First Communion With Food Allergies

There are so many things to consider when you  or your child have food allergies.  Things that most people take for granted are fraught with road blocks or complications.

The Little Man is making his First Communion on May 5th and today we finalized the plans on how to keep him safe that day and every time he takes communion there after.

Due to his severe wheat allergy, he will not receive the host.  There is no way for that to happen short of him outgrowing his wheat allergy.  Some religions allow a gluten free or wheat free host.  The Catholic church states that some amount of wheat must be present due to the fact that Jesus used wheat bread at the last supper.  The church acknowledges a "low gluten" host but not wheat free.  Because some amount of wheat is present in the "low gluten" host,  my son would most likely react to it.  As practicing Catholics, we acknowledge the church's position on this subject and will work within the parameters.

So we've decided that my son will only receive the Blood of Christ (or wine).  But how do we do that safely since so much wheat is present during communion?  He can't drink from the cup after anyone that has eaten the Body of Christ (wheat).  And the priest has touched the wheat host and could contaminate the cup.

So we'll be using a small intinction set given to us today by our parish priest.  The bowl shaped paten will not hold any host, it will only be used as a "handle" so that no one has to touch the chalice.  The Little Man will then take and drink from the chalice and replace it on the paten.  The priest or deacon will take care of the remaining consecrated wine and we will take it home with us to clean.  Then we bring it back every time we go to mass and place it on the alter before mass starts and the priest will fill it with the Blood of Christ when he fills the other chalices used during communion.  Both my husband and myself are Eucharistic Ministers so one of us will administer to him at Sunday service and the school principal will administer to him during school masses.

It seems like a solid plan and one that we can definitely work with.

They did a "taste test" today in class and both my husband and myself were there to put this practice into play and to make sure he didn't have any reaction to the wine.  It also gave the Little Man a chance to taste the wine (unconsecrated) .  We were pretty sure it would be fine, but didn't want to take any chances.  He passed with flying colors.

This is one of many challenging things about food allergies.  Food Allergies Complicate Almost Everything!  But where there's a will, there's a way.


The intinction set.  The bowl shaped paten will be the "handle" and no one will need to touch the chalice possibly contaminating it.

The Little Man will remove the chalice himself and then replace it after receiving communion.

Now the only detail left is how to get this back and forth to church without scratching it....

Still Working On A Better Plan

We met with the school on Monday and again today regarding a revised plan for the Little Man.  After Monday I was VERY discouraged.  Today's meeting made me feel a little bit better.  I haven't had a chance yet to go through the paperwork the principal gave me, but I will this afternoon.

One good thing is that they appear to be taking his allergies much more seriously.  They sent an e-mail out to his class requesting that all snacks brought into the room be nut free.  There has been talk of no food as birthday treats.

I don't want to talk about it too much because this is a public blog and I know parents from the school will be reading it.

Let's just say that we are working things out and making the best and safest decision for the Little Man that we can.

When it's all over and he's in the safest environment he can be, I'll write a big overview of all that went on and how we put our plan in place.  I'll mention the mistakes that I made and the mistakes that the school made.

But for now, know that he's safe and we are doing everything we can to make sure that it stays that way.

On a lighter note, I'm 23 weeks pregnant today.  Things are going well.  I feel good, I just get really tired by the time evening comes.

I spent all day yesterday cleaning out and reorganizing the "bonus room" (sort of finished attack off of the master bedroom).  It had become a catch all of junk so I had a lot of "stuff" to get rid of and move around.  We need to make space in there for a desk, bookshelf and our home alter that are currently in the spare bedroom that will soon be the new baby's room.

Who knew one little baby could make so much work even before he's born?  LOL.

At least it's forcing me to organize and de-clutter.  Believe me, it's a good thing.

Extra Things To Remember During Anaphylaxis

Some of these things I know, but when you are in a stressful situation sometimes they slip your mind.  And some of these things are just "observations" I made while all heck was breaking loose.  I practice what I'd do if my son ever went into anaphyaxis at least once a week (in my mind, not literally PRACTICE).  I feel like it's sort of "muscle memory" or that the practice will get me through everything I need to do while on autopilot.  For the most part, it worked.  But here's a few "observations" from our recent experience.

1.  Keep the used Epi pen.

Since we were at school and in the nurses office, she put the used Epi in the "sharps container" (which was a coffee can...  just an observation that seemed odd to me).  But when EMS came, they wanted it.  They took it with us to the hospital.  I don't know if this happens every time, but it happened that day.

2.  Volunteer any and all information that you feel is relevant, even if not asked.

There were several things that I had to share with EMS and the ER that no one asked me.  ALL turned out to be relevant in my sons care.

*No one asked if I gave him Benadryl or how much.  I just shared it and they (both EMS and ER) wrote it down.
*No one asked exactly what his allergies were.  They focused on the reaction to nuts but my son has several life threatening food allergies and they all need to be noted.
*No one asked if he had asthma, which he does.  To me this is relevant because having asthma can make anaphylaxis deadlier.  I shared that information right off the bat with the EMS and the ER.
*No one asked what other meds he was on (or maybe I just beat them to the punch).  This seemed like a no brainer to me.

3.  Make sure to ride along in the ambulance.

Again, seemed like a no brainer but for a split second I thought about driving and following the ambulance.  They have lights and sirens and I don't.  No one would know that I was with them so I would not get the same treatment as the ambulance (speeding, driving through intersections and red lights, etc.).  I would have been putting the public at risk if I did these things.  Or I would have lost the ambulance if I obeyed traffic laws.  And I don't even want to think about trying to find parking...

4.  Make sure to ride along in the ambulance so YOU can keep an eye on your loved one.

My son was on the stretcher facing the back doors.  The EMT that rode in back with us was behind my sons head and not looking at him.  At one point I could see something else was going on with my son that the EMT was unable to see (he was checking vitals and vitals were fine but something was happening).  I kept asking my son if he was OK and at one point he said his throat was scratchy and it was hard to breathe.  THAT'S when they gave him oxygen.  Would his vitals have had to dip before he received oxygen?  I'd rather not think about it...

5.  Once at the ER, volunteer any and all of that relevant information to anyone who comes in contact with your child.

I shared all of #2 with any nurse or doctor that came in contact with my son.

6.  Read labels in the ER and/or double check food safety.

My son was hungry once things calmed down and he started to feel better.  We didn't have food on us as we weren't expecting to be in the ER for 4 hours.  They happened to have a few things and offered it to him.  He was able to eat the jello and the Popsicle but Teddy Grahams and Gold Fish are not safe for him (but they did mention those items to him...  ).  We also found some prepackaged safe snack items in the vending machine and at the snack bar.

This next one was something that happened inadvertently but gave me great concern.

7.  Make sure the area that you are injecting the Epi Pen  is clear of obstacles.  

Yes, that probably sounds very strange.

My son was seated while I gave him the Epi Pen.  I happened to touch his outer thigh were I was going to inject him and I felt something hard right in that spot.  I reached into his pocket and pulled out the biggest wad of tissues I've ever seen.  The Epi may have penetrated through the tissues, but I don't know.  They felt like a medium sized ball.  I'm glad that I randomly touch him there.  It never occurred to me that something in a (very large and deep) front pocket might cause the Epi to not fully penetrate the skin (this is another good reason to always carry TWO Epi's with you).  This got me to thinking about all the other things that could be a hazard (especially for adults):  Wallets, money clips, cell phones, credit cards or I.D. cards, car keys, etc.

8.  Make sure to get a replacement prescription for your used Epi Pen before leaving the ER.

Even if you have extras at home, replace the used one right away.

These are a few random things that really struck me at the time.  I'm sure as I run through all of this in my mind over the next few weeks more things will pop up that I found to be relevant to this type of situation but at the time, these were the biggies.

And I hope you never, ever have to use any of these.

Spring In Ohio

Yes, we've got snow.  We went from 70 degrees F to 35 degrees F.  It's supposed to be back in the 70's this weekend.  It's just a dusting.

This is how we roll here in Ohio.

Saw The Allergist Today

We took the Little Man to see the pediatrician on Friday to make sure that everything looked good and that he still needed to be on his meds.  She took him off of the Pepcid and Benadryl and left him on the Prednisone for one more day. All of his vitals were clear and he seemed to be doing better.  She agreed that it was probably the pecan smashing that caused the reaction.  Since it started with his eyes,  the protein had to be in the air.

Today I took him to see the allergist.  I called the office on Friday to let them know what happened, and they wanted to see him.  I filled the allergist in on the whole situation (pita bread, peanut butter, and pecans) and he felt the same that we all did.  It was the pecans.  The eyes are a mucus membrane and proteins can be absorbed in the eyes.  Since the reaction started in eyes, then went to skin, then went to airways, the eyes were probably the ingestion point.  Of course, if you think about it, the amount of protein that caused this anaphylactic reaction in him was quite small.  It's not like he ate a handful of pecans.  I think this is what is hard for people who don't deal with food allergies every day to understand.  People can react to food proteins if they don't even eat the allergen.  Like the doctor said, if it just touched his skin, then he would have had a local reaction (contact reaction).  We know for sure that he didn't eat it and I know that he didn't touch them.  Could he have touched something that the pecans touched then touch his eyes?  Possibly.  It would have caused the same type of reaction.  But more than likely it was the protein in the air (this is why food allergy folks are against 150 people on an airplane opening bags of peanuts at the same time).  When he's eaten something he's allergic to, his reaction is different.  It usually starts intestinal (projectile vomiting), hives, red eyes, then airway.

So we all vote for the stinkin' pecans.

The allergist was angry at the school also.  He said just when you think the bar of stupidity couldn't get any lower, someone goes and lowers it.  Then he mouthed that the school was "swear word" stupid.  I couldn't agree more.

So that's my update on how the Little Man is doing and our follow up with medical professionals.  We still have a meeting with the school on Monday (after spring break).

I'm putting a short tips post together for later this week.  The tips may be things you already know but they are things that stuck me while going through this situation.

Wishing You Easter Blessings

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A Food Allergy Nightmare

Yes, it happened.  The Little Man had an anaphylactic reaction at school yesterday.  He's fine now.  But the whole thing was scary and happened needlessly.

Yesterday for Holy Thursday the school does a retreat that includes the children and invites the parents to participate for the day.  The boys wanted me to go and although I love spending time with them in their activities and being a part of their school experience, I'm tired, pregnant, and have a ton things to do.  Spending 5 hours at school wasn't on the top of my list.  Last year was the first year the school did this.  In previous years they only had the kids participate.  Although I planned on going last year, The Little Man became ill and had to stay home from school.  This was also the day that I (won the mother of the year award) forgot to pick Older Boy up from school.  So I decided to go this year partly to make up for last years debacle and partly because with the new baby coming, I probably will never go again.

As Thursday crept closer, I was having second thoughts.  Maybe I'll just skip it?  Maybe I'll just go for part of it?  But Wednesday after school (long after school was out and everyone went home) the Little Man said "My teacher said that we'll be using bread and nuts in school tomorrow but it will be OK because I just won't touch it".  HUH?  What?  What are they doing with this bread and nuts?  He didn't know.  How will  they be used?  In Class?  For a project?  Why wasn't I informed about this ahead of time?  I was angry but I couldn't call anyone so it solidified my attending the retreat so that I could see what was going on.  I spoke with the teacher in the AM and she said that the bread was pita bread and they were passing it around during one of the sessions for each kid to break off a piece.  It was symbolizing the "unleavened" bread that they ate during Passover.  They were having peanut butter and jelly sandwiches for lunch (it was a free all school lunch).  He just wouldn't touch the nuts (I erroneously assumed that the PB&J was the "nuts").  The kids were broken up into groups to go through each session of the retreat.  Siblings may or may not be in the same group and both boys wanted me there.  I lucked out in the AM because the boys were together.  This is where the bread passing took place and I made sure that the Little Man did not come in contact with the bread.  They also handed out empty egg cartons for an art project (no one mentioned egg to me) and I also was able to help the Little Man by pass that possible disaster.

Lunch was eaten in the classrooms this year, not in the cafeteria as was the case last year.  So I made the decision to eat in the Little Man's room so that I could keep on eye on the PB&J.  All went well there, except that I was confused as to how PB&J was allowed in classrooms that were supposed to be "peanut free".  At least that's what I have been told the last 3 years. Now I'm not a Pollyanna.  I've been in that school enough to know that the classrooms aren't really peanut free.  I've seen granola bars with nuts, Reese's peanut butter cups, peanut butter crackers, and more all in the classroom.  Clearly "peanut free" is not enforced.  But for the school to actually supply the peanut butter confused me (and ticked me off).

After lunch there was another session of the retreat and my boys were not together.  Thinking that I navigated the bread and nut dilemma, I opted to attend the session with the Older Boy.  His session was very nice.  It was uplifting and didn't contain any food at all.  Apparently the Little Man had a different session that I was unaware of.  We'll get to that in a minutes (I know, I'm writing a book here, but stay with me).  After the 3rd session, I went to my car to wait for dismissal.  I saw parents who attended the retreat coming out with their kids.  Crap.  I should have picked up mine so we could get out of there, but apparently I didn't get the memo.  I'm glad that I didn't though because the Little Man would have had his anaphyactic reaction in the car on the way home.

As I'm waiting, the secretary sticks her head out the door and says "Janeen, the Little Man is having an allergic reaction".  When I get in the nurse's office, his eyes are blood red and so is his face.  He can't stop rubbing his eyes.  Could it be food?  Is it seasonal allergies (at this point there's no other symptom except for the eyes)?  I give him Benadryl in case it's seasonal but after 5 minutes it's not working and it's getting worse.  I see a few hives around his eyes and one eye is starting to swell shut.  I pop him with the EPI Pen and have the nurse call 911.

The fire station is right down the street and they are there in about 2 minutes.  They sent 2 ambulances and a police man so there is now a lot of people crammed into the nurses office.  Questions are asked about the EPI Pen and what caused the reaction.  I don't know what caused the reaction.

Then it comes out.  In the Little Man's 3rd session, they had pecans in zippered baggies and the kids smashed them with Lincoln Logs (except for my son who apparently just sat there as this was going on).  It had something to do with learning about the beating that Jesus took on Good Friday.  I can't explain it because it makes no sense to me.  I just kept hearing "But they were in bags".  REALLY?  AND BAGS DON'T EVER GET HOLES IN THEM, RIGHT?  So we aren't positive, but my best guess is that pecan protein got into the air from the "beating" and the Little Man breathed it in causing the reaction.  Could it have been the PB&J?  Maybe if he touched something that had peanut butter on it and then stuck his fingers in his mouth.  Could it have been something from the pita bread?  Maybe, but I doubt it and that was 3-4 hours before this reaction occurred.

I'm betting on the pecans.

We've never seen a reaction to pecans.  We've never had pecans in the house.  We never will have them around him again.

The Little Man, Older Boy and myself got a ride to the hospital courtesy of the fire department ambulance.  I'm glad that I had them call 911 and didn't try to drive him myself (please always call 911 when an EPI is used).  On the way there he said his throat was scratchy and they gave him some oxygen even though his levels were showing up fine.

Once in the ER 6-7 nurses and doctors came in to triage him.  He ended up getting another shot of EPI (because his eyes and skin were still red, he had some rashes, and his throat was still scratchy).  They gave him a steroid, Pepcid (which apparently has antihistamine properties... I did not know this), and more Benadryl.  The EPI was given in the arm but the others were given through I.V. and he was not happy about that.  He also got a breathing treatment because his lungs were wheezy and he got a little over a 1/2 a bag of fluid through the I.V.  They had us stay 4 hours so they could monitor him and make sure the reaction wasn't biphasic.

Since this story has become epic, I won't share my "tips".  I'll save those for another day and a separate post.

He's home now and doing fine.  He'll continue to get Pepcid, Benadryl and the steroid over the next 2-3 days to keep any biphasic reactions at bay.  He'll also get extra love and attention for all that he's been through.

I'll also be sending the school an e-mail demanding a meeting after spring break is over and I'll be revising his "action plan" to get us through the end of the year safely.

I'm so thankful that this ended well.  But I need to do everything in my power to make sure that this never happens again.  It was completely needless and senseless and they put my child's life in danger.

If you got this far, thanks for reading.  I promise to try and make the "tips" post shorter.

Things That Are New To Me This Time Around

The last time I was pregnant was 8 years ago.  There are many things that are different this time around and I don't mean just because I'm an "old lady" this time.

1.  NUMEROUS testing:  I did not have a First Check, Triple Check nor Quad Check with the other two.  I don't know if it was because my O.B. was old school or if they didn't have those last time but all these blood tests are new to me.

2.  Level 2 Ultrasound:  Maybe I did this last time, but they didn't call it that.  And I think I had it done by my O.B. in her office not at a specialist.

3.  NUMEROUS Ultrasounds:  I think this is mostly due to my age.  And I have NO complaints about it.  I love getting to see the baby as much as possible.  But I've had 6 ultrasounds at this point.  With my other two children, I had TWO.

4.  3D Ultrasound:  I just had the normal "xray" type ultrasound with the other two boys.  The 3D is really cool.  I have not had a 4D and doubt that I will but that would be cool too.

5.  EVERYBODY AND THEIR ASSISTANTS pushing the amnio on me:  No one ever mentioned amniocentesis to me with my first two pregnancies.  I'd say that this too is because of my age, but over on BabyCenter I see many, many women getting the amnio and their age range varies from 20's to 40's.  I think this is more of a symptom of all the other blood tests than just age.  It appears that there are many possible positives for down syndrome that show up on these tests and the only way to know for sure is the amnio.  I'm starting to wonder if all these new tests are really a good thing.

6.  Gender Reveal Parties:  If you've done one of these, I don't mean to be harsh, but I don't get it (could be because I'm older...).  The gist of the gender reveal party is that you have an ultrasound and the tech writes down the gender of the baby on a piece paper.  You don't look at it, but you take it to a bakery and give it to them and have cupcakes or a cake made which looks "normal" but the bakery puts either pink or blue icing on the inside of the cake or cupcakes so no one knows if it's a boy or girl until you cut the cake or bite into the cupcake.  These pastries revolve around a "party" where you invite friends and family over to share in the cake cutting or cupcake eating.  Finding out the gender of your baby is fun.  But a party?  Really?  I'm not sure that the gender of your child is as important to other people as it is to you.  What ever happened to just calling people?  Once people know, what else happens at these "parties".  I'm just baffled by this new trend.  But I'm old, so what do I know...

7.  2nd and 3rd time around baby showers:  It seems that the tradition of having baby showers with only your first child has gone by the wayside.  Apparently moms find it OK to have showers with EACH child and some even throw them for themselves.  "Every baby should be celebrated" is the thinking on this.  Again, I'm old school because I still like the "shower for first child only" concept and not throwing one for yourself.

8.  Baby Q's:  This is sort of a "welcome" party after the baby is born.  It's typically a BBQ type party in the new parents back yard and friends and family are invited to welcome the baby to the family.  New parents do this who don't want another shower but want to celebrate the baby.  Some people do this who don't have a "Baptism" for their baby.  I think this could be fun.  But I know with my other two, I wasn't up for a big party a month after the baby was born.  Plus we'll have a baptism with a party afterward.  Maybe we'll make it a Baby Q and try to be trendy :)

9.  BPA:  Oh we had this last time, but we just didn't know about it.  Now you see items such as bottles, binkys, cups, etc. listed as BPA Free.

10.  The Internet:  We had this too but things weren't as extensive as it is today.  I can research anything and everything before I buy it.  And I can find answers to all my questions.  I can also find scary statistics and I can self diagnose every ache and pain.  With the good, comes the bad but I love having the Internet and information at my finger tips this time around.

11.  Apps:  I have numerous apps that give me information during pregnancy but I also have an app for after the baby is born.  It will allow me to track and time feedings, how much the baby ate, wet and soiled diapers and sleep patterns.  We did this with the other two but we used a notebook and pencil (What? Were we in the stone age??).

None of these things are bad or good, they are just different.  Some I appreciate more than others but it's funny how things have changed in 8 short years.  I wonder how different things will be when my kids make me a grandma?  I can't even imagine.