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The 7 Things I Deal With Everyday With My Immune Deficient Daughter

My daughter is 22 months old, and she is not your typical child. She was born missing one part of her immune system… she makes no IGA. IGA is Immunoglobulin A, and is an antibody that plays a critical role in mucosal immunity. It is the part of your immune system that keeps you from getting sick. IGA deficiency is the most common immune deficiency, but is rare in girls, as generally speaking it is a boys’ disorder.

She has a slew of potential problems that come from this deficiency… she cannot have blood transfusions if she gets into an accident unless it has been washed of its IGA, for example. She can’t go to daycare, because she remains constantly sick if she does. (We tried that around 8 months old… it went very poorly.)

But the worst part of it is the day to day struggles we deal with… whether it’s internal, such as emotional, or some kind of outward, physical issue such as money, the struggle is definitely real when it comes to having an immune deficient child. There are so many things we have to consider, that we hear daily, that it begins to make your head spin.

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8 Exposure to illness

It should come as no shock that the biggest obstacle we have every day comes from other people in the form of germs, viruses, and bacteria. Unfortunately, we cannot live in a cute little bubble like Bubble Boy. We have errands to run, chores to do, and things to see. So, we explore the world daily, trying to avoid the germy enemies as much as possible thanks to hand sanitizer by the truckload. 

But a cold for you or me, can mean an ER trip and heavy duty antibiotics for my toddler. It’s part of the struggle… we risk getting exposed to everything out there in exchange for groceries, pizza, or keeping the lights on.

Oh and don’t even get me started on sanitizing… we clean constantly, with bleach and water, with antibacterial soaps, and it’s still not enough. My not even 2 year old child is adept at hand washing and sanitizing, since it's the basic and best way to prevent colds and viruses.It’s never enough to keep up with it. And trying to keep a house 100% clean and germ free with a 4 year old and an almost 2 year old is close to impossible, I will swear on that in open court. 

7 You’re Overreacting!!

Gee, thanks so much for that! I’ll bet you were top of your class at Google U! Can I see your degree?! Seriously though, until you live the life, you can’t make any real judgments. It sounds like paranoia, but my kid has no defense against your runny nose or cough. If you sneeze in the same room, I’m dealing with her having it 3 times worse than you had it in t-minus 12 hours or less. It’s not the life we wanted, but it’s the life we were dealt. So, in true fashion, we’re dealing.

Not all kids who have this deficiency get sick like my girl does, but for those that do, the illnesses can be severe and constant. If I ask you not to touch my toddler because I just watched you use your palm of your hand as a snot rag, or if I pull her away from your spotty, chicken pox infected kid, it’s not because we’re overreacting, it’s because her getting sick in any way can have serious repercussions. But, you say…

6 I’ve Heard ______ Can Work for That, Have You Tried It?

No, and while I appreciate the thought, we won’t be trying it. Why? Because her Immunologist is more prepped to handle her care than someone we just met who is asking why I use so much hand sanitizer and giving me looks like I’m some Danny Tanner neat freak. (It’s a Full House joke, for those of you who had that go over your heads.)

The herbal remedy of the week is not going to work for us, nor is that snippet you heard on the Nightly News about immune systems and kids and some new research. We've even catered her diet to add Vitamin D, Zinc, and other immune boosting vitamins and minerals. And yes, we have tried going organic, using over the counter vitamins tailored for kids’ immune systems, changing her diet to remove gluten, changing soaps… you name it, if it’s remotely normal, we’ve tried it. Oh, wait, what’s that?

5 She Looks Completely Normal Though!

Yes, we know, that’s because she is normal, aside from that one hiccup and anything associated with it. Immune deficiency doesn’t show itself like other problems would. You’re looking like you expect her to have a physical deformity to be considered ill. She also has high functioning autism, but you can’t even tell that by looking. 

It’s not until she tries to speak, or she tantrums for nothing, that you can tell something is wrong… at which time, generally speaking of course, you will give us a nasty look and think, ‘Man those people need to do something about that kid…’ We know how it goes, it used to be us. And we can admit that.

What she has is called an invisible illness, and millions of people suffer from these every day. Kids like her fight invisible illnesses every single day… and we are their backbone. We make their life as normal as humanly possible, working around nebulizer treatments, trips to specialists, blood draws and countless needles, and more. And we have to work together to teach others and help them understand what these people go through every day.

4 It’s Hard to Watch…

You feel like you’re in a movie half the time. It’s surreal, especially when you get that call with a diagnosis… “We have her blood test results back… it is a severe IGA deficiency. Her levels in her blood and saliva all came back untraceable, meaning there wasn’t enough if any to show up on a test. There’s nothing we can do for it but manage it, there is no treatment.” You hear that, and your world shatters.

It’s hard to hold her down for the needles and bloodwork sometimes 3 or 4 times a month… It’s hard to see how pale she is because we can’t go to parks without her getting sick and being stuck in bed for weeks at a time recovering. It’s hard to see her falling behind in other areas because she’s always sick, and to see her relying on a nebulizer to get needed meds. It’s all hard.

That said, you still have to try and talk to your child, find out how they are feeling, and relate to them. You don't think your kid can understand or tell you at a young age, but believe me... they can, and they will find a way. You obviously don’t go into this thinking you’re going to be dealing with a sick child… it just happens, and you have to make things work.

3 Monetarily Speaking, It Can Drain You

I am a full time college student, who has limited daycare resources, and my hubby works full time. We have a ton of bills, and get very little help from anyone. I’ve been told to start a Go Fund Me, to ask for assistance, but we aren’t like that… this is our problem. She’s our wiggle butt, we’ll take care of her. But I’m not going to lie, it can kill your bank account.

The long drives out of town to the specialists at the children’s hospital, the many trips to the doctor for sick visits and prescriptions, the healthy food, missed days at work, childcare for her sister when she's not in school, it all adds up. And we were, like so many others, totally unprepared for the financial burdens.

Our Christmas this year is actually going to be minimalist, because we just can’t afford much more than what we already bought. And that really stinks, because we feel like we’re letting both of our girls down because we just can’t do as much as some other families can. We save up, little by little, to do something special every spring, and we make sure all of our bills are paid on time and in full. But the financial struggle can be too much at times.

2 Internal Guilt

And every single day, it all feels like your fault. There’s no known cause for her deficiency, it’s a luck of the draw kind of thing, but I fear every single day that if we have more children, that we will pass it to them, and the cycle will begin anew. This is typical for parents and family of chronically sick children, but it makes it no easier. 

I feel like I somehow did this, that I did something wrong while pregnant with her, and while I know I shouldn’t, I can’t help it. I feel like I genetically let my baby down. And that is something I struggle with every single day.

I fight the urge to go cry when I see her wheezing at nap time, when I have to sneak her inhaler to her face to give her a puff of much needed albuterol. I take deep breaths when she has a meltdown over nothing, or when she’s inconsolable for hours and hours and is screaming like a newborn in my ear while we sit in the ER.

I keep watch like a hawk for new symptoms, because kids with her problems can develop other autoimmune diseases later on. But she has taught me infinite patience and shown me that working with children like her is what I want to do for the rest of my life.

My daughter has inspired me to go beyond what I initially wanted to do, and to become a teacher… specifically, I want to teach special education preschool or kindergarten. I want to give kids like her their best chance at life. And every day, she shows me the leaps and bounds she takes to go above and beyond what they think she is capable of. She fights daily to be independent, to be her own girl and to be tough. She works to catch up in her speech delays and other cognitive delays.

But in the end, she is perfect to us, and we wouldn’t trade her for anything. One day, hopefully, we will have a treatment for IGA deficiency just like we have treatments for the other immunoglobulin deficiencies, but until then, we will keep working hard to manage the symptoms and other problems associated with her deficiency to the best of our ability. 

1 She Is My Inspiration

My daughter has inspired me to go beyond what I initially wanted to do, and to become a teacher… specifically, I want to teach special education preschool or kindergarten. I want to give kids like her their best chance at life. And every day, she shows me the leaps and bounds she takes to go above and beyond what they think she is capable of. She fights daily to be independent, to be her own girl and to be tough. She works to catch up in her speech delays and other cognitive delays.

But in the end, she is perfect to us, and we wouldn’t trade her for anything. One day, hopefully, we will have a treatment for IGA deficiency just like we have treatments for the other immunoglobulin deficiencies, but until then, we will keep working hard to manage the symptoms and other problems associated with her deficiency to the best of our ability. 

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