How long does a diagnosis and treatment plan take? Questions and a bit of a vent.

[Wild Lupine]

Background: DS was diagnosed with a feeding delay 10 months ago, along with gross motor skill delays. Through OT and PT he has made incredible progress with his motor skills, but absolutely none with his feeding. He has graduated out of PT and his OT sees him weekly for feeding therapy. He can currently consume milk, formula, smooth yogurt, and juice (though he often coughs with the juice). Usually he refuses anything thick or with texture, but if any does get as far as his throat he chokes and vomits. Every single time.

He was referred to our state's bureau for special medical services about six months ago; since then he's seen a feeding specialist three times. The first was for an initial consultation, the second was a follow up a few months later (because no progress had been made on her initial recommendations), the third was for a swallow study his OT and I asked for. We know he has a high arched palate and that he aspirates thin liquids (we suspected that because of how often he gets pneumonia, but it was also very obviously visible on the swallow study). Otherwise, we have no idea why this is going on or how to help him. We haven't received the results of the swallow study yet.

His OT and I wish we heard more frequently from the feeding specialist. The OT - who is wonderful - needs some advice about how to proceed with him, and I wish DS could eat more than he did. Formula isn't cheap and as he gets older (he's 22 months) he's beginning to become aware of frustrated by his eating limitations.

Is it normal for it to take this long to get a workable treatment plan? Is it reasonable to expect a toddler with such a limited eating ability would get to see a specialist more often?

I know many of you are dealing with much more serious issues, but I am getting very frustrated, especially as so many of our meals involve DS vomiting or being distressed about not being able to eat.

[MotherWhimsey]

I don't know about the rest of it, but we know the result of the swallow study while we're in there doing it. The SLP that does it tells me what's going on each step of the way. My son had one day before yesterday at 8 AM and the report was in and the GI read it at our appt at 2:45.

[Wild Lupine]

Thanks, it helps to have a different situation to compare this to, and to know how quickly a turn around time with results could be. DS's swallow study was done Tuesday, no results or report yet.

[MotherWhimsey]

yeh, so they both had them on the same day. I knew how he did while he was still in radiology. Generally when they're aspirating, they give results quickly to prevent more aspiration.

[2boyzmama]

Has he seen any medical specialists? With those symptoms, it might be prudent to see: gastro, ENT, pulmonology, neurology, dev peds, and/or genetics. It definitely sounds like it's time to push for more answers, which might mean bringing some or all of those specialists on board.

[Wild Lupine]

He's seen an ENT who thinks his tonsils are enlarged to the point of needing removal; Part of the reason for the swallow study was to see if they are inhibiting swallowing.

I think our pediatrician hasn't referred us to anyone else because we haven't maxed out the services of the feeding specialist yet. He also has no other symptoms at this point, and fortunately is still healthy and gaining weight.

His feeding specialist is supposed to be very, very good, according to multiple sources, but for some reason is very slow responding to our son's case.

[homemademomma]

In my experience it is common to wait and wait and wait for a diagnosis and treatment plan. I learned the hard way that you have to be proactive, do your own research and push for further testing. The unfortunate side effect of this is that I now have little trust in doctors. Sorry to be all me me me in your thread. I am bitter!

[2boyzmama]

Originally Posted by homemademomma

I learned the hard way that you have to be proactive, do your own research and push for further testing. The unfortunate side effect of this is that I now have little trust in doctors.

YEP, to all that! It was me that finally diagnosed Connor. I took him to the geneticist, for the third time, and said "test him for 22q". They tried to say no, I said "it's my insurance, my copay, test him." It was positive.

I've often had to be the one following up on tests, the one asking about further tests or therapies, the one bringing in research, etc. No one will love your child like you do. Even the best meaning dr still has 100 other patients to think about, the unfortunate reality is they just don't have the hours to pour through the information looking for a missed detail that might be diagnostic. I spent dozens of hours (usually at night while holding my baby and just crying) searching the internet for answers for my kid.

[Wild Lupine]

Originally Posted by homemademomma

In my experience it is common to wait and wait and wait for a diagnosis and treatment plan. I learned the hard way that you have to be proactive, do your own research and push for further testing. The unfortunate side effect of this is that I now have little trust in doctors. Sorry to be all me me me in your thread. I am bitter!

Originally Posted by 2boyzmama

YEP, to all that! It was me that finally diagnosed Connor. I took him to the geneticist, for the third time, and said "test him for 22q". They tried to say no, I said "it's my insurance, my copay, test him." It was positive.

I've often had to be the one following up on tests, the one asking about further tests or therapies, the one bringing in research, etc.

Yup, Mamas, I've just gotten to this point. I had been researching, pushing for tests, etc..., but I now realize I'm going to have to be even more, much more proactive than I have been. Because my son is getting adequate nutrition (thank you hideously expensive toddler formula), I don't think he's been at the top of everyone's priority list. And I think it's time to give up on this feeding specialist. She might be the best in the state, but if DS can never see her, there's no point being on her caseload.

I just found a flier for a child developmental rehabilitation program affiliated with our local hospital. They offer feeding and swallowing therapy and my son's insurance will cover it. I'm amazed no one has mentioned this place to me, but I don't think it will take much arm twisting to get a referral (though I'm prepared to twist pretty hard).