Tube Feed so Insurance Pays?

[Anonymous]

When my oldest was an infant, we had an NG tube for a month or so. A home health care company brought the all the formula and the equipment, and insurance covered everything. Even though we stopped using the tube fairly quickly, they brought so many cases of the formula to us initially we had plenty. In fact, after he moved to Good Start 6 months later we ended up donating a couple of cases to a friend of a friend out of state who couldn’t afford it! (No, not insurance fraud – once the formula was delivered to us, they couldn’t take it back and give it to someone else – would just get destroyed.) Check with your insurance company (but don’t mention that the NG will be used only occasionally). Coverage really varies by state; we’re in MA and very lucky to have lots of coverage. Good luck!

[Anonymous]

He is over one so I don’t know that WIC would cover it. I think that this comes down to the fact that he really needs the Neocate. You are so close to a feeding tube now that it would give you some experience and you could see how he will react to one. NG tubes come out real easy so if you find he is miserable and you don’t want to use it that it can come right out. I hope you find the right answer. Good luck and keep us updated.

[Anonymous]

Thank you all very much. I also went on another forum and saw pictures of ng tubes in babies. I would so not want to do this, but what else is there if he keeps loosing weight. Thank you all very much. I will keep you updated.

[Anonymous]

I am sorry you are in that position – it is a heartbreaking one to take as a parent and I would just say – go with your gut – if you think that he is going to need the tube then sooner than later is sometimes better for babies who might otherwise really develop aversions to feeding. Sometimes the tube gives them a push in weight and they do not need them anymore. Sometimes they are in for a long time. It really really depends on what the issue is with your son and I think that you have not said it or maybe i missed it – does he eat sufficientl, is he on a luidid diet, does he have aversions, does he have allergies (MSPI only or oterhs??) – all these things affect how long the tube may be in for.

There are some children on WIC on another board and i think that they are older than one – but not sure.

Yes, our insurance covers everything – some insurance and states only cover formula when the child is close to 100% tube fed – our covesr everything because he has a feeding tube.. so it really varies.

[Anonymous]

Carson has MSPI and also showed allergies to oats and oranges (citric). He really gags so easily. He only eats a tiny bit at a time. Yesterday when I pushed him to eat more, he just gagged and vomitted. It seems the foods he tolerates well do not have many calories (fruits, veges, rice). He did eat half of a beef hot dog today and didn’t gag. We have one month and then see our specialist again. If he hasn’t gone up on the growth chart – he hasn’t in months- we will have to do something. Half way through the month I am going to take him in to see if he has gained any. Just thought I would stop in and use their scale and not bother anyone so we don’t get an office visit charge. What do the Miralax and Periactin do? I did hear there is a medication that some children take that makes them feel hungry. Maybe that would be something for Carson? Thanks for your kind words.

[Anonymous]

I don’t know if I answered your question very well! Basically, Carson doesn’t get enough calories in a day. He should get around 1000 but some days it is closer to 550-600. I try to give him Neocate in a bottle mixed with Rice Dream to boost his calories, but he doesn’t always LIKE his bottle (he is 18 months), so I feed him a bottle when he is sleeping. BUT, does that make him feel full during the night and then not want to eat so much the next day???!!! UGH. I can’t wait until he can eat soy/dairy and get more calories from puddings and yougurt – and he wouldn’t gag on soft foods like those. He really likes corn, muskmellon(cantilope), noodles, rice, beans – but those really don’t have many calories at all. Gee, mabe I should go on a diet like Carson is on! ha

[Anonymous]

Bryce is over one, and WIC will give us anything he needs as long as we have a doctor’s note

[Anonymous]

Thanks for answering Brenda.

Well, allergies def can cause aversions – and the definition of aversions is SO WIDE… the gagginess is also a problem with Matthew and we have not been able to move from puree foods really. These babies have sensitive stomachs.

To answer your questions – Miralax is a stoll softener (slightly different than a laxative). It works kind of like fiber – it is molecule that retains water and makes hte stool softer. Periactin is the appetite stimulant that you may have heard about. It is an anti-histamine but mainly used for appetite purposes OR/AND motility purposes. I think for Matthew it is working more like a motility agent than anything else – and it is working well! We were doing just wonderful – he got a GI bug (we all did) and we went to the ped today and they told us that if we do not start feeding him through the tube some applesauce and pedylate then we had to have an IV put in to break to vomitting/diarrhea cycle so i am heartbroken right now!!

You should ask for Periactin – really, some people notice a huge difference. What we also noticed is that the minute we were able to get his 900-1000 calories during the day and nothing while he was sleeping, he started being hungrier… when Matthew was younger, only 5months, we started sleep feeding.. my ped told us to stop and we had to get the tube.

You mention things like beans etc – does he like sauces with those? Have you tried something like Duocal, Benecalorie, Additions (made by Nestle)… some of these you can add – some people say they add no flavor, others do – i think they are pretty tasteless.

How many calories per ounce are you doing in bottles? Does he drink water during the day? You can go up to 30 cals even 35cal. Have you ever thought of trying Peptamen Jr or EO28 (Made by Neocate) or the new broken down Pediasure (cannot remember the name right now)…

I hope this helps – i am heartbroken for you – but you have to know that the tube has really been a life saver for us. Whatever you decide, you have to believe in it… you are not a failure for getting the tube if you decide to – you do what you have to do to give your son the best chance to reach his full potential… and if that means tube-feeding then it does!!

[Anonymous]

Thanks Thais! I will research and ask our spec about periactin. He is quite easy to deal with and did mention it months ago.

We tried duocal and EO28 (at different times) and both really seemed to upset his stomach and we had really bad nights. I will look into Benecalorie or Additions and broken down Pediasure, tho.

Carson is on Neocate at 24 calories per ounce mixed with rice drink. So, at night I give him an 8 ounce bottle at 192 calories of Neocate and 110 calories of rice drink. That is a 302 calorie bottle! But, of course, he doesn’t always LIKE to drink a bottle so I sleep feed him. Then, as you indicated, he probably isn’t as hungry during the day because he eats over 300 calories while he is sleeping!

Thank you for all of the great information. I printed out this thread and will research it tons. I really feel that if I am not informed, I get nowhere at the docs. We have to be specialists of our own. The Periactin sounds like a good thing for Carson. I may even call and leave a msg for our specialist about it- sometimes he will call a prescription in and then when we DO see him he will ask how the meds are going.

I really can’t thank you enough. Moms are definately my best bet through all of this. Thank you!!

[Anonymous]

Thais: Did your son experience any bad side effects from the Periactin? I read that it could cause irritability or inability to sleep. Your Matthew is about a month younger than Carson. What dose are you on? Carson weighs 19.3 pounds. Sometimes I think our doc starts out at the very minimal dose and then we have to take 3 months before he is at a good dose and it is working well for him. I just want to be well-armed when I see the specialist. Thanks for the great info!

[Anonymous]

Matthew is on a little over 2mg per day. What we do is give it once a day, about 20minutes before his night feeding. BUT he goes to bed right after the night feeding… it makes him tired but not really cranky. Although, it did make him cranky at the beginning… other moms have said that it takes a couple of weeks to settle in… especially the ones that separate it in 2 doses. We do not.

I do not think periactin is weight dependent… just from the spanish version… the dose seems to go up with age… some babies like Lauralee (she is not here much) – was on 4mg a day… and he is a couple of months older than your son.

Peptamen Jr seems to be the preferred broken down formula, but everyone is talking about the new broken down Pediasure… but it seems liek you are doing probably close to 35 cal per ounce.

Just something i did not tell you yesterday – i don’t want you to think that the tube is the answer for everything… if you decided to go that route you will be dealing with different issues – like pulling out the tube, refusing to eat maybe, some gagging if you try too much volume, or too fast etc etc… don’t want you to think it is easy because i would be lying… BUT you will hopefully stop worrying about Carson’s development and that, from my perspective, is what matters most.

[Anonymous]

I am here today – as Thais mentioned we are not around too much on this board anymore as I think the reflux has been resolved. Now we are just working on the aversion.

Christian stopped growing between his 6 month and 9 month appointment(he is now 22months and 22lbs). We used the NG tube at 10 months for 8 days – Christian would cough so hard the tube was coming up every day. We decided that since he was fighting his bottles so much and I was so concerned everyday about the hydration levels and getting enough calories in – the g-tube was our saving grace. This procedure was done in January 2006.

Christian is an extremely active toddler and had never taken in enough calories to keep growing. Even with the tube sometimes it is a stretch to clear 1000 calories. We are working more on oral feeds and food in general doesn’t have a lot of calories. FYI – Hormel has a beanie weanies that is like 320 calories per container and right now he eats 1/4 to 1/2. We use duocal in our pediasure. He found the benecalorie and rejected it totally. We use homemade milkshakes using chocolate syrup and high calorie vanilla icecream and whole milk of course.

We did a trial of the Periactin over 3 months – no side effects per say just a little sleepy within a half hour of the dose. And of course he ate like crazy when he was taking it. I believe his dose was 5 ml (2mg/5ml) twice daily. We are thinking of a trial again and we will ask about the once daily dosing like Thais is using – can’t have his dozing during the day.

We are on WIC and receive pediasure. We have a doctor’s note that indicates MSPI and FTT so WIC covers it each month. We also have insurance that will pick up what is not covered by the WIC.

Our feeding machine rental and all equipment necessary is covered through the insurance company. If not I priced it out as a cash patient when our insurance cancelled and it was going to run about $200 per month for everything.

If I can be of further help – please don’t hesitate to email me at [email protected]

lauralee2007-2-25 14:36:12

[Author]

Posts