Hi Robynne. I know it's been awhile, hope all is good with you & your family. Luke is still on honey, still sounds gurgly all the time. :( But doesn't sound wheezy so that's a good thing. He is still refusing most table foods but will eat his stage 3 most of the time. Both Dr. G & our ped think it's time to move towards private therapy instead of just having ECI do his developemental svcs. (He still only has 2 words in his vocabulary but is making more sounds). They are referring us to Our Children's House in Allen. Have you had any experience with them? I know you have had some with the one in Dallas. I'm wondering if it's time for a repeat swallow study. Since the flu, we have not been able to move him back to nectar so I'm wondering if maybe he's back to having the nasopharyngeal issues again as well which could possibly be causing his aversions & gagging. Any thoughts?

Linda

Hi Linda!

I have been thinking about sweet Luke and I am so glad to hear from you. He absolutely needs a repeat MBS study. I'm glad you took him in. Last time we talked, you thought it was a bad cold and we had talked about possible RSV or something else. Apparently the flu did him in. Did Luke stop eating the crackers too?
I agree with your pedi and Dr. G about private therapy. I do not know of any feeding specialists at Allen, but they may have speech therapists who address feeding issues. You have to do what is best for your family, and I know they are close to your home. Jen Meyer, SLP is no longer a professor at TWU and is doing private therapy. She is the best in my book. 214 - lets-eat.

How many months is Luke now? Are you seeing any food come out the nose? Does he sound "stuffy" or congested in the nose after eating? If he is still having nasopharyngeal reflux, I want to look at his palate formation. What meds is he on currently? And yes, nasopharyngeal can absolutely be affecting his gag and aversion, which is why he needs a repeat MBS. Write back!

Robynne

Luke is now 16 mo old
This is him Saturday
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His last checkup 2 weeks ago, he was in the 50th% in his weight!!! Wow, how far we have come! Only 25th in height but huge improvement over the 5th I'd say. He takes Prevacid (15mg 2x per day), Reglan (2.5cc 4xper day) Nasonex, Advair & Brovex for congestion. He constantly is snotty & congested. We have now added an immunologist to our list of dr.s. He had his pneumovax titers done & only made antiboties to 4 out of the 14 tested. We re-did his prevnar & go this week to have his titers re-done & one other test done as well. He still eats crackers, he will eat cherios & sometimes cereal bars. The daycare says there are days he eats his table foods just fine. I can get him to gnaw on chicken nuggests but he only really eats about 1-2. It just seems crazy to me that he'll eat the things he does but not other things. I got him to feed himselft diced peaches friday night, but nothing else since. I have kept him on a follow-up forumla to keep the nutrients in him, he drinks about 30 oz. per day with a nuby sippy cup. No bottles at all now.

My concern with the MBS is that it will go a badly as it did the last time & we will still have no concrete answers. It's hard enough to get him to put anything without barium in his mouth. But, I guess we won't know until we know. I will see Dr. G tomorrow as I am taking Emily in for a check-up so I'll bring it up with him which means we'll probably be seeing you soon.

We go for his evals on the 12th for PT & 13th for OT. Not sure what the PT is all about, doesn't the OT do the feeding & speech? I'm not experience with all of that, so I'm not sure. I talked to Dr. G today about a MBS & he said that they will want to do one there at Our Children's house. He said "While I know how good Robynne is, they will want to see for themselves" How can I let anyone but you do his MBS? :) Poor lil guy is sick today, I picked him up from daycare & he was asleep & running a temp. Guess we'll be heading to the ped in the morning.

Robynne, wasn't sure if you saw my last post or not....

Boo to Dr. G with the MBS study....lol! They better take good care of my Luke :)

Robynne