J has a sensitive gag reflex and by sensitive I mean he can look at something that is unpleasant to him and throw up. He throws up at least 3-4 times a month between home and school. These incidences are generally not even illness related. Forget any food he doesn’t like or something that is texturally off putting. I never knew someone could be so sensitive. I used to make him try things but it’s not worth the stress for himself or myself and the clean up. To this point I cannot get meds into my son. Not orally. He sees a syringe, he gags. He sees a pill, he gags. For a while I was able to hide meds in squeeze pouches but he’s since gotten wise to that and has fazed them out. It has now come down to a Tylenol suppository only when necessary and a penicillin shot. I need med patches. Something I can stick in the middle of his back that releases the meds for me. They don’t exist for basic meds but I can dream. I would rather stab him with a needle than hold him down and force feed him anything that he will just throw up within 5 minutes.
J drinks nothing but water. I mean nothing. No milk. No juice. Just water. He used to drink milk, never juice. He sued to be more adventurous with food and eat whatever I put in front of him. He’s no longer that adventurous. He was my kid who would eat an entire box of mac and cheese, he now won’t touch pasta. I realize that he eats more than some others with autism. I am by no means expressing that I have it worse, because I know I don’t. He will eat hot dogs, hamburgers, sometimes chicken nuggets, he does love eggs and breakfast sausage and he loves peanut butter. These are the only proteins that he will eat. I make a lot of redundant foods for him.
His lunches for school are the same every week. They consist of microwaveable cheeseburgers, ham and cheese hot pocket ( the only way he’ll eat ham), pepperoni and cheese hot pocket, and chef boyardee ravioli. He gets to choose between goldfish crackers and veggie chips (a creative way I’ve found to get him to eat some veggies), and Quaker oat granola bars in chocolate chip and peanut butter. His lunch never changes and he eats everything in it. He loves crackers and chips. French fries are his favorite. I have since discovered a brand that makes these things called veggie fries. One is a kale and potato fry and the other a broccoli potato fry. These have by far been the most successful avenue of veggies I have found. He will eat Campbell’s veggie soup, the one with the alphabet pasta. It has veggies in it so it’s something. Fruit is still an issue. He’ll eat certain dry cereals. We eat a lot of cheerios. He loves toast. In fact the weirdest thing is he likes a 15 grain wheat toast. It’s his favorite. He used to eat mashed potatoes but has since given those up. That was the last of the super soft foods. I have recently stumbled upon a multivitamin that is powdered and has no taste. This has been incredibly successful and I put it on his toast every morning under the butter.
I’m lucky J doesn’t need daily meds. For a while his neurologist was prescribing iron and then gabapentin. We were trying to treat what we think is restless leg. It’s so hard with him because we’re just guessing half the time. Initially I could get the iron into a squeeze pouch and he would just suck it down but as he had stopped eating those, that avenue has closed. Not to mention that was pretty much my main source of fruits and veggies for him. We never got anywhere with gabapentin. He could smell it and would gag. Tylenol was just as hard. J does not not like sweet things in general let alone sticky sweet meds. Suppositories have been a life saver when he gets a fever, which thank god isn’t often, but not the best solution. At some point that will cease to be a choice. We’ve discovered after our last failed attempt with oral antibiotics that he has to get a penicillin shot if he’s sick. A 10 day dose of two syringes of amoxicillin is not an option.
A takes meds like a champ. She’s my one kid who doesn’t need them. She also eats like a champ. She loves food. She drinks milk, and juice and water. She’s easy when it comes to food.
I’m not sure what it’s gonna look like for E. I’m in Facebook groups and have seen pictures of the meds that have to be taken to make things just a bit better. I don’t know if she’ll be more like A or J when it comes to taking them. Right now as a baby she begrudgingly takes what I shove in her mouth, but I know that won’t last. I hope that she goes the path of her sister because I know that she will have daily meds at some point. So far in her first 7 weeks I am just having to put some salt in her mouth. I’m very lucky because I know that some people have struggled from the beginning with their kids cf disease. The reason for the salt is that cf people cannot retain salt and salt is what you need to keep the channels in your cells open. Salt is very important. Her diet will be very different from the others.