Wednesday, February 9, 2011

When your child has a food allergy....

When Kathleen started eating solid foods fear came in the form of hives so large, she looked like a burn victim. We had Dr's tell us it was a virus, let it run it's course. We were not convinced, but trusted the Dr.'s opinion. Then the hives and the itching got worse, so I began administering benadryl....because now the Dr. said "oh, she may be allergic to something". Then it was the constant question of "Did you change dryer sheets, detergents, give them something different to eat"...well she's just starting food, so yes, she's had several types, YES! We think it's food related but needed to pinpoint it. They in turn said keep her on the benadryl a few more weeks.... Well we didn't make it a few more weeks.  Kathleen had a day of listlessness, that scared me to death. We rushed her to the local hospital and after looking at her vitals they tried to get blood drawn. She was so dehydrated it took 2 nurses and my husband to hold down her tiny little body while she screamed and cried so the nurse could "fish" to get a vein that wasn't blown.

I will never as long as I live forget that image, ever. It tore our hearts out that we couldn't take away her discomfort, as a parent it is one of the worst feelings ever. They determined at this point there were issues and sent her by ambulance (while I rode with her and watched her unresponsive little body lay on the stretcher) to a well known hospital to be evaluated. She was severely dehydrated from the benadryl. Yet, to till point no Dr. would admit or test her for an allergy. Why, was my question? So we thought, great we're finally going to get answers! Yes well.....that didn't happen...just another nightmare.

Kathleen spent just over a week in the hospital, ended up with massive diarrhea (we feel they pushed too many liquids) They could give us no answers. She was still covered in hives and we kept saying it has to be a food allergy! Yet, they said, no, must be a viral thing. She was so worn out and weak and her body was trying hard to fight the benadryl and the reactions. Her heart was monitored as it was skipping beats.Yet they would continue to bring regular foods. Which she refused so straight IV liquid was all she would take.

Jerry and I camped out next to her crib, and one night (I never slept) a nurse came in about 2 AM to check her vitals. She must of thought I was asleep....she walked to the crib and roughly grabbed up Kathleen to check her vitals, it startled her so bad her heart monitor started going off and she cried. (Now you must realize this child had gotten hardly any sleep due to the constant discomfort of the hives) I jumped up off that cot and told her she better never touch my child again. That anyone with common sense knows you don't startle someone sound asleep especially when ill and with heart irregularities. I was livid. Mind you it takes a lot for me to get upset, but I have red hair too and I earn it proudly when someone messes with my child. She left without saying a word, I believe she knew she was wrong and properly feared for her job. I was incredibly disappointed with this hospital. When they got her stabilized, they sent her home, diagnosing a "virus" and a follow up to our regular Dr. Yes, she left with hives. I thank God she was young enough to hopefully not recall that experience, but again it is something I will never forget. ( This is in a nutshell of course, there was more...).

After her release I called an allergist to explain the situation, I was tired of waiting for a Dr's referral and at this point I was willing to pay anything to find out what was wrong. They stated they could run allergy tests for food but she had to be off the benedryl for a few days. Which was virtually impossible because she was developing hives constantly. We tapered it down to the day before and took her to get tested. Even with traces of Benadryl in her system the results showed a severe allergic reaction to eggs. Well of course we were like we haven't fed her any eggs knowing it can be an allergy early on.... well then you begin to realize how many foods have egg in it. We weren't thinking of it in that way. That was the day our lives changed as a family.

Who knew something as small as an egg
Could have such a serious effect that we now carry an epipen everywhere we go....

To keep this precious little girl of ours safe......

When your child is diagnosed with a severe food allergy, things change drastically. You have new worries as parents about every food she comes in contact with. We needed to scour every label, realizing how some breads, most cakes, cookies, noodles etc. carried some trace of egg that could cause her to go into anaphalatic shock. With her still in the toddler stage we had to watch her every move and teach her 4 year old sister not to share foods. It meant having family members and friends understand how serious it was.  It led to the choice of not sending her to a preschool program that I could not attend as well. It was the fear of putting her very life in the hands of a stranger. Wasn't going to happen for us. It meant that a nice evening out to a restaurant would change, the fear off egg possibility contaminating her food. We learned quickly which restaurants we respected and those we will never set foot in again, due to a no outside food policy. Yet we had a toddler....with  a severe allergy that they didn't quite seem to understand. Yet we had other restaurants welcome our mini cooler bag so as to not let them be liable in any way for food that may cross contaminate her order. It changes how you view so many things, and sometimes it seemed so many did not understand the seriousness of the situation.

Today was a big day.... we were finally o.k.ed to retest her allergy. So off we went this morning, her and I to the allergist office. We had Kitty (stuffed animal) all wrapped up in his blanket to go with us. A caring doctor this time who was very good explaining everything to her and 5 little test needles, that we crossed our fingers for. We learned that 2 parts of the egg were now negative, but she is still showing an allergy to egg whites. So next Tuesday I will be taking her in the morning to have a food test done. I will need to cook eggs and take them in and sit for hours after she takes 1 bite at a time under the close watchful eye of the Dr. Praying there is a possibility that she has outgrown this allergy. Praying for my peace of mind that when she attends Kindergarten this year that everything will be o.k. That I won't have to worry about a child handing her a cupcake, or cookie by mistake. Or worrying whether or not they'll give her her epipen in time should she need it. It's hard enough watching your kids grow and letting them out the door for the first time on their own... but add a life threatening factor to that equation and fear seizes your heart every minute of every hour.

I am thankful for the recipes I have that allow her baked goods made by me. I am hoping that her Valentine celebration at the nature center tomorrow will be the last one I have to worry about her getting a hold of something she can't have. I hope it will be the last time she is singled out by me saying, "sorry sweetie, you can have that..." I'm hoping she can bake and cook more things with Hayley and I without having to watch from the other room while we handle eggs.

My thoughts and prayers are going out to every family that faces this. I have friends who children are allergic to milk, egg, and peanuts. I know eggs are a big enough challenge, then to add more.... the menus get very creative. We do this as parents because we love our children and there are no challenges we can't overcome. I treasure the friends I have who make special meals when we visit so that Kathleen can be included (you know who you are! :-) That truly means the world to Jerry and I.

I know I am now in the habit with the girl's friends of asking the parents if there is something their child is allergic to when visiting us. Same at school, I ask and I include an ingredient list. There are great recipes that omit these foods, that still taste amazing enough for all the kids to enjoy. It's hard to see your child's face when they are unable to have certain things that other kids enjoy. She even has missed out on story time projects due to cookie making activities. The parent arranging it didn't have a child with an allergy and didn't ask. So I had to leave early with Kathleen. If you are a parent of a child with food allergies, I know you understand.... if you are not, please understand how to help make a difference for these children. You have no idea how much the parents and the children appreciate that effort. :-)

Thanks for sticking by and listening to me ramble today....this was heavy in my heart.... As this little girl is my heart and I only want the best of everything for her....



Heather's Blog-o-rama said...

Oh, Jill, I would have throttled that nurse for being so rough with my child. OH, goodness, the hand of God has really been over your precious little one :) :) I'll pray that she outgrows her allergies...but wow. The epipen, I've never seen one before. My grown cousin has to carry them around with her all the time. She can't have any dairy. It was a weird allergy that wasn't discovered u ntil she became an adult. As far as I know it's only milk, but she carries those pens all the same. Oh, I'll be praying for her health..and for the health of the rest of the family,too. Now since she still has some egg allergies, is her diet primarily vegan? I don't know much about this!!! Oh, goodness!!! Thank you so much for sharing your mommy's heart with us!! Love and hugs from Oregon, Heather :)

Julie Harward said...

What a scary thing...with our 8 children, I never had to face something like this and as I grew up, it seems things like this were not heard of. Seems like things have changed..I don't know if it's the way things are done now but it can be so scary and very real. Hope it gets better.

Life In a Little House said...

Oh what a sweet heart Kathleen is I feel for you I had severe food allergies as a child and was frequently rushed to the hospital becuase I would go into shock and be covered in hives so bless her little heart I know how she feels. I out grew many of my allergies I still have some. And my children have them and husband so we have the epi pen on hand as well. It is hard when your a child to see other children eating foods you can not, it sounds silly but even as an adult I still struggle with this, I would love to just be able to eat a donut lol!!~ Praying for good results from the recent test and a complete healing from those nasty allergies. ~Love Heather

Lindsay said...

My daughter was 3 months old when she had to go to the hospital(not for a food allergy), and we had a terrible experience with a rough nurse and a few doctors. I was livid, just like you! It was eye opening.

I pray her testing concludes she has outgrown her allergy! She is blessed to have loving, vigilant parents!

McVal said...

Oh my! How frightening! I'm so glad you were able to find out what it was...
What a cutie pie!

claudia b said...

How scary!!! My youngest is autistic and while he doesn't have any food allergies (other than cow's milk) several of his classmates did and I always make sure we have appropriate cakes and treats for them.

I hope food allergies are a thing of the past for your sweet Kathleen!

Alea said...

I am very sensitive to food allergies because of my children's reactions to gluten and dairy. We homeschool our children; I cannot imagine how stressful it would be to send them away when young with allergies.

I pray that your beautiful little girl grows out of her egg allergy!

Donna said...

Jill, I so understand what you are going through and I feel so bad for you that your daughter has to go through this. My granddaughter Lena went through a terrible bout just a couple of weeks ago that scared us half to death. We were all visiting in the livingroom..and she grabbed a piece of Christmas candy..caramel/milk coated popcorn.

The next thing you know she's crying, breaking out in hives, can't breathe... Then Mom and Dad grabbed the breathing machine..and benadryl. I was thinking we might have to stay with the baby while they took Lena to the hospital..but it finally subsided. It had to be the teeniest..tiniest bit of milk..but it was too much.

You are good and brave mom to be so diligent. She's a sweet girl.


Sue said...

Hi Jill...I can't even imagine having your little one go through all that you have been through...When daughter was little and we had just moved to Florida a relative gave her a mango to eat without my knowledge...The child swelled up something awful...luckily the doctor knew immediatly what it came from and she has never even gone near a mango since...but my gosh to have an egg allergy must be very difficult when you realy don't know everything that eggs are in....Luckily they discovered the problem and "Red" looks happy and healthy and I just love that little face to death...she just puts a smile on my face...Bless you both! Sue.

Anonymous said...

I can only imagine how frightening it is to fear that your child will eat something to cause her such illness. I sure hope the test she has to do comes out well and you will have the peace of mind you are hoping for. It is a shame the horrors that doctors put some people through while trying to make a diagnosis. And I would have been the same way with that rude nurse also, I hope you are having a good week :o)

Itsy Bitsy Learners said...

My five year old has an egg allergy two ... seems to be mainly the whites of eggs. For her the hives appear on the body BUT they appear in the eyes two.

We had to rush our daughter at age 2.5 to a hospital ... where they made us wait to fill out paperwork. We were the only ones in the waiting room. We waited 15 minutes! 15 minutes!!!

They had to epi-pen her as soon as she was seen by the doctor. Then there was a week of nasty mood altering steriods.

It was awful, I am so glad that you figured out what your daughter was allergic to. We have since found out that she is allergic to peanuts too, BUT strangely it is the egg whites which cause her airways and eyes to swell rapidly.

P.S ... I have LOVED your egg free recipes!

A Primitive Homestead said...

It is such a shame it takes so long to figure out what causes some symptoms & what we all go through. My daughter was born 3 wks early & sick the first 3 mos. of her life. I took 13 wks off work to care for her. I had to go back to work & she was still sick. Born small & not gaining weight I was beside myself. Finally it was found it was the formula. It had a cow milk base to it. She was changed to pure soy milk. Finally happy & growing & I getting the rest I so much needed. Now 19 she has been sick after eating alot & is having chest pains. EKG done 2 wks ago. All was ok. They believe it is from foods she eats with wheat. Now she must keep a food journal for the next few weeks. Here we go again. I have been amazed at just how many recipes without eggs you have shared. What we must do on our own to help our children. That nurse sure was not a good nurse in my opinion. Sam was born with a heart infection. He had a shot each in each leg every 4 hrs. Those tiny legs swollen & black. A new nurse explained they had very thin needles that could be used. That was started. Next shift nurse brings the thick needles. I was livid. She went & changed the needles. I wonder where the compassion is in some nurses. If little children had no parent to stand up for them. How sad. Blessings!

Julie said...

Mike never had food allergies but he had asthma brought on by hay fever, spring time fluff and after working on a Horse merit badge, horses. I was home with a house full of kids, my best friend was using my phone cuz their's wasn't working and we didn't have a cell phone then. Anyways, Mike didn't tell anyone he was having problems, he crawled under a wire hose reel and blew up like a balloon. He couldn't breath, he could talk he barely could see. You want to talk about a friend just about dying when she saw him and then not being able to get ahold of me. Oh my Lord was it horrible. 911, ambulance, hospital and 2 days of not knowing if Mike would be okay cuz it didn't just stop there it effected his heart. After that we had cell phones, never shut them off and have the epipens and found out anything with a hide Mike is allergic to. He helped his grandpa butcher a deer, another visit to the ER, he helped Mark with the cows, off to the ER, now it's goats too. Guess Mike won't be a farmer.
All of this just means I know, I understand and it's one of my very important papers I give my daycare parents and insist they fill out right away.
Maybe your post taught just one parent about the importance of asking. Thank you for sharing.
Take care my friend. God Bless you and your family.

Wendi said...

I have a food allergy to russian dressing and poppy seeds. It was scary when I had a reaction and it was mild. I can't even imagine how scary it was for you. I understand the fear at restaurants. I always check and re-check at the salad bar to be sure I am getting french dressing and not russian. I hope that she has outgrown her allergy.

Kerri said...

If you don't have a child with a food allergy or know someone that has just don't know how serious it really is. Thanks for explaining this. My heart goes out to you and Kathleen and your family. I will keep Kathleen in my prayers on Tuesday!

Mama Hen said...

This story tugged at my heart. My daughter has had to have blood drawn a few times and watching them fish for her tiny rolling vein is very hard for a mom to do. My daughter went through an experience when she was in the hospital a few months ago and the nurse was young and could not find her vein. I knew she would not be able to do it. I even asked the doctor prior for an experienced nurse who could get it in immediately. I know from having been very ill and having had endless bloodwork where they can never find my veins that it is really important to have a nurse who is really great at finding it. That is frightening that you saw the nurse be so harsh with your baby. The mama bear in me would have really come out! I am so happy that you have figured it out. It can be so frustrating not knowing what is wrong. I hope you are well my friend. Have a great night!

Mama Hen

Anonymous said...

Jill I know your pain.
As Savannah and I both have a allergy to Eggs. And anything with Oats. Oat Filler, Oat Flour, Oat Fiber.
I too have to read every tortilla wrapper, bread, muffin, cereal, organic item for the Oat items.
Our symptoms with the Oat one happens within 20 min of eating, we usually start with sneezing, then the watery and itchy eyes and then if it goes into full reaction we have symptoms like the common cold; Body aches, Coughing, sore throats, runny nose.
I remember when Savannah was a toddler in daycare, I had written all over her profile, the instructions OAT Allergy and they gave her Cheerios. Meanwhile don't even think about bringing peanut butter into the facility, but Savy was having a reaction and we get a sorry, better luck next time.
Our incident's are not severe with the eggs. Just a day of feeling yucky.

I'm sorry that nurse treated your little one with such harshness. I will pray for you guys that the test next week will show negativity so Miss Kathleen can go into Kindergarten and enjoy all the fun things that are apart of being in school.

God bless you guys!

Carmen said...

Wow! I will be praying for her full recovery. I am sure that it would be so much of a blessing to be able to let her go to K grade with out worrying about someone giving her something that could hurt her. BLess her little heart!

What a story you have!

Blessings, Carmen

Cheesemakin' Mamma said...

I'm so sorry that you've had this burden to bear. I'm praying she'll be fine now :) Keep us posted!

His bondservant said...

How horrible that must have been for you! I do know something of that kind of fear as I have three asthmatics and we have had our times with ER's and shots, steroids, etc. to get them breathing correctly. But, I have never experienced the food allergy...and eggs...something that is in SO many things. What a wise Mommy you were to seek other opinions. I do try to ask before any one comes over about dietary issues. Having an asthmatic...I know how it is when parents don't think twice about having their sick kids visit because they just have a little cold. But, it is never just a little cold for can be something so much more devastating. God bless you my friend.

Camille said...

How scary food allergies can be. What a blessing that you didn't give up and kept on going to find out the real reason behind her difficulties. She is blessed that you are her Mommy. :) Two of our children carry epipens too...they are at risk for anaphylaxis due to peanuts and nuts. I bake/cook most everything for them too. Hang in there!

Many blessings,

SonyaAnn said...

I know your pain all to well. DJ had a severe allergy to red dye 40. He has almost died 3 times. And he has a massive tolerance to Benadryl at this point. I gave him 5 doses at home(2 hour time) and the ER doc didn't know what to do with him because he was still covered in hives. I said hit him again. He slept 20 minutes and was wide awake again. The doctor couldn't believe it.
At this point, all we can do is hope that our kids out grow it.
You and your family are in my prayers.

Erin from Skoots and Cuddles said...

i never really gave this subject a lot of thought, my children, thankfully, don't suffer from allergies. jill... what a scary, scary situation! keep us posted. hopefully your darling daughter will pass her next set of tests.