If you would like to know the heartbreaking backstory of Lelu’s health problems in 2013 see Mom Guilt and Lelu’s Tilt. You should hear violins in the background as you read it. This post however, has more of a 3 Stooges soundtrack.
So I needed some spit and poop samples from my 8 yr old daughter. Torture #1 – the stool sample. Not the first time we’ve collected poop, but you never really get used to it. If your child has to do a stool collection for lab testing because they have GI problems (the most likely scenario, yes?) then stool collecting is a complicated process. The worst of my daughter’s symptoms have resolved (thanks to a gluten and soy free diet), but she still swings between constipation and diarrhea with no pattern. So we never know if she will need to run to the potty tearing off clothes as she goes or if she’ll need to set aside half an hour with a good book. My daughter is an independent, practical little person and deals with the situation, either way, by herself. But now we have to insert a collecting bowl, me and some gloves, and a “for g**sake, don’t let the pee go into the poop bucket!” rule into her routine. And that will throw a girl off. She had diarrhea for days before we got the test kit, so for days afterwards, there was no poop. The collection bucket sat on the potty ready to go and just got peed into repeatedly. “Don’t you know whether you have to pee or poop before you sit down?” I ask her. Nope. We finally got some poop but it was contaminated by pee. Wash the bucket and try again. And again. It took 4 days before we got a decent sample.
Now the spit collection, Torture #2, seems like it should at least be less messy. Maybe, but apparently my daughter cannot produce saliva when we need her to. Which, for the purposes of this test, were before breakfast, lunch, dinner and bedtime. She had to collect spit into this little plastic vial; small enough that you have to carefully dribble the spit in, but large enough that you know it’s going to take 15 minutes to fill. Initially, she did that awful hacking back in her throat, ready to spit some large lugie, like a distance spitting contest was underway. Obviously, she is not the princess/Barbie type. No, I tell her, just think of some tasty food, let the saliva collect in your mouth and then dribble it into the tube. Nothing. Nada. I call the nice testing people and they tell me to get dental wax for her to chew. Chewing will bring on the saliva, but the substance can’t be swallowed or flavored. So I search online for flavorless dental wax. Why online? Because I can’t go in stores! So we finally get that delivered and she tries it and says the texture freaks her out and she spits it right back out. We have been trying this for a week now. Yes, the same week as the poop sample but that finally got done days ago. So I hold her favorite food right in front of her but don’t let her eat it. That’s what we do four times that day till we get the spit collected. Let me clarify here, my daughter is the most resilient, cheerful practical person I know. During this whole process she never got upset; she tried her best at every step, knowing what was at stake and confident that we would figure it out somehow. I am not exaggerating when I say she is my hero and I want to be like her when I grow up.
The test we did was a DiagnosTechs GI panel and it revealed some yeast problems, elevated markers for intestinal inflammation, and low intestinal Secretory IgA, and a very high count of amoeba. A small percentage of Americans probably have some of this amoeba in them right now; but a child with a high count and active symptoms means an actual infection. All right people we’ve got a parasitic infection! Now we had to treat the problem. With medicine. The anti-parasitic Tinidazole, a medicine that apparently tastes so nasty the pharmacists will not, and cannot, give it to us in liquid or powder form. Torture #3-prescription medicine. She had to learn to swallow capsules. Fine, lots of 8 year olds learn to swallow capsules. Not ones with a weak tongue, who have been doing speech therapy for four years and still can’t make her tongue hold the correct “r” shape. So yes, the torture continued!
We started by having her use a mirror to see how big the opening at the back of her mouth is so she wouldn’t be scared of choking. Then we tried swallow decorating sprinkles. She couldn’t, and still can’t, make her tongue lay flat when she needs to, but you put that sprinkle far enough back and swallow enough water it will go down. Then we had some confidence going and we moved up to small candies. That didn’t go so well. Over the course of a week we went through multiple packages of those things. We tried it with complete focus and while we were distracted. With lots of water and a little water. Front of tongue and back of tongue. She had a 1 out of 5 success rate when I declared it enough, we had to move onto the real thing.
Now it gets really fun. Because the protocol for this drug is 150 mg twice a day on day 1, then day 8, then day 28. An adult usually takes two 75 mg capsules to get that dose but a child capsule holds about 20 mg. So she had to take 7 pills twice day. With a 1 out 5 success rate. The four times it doesn’t work, if you are trying with a tic tac, just means you get a tic tac flavor in your mouth as it starts to melt. When the medicine capsules start to disintegrate or crack from repeated swallowing attempts, then seriously foul tasting medicine gets in your mouth. And it makes you cry. And then your mom makes you try again with a new pill. And you have to keep doing it until you get 7 actually swallowed, even if it takes 45 minutes and your mouth tastes like something so awful you can’t describe it. Full on, silent tears streaming down her face, torture.
Fortunately, for me, Lelu has unprecedented recovery powers. Every time we got that final 7th pill down the hatch and inserted something delicious into her mouth, she switched to victory mode. There was a quick dance and then she would dash off to the bathroom shouting, “I’ve got to go poop out some dead amoeba!”
We are indulging in our victory now, resting on our laurels. I have not yet told her about the food intolerance results that I got back; it confirms she is reacting to a lot of her favorite foods. So we need to start a strict rotation diet if we want to reduce her intestinal inflammation enough for true healing to occur. The torture will continue and I am not sure the tone will be quite as light. But that is why Tilted Mom has to be about MCS, food allergies, and resilience.