Monday, June 22, 2009

An Unexpected Call

The phone rang today and caller I.D. said "Kaleida Health." Since we don't have any scheduled procedures at Buffalo Children's, I figured there must be a billing problem or something of that nature. I picked up the phone, and it was the speech language pathologist from the feeding clinic.

I had left her a message a couple of weeks ago stating the scintiscan was negative for reflux (per her request) and didn't really expect a call back.

"Well, have they done an upper GI? Did they start him on a trial of reflux meds anyway?"

Ummm... no! The ENT and pediatrician didn't really seem to want a follow up. The feeding clinic SLP told me that I needed to call the ENT now, because dysphagia in a 2 year old is not "normal." She is also calling our pediatrician with an urgent message that Nolan needs to have the cause of his swallowing issues figured out.

All righty then.

I figured it was just behavioral if the scintiscan was negative, but the SLP said that routinely refusing solids and spitting food out of the mouth is usually indicative of a medical issue. His diet is almost exclusively liquid now- he did have some oatmeal for breakfast (about 1/8 cup) and ate some yogurt for lunch (about 1/4 container). Other than that, it's just milk. If anything, his issue with solid food is getting worse, not better.

I called the ENT's office and made an appointment for July 1. If we can't find a medical cause for the refusal to eat solid foods, then we'll start attending the feeding clinic. Either way, we've got to get this kid eating. I might be able to fatten him up on Pediasure, but he will eventually need to eat regular food.


Herding Grasshoppers said...

Oh Leah, hang in there!

I hate to think there's something "wrong", but would rather know for sure and take care of it.

I'm way out on a limb here, but my friend's son had eating issues that were related to some kind of sensory disorder - resolved through "eating therapy".

Just a thought...


rouchi said...

All the best for the feeding programme!!

Julia said...

Well, that must be a bit disorienting (to get different vibes from different people), but I'm very glad someone is taking the lead on this. At least if it's a medical problem, then there should be a straightforward fix -- unlike behavioral! Good luck.

leah said...

It is disorienting! You don't want to be "crazy" and keep testing for something that isn't there, but then you don't want to be negligent and cause permanent health problems, either. Argh! Right now we're just giving him as many liquid foods and fruit as he'll eat, and breaking other things into little tiny pieces. We've discovered that if the food is bigger than about 1/4" in diameter, he won't swallow it and will spit it out. I've developed an amazing talent to turn chicken nuggets into a powder-like consistency, lol!


I know exactly what you mean! I feel like we keep testing and keep testing and I know we may never find an exact diagnosis, but I also know there is definitely something wrong. It's hard to know when to stop and just let things be. You just have to determine for yourself what is best for your son. I remember we had one doctor tell us he had nothing wrong with him and would "grow out of it." Of course, we went to someone else because we knew that wasn't right! As a parent, you're the only one who can know when enough is enough and when to keep going!

Anonymous said...

Good for the SLP! I think that the specialists who do these tests are usually only focused on things that they specialize in, so they're not very likely to recommend other tests if theirs come out clear. It's like you need a really good generalist to oversee everything and guide you through the myopic forest of specialists. At least, that's what we've experienced here. I remember Ethan was once in the hospital overnight (taken my paramedics) for apnea and when the neuroligists ruled out seizures they released him. I was like "So what is the next step?" and they simply said "it's probably due to refulx". So off we went with no further testing until the problem became so severe that we eventually wound up there again and found someone on the ball enough to order all the GI testing. Even then we weren't put on the proper meds until we wound up in another ER out of state! It's frustrating.

I'm pretty impressed with your SLP though! You'll get to the bottom of this Leah, hang in there!