Feeding/Speech therapy questions

[Lindsay1234]

So for some reason, dd2 (15 month old 100% tube fed) hasnt been approved for feeding/speech therapy. Her dx is Dysphagia, which isnt considered a physical dx, but a neuro one (I can believe that actually). But because there is no physical problem with her mouth/throat, its not covered by ins. Its not even covered by the supp ins that pays for ALL her feeding supplies every month OR the emergency fund the hospital has.

Heres the thing, I wouldnt mind paying out of pocket to get her therapy but I cant find ANY info about paying privately, its all billed to ins. Im going to make some calls tomorrow but I just want a heads up so I dont pass out when they tell me the prices! There are several Speech/PT/OT gyms in my area, anyone been to something like that?

Im feeling like we really need to get the ball rolling on this therapy, so far its been...12 months with no approval and TONS of phone calls. Oh and the therapist that she had seen once has no clue how to find out the way to bill me privately and to be honest, I dont think I really want to see her anymore.

[Dom&O]

I have absolutely no information about private pay therapy because I'd never be able to afford it, but I was curious to why your DD has a feeding tube. WHen did she get it, and why? It could be possible to still tease a medical dx out of her situation to get them to pay. Is it possible she had silent reflux which caused her to refuse feeds? Was she a preemie?

That would be the route I would take, as it would sicken me to pay for something that the insurance should so obviously cover for you, regardless of a med. dx or not..if she can't eat she needs therapy, period, in my book. I hate insurance!

[~cassie]

We do private speech for my son(as well as through the school) and they also offer feeding therapy. We went through our local university that has a Master's program for people in the therapy programs and it is on site that the students get to work with the kids. We pay 75$ for 3 months-and he goes 2-3hours a week. Do you think one of the local colleges/universities, or even a teaching hospital could have something like that?

[APToddlerMama]

OP--Do you live in the US? The Early Intervention program in your county will very likely provide this service. At least in the county in which I worked in EI and now another county in which I live do... I would call and make a referral yourself. You will then have a very small co-pay to them or none at all depending.

[Lindsay1234]

Dom&O, dd2 had a heart defect (not a preemie) and had surgery @ 6 wks old. We didnt get to try bottle/breast feeding til 10 wks and by that time, she had absolutely NO interest in either. Got the tube and she was eating a few tsp a day (until getting tired and falling asleep) and when she had her 2nd heart surgery at 6 months, an ENT scoped her throat with an adult scope, terrifying all of us and causing her to have a swallowing aversion. A couple months ago, she started grabbing food off our plate and "eating" it. Putting it in her mouth, chewing and spitting out. When she tries to swallow, she gags. I know that some gets down because she has reflux and when she pukes I see food sometimes. Purees are OUT, she wont even put them in her mouth, she loves big chunky stuff. And yes, the ins is frustrating. They are willing to pay $500+ a month for supplies but not the cost of 1 session of therapy a week.

Cassie, the state school a mile from us is known for their speech pathology pgm, GREAT IDEA!!! Ill look into it!

APtoddlermama, So our EI is driving me INSANE. The one hearing/speech person quit and with budget cuts, they have no replacement. The nurse that comes by every month literally takes down the info (med appts, rx, future appt, etc), questions everything the docs do, pushes to come along to the doc appts to give her 2 cents. The PT/OT person is actually the special education instructor and for the last 4 visits, we have concentrated on making dd2 a photo album with pics of her fav things, I have spent the past 3 hr appts placing stickers on construction paper (around the pics). Im not kidding. They actually went down on the frequency of appts because dd2 doesnt really need their help.
The regional center in our area has determined that dd2 isnt sick enough to receive services. Im not upset with them at all, I understand. They say its a neuro problem, and they dont admit kids like dd2 who is, in theory, pretty dang healthy, but tube fed. And with the crazy budget cuts here, they need to definitely focus on the kids who are really sick.

I called a few places today and it looks like $100 an hour is an average rate. Seems doable to me, the rx that the therapist gave me months ago was once a week, I can swing that right now so were going to do it.

Thank you guys for your input and ideas!!! Dealing outside her medical group and private paying is new and frustrating.

[Dom&O]

I would still try to get your insurance to cover it, if you're so inclined to do battle with them, it may not be worth your time. I think your medical dx is based on her heart defect which delayed/disrupted normal suck/swallow reflexes of infancy and inturn caused a negative feeding association. If the medical issue had not been there she would have typically developed in thjs area.

I'd have a doctor write a letter of medical necessity for this and state that the medical issue is the cause of her refusal to eat.

Good luck either way!

[anj_rn]

See if the doc will label your DD with an Oral Aversion (since she was clearly traumatized with the procedures). From the insurance point of view, dysphagia means you can not swallow and is not always responsive to therapy. Oral aversion is responsive. The other route would be to see if your doc will order a swallow study, this would be supervised by an ST and could help pinpoint the diagnosis that will get you the therapy. My DD is also tube fed (since 4 months), and we have just started oral feeds this month.

[Lindsay1234]

So just a couple calls to our med group and a few emails form them and shes been "allowed" to be seen before any approval from anyone! I stressed how crucial this time was right now since shes really and truly trying to eat!

Dom&O, "If the medical issue had not been there she would have typically developed in thjs area." YOU understand that and I understand that, it seems to make so much sense to me which is why it is so dang frustrating talking to ins people on the phone. I talk in circles.

anjrn, Ill call tomorrow. Thats really helpful and I thoink youre right, I dont think that changing that dx would be lying either at all, so I wouldnt see anyone mind doing it. I always assumed that dysphagia was problem swallowing/aversion, never thought they might be different. Our kids are almost the same age! Dd2 is 5/09. How are your oral feeds going? Did your lo swallow anything before?

Millions of thanks guys, I KNEW this would be the right place to post!