When your child is sick, who can you trust?

The easy answer seems to be, “a doctor”, right? But what if it’s not? Through Hollywood TV and movies, doctors are put in the light to be these sort of magical heroes that come in and save the day, curing the patients of the most impossible disease.

In real life, though, why does it seem that it is the parents who are doing the proactive diagnosing? It is also the parent that is often looked at and treated like they are incompetent of understanding human diseases and disorders. After all, did we graduate from medical school?

I guess you need a degree to diagnose, rather than simply using common sense.

Because of Kate, we are seeing regularly:
- Pediatrician
- Gastroenterologist
- Allergist
- Nutritionalist
- Geneticist
- Endocrinologist

And all these visits later, thousands of dollars spent in tests, procedures, and visits, and do you know what we’re told? “We just have to wait.”

Yes, you got that right. We just have to wait. It was the doctors that put the pressure on us that something was wrong and subjected Kate to punctures and prodding, and for what? To wait?

Also, every time I discuss FPIES with the doctors they are very insistent that because FPIES is so “rare” that they doubt that she has FPIES. They also seem to think that they can TEST for FPIES. Any FPIES family knows that there is no test for FPIES. The diagnosis is symptom based. Doctors are so insistent on finding answers through blood work and tests, that they refuse to look outside the box and simply ask the patient questions and listen.

My daughter has FPIES. There is no “if”, “ands” or “buts”. I know this, as does my husband. FPIES is not as rare as doctors are lead to believe and they really need to step up and put more research and education into the subject, themselves, before speaking and acting like they understand FPIES. It is apparent, through multiple visits, that they all seriously lack in FPIES education and understanding.

If I hadn’t done my own knowledge and research, I would have been bullied into giving my growth-stunted daughter cow’s milk formula. Knowing that cow’s milk is on the high list for FPIES failures, I knew that was not even an option for our family. They would have given me a prescription for an expensive elemental formula that still doesn’t guarantee safety from FPIES reactions. Plus, it’s damn expensive.

I listened to myself, and my own gut. I continued to 100% breastfeed my food allergic, non-growing daughter, feeling confidant in myself, and my supply that it was best for my daughter. The doctors wanted to blame breastfeeding on her failure to thrive but I knew differently. I knew it was something else.

And, you know what? It was not my breast milk at ALL.

My gut — a mixture of FPIES, genetics (short stature) and some issue with growth hormone. I knew this from the very start. Instead of listening to me, they suck me for every penny I have in order to end up at this same very diagnosis, with the final say, “We’ll just need to wait as she is too young to do anything with her growth hormone. Plus you’re short, your older daughter is short. It is possible that its partially genetic and her growth hormone messenger will turn on, on its own.”

Are you fucking kidding me? Seriously? No wonder doctors are rich. I know there are good doctors out there, but why am I so hard pressed to find any? Why must I diagnose my child myself, and then be treated like I am an idiot? Why are we paying doctors so much to sit back and take all the credit?

RAWR!!!!!!

Officially, there is something dysfunctional currently about the wiring in Kate’s body that sends signals from the growth hormone to the rest of the body. While it can suddenly just turn on, we’re not sure when. As currently has the “body” of a 12 month old (at 1.5 years) and looks very much like a baby, rather than a toddler, she has plenty of time to catch up physically. But the endocrinologist says that we shouldn’t and/or can’t start any sort of growth hormone therapy until she is older (2 or 3).

Until then we are recommended to introduce a lot of protein rich, high calorie foods into her diet to help trick the body into working properly. Granted this is difficult because she has FPIES, which is a Food Protein Intolerance. So I can’t just give her a bunch of high calorie, high protein foods and expect it to go smoothly. They can’t understand what the problem is, in just introducing foods.

How about, “It’s fucking scary if they fail a food..” They don’t quite get it.

We’re doing the best we can, and are growing more and more confidant with introducing foods at this point in time but it is still nerve wrecking. And any FPIES parent knows, that a single food trial can take weeks, or months, depending. Although Kate has recently passed quinoa, she is not a huge fan (although she loves the La Yapa Quinoa Puffs okay) so we are looking into other foods. Coconut is on our trial list this weekend to add into her foods. Thankfully with the Baby Brezza, adding and hiding the coconut oil will be a breeze. Plus the coconut oil opens up to that high calorie, good fats, that we need to help “turn on” Kate’s wiring.

But will the tests stop? They want her to get more blood work done every few months. The pressure to stop breastfeeding my child will more than likely not diminish but continue to increase as she grows older and past the normal weaning age of American children. (I’ll breastfeed my child until she’s grown up, if I have to, and if that means she is getting nutrition!) Look at me like I am a nut, if you want — but I prefer to see myself as a parent who is doing what I can to keep my child healthy. Breastfeeding was the best decision I have made for my child, thus far, and am glad that regardless of her health issues, that she is still getting nature’s most perfect food.

If you’re a parent of a child who is sick, I can sympathize with you. I know what its like to know something is wrong and people just do not understand. People do not understand the importance (and the horror) of a little teeny tiny crumb or the miraculous thrill of passing a safe food on such a tiny menu. People don’t understand how their thoughtless comments can hurt without intent, “She is so tiny!” But I do. I know what its like to go from doctor to doctor, specialist to specialist and walk out feeling financially and emotionally taken advantage of (and with no real answers to boot.)

Although my degree is just in education, and my experience of a mother is less than 4 years — the answer is simple. When my child is sick, who can I trust? A parent’s instinct; specifically my own and my husband’s. We know our child. We know when something isn’t right and we can take common sense and research and figure it out ourselves. It’s just a shame that we need a medical degree to be taken seriously.

The health system in America truly sucks.