Home 22q11.2 Tips & Advice on Infant Meds

Tips & Advice on Infant Meds

by Summerly Rowlands

While Izzy was hospitalized, all medicine was given to her through her NG & NJ tubes, her IV, and her PICC line. Once the talk started about discharge, we had to figure out a way to feed her the medicine orally. The nurses tried at first to syringe it straight into her mouth, but the process had to be done ever-so-slowly to make sure she was able to swallow it all and not throw it up. Unfortunately, her meds weren’t always timed up with feeds so we couldn’t just mix it in her bottle – well that, and we never knew how much bottle she was going to get through, so then we wouldn’t know if she actually got the medicine or not…

A photo after one of her daily dosing rounds of purple cap meds – this time through her feeding tube.

But then her father had a brilliant idea – and here’s the biggest tip we can give other parents when having to give an infant medicine – syringe it into the nipple of the bottle instead of the baby’s mouth, and then just let the baby drink the medicine out of that like they’re used to with their formula or milk. WALA! This honestly worked better than any other way we tried and even our nurse was impressed with Dad’s idea! 😆

Now this didn’t take away from the challenge of reflux because with multiple medicines, multiple times a day, there was still lots and lots of throwing up. And as tough as it was to watch her throw up her formula, throwing up medicine was quite possibly worse. We never knew how much medicine she was keeping down and how much was coming back up, and it was always a question of ‘should we dose again?’ While over-the-counter medications are one thing, prescription meds for her blood levels and seizures are another. They were all on a very strict schedule due to the severity of her needs.

After a few reflux rounds at home of guessing if she had kept enough medicine down or passed enough time for it to be in her system, we reached out to her endocrinologist asking about double dosing – if it’s necessary and/or if it’s safe. She told us if the reflux/throw-up happens 30 minutes or more AFTER giving the medicine, do NOT give again. However, if the reflux/throw-up happens within 30 minutes of giving the medicine, DO dose again. This information became extremely useful.

Another tidbit for anyone dealing with Phenobarbital for seizures, Lactulose for constipation, or Vitamin B6 for brain development – have some mercy on your child… Phenobarb has a VERY unpleasant taste, and both lactulose and B6 have a gag-worthy thickness. All necessary, but repulsive. Actually, when Izzy was taking the Vitamin B6, that medication was SO thick that it clogged her PICC line multiple times causing her to have to get new lines placed…

ALSO! I recently discovered this *secret* – it’s actually not a secret at all, but for some reason, people aren’t made aware – Infant’s Tylenol and Children’s Tylenol is the SAME!!! They package it differently and put ages on the boxes and bottles to make you think a certain way, BUT the concentration of the active ingredient, acetaminophen, in both the infant’s and the children’s is identical @ 160 mg per 5 mL. Literally the only difference is price (🤨) and the fact that the infant’s version comes with a dosing syringe and the children’s version comes with a plastic cup. Yes, babies under 2 will only need 1.25 mL (or however much your doctor recommends), but no need to pay the extra cost or worry if you only have one or the other on hand or can only find one or the other at the store. MINDBLOWN?! Yeah, I was to!

And for my last piece of advice – if you have to give an infant medicine, purchase a large bag of disposable syringes. You can find them on Amazon (here is the link for what we bought — https://www.amazon.com/BSTEAN-Syringe-Luer-Needle-Non-Sterile/dp/B07RPQCRHT/ref=pd_rhf_ee_s_rp_c_6/140-2429222-7930266?pd_rd_w=ClQDM&pf_rd_p=45475782-eccf-4008-8965-5a4bab0ca086&pf_rd_r=A2HFXKZ3W0EH7P0K01HA&pd_rd_r=0e5f4d56-1d5f-45f8-9b3f-bdc71cc8b342&pd_rd_wg=lIMLO&pd_rd_i=B07RPQCRHT&th=1). These were a lifesaver because the hospital only gave us so many and after a couple uses of one, the numbers and lines would wipe right off as I was cleaning them. The infant syringes are little, they only hold 1 mL, but that’s usually perfect for such a small human ♥

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