No medication, no surgery (yet), and still really happy with Colin’s school

We had an appointment with Colin’s gastroenterologist last week. Colin has been on Reglan for a little over a year for delayed gastric emptying, which caused poor growth and weight gain. We tried taking him off of it about six months ago, but then he lost ten ounces in one month and had to go back on it.

Two months ago, he finally reached the 50th percentile for both height and weight (he weighs more than Zoe now!), so the doctor suggested we try weaning him off of it (we went cold-turkey before). We went from four doses a day, to three, to two, to one. The doctor was happy with his current stats, so now Colin is off it completely. And, we don’t even have to see him again unless we have concerns, so we get to drop a specialist. Woo hoo! We will see his nutritionist next month, and as long as he doesn’t lose any weight, we can stop seeing her, too.

Also, Colin’s developmental pediatrician had suggested we consider putting him on Adderall for hyperactivity. We believe he may need it later, but we’re really hesitant because he’s so young. He’s not even three yet! The doctor’s point, however, was that if he could concentrate better, he could get more out of his therapy at school LS. We decided to wait until we could talk to the clinical director and program manager at his school conference. They said they don’t think it’s necessary, so we’re not going to do it. Again, we realize he may need it later, but we feel more comfortable with the decision not to do it now that we have their input.

On the topic of his school, we are still really happy with the way things are going. He has especially been having difficulty there at lunch, so they have specific meal-time program goals. Colin’s First Steps’ occupational therapist went there last week during lunch for her session. At the other school, they were not open to outside therapists coming in at all, so the very fact that LS said, “Absolutely,” when we brought it up was great. Her session was at 11am. Though a session usually only lasts an hour, she was still there at 12:30pm when I came to pick him up. She had done the hour with him and then spent half an hour with his program manager. They wrote some of her ideas (like making sure his sensory needs are met before lunch) into his plan. It was really encouraging.

Yesterday we saw the ENT. Colin has had his tubes in his ears for two years. In most kids they would have fallen out by now, but of course Colin’s are still there. The good news is that one of them has finally started to budge and they both still look OK, so he feels comfortable waiting another six months. I was totally expecting him to say Colin needed surgery next week so I was pleasantly surprised, and I am thrilled at the prospect of avoiding the procedure altogether. Here’s hoping we find little turquoise tubes on his pillow some morning this summer.

Noah had an appointment at the ENT at the same time because he has been having fairly severe and frequent nose bleeds. The doctor didn’t see the need to cauterize any blood vessels right now and just gave us some gel to try in his nose at night, so good news on that front, too. (Of course, I had been telling him that he needed Vaseline or saline in his nose at night and he refused, but now that he’s heard the doctor say it, maybe he’ll be more cooperative.)

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4 thoughts on “No medication, no surgery (yet), and still really happy with Colin’s school

  1. Glad to hear Colin is making progress! Sounds like the school is helpful, too.
    Nosebleeds are kinda’ scary to me b/c I’ve never had one. Binh had one of his nostrils cauterized and it is sooo much better. It was a fairly easy procedure and he hasn’t had a nosebleed since!

  2. Such great news! I’m so glad that Colin won’t need Reglan anymore and that he’s gained weight!

    Also so glad the new school is working better. It’s important for OT’s to observe children in their school environment, I’m amazed the other school didn’t allow it.

    Hope things will continue on this path!

  3. I’d wait on the Adderall too. It was a huge appetite suppressant for my son & would maybe set Colin back in the gaining weight department.

    So happy you’ve found a program that is working for Colin.

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