Yet another swallow study…

[Anonymous]

We are going for another swallow study next tuesday to see if DS can tolerate thin liquids again. We have been thickening with simply thick for 2 months now with great results and alot less vomiting. Although I would love for him to be “normal”, even if he passes I’m leary of stopping the simply thick because it has made things so much better. Also, I’m not sold on the idea that he’s ready yet anyway. He still coughs and sputters ocassionally on nectar consistency as it is, but we shall see. Do you think continuing to thicken will cause issues later on?

[Anonymous]

So DS had his 3rd swallow study yesterday and failed..again. Although I guess it wasn’t a total failure as he did improve slightly and is able to move on to 3/4 nectar cosistency, but aspirated big time on thin. We still have no official reason for why he’s having these issues, but I’m being told that its due to how severe the reflux and esophagitis was in the beginning. However, all of that seems to be under control now and he’s still having issues. Also, we’ve been on neocate and PPI’s for over 2 months now and his stool still tested positive for blood! So maybe just that little bit of irritaion left is causing the issues still..who knows. Our GI was a little surprised as well, but reassuringly tried to tell me that in some cases damage can take up to 6 months to heal!?! He doesn’t seem to be bothered one bit about any of it, but my wallet is! Ughh..I hate MSPI!!! jillynjacksmom2009-04-08 18:53:32

[Anonymous]

are you not getting neocate covered??

[Anonymous]

We are currently getting a percentage covered(still paying a little over $200/month+the cost of simply thick, about $60), but our durable medical equipment/supply policy that covers it caps out at about the time DS will be 4.5 months old. We are expecting to be on neocate until AT LEAST a year if not longer. Our GI talked about a trial of alimentum at 6-8months if he’s doing well, but given the extent of damgage that was there, she didn’t seem to optimistic about it working, and I’m not sure if I want to put him through that again so soon.

Don’t get me wrong, we will pay for and do whatever needs to be done, I was just venting a bit 🙂 I’m sure as you all DEF know, its just hard to adjust as we were expecting to just BF and sail through like we did with the 1st. Never even considered we would be doing this!

[Anonymous]

why is your neocate being covered under durable equipment and supplies? that seems a little odd.

[Anonymous]

Our prescription plan, I’m told, absolutely will not cover it, even with letters, phone calls etc. This was the only loophole in our coverage that we could find..I’m open to suggestions if you have any fighting experience!

[Anonymous]

i’ve had more fighting experience with insurance than anyone should have to have—-and i usually won. i used to joke with kevin that everytime my name came up on the screen that they probably got a red banner that said, “WARNING! HOSTILE”. i also used to say that they probably said, “just give her what she wants so she will leave us alone.”

who are you insured with and what state do you live in?

there is a gal that used to be on this board that has been working to try and get a law passed to make all insurances cover elemental formulas regardless of their method of delivery. one insurance representative said that they actually cover it, but that they always turn it down the first time they ask.

also, getting a caseworker from your insurance company and a nurse from the insurance company can be really helpful. when tianna needed a dietician to help with her eating disorder, our insurance did not cover one—-except for one visit for a diabetic. i told them that the hospital was not going to release her from the hospital unless she had a dietician, a counselor and a doctor to follow her progress, but the insurance wouldn’t cover a dietician. they had a nurse contact me and she consulted with some doctors. the doctors confirmed that having regular visits with a dietician was standard treatment for eating disorders—-so the insurance agreed to cover one for us.

never take “no” for an answer the first or second or third time!

[Anonymous]

We have BCBS of TN. I don’t think our drs would have a problem writing letters again or even making phone calls if need be, but since the DME thing is currently working, I think I should prob start now to work on coverage for up to age 1?? I think I’ll call my ins tomorrow and get an idea of what hoops we need to jump through now. I’ll let you know what they say. Thanks!

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