Tuesday, January 4, 2011

A mothers pain

So I walk in to my quiet and peaceful home , it's 8:30 Tuesday morning and I just dropped the girls off at school.  I'm finally alone.   I begin to break down and cry because I'm finally able to let go and I just can't stop.  Food Allergies had reared its ugly head and invaded our lives.   They took over my little girl these past couple of weeks, turned her into a child that I barely recognized.  I had been out of touch with reality and didn't even visit family during the holidays, it was one of the most trying moments of my life.

It all started a week before Christmas,  Julia wasn't feeling very well.  She had a little virus and I just figured that it would pass in a couple of days.  It wasn't only that she wasn't feeling well physically, she began acting differently too.   She wouldn't eat the lunch that I would send to school, which was very much unlike her and she developed this cough that just wouldn't go away.  We started to get concerned when most of her symptoms went away yet her cough was still there.  We took her to her Pediatrician twice and she just assumed that it was allergies.  So we took her to an Allergy and Asthma Doctor and he confirmed that she had a little virus and that her cough might be related to asthma.  I started her on medication that the Dr. prescribed and I did see a little improvement but that cough was still there.   Strange thing was that she wouldn't cough at night, only during the day.    Her Pediatrician mentioned it might be a Psychogenic cough?  Her Allergist said it was because of her virus.  Who was I to believe?

During this time, she was extremely anxious and nervous.  She wouldn't even trust what I was feeding her was safe.  She began not eating as much and even started to lose weight.  This was the girl who had always eaten her food and usually asked for seconds.  I didn't know what to do, she had lost trust in the one person she always knew would keep her safe.  She even went as far as to think that she was allergic to black pepper because she felt that the peppercorns resembled peanuts, which I know sounds completely irrational!  After a week, we all got together as family and ate black pepper out of our hands as some form of ritual to show her that it was ok.  It worked, she ate the pepper.  We won that battle but we were not yet done. 

For a couple of days there, she would only eat toast or rice, she was afraid to eat anything else.  Every day that went on I would make sure that I would introduce the foods that she once loved one by one.  Slowly but surely she began to trust me again.  She began eating more and that comforted me knowing that she getting the nutrition that her  body needed.  The anxiety was still there though, she would become irrational about things even after reading labels of foods that she knew was safe she would say,"What if there's peanut in there , Mommy?  I don't want it!  I don't want to use my Epi-Pen!!" 

I was constantly trying to wrap my head around this, what could have brought this on?  What could have turned her into this scared little girl?  I asked her, "Honey, what happened?  What scared you, what was it?"  She said, "I think I started feeling scared when I saw you coming home from the pharmacy with my Epi-Pen.  I got scared that I might have to use it."  It broke my heart.

I had to constantly reassure her every day and remind her that we are a peanut free home and that she was safe.  From the minute she woke up till the minute she went to bed I was there for here.  There wasn't a minute where I wasn't thinking about how I could I help her.

Am I bad in saying that I hate it!  I hate that my daughter has food allergies and they have stripped her of her innocence.  I am angry that I see such a beautiful child who should be dancing, drawing, reading anything but worrying about food allergies.  I'm angry and tired.  Frankly, exhausted!

What did I do?  Did I tell her too much?  I don't mean to beat myself up but I'm her punching bag and I'm tired.  I'm really tired.  I want her to feel happy and confident and not worried about her food allergies.  I know that she is beautiful, smart and talented but all she sees is that she's the girl with milk, egg and peanut allergies. 

I'm  really sorry for my rant.   It's been almost a month since I've blogged and I feel that this is a form of therapy for me  and I haven't been here for awhile so excuse me.  I can't let her see me break down so maybe my fellow moms who know what I go through everyday can understand me.  I pray that we get to the bottom of this cough and that she goes back to that same old sweet little girl who loves to dance, draw, and play with her sister!  I pray that she understands that her fears are valid yet she can't let them rule her life.  She needs to accept that this is her life and it's not going to change.  I know that it's easier said than done but I pray that someday she'll look at her life and see that she's actually pretty lucky.
 
For now, I will sit here in silence with my tea and my thoughts.

9 comments:

  1. Ranting is absolutely allowed on your blog! This is your place to process and release those emotions, which are so strong when it involves protecting your daughter. Don't be too hard on yourself. It is clear that you care about her so very much.

    I promise you, it will get easier. I'm at peace with my allergies now that I'm a teenager. Right now you are sharing the responsibilty, but one day she'll be dealing with it on her own and these days will be distant memories.

    I'm thinking of you guys! Best wishes for both of you in the coming days.

    -Liz

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  2. Oh Liz, your words brought tears to my eyes. Thank You so much for your support. Seeing as though you clearly turned out to be such a strong and inspiring woman, I have a lot to look forward to. Thanks for reminding me that it gets easier. Best wishes for you as well.

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  3. I just want to wrap my arms around you with the biggest hug. I 100% understand how hard it is to have a child with MFA, and feeling of helplessness that there is nothing that you can to take this terrible disease and constant worry that is always on the background. Like you, there have been a number of times that I have had a good cry when my son is not around. It is so hard being the Mum and always having to be strong for your kids.
    Regarding the coughing, any chance that she is being exposed to something she is allergic to or mold/dust in the heating system at school, which is causing the coughing.
    HUGE HUGS to You & your child.

    Allergy Mum - http://allergymum.blogspot.com/

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  4. Thank You so much, for your support Allergy Mum. Now that I think of it, I think this cough did start when we started the heater in our home. Weird thing is that she only coughs during the day and the heater is also on during the evening as well. We also made sure to change the filters although, we live in an area where there is a lot of building of new homes. Maybe all the dust, who knows. So not sure. The dr. did want to start her on allergy shots to build an immunity to her mold/dust allergies. Hopefully that helps, I know that she isn't too excited about that. She's pretty scared of the shots. Thanks agaain for sharing and I can't tell you what it means to me to know that I'm not alone.

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  5. Perhaps her bedroom is cleaner (dust free) than the rest of the house. For us, my sons room is much cleaner because downstairs has carpet and many more things to keep dust free. His bedroom has no carpet (really easy to keep hardwood flooring clean & dust free), only a bed & a dresser (limited places for dust to collect) and I change his sheets every 5 days. My son started coughing at night two years ago in the winter, so we pulled up the carpet in his room & removed the toys and stuff to the family room and like magic he stopped coughing at night (except when he is sick). We are slowly replacing all the carpet in the house to hardwood. No chance that it is asthma developing?
    We live in an area of new construction as well & boy does it make it hard to keep the house & cars clean.
    Allergy Mum - http://allergymum.blogspot.com/

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  6. You know I just spoke to my husband about trying to replace our carpet to hardwood floors last night. I know that will help. I'm thinking that cleaning the air ducts will really help as well considering all of the new construction around here. Oh yes, she does get asthma along with her seasonal allergies which usually occur in the spring, she's never been like this in the winter. Maybe just change in climate~who knows? All I can do is try to eliminate the triggers one by one and see if that helps. We have her follow up this morning. Wish us luck;)

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  7. Thanks for being real. I'm a mom of a peanut/egg allergic 2 1/2 year old girl and although she's been diagnosed peanut and egg allergy since she was 9 months old we just started with the coughing (asthma attacks) in October (darn pumpkin patches). Home nebulizer and liquid steriods, so our pediatrician and allergist took it very seriously. We had our first asthma emergency room visit in December(now suspected 1st peanut episode) where we didn't realize we should use the epipen until hours later when the steroid asthma medications didn't help and she was screaming for "more medicine". Sarah breathes really shallow to try to avoid coughing, so they didn't realize how bad she was until they monitored her blood oxygen, but I knew her color wasn't right. Allergist told us not to be afraid to use the EPI-pen, but I feel the fear you speak of every day. Just using my blog right now to collect resources document dietary changes and supplements to improve her asthma as advised by a holistic nutritionist, but I'm feeling I'll have to find my voice. Thanks for making me feel that I'm not alone in this and I hope that your daugther finds relief. I hope I'm not out of place by saying that if my pediatrician suggested my child's coughing was all in her mind, I would find a new pediatrician. Trust your instincts. www.feedingsarah.blogspot.com

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  8. I'm so sorry to hear about everything going on. Having a child with multiple allergies is challenging, and scary. It's a good thing that your daughter has someone like you who loves her so much and is willing to fight for her. Don't give up!! (as if that's even an option)
    A friend of mine told me about a book recently written by a doctor in New York who has had great success in healing children with autism, adhd, allergies, and asthma. It's given me renewed hope and resolve. You can find it on Amazon. Healing the New Childhood Epidemics; Autism, ADHD, Asthma, and Allergies, The Ground-breaking program for the 4-A Disorders by Kenneth Bock, M.D. and Cameron Stauth. You can read a lot of it on Amazon, when I did I was hooked. Take care of yourself, and I agree with CA beach girl, think about getting a new doctor.

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  9. A member of our Food Allergy Group posted a link to your blog. You're spot on as to how all of us dealing with major, multiple and life threatening food allergies feel. It's hard. No doubt about it. Unless you're living it, it's hard to comprehend how difficult food allergies are to deal with on a day to day basis. You always have to be one step ahead. It's exhausting, but for us, what's the alternative?

    Keep up the good work!

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