wanted to.

I'm going to follow up with the hospital on all of this.  Clearly anaphylaxis training needs to be done for everybody.  And epinephrine needs to kept readily available.  I will not allow this to happen to another child.  I feel like we were very very blessed that Middle Man came through this.

I don't really need to address the incompetence of the first hospital.  The ambulance team stopped in Thursday evening to check on Middle Man and they told me that they took their issues to their supervisor who took them to the hospital supervisor.  I do however have a survey that they sent me and I will voice my concerns on that.

When I explain Middle Man's allergies to people, I always feel like they look at me sideways.  I realize that most people don't truly understand unless they've seen an anaphylactic reaction.  But I truly feel that people think I'm being over protective or dramatic or that I feel "special" by making my son seem worse than he is.  I feel like people only half listen to what I say because I'm just an over protective mom.  I feel like those Residents did the same thing that day.  I hope they never make that mistake again.  I hope from now on they listen to the patient or the patients advocate.  Isn't it better to err on the extreme then to let a patient die or get injured?  I hope they get it now.

My son took one bite of the wrong food and could have died.

Let that sink in a little bit....

Boy Scout camp with food allergies

I hope all my U.S. friends had a wonderful and safe Fourth of July.  We pretty much stayed here and just relaxed and had a low key weekend.  It's rare that we get one of those so I was loving it.

Hubs and Middle Man left for a week of Boy Scout camp.  Is it a food allergy friendly camp?  Nope.  Not really.  But we are working with it.

We decided that there is no way Middle Man can go to camp without one of us (and I don't camp).  That pretty much decided that if he were to go that my husband was going to have to go too.  He went two years ago with my older son so he kind of knows the layout and how dining works.

He called there a month ago and spoke with the person in charge of the camp and he put Hubs in touch with the camp chef.  We could tell by the first conversation that they were not that food allergy aware.  He explained to the chef all about Middle Man's allergies, what they were, and how his food would need to be prepared.  The chef just kept saying that they have gluten free food that Middle Man could pick from.  Well, that doesn't work.  He is not Celiac, he's anaphylactic to wheat, eggs, peanuts and tree nuts and also allergic to barley, rye and oat.  Just having food be "gluten free" does not mean that it's safe for him and his food also has to be cooked separate.  So after the initial conversations, we decided that it would be best if he took all our own, safe food.  We put a menu together and I cooked and froze things last week for them to take.  The chef did say that they have a microwave to heat things up in, so if most things were precooked, he should be fine.

The following is the menu we used and Middle Man gave us a lot of input:

Safe cereal
heat and eat breakfast sausage
precooked bacon

lunch meat
Ener-G GF bread
2 packs of Energ-G tapioca hamburger buns
string cheese
Live GF pizza pockets from Aldi

Dinner/Lunch hot meals (sent frozen and to be thawed the day before eating and heat in microwave):

3 prepackaged containers of Cowboy Casserole
3 prepackaged containers of chicken tacos
3 prepackaged containers of The Poorman's meal

Odds and Ends:
Enjoy Life Cookies
Enjoy Life Coco-Loco Bars
A pack of safe hot dogs
An extra pack of shredded cheese
Safe Crackers
GF pretzels
A 20 pack of individual bags of Lays Potato Chips

Then wipes, paper plates, napkins, extra baggies for open boxes of food

We also sent a 5 gallon container of our own water for refilling water bottles.  They supply water in large gatorade containers but we can't be certain of what was in there before.

I think he has a enough food to get him through the week. But if he runs out of anything, there is a Super Walmart near by.

We also sent 3 two packs of Auvi-Q.  Middle Man will carry a set, Hubs will carry a set, and a set will be kept in the infirmary where they are keeping the rest of his daily meds (mostly for asthma) and Middle Man is also carrying his emergency inhaler and Benadryl tabs.  Both Hubs and Middle Man are carrying their Auvi-Q's in a case similar to this one with the water proof bag (1 water proof bag for each Auvi-Q) and there is room for Middle Man's emergency inhaler.

Although there is no way to plan for EVERYTHING, we think we have things under control as much as you can.  We also discussed that if there is any time that things appear not to be safe, they are coming straight home.  But so far so good.  The biggest hiccups were trying to decide how to store the food safely in the freezer (I sent a big box but Hubs left it in his car.  It's taken care of now) and the fact that the camp microwave broke a few days ago.  They had to have the Camp Manager bring his office microwave to the dining hall.

This doesn't mean that I'm not totally nervous.  But Hubs is texting me several times a day with updates and it appears that this is a great learning experience (food allergy wise and responsibility wise) for Middle Man.

Sixth Grade Camp

A few weeks ago Middle Man's 6th grade class went to camp.

Yes, in January.  In Ohio.  They had a wonderful time (at least according to him).

When I first learned that they would be going to camp, I was less than thrilled.  And I certainly wasn't sure I was going to let him go.

At that time his asthma was not under control (but it seems to be now) and I just didn't want to deal with the food.  They went from Monday to Thursday and there was no way that I could go.  What would I do with the other two children?  And because we have boys, I could be with him during the day, but at night I would have to sleep in the girls dorm which was in a different section of the camp.  That was less than ideal.

A spokesperson from the camp came to school to speak to us and she assured me that they were very food allergy aware and that the chef could cook safely for him.  Well, we've heard that before and it did not work out so well.  One good thing about the camp was that they don't use nuts or anything with nuts in the dining hall.  But Middle Man has so many other food allergies that no nuts is only a partial bonus.  The woman from the camp gave me the number of the chef and told me to call and speak with him and he would put my mind at ease.

I did call.  But I wasn't exactly put at ease.  I have no doubt that if Middle Man had celiac disease, they could have cooked for him.  But he doesn't.  He's allergic to wheat, rye, barley, oat, egg, peanut and tree nut.  The chef was very kind but kept saying gluten free isn't a problem.  But when I asked if what they purchased was also egg free, oat free (thanks gluten free oats), tree nut tree (almond flour is used a lot in gluten free products), he just kept telling me that he hasn't had anyone have a reaction.  He gave me the name of the pasta he uses and it's made by a local company.  I Googled it and not only did I not see a gluten free one, but all of them has egg.  Middle Man eating there safely was just not going to happen.

So I offered to cook all the food and send it so it could be heated up in the microwave.  But the chef said they don't have a microwave.

So my next option was to feed him breakfast at home, pack lunch and dinner and drive him there every morning and pick him up every evening.  Less than ideal but Hubs works 1-2 miles from the camp so it would have been doable.  I just didn't want to make him sit out camp.

Right before Christmas, Middle Man's teacher called me with another option.  Both she and the school nurse have a small microwave that they weren't using and they offered to bring the microwave to camp so that I could send all his safe food and he would be able to stay.

So that's what we did.  I cooked breakfast, lunch and dinner and sent a safe snack box for the teacher to keep in her room and Middle Man was able to go and to eat safely.

Because Hubs works so closely. we also decided that he would work during the day but spend the night at camp so that he could monitor things and make sure that all was going well and Middle Man was safe.

So we sent 10 meals (9 plus an extra one to be on the safe side), a box of snacks, all his meds and I sent his nebulizer just in case his asthma was triggered.

All was well and he had a great time.  I'm so glad that he got to go.  This year is the first year for this camp and I had no idea what to expect.  This is also the first year that the 7th grade took a trip.  I told him that we will reevaluate that trip next year when it comes up.  I'm not sure I could send food for this trip plus Hubs would have to take vacation time off of work.  He already takes a weeks vacation for scout camp.  He doesn't get that much vacation time.

I'm glad he was able to go to this camp.  I hate to see him left out.  But unless we could make it as safe was we possibly can, he may not be able to do things.  It's just how life with food allergies has to be.

Food Allergy Awareness Month and a lovely gift

Love with Food is an organic or gluten free subscription snack box company.  And with every purchase you make, they make a donation to an area food bank.  How great is that??

We had various Enjoy Life Food Products inside our box.  The items included Plentils, cookies, muffin mix, nut free snack mix and more.  Visit Enjoy Life Foods Website to see all of their food allergy offerings (Free of top 8 allergens and made without sesame, potato, sulfites and casein).  

I left the box on Middle Man's place mat and he was so excited to open it when he got home from school.  He actually said "Sometimes having food allergies isn't so bad" with a big smile on his face.  I can not thank Enjoy Life Foods and Love With Food enough for sending us this wonderful box of food allergy friendly goodness.  You made a young mans day!

(The food box was sent to us at no cost for review purpose only)

Welcome to the new blog! Our Story: The Good, The Bad, and The Food Allergies 2.0

Yes, I have two blogs with the same name.

I have tossed around the idea of starting a new blog for a while now and I guess today is the day.  Due to my children getting older and not appreciating their childhood being on the web, I made my old blog private.  I love seeing all of those memories, but they are not appreciating their friends finding them and teasing them about it.  So this blog will just be food allergy related with not too many family photos.  And that was really where the old blog was headed anyway.  They did such cute things when they were little and I loved writing about them, but now that they are older there's just not that much to say about them.  Apparently they would like for me to share NOTHING and I can respect that.

I started my old blog in 2006.   In those 10 years, there has been such a big change in how the world handles and deals with food allergies that most of my older information is really no longer relevant anyway.

I will be sharing things that work for us.  And I hope that you find them helpful.  I will be moving a few more recent posts from the old blog, over to the new blog so I'm sorry if things seem disjointed in the beginning.

Please remember that I am just a mom who deals with food allergies.  I am not a doctor and I have zero formal education in the field of allergies.  I will share my opinions, information from other sources, and what works for our family.  Please consult your doctor with any questions or concerns.