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Name:
Sue

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Southern New Jersey

I am a Mom to 2 amazing and fun daughters and wife to a great guy and a wonderful father!

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Kayla
Kayla, my oldest. She is 4 1/2 and is a sweet, loving and silly little girl. She took us 2 ½ years and 3 IVF’s to conceive. Kayla is allergic to dairy. We manage her allergy and work to balance her safety with giving her a normal childhood. Kayla loves to read books and play games - she amazes me every day.


Alysa
Alysa, my youngest. She is 3 years old and is a silly little spitfire. She’s our monkey and loves to climb on everything. She was a “natural” baby, but it was only b/c of my wonderful doctors that we were able to stop an impending miscarriage. Alysa suffers from Acid Reflux Disease and sleep apnea. She may be little, but she has a big personality. She adores her big sister and is so much fun to be around. She keeps me laughing every day.


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Thursday, April 19, 2007
Taking Deep Breaths
I apologize in advance if I end up on a tirade! But I need an outlet for my frustrations and the Bloggy world is perfect for it – especially with the Bloggy Food Allergy friends I have made.

Last night, I got home from work while the girls were finishing up dessert. Kayla was happily (and only in her undies) eating a soy ice cream pop. It’s vanilla soy ice cream covered in a dark chocolate coating. This is a perfectly safe food for her and she’s had it numerous times and has had them from the box this one came out of. So when J cleaned her up after the ice cream (she’s mostly naked b/c otherwise her clothes would be covered in chocolate), he tells me her tummy has broken out in hives. Right away this makes my stomach clench from anxiety and fear. With every reaction having the potential to be the one that affects her breathing, it’s very scary – and even when her breathing is unaffected, we know it possibly brings us one step closer to that time.

Anyway, so I then lay her down and poke and prod her all over to check her reaction and to see where else it’s effecting. This was only on her stomach. And they were not your typical hives. Her stomach had a very large red blotch with huge white raised welts. It’s more like, if it was actual hives, they are all so close together, it looks like one big raised welt. It was a pretty big area and she was scratching it quite a bit. I could tell it was a reaction to SOMETHING, but to what we don’t know.

So then began the quizzing of us. J – what did you eat all day or come in contact with – did you feed her anything new today? For me – I had dairy today a few times, but I know I washed my hands after each time, plus I always wash my hands b4 I leave work. Not to mention I did not touch her until after this reaction was seen. I also brought home some Bath & Body Works stuff that my boss had given me for my b-day – but she did not touch it – she only smelled the candle. I got my frame in the mail – she touched that – could it have had dairy on it from when it was made? I don’t know. It was not from eating, b/c there were no hives on her hands or face. This whole thing brought me to tears last night. How could she come in contact with dairy after a year with NO reaction? Even 1 year ago (this month), she had a mystery reaction – but classic hives on her face – that we could not pinpoint the how or where. And yes, it was at our house. Besides that reaction which again, was classic hives, she had only had 1 other accidental exposure and that was right after we found out about the allergy. We are VERY careful!!!

Anyway – we gave her Benadryl and it cleared up within 30 minutes. She was fine the rest of the night, went to bed and slept great. She got up at 6:45 this morning and I took her in to the bathroom to go potty. As she’s going, I see her scratching her thigh. Sure enough – the same yucky red, blotchy, big raised white welts covering her thigh and a little on her other. Oh no!!! Now I KNOW it’s not food. She then starts scratching her tummy. Yup – there too. And on her face, near her mouth and ear, on her arms. I stripped her down to her undies. The only thing that I can think of is our detergent. Monday I washed her clothes with a new bottle of detergent. Now it’s a new bottle, not a new brand for us. Monday morning with the sheets I finished up the bottle of Arm & Hammer Free & Clear. So with their clothes, I used Oxydel Free & Clear. I have used both brands multiple times. We have never stuck with just one brand, but we ONLY use the free and clear detergents. Could it be the detergent, even though we’ve used it on her clothes before? It’s the only recent “change”. So I made sure I got her underpants that were washed last week, not Monday. I let her go in those so I could monitor her. We gave her more Benadryl at 6:50am. For the next hour, her rash/hives/whatever continued to spread. Her chest, her back, her arms, her legs. She was very itchy. Finally at 7:50 I get a call from J – no more bumps!!! He washed all her clothes that I got from her drawers in a different detergent – again one we’ve used previously, but not what I used on Monday.

It’s been a scary morning – With an already food allergic child that has the potential to threaten the very life you treasure more than your own, it’s terrifying. I almost didn’t even come into work today. But I did and she’s ok now.

But…I decided to call her Allergist and talk to a nurse. I know it’s hard to pinpoint these things and with no reaction I saw no reason to bring her in. But when I asked to talk to a nurse the receptionist informs me that since she hasn’t been seen in 2 years, they sent her chart to some off-site storage office, so the nurse can’t help me. WHAT?!? Let me inform you that they saw her at 9 months of age – and THEY told me not to come back until she was 3 to be retested. Unless of course, she had any other issues. I’ve spoken to nurses b4 about her and the doctor. So now, when she’s having a reaction, I can’t talk to a nurse?!? I was very upset – trying not to cry from shear frustration and just being overall upset at the situation. I told her it was ridiculous that when my daughter is still a patient and due back in 4 months to be retested, that they got rid of her chart. She told me to bring her in. Um…what good will that do besides costing me $20 in copay plus the fees they get from my insurance company. I kept repeating – give me a nurse, give me a nurse… All I wanted was a bit of insight. I wanted them to tell me what they thought I should look for and to make sure I was doing everything I could to try and figure this mystery out and stop it. I still don’t feel it warrants an office visit. They will tell me they have no clue what’s causing it and send me on my way with my money in their pocket!

Not to mention the appointment is at 3:20 and how can I not go? So that means more time away from my job which I hate to do especially when I’m here as little as it is.

So I put a call in to her Ped, who unfortunately won’t get in until 1pm today. But, she is one of the doctors whose opinion I value. She may not have the answer, but she listens to me and never brushes me off. Until today I have been happy with Kayla’s allergist. Not anymore. Is it time to find a new one? Am I overreacting that it’s ridiculous that I can’t talk to a nurse about a reaction my daughter had this morning?!? What if we had to head to the ER over it? Would they have said too bad – her chart is off-site? I’m so angry and frustrated! I have to call back and beg to talk to a nurse – I just don’t trust myself to be “nice” right now. And please – it’s not like she has this thick chart there. She has a Level 3 Dairy Allergy – when exposed, she has a contact reaction and a GI reaction. Done! Period! There – I’ve updated the nurse on her allergy history! That wasn’t hard.

So I truly apologize for this long rant! Thanks for “listening”!

*Edited to add that I called back and was finally put through to a nurse. She still wants her seen b/c they can give her another stronger medication and maybe have some insight. Whatever! But...they wouldn't let me talk to a nurse w/o her chart, but the doctor will see her without a chart - AND prescribe her new medications w/o her chart! Yup, they won't have her chart this afternoon b/c the office where it is is closed today! That makes NO sense whatsoever. Time for a new allergist in my current opinion!!!*


posted at 9:05 AM  
  5 comments



5 Comments:
At 10:04 AM, Blogger Jennisa said...

URGH! So sorry! Don't you hate these stinkin' allergies? You are not over reacting at all...YOU are your child's only advocate, and YOU have to do whatever YOU need to do to make sure she is taken care of the way that YOU are comfortable with...I agree, time for a new allergist!

 
At 11:52 AM, Blogger ChupieandJ'smama said...

I 2nd the new allergist!! Jason goes every year for testing and yes, we are aware that he probably won't outgrow yet, but what is one prick with the needle each year to be seen and evaluated and get all my questions asked, and all are meds checked, etc etc etc. Why in the heck would they store her file? Ridiculous. I'm not home right now (at my moms) but I'll e-mail you later. I hope she's ok. Good luck with the appt. I'll be saying a prayer (as added insurance). Hugs to you and Kayla!!

 
At 2:14 PM, Blogger Jennisa said...

I got your last comment. Avery is allergic to milk, eggs, peanuts, and numerous animals and outside/mold items. She is exposed to the food items that she can not eat, but goes no where near food she's not familar with. She is VERY picky, and will not even put a food she is not familiar with near her. Weird foods like ice cream and mac and cheese are scary to her. So, we don't have reactions like you have. When she DID have a milk reaction, it was welts and inflamation in the areas she touched it. Once she used a chapstick that had some sort of milk product, and she got a tad red above the lip. This also happened when she had colored pop. Her reactions to animals and stuff is inflamation where the animal licks her, and a lot of scratches. Also some asthmatic issues which is helped with her inhaler. When an aniimal licks her,we have to wipe her with a diaper wipe so she doesn't get itchy or have a small reaction. We do have a steriod creame for bad outbreaks, but that hasn't happened in years. As far as preschool, next year will be her 1st year there. I am very worried, and that's why I waited till she will be 5. She needed to be old enough to understand that she can't have a food another child is having. She is old enough now, and is fine with it and could care less. Yes, the preschool teachers will know that she has an allergy, but does that mean they'll watch her as much as I do...NO, and that's the hard part...really hard. I will have to send her epi and her inhaler with her everywhere she goes IN CASE, and always be available at the drop of a hat IN CASE. Sucks, I know...Makes me want to throw up...

 
At 2:52 PM, Blogger Thea said...

I think it's definitely time for a new allergist. You should not have been treated that way, that's for sure!!

And if you start to look for a new allergist, you now have a question that you never would have thought to ask before: "What's your chart storage procedure?"

 
At 4:52 PM, Blogger Michelle said...

How scary for her to break out in hives and then not no what to attribute it to! Thank goodness she is doing ok now.

How frustrating about the allergist office too; why would they store a medical file after only 2 years - especially on a child who still has allergies? Strange!

 

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