Since coming back from another appointment with our DAN doctor, we have added on more supplements to Maya’s daily intake. As of today, there are 18 supplements, 3 types of creams, 1 bath and 1 injection.
The biggest challenge is our daily struggle to get all of these important and costly supplements into her. We mix liquids into juice, open up capsules and mix to her milk, grind up tablets and dissolve in a drink, we have pretend tea parties in the bathtub trying to encourage Maya to soak in the Epsom Salts bath for up to 30 minutes and we play silly games to overcome her sensory issues with us rubbing cream on her. We sometimes chase her around with her sippy cup to make sure she finishes the dosage. We’re starting to train her to drink from a straw now, it’s still hit or miss whether she’s in the mood to drink.
Adding supplements to her milk is probably not the most recommended method according to the experts, but the experts don’t have kids who are too young to swallow tablets or capsules, with hyper sensitivity to texture and taste, and Maya has a serious dislike of syringes. She catches a glimpse of a syringe and she runs screaming from the room.
As parents, we gotta do what we gotta do. Every time she doesn’t finish her juice with the vitamins in it, I have to force myself not to calculate how many ringgit worth of vitamins just went down the drain. Every time Maya spits out a milk that tastes funny because of a new supplement, I’m mentally calculating the cost of the expensive casein-free milk and the supplement that we had to mail order from the U.S at great expense.
We learn not to add probiotics to warm milk, because the heat will destroy the good cultures. We learnt not to mix the probiotics and enzymes into the same drink, lest the enzymes `eat’ the probiotics. We know not to mix supplements with medication. And we learn that some supplements are meant to be taken on an empty stomach and some after meals. I’ve created my on checklist & journal, with every supplement Maya successfully takes, I make a tick to it. We take note of the foods she eats that day, her bowel movements, her sleep, her behavior and any new language improvements.
When starting your child on supplements, always start with a low dosage, mix it with your child’s favorite drink. If you child rejects it, try again with a lower dose or changing it to a different drink. Maybe experiment if your child would welcome taking it by syringe or from a different colored cup. Every few days increase the amount till you get to the desired dosage. Always keep a journal to keep track of any behavioral changes or bad reactions, this way you will know which treatments work for you child, which made the greatest improvements, which didn’t do anything for him and which ones your child react badly to.
There’s nothing more satisfying at the end of the day and I review Maya’s daily journal and I see a tick in every column. If she ate well at every meal that day, had a good poop, slept well last night, played chasing games with her sister and said an 8 word sentence makes me feel like I’m on the right path. Knowing that it’s been a productive day makes me feel a step closer to Maya’s recovery. It’s a good day when all the columns are ticked.