Last Thursday night was NOT a good night for us. Jayson was up crying practically every hour of the night until 3 am, even when I tried putting him in bed with us (which I NEVER do, and was reminded why when I kept getting kicked and bashed in the head). Tylenol wasn't cutting the pain, which made me think teething wasn't the issue. Ibuprofen finally kept him quiet after 3 am, but of course I had to roll out of bed at 5:20 to be at work by 6:30 am. That was pretty awful too. Sam decided to take the day off and get Jayson into the pediatrician. I was suspicious he had picked up an ear infection from his almost three year old cousin, and indeed I was right. Bring on the antibiotics!
Antibiotics wouldn't be a problem for pretty much any other kid, but throw CSID in the mix and you've got an issue. Every children's antibiotic suspension in existance has sucrose in it. When Jayson went through his "serial ear infection because I'm in daycare" phase from about 6-12 months old, we had so many rounds of antibiotics, which brought on even worse diarrhea than usual and terrible diaper rash. I know antibiotics can do that to any kid, but this was exceptionally bad. I'm conviced that they were less effective too, because they ran through him with remarkable speed, and often the infection took multiple rounds of antibiotics to be cured.
The last time Jayson was on antibiotics was in February, not too long after his CSID diagnosis. After talking to one of the pediatric doctors at our practice, my local Smith's pharmacy told me the only thing we could do was: either have Jayson take the sugared up antibiotic and deal with it, or not treat for the potential sinus infection he had. After three days of trying to cope with the side effects of the antibiotics we decided it wasn't worth the hassle, and stopped giving them to him. Risky I know, but the darn thing turned out to be viral anyway (I'm still not really over it, but that's a different story). Luckily we saw a different doctor in the practice this time, and she prescribed adult capsules of amoxicillin that we could cut open and sprinkle in food/drink. We've been putting it in his milk sippy cups twice a day (he never fails to empty them), and thankfully he (and his body) can't tell the difference. Plus he's been a much happier kid and sleeps through the night again, phew :] One other option was to get antibiotic shots, but I thought it would kind of be a pain to have to visit the doctor three days in a row--but at least that would be a choice if necessary too.
On Saturday we went and visited the animal farm down in Thanksgiving Point--it was Sam's niece's second birthday, and my mother-in-law was also visiting from New Jersey. Jayson had a pretty good time, except he did NOT want to ride the little ponies at all. Max on the other hand wanted to eat and stay inside just about the entire 1 1/2 we were there. Apparently he is not a fan of farm life lol. They had a sign on the animal pens that said "Please do not feed me, I am on a special diet". I seriously wanted to get one for our house, because it sure reminds me of us!! Our only sad moment was when everyone else went to go get ice cream after the animal farm, and it was probably only sad for me. We didn't go because I figured it would make Jayson mad that he couldn't eat any when everyone else was--but at least he's not old enough yet to know what he missed out on, right?
Yesterday we started Max on Ross Carbohydrate Formula. It's soy based, so I'm hoping to see his lactose sensitivity issues fade away--he already seemed a bit less bloated this morning, which is good news. We are adding dextrose powder in for the carbohydrate, and it doesn't seem to give him any issues (I was only worried because it was some that Sam picked up from his work; he claimed it was 99.8 percent pure dextrose but I was still wary/cautious). Of course, Max's tummy will be the ultimate guide as to what is ok, but so far so good. It's not so great on the wallet however, and very inconvenient to run out of (I ordered it online though Abbott Nutritionals as a standing order). Incovenient and/or expensive really goes hand in hand with CSID though, so I shouldn't be surprised at all by this point.
I haven't forgotten what I said in my last post about writing my more encouraging thoughts on CSID, but I've got to save some fun for the rest of my shifts at work this week! I have one more swing shift to work tomorrow night, and I'm also here Saturday and Sunday, so bring on the blogging fun......
P.S. It's national lab week so give your favorite laboratorian a big hug and lots of free food ;)
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