Shaking my fist to the heavens tonight

[tiredmommy]

I've been very stressed all week since Duckie's possible shellfish allergic reaction. I have to wait six weeks from the exposure (last Tuesday) before taking her for a RAST test, then it's up to two weeks for the results to come in.

Eight weeks is an interminably long time time to wait to find out if my daughter has a potentially fatal food allergy.

Why her? Why must she have this burden? No wonder she's a difficult child; her health is just so fragile. I'm confused, angry and frightened for Duckie.

 

[klmno]

Geez....what did the doctors say you should do? Did they at least give you signs to watch for so you could rush her to the ER if need be? I don't blame you for being frustrated.

 

[tiredmommy]

Yes, my instructions are to continue to carry Benedryl & her Epipens: dose her, inject her & call 911.

One of the things that is hard for me is that her doctor had considered taking away the Epipen last year but decided to keep it only because no one knows for sure why she had such a bad (but not anaphylactic) reaction when she was four years old. The urgent care doctor that saw her that day felt she didn't have anaphylaxis only because she didn't also suffer from asthma. She was diagnosis'd with cough variant asthma last year.

I can't shake the feeling that mother nature is out to get my baby.

 

[smallworld]

TM, I'm sorry you're frightened.

I'm not trying to minimize your concerns, but lots and lots of people with severe food allergies go on to live very successful and fulfilling lives. Their allergies don't stop them in the slightest.

My father is one of them. He has a life-long severe shellfish allergy. He went on to become a very successful doctor prominent in his specialty. More important in my book, he's been a great husband to my mom and father to me and my two brothers. Right now he's nursing my mom back to health from her treatment for lung cancer.

I know you, and you're going to educate Duckie on how to take care of herself. Her allergies don't have to limit her potential in any way. Especially because she has you guiding her every step of the way.

Hang in there, TM.

 

[tiredmommy]

Thanks SW. I'm worried about what I can't control: cross-contamination at restaurants, accidental exposure at school or a friend's house. It's scary to think that a lack of vigilance could lead to a slip-up and possibly death. She's only eight and forgets everything... she left her Epipen & inhaler at a friend's house tonight.

 

[Fran]

I felt that way a couple of times. One when difficult child was at his worst. Why him?
Why not him? Should it be my neighbors kid because I'm nice and they are awful? It's not a reward or punishment.
When easy child had a seizure at school and ended up with brain surgery I thought it would crush me if he came out of it with cognitive problems. I didn't think I could go through another child with brain trouble. What was the alternative?
Not that it makes you feel better but I don't believe we get to choose our hurdles in life. We get to rise to the occasion or sink into pity for them and for ourselves. At least that how I look at it.
It's ok to feel sorry for the situation but tomorrow you will get up and move forward to giving her a full life and teaching her about obstacles and perserverance.
Fear is always with us for some reason but we have to hide it from them.
Parenting a unique child is not for wimps that's for sure.
I'm sorry you are feeling so frustrated.

 

[DazedandConfused]

It is so frightening when our child, or children, have life threatening health issues. After having such a difficult pregnancy and birth, daughter nearly died when she finally was born.

She recovered and I breathed a sigh of relief. Then at 13 months we got the cancer diagnoses and over two years of ardous chemotherapy and experimental treatment. Boy, I asked "Why her?" a lot. Then all the developmental delays, evaluations, meltdowns, and agency turn downs.

I still remember the devastation when I realized that Son was a difficult child. Please, not two of them!! It was like getting punched in the stomach. But once I caught my breath, I began to move forward to find ways to cope and help my kids.

I don't have food allergies, but I do have severe allergies and have been hospitalized as a result of them as a child. You will learn to cope and in turn teach Duckie to cope and live a full life. It's a bit overwhelming in the beginning.

(((hugs)))

 

[TerryJ2]

I'm so sorry TM. I'm just here to lend an ear and some support. You've gotten some great comments here.

 

[graceupongrace]

TM,

It's so hard when we see our kids struggle with health problems! We moms take so much of their pain upon ourselves. But Duckie sounds very bright, and she will learn to cope with her allergies (with help from her warrior mom!).

Does she see an allergist or is her pediatrician treating her? My easy child has allergies, and we have been so grateful to have found an excellent allergist. He is on top of all the latest developments in treating allergies and asthma, and he has made a big difference in easy child's quality of life.

Hugs and prayers.

 

[GoingNorth]

Short of the teppanyaki grill where I got sick from "fumes", in all honesty, avoiding shellfish hasn't been hard.

You need to carefully read menus and watch for any that say "seafood" on them. Some people can eat 'surimi' which is an imitation shellfish made of fin-fish. But, Surimi in some cases contains shellfish extracts and a coloring made from their shells.

I've never tried the stuff but it isn't worth the risk.

A few years ago manufacturs started putting up the same sorts of warnings that you see on packaging for nuts. So, if you buy a processed fish product like fish sticks, you might see a warning that says, "May have been products on the same equipment used to produce shellfish products"

The other one to watch is fried shellfish. ALWAYS ask if the fin-fish has been fried along with the shellfish or is fried seperately. Some companies have a policy about this and after a few high-profile lawsuits went over to frying the fish and shellfish seperately.

This is not only good legal sense as it saves on lawsuits, but it also gives you a higher-quality product as fish and shellfish require different timing and temps.

Truly, TM. This is not the end of the world. It is comparatively easy to avoid shellfish even under today's conditions.

In my experience, the worst is in chain "bar and grill" type restaurants like Applebee's and Ruby Tuesday's where an awful lot of the fish and chicken dishes are garnished with seafood sauces.

One other thing. Salad bars that have shellfish on them. If the serving utensils are not somehow secured to each container, you don't get the salad.

It is very easy for the utensil used to dish out the ham to find its way into the shrimp and then back out.

They are bad news for anyone with severe food allergies.

It's all manageable, though it is a PITA.

 

[slsh]

TM - it never occurred to me that motherhood would involve so much fear. Sometimes almost paralyzing fear. You have your basic stuff (stranger danger, crossing streets, etc.) but then when you have children with special needs, it just multiplies exponentially. I'm envious of parents who have the luxury of not being aware of the dangers (and then I wonder if I'm just nuts for being so hyperaware).

I'm never more than 10 feet away from Boo, a phone, an oxygen tank, and Diastat. I can tell you exactly where I am on a freeway at any moment, in case I have to pull over and call 911. In every single setting, I have a plan for where I'll move him if he starts to seize. It's unconscious on my part now, second nature. I cannot control his epilepsy, but I absolutely can control my preparedness - it's the best I can do.

I think a little fist shaking is more than appropriate. It's not fair. Enough is more than enough already.

You know that, after the initial shock of terror over what you cannot control, you will make the accommodations you have to make, educate yourself and Duckie and those around her, and get on with it. It's not easy at first, and sometimes I thought the fear would completely overwhelm me, but it doesn't. We somehow learn to not only manage the issues but we also learn how to do it so that they have the least possible impact on our kids' (and our) lives.

I'm shaking my fist on your and Duckie's behalf as well. A gentle hug to you.

 

[tiredmommy]

Fran- I certainly don't want another to be sick... I want Duckie to be well. I want her to know what it feels like to be healthy and a normal child. She's never had that. She's embarrassed about her allergies and asthma because she doesn't want to stand out from the crowd that way.

D&C- I had been breathing a sigh of relief mostly too. She's been doing better overall since she was diagnosis'd & has been getting treated for her asthma. Her allergies were improving (so I thought). Her ODD symptoms had virtually melted away. Everything was going to be okay... I was allowing myself to be hopeful.

Terry- Thanks for the support; I truly appreciate it.

Grace- Duckie sees an allergist, he's also an immunologist. He's really done a great job with her; we've seen a lot of improvement in her quality of life.

GN- I know all about labels from when Duckie was on her rotation diet. It's not ME I'm horribly afraid of messing up... it's a friend's parent taking them to lunch or a server being clueless about their food prep. It's the unknown that's gets to me.

Sue... I do that with the highway markers too. I also run a checklist in my head. This level of hyper-vigilance is exhausting.

 

[timer lady]

TM, a lot of this just bites! Yet we can't get around it ~ we become conditioned to many things parents of healthy children needn't be.

Saying that, Duckie is a delightful young lady & can & will grow up to know her limitations. And she can have a life full of joy & wonder. You & husband can give her a healthy balance between her issues & her life outside of those issues.

As parents, it's what we do - no matter the health issue.

 

[totoro]

Some days it is OK to just be scared for our little ones and to feel bad for the hurdles they have to continually leap over, with extra difficulty.
And it is OK for you to just get worn out by it all.
You get that feeling of "things are going so well" then this hits you. Or it is something else, always something else.

My Father, the evil one, has a life threatening disease that is a form of Leukemia, it causes severe allergic reactions because it is in his blood stream and affects his histamines. He carries an epi-pen.

But he is one of those that has been rushed to the ER and almost died so many times. He just laughs about it and could care less.

Just goes to show you that even some one can be very careless about it and some how manage to keep on making it through.

Hang in there. Ducky will be better than my Dad and cuter.

 

[Fran]

TM, I know you don't wish any other child to be sick. I was sharing my thinking when I asked myself "why my difficult child?". Why couldn't he just be able to do one thing his peers could do. There isn't any rhyme or reason. It's hard to believe it's a random quirk of genes.

 

[house of cards]

I'm sorry you have more to deal with. I hate food allergies. My Angel is allergic to corn...it is in everything. It has caused her to have trouble breathing, get a rash, and vomit. She is also very allergic to cats.

In my house I deal with mood disorder, Fetal Alcohol Effects (FAE), ADHD, some spectrumish stuff, asthma and the food allergies. I hate the food allergies and the asthma that results the most, and my little ones are only 4 and under my watchful eye.

When the behavioral stuff is going on, short of suicide talk, I can feel angry or frustrated, or a whole host of emotions, but when it envolves breathing...there is only one emotion...fear.

But allergic response is on a range like so much else and just because she tests positive doesn't mean it would be a strong reaction. I've never used the epi pens we have...I've often used the benadryl along with asthma treatments. My oldest son married a girl that started having bad allergic reactions as a teen that were constantly changing on her. She has used an epi pen several times, my son even injected her once. She is in graduate school and having a wonderful life. And her allergies seem to be settling down, so just because Duckie has this now, doesn't mean she always will.

 

[Wiped Out]

TM-Just sending a supportive hug your way. I understand how you feel.

 

[tiredmommy]

Linda- We seem to be tested by fire, don't we? Nothing is ever simple.

Fran- I know... I can't help wonder what went wrong. Was it random or could it have been avoided? What makes Duckie so vulnerable? And will she make it? It's stuff like this that hammers home the notion that it doesn't matter how much you love someone, they still could be taken away from us in an instant. It's much easier to accept my own mortality than that of my child.

HOC- I agree, breathing isn't optional. The doctor thinks that, if this was an allergic reaction, that it is getting worse. This is because she's had a simple tummy ache after eating shrimp and also had a tummy ache with-vomiting within the last several months. Her throat hurt the other day; and that could point to progression. And unfortunately, shellfish allergy is usually lifelong.

Sharon- Thanks so much.. I appreciate the hug and understanding.

 

[GoingNorth]

TM, I hope you didn't think I was trying to minimize your concerns. This sort of allergy is SCARY and you are right to be very concerned.

I was trying to point out that it is easier to avoid shellfish than to avoid peanuts and grain/dairy products.

What I hadn't taken into account is that I was 13 when I had my reaction. I went out to dinner with a friend's family and they got a "platter" at Red Lobster. It had shrimp on it and I'd never tried them being as shellfish wasn't eaten in my home.

Being curious, I ate one and my lips and tongue started itching. Be aware also that back then shellfish was very expensive and not the sort of thing that people regularly cooked at home.

A couple of years later I tried clams because they are a completely different animal than the arthropods. Those made me sick as well.

I was old enough to go back to and understand this in terms of the Kosher dietary laws (only fish with both fins and scales can be eaten) so it was pretty easy for me to ask if the "fish" had fins or a shell.

Other posters are correct in that shellfish allergy isn't something you "grow out of".

However,while anaphylactic reactions like I get may be associated with allergic asthma, it is quite possible to have these sorts of reactions without having asthma (or eczema)

 

[tiredmommy]

Thanks, GN. It's like playing odds with allergic disease and asthma. Duckie should most likely not, by the odds get hives because she's never had eczema. Never. But she gets hives. Hives and urticaria point to a slight risk of anaphylaxsis. Hives, urticaria and asthma added to a potent food allergy raises the risk exponentially. She had grown out of her food allergies (though she never tested positive for peanuts and was only mildly sensitive to shellfish). Ironically, it's her dust mite allergy that may have predisposed her to shellfish because they have similar proteins that illicit the allerdic reaction.

I'm rambling at this point, it's been a very long week.