Saturday, August 7, 2010

this thing called food allergies....

My blog has taken a back seat as summer is just too darn fun, that I don't have as much time to type away on the computer.  Oh, and probably more realistically, Hubby and I have gotten addicted to watching TV series on Netflix, (first The Office and now Lie to Me) which is probably the real reason I have not taken the time to write on my blog.

Last Sunday in church, a mom my age asked me, "how is your summer going?"  I replied happily that it has been a wonderful summer.  "Great!" she warmly replied.  "And how is your summer going?" I inquired.  Her smiley face lost its light and she said with a shrug and a grimace, "its...okay."

I knew how she felt at that moment.  Last summer was a rough rough time for our whole family, and I felt robbed that I could not enjoy the summer as it was meant to be enjoyed.  I mean, I had oodles of blessings and I was grateful, but it was not summer bliss.  Obviously that is how this lady was feeling.

But, you can bet that as this summer has been very wonderful and care-free, I am more thankful, more grateful and taking so much less for granted.  It's true.  No one wants trials, but trials truly are strengthening and character building.

Many of you ask how Mickey's allergies are doing, and I am sorry I have not done a better job of updating.  His allergies are doing very well. We had an appt. in March with his wonderful allergist ( now 2.5 hours away) and he was pricked a horrible amount of times.  I can't remember now... maybe 70 times?  We found out some environmental allergies and she did some latex testing.  Now the latex testing is not really an exact science and not even FDA approved... but it can give some indication.  He did not show any sensitivity at this point and that was awesome to hear.  It does not mean he is not allergic, but that he is not reacting at this time.  He will always be high-risk due to his banana allergy which is considered a life-long allergy.  So now we don't feel like we have to be concerned about each toy he is playing with but we are still very careful with high concentration latex items (dipped latex) like balloons and medical gloves.  Latex is considered a cumulative allergy meaning the more you are around it and in contact with it the more likely you are to develop an allergy.  But the fact that he is not currently reacting is great news to us!

Now here is the weird thing.  The last 2 times Mickey has been skin pricked for milk protein it has been negative, this time it was positive.  That was surprising for both the allergist and me!  Keep in mind that he has been negative before and still reacted after eating milk.  And he has also been highly positive--like major huge multiple hives from just a teensy amount of milk, after having previous negative tests.  As Mickey's allergist says, "If I could figure out how Mickey's unconventional allergies work, I will be very famous in the allergy field".

Anyhow,  Mickey is NOT touch-sensitive to milk protein anymore and that has made our life SUBSTANTIALLY free-er.  For most of Mickey's life, he would break out in hives if someone would touch him after eating/handling dairy.  This makes being social humans rather difficult.  Everyone he was around had to wash their hands and mouth off.  You would be shocked at how much milk protein residue can stay on the lips after eating a sandwich with cheese in it.  This is the point of life in which we should have bought stock in Benadryl.  So you can imagine the freedom we feel in not having that worry anymore; and we are thankful!

Mickey can definitely tolerate small amounts of dairy now.  He has been eating a small container of  Greek yogurt every morning for a month or more.  Greek yogurt has only one of the two allergenic milk proteins, so it is a good way to introduce dairy to his body.  So this has allowed us to even eat out with Mickey now and order off the menu!  This has occasionally been a disaster, but many times a success!  When he was touch sensitive, any spatula or grill that may have had cheese or any dairy-containing food on it would of course endanger our sons life...so eating out was simply not an option.  Freedom!  What seems like normal every day things to most families are huge victories for us and we are thankful!

I remember when Mickey was a baby and the allergist told us that most kids will outgrow their milk allergy by age 5, I did not feel relief.. instead my mind screamed... "AGE 5!  I cannot do this for FIVE years!!!!"  But God HAS given us the strength and the ability to adjust; and we are thankful!

Last year when Mickey's lips and tongue swelled up, then saved by the blessed Epi-pen, and we had no idea what had happened, then finally figuring out it was bananas and the terrible realization hit me that Mickey could continue to develop more and more allergies and suddenly the idea that all foods were potential poisons for his sweet little body was EXTREMELY overwhelming and fear-producing.  Mickey has not developed any new food allergies this year and we are thankful.

Mickey did develop an allergy to cats after two months of adopting a baby kitty into our home.  That was heart-breaking to have to take away a beloved pet.  But, a cat allergy is way more do-able than a food allergy; and we are thankful!

Minnie now age 2 has not had any allergic reactions.  whew!  She randomly breaks out in red splotches on her face and neck while eating and I have kept track of those times and the foods ingested and have found no connections.  We are sooo thankful!  Most families with food allergies have multiple children with multiple food allergies making life very very hard and complicated.  We have not feed peanuts or tree nuts ( almonds, pecans..etc)  to either or our children per our allergist recommendation.  At age 5 which is in a few months we will begin introducing them to Mickey.  Just writing that last sentence made my heart skip a beat.  It is so scary to feed your child something that you are waiting to see if it will produce a life-threatening reaction.  And we know that Mickey does not follow the normal allergy routine.  Most kids will react the first few times exposed.  Who knows with Mickey, it may take weeks, months or years ( like the banana).

We are sending Mickey to a pre-school this fall.  Scary.  So scary for a food allergy mama!  Many food-allergic children are home-schooled due to safety issues, but we are going to try it as we feel he is at the point that he can make wise choices and can have the support of the school.

  I hope we are doing the right thing.


 I just swallowed a big lump in my throat.


 I felt that I wanted to try a pre-school out before I we jump right into the public school for Kindergarten.  Home-schooling is an option that I am finally warming up to if need be, but I really hope that it will all work out well in our small-town public school.

Every few months I get a Facebook message or email from someone who has a friend that has just found out of their child's food allergy diagnosis and they are scared to death and have no idea what to cook or eat.  My heart sinks for them and it brings a lot of emotional feelings for me as I remember that all to well. I am grateful that I can have the opportunity to lend a helping hand and to help them begin their journey.  Sometimes its just a list of milk free foods.

When you first find out about avoiding milk and you have to read EVERY label of every food you pick up, it is exhausting and discouraging.  Like breads, it is sooo hard to find a bread that does not contain milk.  Just in case you are curious.. we use Arnolds--but for a while we had to figure out how to make our own bread as we simply could not find milk-free bread in our area.  And it is really hard on the budget to suddenly have to be purchasing specialty foods.  We have become accustomed to this over the years, but when it hits you all at once in the beginning, it is overwhelming.  There is a study that shows that couples with a milk allergy child have higher divorce rates due to the stress it brings to the family.

Let me give you a glimpse into our life when this was new to us.  I remember shortly after we had our first allergist appointment and we had started attending a new church that had a nursery setting that could accommodate Mickey. (Any church that had someone different in the nursery every Sunday was not feasible as we had to have them trained on the Epi-pen and allergy aware.)  We had talked with the nursery care workers  for several weeks and they were very willing to learn the Epi-pen and we finally felt safe to leave Mickey while we went into church.

Twenty minutes later, our pager went off and we went scurrying to the room to find Mickey with hives.  Here another little toddler had been eating a donut with frosting before coming to nursery and he and Mickey had shared a toy.  We gave Mickey Benadryl and when we could see the reaction was not going to progress we went back into church.  Shaken, of course.

My mind was far away from the sermon as I was trying to process our situation.  I suddenly felt so overwhelmed that my son could be in danger from another toddler, and of course I knew that I could not control what every other toddler in the world ate, so how could I ever protect my son?  Every mother knows that protecting her child is instinctual and we would give our life to do so.  To not feel like I had that ability was devastating.  I remember the thought coming to my head and planting itself  "If I can't protect Mickey, then Mickey will die."  I am not a crier.  My husband could probably count on his fingers the number of times he has seen me cry in our ten years of marriage.  But that Sunday, fear and inadequacy overwhelmed me and I felt weak with sorrow.  The tears started flowing and I quickly walked out of the sanctuary to avoid making a scene.  I was planning to escape to a room somewhere in the church where I could just cry.

I was intercepted by two ladies as I left the sanctuary.  I was crying too hard to protest their desire to soothe me.  It was one of those crying sessions where I could not even talk.  So they talked for me.

"You must have been really touched by the sermon?

"Are you feeling the weight of sin on your heart?

"Don't worry, Jesus can forgive all of our sins:

I kept crying and they kept talking.  Then I realized what had happened and why these two ladies were keeping me from the solitude I desired.

The pastor had been presenting the Gospel--how all of us were born sinners and are destined for hell, except that through Jesus's sacrifice we could be saved from eternal suffering by trusting that Jesus's death did pay the penalty of sin for us.

These two ladies had been planted outside the church sanctuary to pray with anyone that desired to turn their life to Jesus.  These two sweet ladies saw my tears and assumed that I was ready to give my life to Jesus!  I honestly felt sad that I was about to disappoint them with the news that I WAS already trusting in Christ.

 So I told them that it had nothing to do with the sermon and told them what happened in nursery and how scared I felt.  Those two ladies loved on me, hugged me and prayed with me and brought me much comfort.  We went to that church for the rest of the time we lived in South Carolina--about another 9 months and those two ladies were dedicated prayer warriors for me, hubby and Mickey's allergies.

 They took such an interest in his allergy situation and truly cared for us.  I was so thankful that those ladies intercepted me.  I thought I wanted solitude and I felt embarrassed to cry in front of others, but God knew that I needed hugs, reassurance and to hear someone pray out loud for me infused me with His peace.  I was grateful.

This whole allergy journey has taught me a lot.  Its not tragic like cancer or many other diseases or disabilites, but is has changed us and given us greater compassion for families that have concerns for their child's physical or emotional health. And now we see our almost 5 year old Mickey handling his challenges with grace and strength and a great compassion for others... and we are thankful.

7 comments:

smw said...

off and on i really wonder how things are for you. thanks a ton for this update, and i'm glad that in general it is looking up!!

Kirk and Keri Plattner said...

Thanks for the update and for sharing your heart!

The Wicker Family said...

While my heart aches for all y'all have been through and will go through it brings me great joy to read how true you stay to your faith! I loved reading your deepest thoughts. God is so good. While our stories are so different, involving our children, I feel like we understand each other so much- we want our babies to be safe, healthy, and strong and God continues to do that over and over! Sending love from SC!

Caroline said...

You are awesome. I can't imagine how difficult that all must of been for you guys, I remember what excited, dedicated parents you were before he was even born and I know he was sent to you because God knew you would be the right parents to help him take care of his little body the way he needed to.

On another note I can't believe how big Minnie is! She is so adorable!

We love you guys!

Bryce and Erin said...

Hellooooo! It's been a while. I'm sort of getting back into facebook (I secretly hate it, though). I found your blog. Cute!

We are milk free in our home as well. But not because of life-threatening allergies. I have a strong intolerance to the stuff, and a new family doctor that we're seeing feels strongly that no one ought to consume cows milk. Did you know we are the only mammals that have milk past weaning age?

Anyhoo...I know your pain with all of the specialty foods and all. Pricey. Ouch.

I hope preschool goes well for your little one. I know the annoyance of eating allergy free, but I know nothing of foods being life-threatening to someone. God give us perfect grace for each day, doesn't he?

Anonymous said...

I stumbled upon your blog through someone else's blog and I'm happy to have found you! I have 4 children and 3 of them have allergies (given to them by dear old mom!!) We didn't find out about all the known allergies until last year when we were FINALLY referred out to an allergist. After many years of struggling to understand what was going on my pediatrician finally did blood work and my kids were off the charts. After doing allergy skin test by the allergist they found all sorts of allergens we needed to avoid. We also found out my daughter had asthma (didn't know that). Both of my sons have it but I had never noticed it in my daughter but she was young and couldn't let me know she was uncomfortable. My daughter is also the only one with food allergies which had prompted the blood work finally. The frustrating part is we can't find out what it is she is allergic to and it is pretty scary as everything is a question. She is starting to get a little food phobic and it is sad to see. It is nice to read a blog that I have something in common with!! :)

Michelle o.

J and A said...

I know this is completely random, and I'm not sure how I stumbled across this blog (I've seen it a few times through mutual friends), but your fostering post (I will be praying for your family over your loss!) recommended I read this one. And I'm thankful. It was a blessing, because the dairy portion of it sounded so similar to my son, as his allergy has been severe at times,yet he tested negative with the allergist (who was insistent that he wasn't more then slightly allergic to dairy when he breaks into hives on his face and open blisters on his bottom). Not that I delight in this allergic path that God has called your family to take, but it gives me comfort knowing we aren't alone, and it gives me hope to hear that your dear child is now able to eat Greek yogurt. :)