Infantreflux.org | HAVING A HORRIBLE DAY AND NEED TO VENT!

This topic has 13 replies, 1 voice, and was last updated 18 years, 1 month ago by Anonymous.

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August 29, 2006 at 10:20 am #12536

Anonymous
Inactive

Sorry, this post is so long… I am just having a bad day and needed to vent!

My dd, Abby, will be 5 months next week and was diagnosed at 2 wks. Started on Zantac then Prevacid. We are on our second pedi. GI. The first one only dosed her 5mg per day of the Prevacid this one gave her 10mg per day. After talking to Dr. Phillips at Marci-Kids I increased it to 7.5 mg 2x’s per day and then the GI finally approved the dose.

She seemed to be doing better, sleeping through the night, still spitting up but happy. Then she started waking up at night, once, then twice. Last night she had me up every hour!! I didn’t think that she is hungry b/c she drinks 32oz. of Nutramigen a day. At night, she ends up rolling over to her back and then gets mad b/c she can’t get back onto her belly. I go in give her her thumb and she usually goes back to sleep.

Then she started crying during feedings and screaming when we burp her. I talked to the GI about this and they would not increase her dose of Prevacid even after faxing all the Marci-Kids research and my emails with Dr. Phillips. She wants us to try Neocate. So, then I took the research to her Pedi. He also will not increase her meds and wanted us to try oatmeal before her bottles to see if this would help decrease the amount of forumla she drinks. The oatmeal has helped. It has decreased the amount she spits up but sometimes she is too fussy to eat it and then cries during her bottles again.

Last night was the last straw, so this morning I went to the Pedi.’s office to pick up the samples of Neocate. Well, eventhough the nurse practitioner told me they had some they don’t. They never have Neocate and don’t even have a rep. for it!!! The only samples I can get are at her GI’s office over an hour away! I have two others dd’s and can’t drive there with all of them and to boot my husband’s work sent him to PA. for work for the next 2 weeks, so he can’t even get it for me.

So, since I can’t get any samples, I called our insurance company b/c they said that It would be covered. She just needed to be pre-certified. Well they kept giving me different answers and it turns out they won’t cover the Neocate.

YOU HAVE GOT TO BE KIDDING ME!!!!!

The Neocate costs $130/4 cans!!!! How can anyone afford that???? What else can I do, no one will increase her meds., so I have to order it. I can’t let her be in pain anymore.

So, the Neocate doesn’t come it till Friday. I hope it doesn’t get any worse befor then. I hope tonight is better, Abby and I really need some sleep. Thanks to everyone for listening.

August 29, 2006 at 11:00 am #12541

Anonymous
Inactive

hi there.i know the neocate is expensive. a lot of moms have to write
letters to the insurance companies to convince them to pay.

here is a good link and you may find a link to a letter someone wrote:

https://www.infantreflux.org/forum/forum_posts.asp?TID=2607 &KW=going+to+the+top

just copy and paste that in your browser^

the only reason my son can have neocate is because we qualify for WIC.

i have to say that i do think your daughters dose is still too low.

as for the formula, is she even showing signs of intolerance, besides
reflux? the neocate could help a little, but in the long run she would
probably be more comfortable with a higher dose.

like i said before, my son will be on 24 mgs a day- 8mg 3 times.

maybe after the change in formula if there is no improvemnt, you can then tell them that obviously she needs an increase?

i know this is frustrating-try to hang in there.

August 29, 2006 at 12:43 pm #12550

Anonymous
Inactive

nataliachick7-

Thanks so much for the link. I found the info. about APRIA and called. They are going to try to get the insurance to cover it by considering it Durable Medical Equipment. Keep your fingers crossed. Of course it’s my luck that I already ordered a case for the company. But then who knows how long it could take to get coverage and I already won’t get the formula still Friday. I really hope it works after going through all of this.

August 29, 2006 at 12:57 pm #12554

Anonymous
Inactive

I’m sorry things are so hard right now. I know how aggravating it is
to have to fight with these doctors to get your baby the right
treatment. I had to pester Myles’ doctor for almost two months before
she finally agreed to treat him with the high dose of Prevacid that
marci-kids recommends.

I’d probably look for another doctor because the 15mg is probably not going to be enough.

You may be able to find Neocate on Ebay and save some money that way. I
wouldn’t give up on trying to get your insurance to cover it, though,
Often they refuse initially because they know most people won’t pursue
it. A fax from your doctor may help.

Good luck.

August 29, 2006 at 1:45 pm #12560

Anonymous
Inactive

My son is on Neocate and the insurance considers it a vitamin supplement. It has been almost 4 months that the ped GI and I have petitioned the insurance for help &/or reimbursement and have not got a response yet. I have stayed on them since day one and it is always one excuse after another about the paperwork!

We do not qualify for WIC but in the state we live, there is a service that is run by the state called CSHCS (Children’s Special Health Care Services) which has just started to help cover the cost of the formula for us (we have had to pay for it out of our pockets 4 months now). Through this service it does not matter how much a family makes as long as your child is diagnosed with an illness that it covers & is seen by a subspecialist. Based on your annual income you are required to pay the state so much $ a month for a year. Considering how much it has been costing us it is well worth it for us (the payments are very low).

Hope this helps.

K&T’s Mom2006-8-30 9:32:19

August 29, 2006 at 2:10 pm #12566

Anonymous
Inactive

Glad to hear that the insurance may cover it. I think there was also someone on this site who was able to write a letter to the Children’s miracle network and get it paid for that way. It’s really a crime how much they charge for such a small can of formula. Good luck.

August 29, 2006 at 3:42 pm #12577

Anonymous
Inactive

Hi Andrea,
I’m sorry you’re having so many problems with your doctors. I’m not sure if anyone mentioned it yet, but have you tried signing up for WIC at the state health department? If you qualify, you can get the Neocate for free. You just need to get your doctor to fax them a presciption. If you do qualify and can get the fax in, I’m pretty sure you’d get the formula right away, so you’d have some while you wait for your order. Good luck!

Bryce’sMom2006-8-29 15:44:24

August 29, 2006 at 4:08 pm #12579

Anonymous
Inactive

We aren’t eligible for WIC unfortunatly. If the insurance won’t pay for it will just have to find a way, if it is what she needs.

August 29, 2006 at 4:12 pm #12580

hellbennt
Keymaster

you can fight to get neocate covered:

https://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a mp;a%20mp;a%20mp;a%20mp;a%20mp;a%20mp;a%20mp;a%20mp;a%20mp;a %20mp;a%20mp;a%20mp;a%20mp;a%20mp;a%20mp;KW=going

hellbennt2006-8-29 16:14:38

August 29, 2006 at 5:48 pm #12595

Anonymous
Inactive

HUGS TO ALL OF YOU FOR YOUR HELP.

nataliachick7- Thank you so much for the link.

I called APRIA and they got our insurance to cover 80% of the cost of Neocate. YEAH!!! I told my dh that he better never make fun of me again for talking on the relfux boards, this saved us sooooo much money. I would have never found out about APRIA if it wasn’t for this board. THANKS AGAIN. I really hope this is the answer to her feeding problems. I will keep everyone posted, the months supply will be here tomorrow. I think I will mix in 1/2 and 1/2 for a day and then try and go full strength. I would like to get it in her ASAP to see if it is going to help.

August 29, 2006 at 5:53 pm #12596

Anonymous
Inactive

lol i get made fun of for it too-yet i dont know where we would be without these boards!!

about the mixing-you have to go very gradually becauset this is the
most disgusting formula made. try to do it slowly over a week or 2
weeks time.

otherwise she will prob reject it.

August 29, 2006 at 7:54 pm #12606

Anonymous
Inactive

Awesome news!! I’m so glad you got Apria to cover the Neocate. And so fast!! Hooray! I hope it helps her.

August 30, 2006 at 4:44 pm #12706

Anonymous
Inactive

Well I got the Neocate today, in time for her 3:30 feeding and I thought I would just try giving her the bottle with all Neocate.

SHE DRANK THE WHOLE THING, NOT PROBLEM!!!

WHAT A GOOD GIRL I HAVE!!!

So we will see how it goes. I am keeping my fingers crossed.

August 30, 2006 at 8:18 pm #12726

Anonymous
Inactive

That’s great!!! Liza was like
that. She’d drink anything; breast milk, soy formula, milk formula,
rice milk. Whatever!! Babies like that are awesome!!!

I hope the Neocate makes her feel better.
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