Each time Sebastian and I leave the house, I do a quick check through my mental check list of medicines and supplements to make sure he’s taken them all. Then I run through another check list of the items I need to have with us in case we are out for a meal/medicine time. I am always worried I will forget one, which could be disastrous in the case of the seizure medications. Mental check lists help. I usually forget something else, less important, like my phone or driver’s license (luckily I have the paper copy in my car all the time). I know I am Super Mom, but I can’t remember it all. 😉
The photo above is everything that Sebastian takes EVERY MORNING. It’s a lot of stuff. Two seizure medications, two vitamin supplements, MCT oil for fats and seizures, fiber and probiotics for a healthy gut, and two reflux medicines. We’ve also added some new items to the list for weight gain and constipation (thanks to the seizure meds), like ground flax seed and wheat germ. He eats lots of avocado too. Healthy fats, we love them. He finished his Poly-Jule powder from Australia and now takes Dual-Cal, which in addition to being a carbohydrate powder has oils added in. And it’s working.
Sebastian went in for a check up last week with the neurologist to discuss a recent MRI and he was weighed beforehand. He now weighs one kilo and a bit more than he did in December when he lost weight from being sick. That’s about three pounds. We have a follow up with the nutritionist next week and I think his thick thighs and chubby tummy are going to wow them. I have no doubt that his weight then will show a total of two kilos more than the initial weight which got the team worried in the first place. Awesome.
Our initial visit to the nutritionist was frustrating. It’s always difficult to be shoved into a category of diagnosis rather than looking at the child as an individual, which I’ve found many do only after I insist on it. When the nutritionist decided how much activity he was doing and rated it without even asking me, that’s when I stepped in and spoke up. And yes, I will even say I reprimanded her. Then came the flooding apology with the condescending smile and of course the ‘You are your child’s advocate’ comment. Sebastian is a calm little guy. He likes to relax on my lap and take everything in. He’s not running around the room like other kids but he does get active during the day. Just eating uses up calories. Everything he does takes two to three times more energy than when a typical kid does the same things.
So comparing him to a kid that walks to the bus stop every day is not going to work. If and when Sebastian can walk to the bus stop, he will burn way more calories than I did walking to the bus stop, in the winter, every day, waiting in the snow storm for the bus to arrive… It was unfair of her to assume that he doesn’t do anything and after calling her out on that things moved forward a bit better. I suppose many of these experts speak to many parents that don’t know what to do, but my guess is they speak to plenty that do too.
I want to do whatever I can to make Sebastian’s life the best possible. I want to help him get chubby again and grow into a strong, big boy. Please, tell me how I can do that and if there is anything different that I can do that will get us there. But she couldn’t offer much more than telling me to go from 3 to 10 scoops of caloric powder a day. Because I already do everything else. We went slowly up to 10, because going that fast from one day to the next was tooo much. And now we are at a good place. And I love seeing Sebastian get chubbier every day.
We also recently visited with the gastro-pediatrician. She told us to wean him off the Zantac if possible because it was essentially doing the same thing the Prevacid does. We tried, but then he was waking several times in the night with painful reflux. She also added a different medicine to his list, one that can cause him to be lethargic and most likely won’t help much (according to her). She had this attitude, try it, why not? But for us adding a medicine to the mix and making sure it doesn’t interfere with his other meds is not such a simple thing. We tried a medicine in Egypt, called Motilium, and the side effects were lethargy and lack of interest so we stopped it. This medicine she mentioned is similar to Motilium (which can have negative long term cognitive effects) so we decided not to try it at this time as we just got Sebastian out of the lethargic slump caused by his seizure medication. And we love having our boy back.
And back he is. As parents you have to make big decisions for little people, all the time. It’s tough, but also, as parents, we are the experts too. Because we spend every moment with our child, or most moments. And as an informed parents, we read and we discuss and we contemplate and we research and it never ends. We do what we can. And I think we are doing pretty well.