New, scared and frustrated not to mention confused- long sorry

Posted on: Mon, 05/29/2006 - 5:37pm
milosmom's picture
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Joined: 05/30/2006 - 09:00

Hi
My 13 month old son Miles was just diagnosed with PA, TNA, EA. At the request of our ped. we took him to an allergist when he broke out in hives after eating a scrambled egg (prior to this he had eaten quiche, birthday cake and muffins without incident). He did a skin prick test and later confirmed the results with a blood test. When the nurse called to give me the blood test results, she said that the doctor felt confident he would outgrow these allergies.

Apparently he's a level 2 for peanuts and eggs, a 3 for cashews and pistachios, and between a 1-2 for the rest of nuts.

I can't really find much information on what these levels mean exactly, and I'm having a hard time grasping what this means.

I can't shake the feeling of impending doom. I am afraid of losing my son. Grocery shopping now seems like navigating a war zone and foods that I purchased prior to our knowledge of his allergy, like peanut butter now seems to be poison. Food is the enemy (which is really hard for my husband who is a big foodie.)

In the space of one week after finding out about his allergies, we had 3 incidents of people allowing their children to bring peanut and nut products into 'nut-free' nurseries at the two gyms I go to. I freaked out and in a panicky tone told the parents about what could happen to my son if he were to eat even a crumb, and they seemed to understand but who knows. I had the nursery staff wipe down all the surfaces and in one case (a nut bar) vaccum- I also spoke with the staff and they told me of it had never happened before and wouldn't again, but if I hadn't seen it these kids would be sitting there eating their snacks while my son crawled around putting anything in his little mouth. Ironically they seemed to think it was more 'offical' when they saw his medic alert bracelet. Even though I could have printed 'in case of abuction by aliens rub with monkey butts'- if it's printed on a bracelet by golly it's offical.

I just turned down a job because they couldn't offer me enough money to justify getting a nanny (she'd end up making more than me!) and I don't feel comfortable with daycare given my recent experience. I am taking freelance work primarily because I can work from home.

I am trying to write a letter to our church nursery because they told me yesterday they wouldn't administer the epi pen in the nursery if Miles has a reaction, but they would page me. I explained to them that a few seconds could be extremely critical if my little guy was reacting and they said it's policy due to liability. I am so frustrated by all of this I want to scream! When I'm not crying that is.

Posted on: Mon, 05/29/2006 - 5:41pm
milosmom's picture
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Joined: 05/30/2006 - 09:00

I forgot to add if any one has any advice for me I am eager to learn from people who have been down this path. Additionally if you have suggestions for the letter I am writing that would be great too.

Posted on: Mon, 05/29/2006 - 7:06pm
Arlene's picture
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Joined: 11/03/2004 - 09:00

Hiya...I am not replying to you with any great advice, i just wanted to welcome you to the board. These guys are great and know their stuff, i am sure someone with letter writing experiance will come along and help you out. It is very overwhelming at first, but beleive it or not it becomes second nature. I have been dealing with my sons nut allergies for about 2 years now, and although i still have the odd panic attack we just get on with it and try to make things as normal as possible. The church nursery sounds like they need a good kick up the bahooki. Good luck with them.

Posted on: Mon, 05/29/2006 - 11:24pm
Greenlady's picture
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Joined: 06/30/2004 - 09:00

Hello, and welcome! I know things are overwhelming right now, but you are doing all the right things to protect your child. If I am reading your post correctly, the food allergy diagnosis is still VERY recent, and you are still running on the "my child is in danger, I must act now!" adreniline rush.
Believe it or not, that rush does wear off, and the food allergy precautions will become as second nature and matter-of-fact as buckling him into his car seat.
My best advice on the letter is to write from your heart, and then put it aside for a few weeks. For your peace of mind, you can keep your son with you in church, or volunteer in the nursury, or observe the Sabbath at home for a couple of weeks.
Then re-read the letter, trying to imagine the reaction of church officials who may be concerned about liability and such when they read it. You will know your church best on whether they would respond better to an appeal to the heart or a an appeal to reason.
Unfortunately, some members at PA.com have found their churches to not be very helpful, but you can decide whether a battle is worth it after you have made your best case.
Hope this helps! Please feel free to keep asking questions.
P.S. I hope you don't mind me saying this, but when I read "Even though I could have printed 'in case of abuction by aliens rub with monkey butts'- if it's printed on a bracelet by golly it's offical." I almost fell out of my chair laughing. I think it is a very good sign for your family that even at your most stressed you are still keeping a sense of humor.

Posted on: Tue, 05/30/2006 - 12:32am
melissiabeth's picture
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Joined: 05/24/2006 - 09:00

I know exactly how you feel- I just found out Wednesday that my 18 month old daughter is allergic to peanuts- and am freaking out. Luckily she hasn't had any reaction yet- except 1 hive on 4 different occassions. My daughter goes to a babysitter and I am unsure how comfortable I am with this. I've explained everything but I feel like I don't want her around anyone but me. I wish I could just quit my job- but I can't and either can my husband. I am crying all the time it is causing problems with my husband and everyone thinks I'm overreacting. I went to a parade and they were throwing candy. I almost died. We have to ride on the bus to her babysitters every morning and there was a peanut between the seats. We moved and it was fine but still. I'm scared to death of peanut residue. Sorry to ramble. Everyone says it will get better and I'm sure they are right. You are not alone in being scared!
[This message has been edited by melissiabeth (edited May 30, 2006).]

Posted on: Tue, 05/30/2006 - 3:57am
milosmom's picture
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Joined: 05/30/2006 - 09:00

Thanks guys for the welcome. Yes the diagnosis is less than a month old. No Greenlady, I don't mind - it's always been my way of dealing with things- laugh if you can, cry if you must.
The advice about putting the letter aside for a week is very sound and I will do that. We actually just returned from the allergist and he said that they just need education esp. about the Good Samaratin (sp?) law, etc. and perhaps then they will change policy. Thanks again for the warm welcome!

Posted on: Tue, 05/30/2006 - 12:12pm
luvmyboys's picture
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Joined: 05/25/2006 - 09:00

You do need to make adjustments in your life and it is hard but it will happen with time. Put yourself in their shoes of those at the church...are these volunteers? I taught religious ed to 1st graders before ds's PA and I would have been taken aback had anyone given me the additional responsibility of worrying about a child's allergy and administering an epi-pen. I didn't sign on for that and would have been scared by the huge responsibility.
When ds did preschool religious ed, my husband sat outside the classroom with the epi-pen because we were not satisfied with the plan they were willing to put in place (ed director has epi-pen in office but she is not always in the office during class). We were more angry they were unwilling to eliminate unsafe foods from the classroom all together. I mean what child needs sweets at 9AM on Sunday for 1 hr anyhow? We pulled him out after that year and home schooled religious ed. It wasn't worth the battle with the church back then.
I agree with PP...put the letter aside for a week. Also try hard to cooperate with them and figure out a solution that works for everyone, especially if these are volunteers. If there is a no food policy they DEFINITELY can enforce that and they should.
Good Luck and Welcome, Luvmyboys

Posted on: Tue, 05/30/2006 - 12:17pm
McCobbre's picture
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Joined: 04/16/2005 - 09:00

Well, according to the ADA, daycare workers MUST administer the EpiPen. I'm not sure how this would relate to your church--whether the nursery workers are paid, if the church has to follow the ADA (with its number of employees).
Do a seach for the ADA--if you see my user name, I've posted a link and even the text to what the USDOJ has printed for Daycare and the ADA.
I have been lucky with my churches. Perhaps the church can supply any snack and they can run it by you first (regular Cheerios, Goldfish, etc.).
What worked for me is the term "radical inclusion" that Christ calls us to. It worked because it's true.
I was able to find a peanut free daycare when my DS was of that age. Children's Courtyard has gone peanut free if they're in your area. And it's possible to make a daycare peanut free (that's what happened with ours).
Good luck though. Welcome!

Posted on: Tue, 05/30/2006 - 2:39pm
milosmom's picture
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Joined: 05/30/2006 - 09:00

Thanks guys- I appreciate any and all information as we are so new to this! We have to go back on Thursday for a fresh skin test for some additional foods (eggplant, nutmeg and zuchinni) and I am feeling dread. So believe me melissiabeth I can relate to how you're feeling. I hope that this stage will pass as Greenlady assured us and we'll fall into a natural rhythm in our dealing with this. Right now I feel as though there is an allergy around every corner waiting to be exposed. I even dreamt that a my old college BF died from a peanut allergy!
Luvmyboys- it's an excellent point about putting myself in their shoes. While I am incredulous that anyone would NOT do something to help a child in this situation. I can understand how it's a daunting prospect and outside of what they signed on for when they volunteered. However, they make the volunteers (I am one once a month) go through background checks and other screening, I don't believe it's too difficult to add this to the training. I will check the ADA to see if church daycares fall under the provisions. I have to believe, if I can write a letter that is non combative, heartfelt and reasonable that they will change their policies. If not I'll have to key their cars (kidding).

Posted on: Mon, 05/29/2006 - 5:41pm
milosmom's picture
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Joined: 05/30/2006 - 09:00

I forgot to add if any one has any advice for me I am eager to learn from people who have been down this path. Additionally if you have suggestions for the letter I am writing that would be great too.

Posted on: Mon, 05/29/2006 - 7:06pm
Arlene's picture
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Joined: 11/03/2004 - 09:00

Hiya...I am not replying to you with any great advice, i just wanted to welcome you to the board. These guys are great and know their stuff, i am sure someone with letter writing experiance will come along and help you out. It is very overwhelming at first, but beleive it or not it becomes second nature. I have been dealing with my sons nut allergies for about 2 years now, and although i still have the odd panic attack we just get on with it and try to make things as normal as possible. The church nursery sounds like they need a good kick up the bahooki. Good luck with them.

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