Why staying educated on your child's health is important.

Long time, no blog…at least for me that’s how it feels. I’ve been super busy with school and the kids and doing some fun things with them.

Anyhow, this is a good and a bad blog entry.

We have a diagnosis. A tentative one, at least… One that is being 100% verified and retested in October, but still, a diagnosis.

After almost a full year of testing, blood draws, and pretty much torture… after a year and a half of constantly being sick… after a surgery to help her with ear infections and the speech delay that has accompanied them… we now know something.

Getting ready for her surgery

Chloe has a Selective IGA Deficiency.

My last entry, or one of the last ones I’ve done, I mentioned having Chloe at the Dr. again, which is not a big deal because she’s in and out of ERs and Dr. offices… However, during that visit, we did a blood draw. That blood draw was the missing puzzle piece, so to speak. Her IGA levels were in the toilet. The test does not give you a definitive number below 7, due to how hard it is to read, right? Well her levels were 5. Anything under 20 is a deficiency. Anything 7 or under is considered to be SIGAD. Basically, her first part of her immune system, the part that stops her from being sick, is pretty much non-existent. Hence why she has always been sick, and why she has had so many ear and respiratory infections, and her asthma and allergies, and even her tummy issues. It’s all linked to this immunodeficiency.

There is no real treatment.

There is no cure.

It is a forever diagnosis.

 

She cannot have blood transfusions unless it has been washed of its IGA. She will have to be monitored, because this deficiency can later lead into lupus and leukemia and a slew of other immunoglobulin and blood disorders. She needs a medical alert bracelet. She is higher risk of pneumonia, and her live-virus vaccines will make her sick, as her body attacks them full force.

But, it is manageable.

We can do what we have been doing to manage this. We were told that the fact that she has not had pneumonia at this point in her life yet is a testament to how on top of things we have been. She cannot have more live-virus vaccines, but her dead virus vaccines she is more than able to have, and are in fact her friend. She can still do fun things, she just needs to be sanitized some while she’s riding rides and things of that nature.

She can go to school later on in her life, but she will be sick more than other kids.

Yes, she has a harness, and before anyone asks, it's because she's still having
communication issues. She still holds hands, but it's an extra line
of defense. No, I didn't ask for your opinion on harnesses, thanks.

And I have to admit, while knowing it’s permanent with no real treatment scares and hurts me as a mother, at least we know what we’re dealing with. Her language skills are improving every day, and she’s hopefully going to catch up in her self-help skills soon.

And she is, despite the hell her body is going through, happy.

Kids like her are the ones I feel the worst for… the ones with an invisible illness. The ones who get written off by people who are not around her all the time, who are told , “it’s no big deal” or “you’ll get better!” . No… please don’t tell my child she will get better. Don’t tell her you will pray and God will heal her. Don’t tell her that if she prays hard enough or eats better that she will be better at some point… because that’s not how her illness works. And you are not the one who will deal with her disappointment when she is old enough to realize that she is not getting better no matter what she does.

This is not a face I like seeing people...
Don't make her make this face, please.

And to any mothers who think something is wrong with their child in their gut and is being written off… don’t let anyone write you off. Push the issue. Push the doctors. If I had listened to my first pediatrician, I would have no idea what’s wrong with my child right now. If I had listened to the first two immunologists, I wouldn’t have a diagnosis. All it took was one Immunoglobulin count to not be run… IGG, IGM, and IGE were all run and normal, so no one checked her IGA. That is actually common for her disorder, all other counts are usually normal except for that one, the IGA.

Oh and the kicker? It’s mostly considered a boy’s disorder. So while SIGAD is the more common of the immunodeficiencies, it is far rarer for girls to get it rather than boys. Note, I said rare. Not impossible. So while she is a rarity... it should not have been 100% overlooked like it was. No excuses. 

Anyhow, parents everywhere, if you ever see this post, what I want you to take away from it is not that you should not trust doctors… but that you should be diligent. You should do your own research and trust your gut if something feels truly off. You should take a very active role in your child’s health and well-being and not blindly follow the advice of physicians… remember, some physicians have not researched or looked up new studies in years. Before you do something that can make your child have later consequences, such as giving solids without a medical reason before 4-6 months… do your own research.

The phrase, “But my pedi said it’s ok!” should not be enough for you. You have all the information in the world at your fingertips, all you have to do is want to learn and be open to new info, and be open to making a decision that does not line up with your medical professional. You're the parent. It's your call.