Is hospital scamming me?

[WeLoveLilo05]

Here's some info, sorry may be TMI:
DD has had constipation issues for probably 2 years now (she's now 5). She'll do good some months, then terrible others, it really is like a rollercoaster. Well, last weekend she was actually hospitalized b/c she wouldn't eat or drink anything! I called ped with the concern on the 2nd day of her not eating and ped's receptionist said "its probably a virus and we can't do anything for that so just keep her hydrated." Well, next day comes and she's still not eating and drinking very little and just not herself. Call ped. again and receptionist says to go to ER. We go to ER only to find after 24 hours they really aren't sure what's wrong with DD . Gave her an enema and she did poop, but not what I would expect from a constipated child (she did poop 2 days in a row prior to her NOT eating which is why I didn't even think it was constipation in the first place). Then I have a team of about 4 drs telling me that she has to be tested for Caliec's Disease (which came back negative) and then a sweat test for Cystic Fibrosis. Now here's what I don't get.
The DR. told me DD was tested for this upon birth b/c its genetic. I asked my ped where those results were and she said the state has them and the only way she would get the results is if "something was wrong". So why do I have to take DD for this test? Can't I somehow obtain these results? Why are they not readily available in a file at my ped's office?
I am also stressed over how much DD's hospital stay may cost, DD is covered under DFs insurance, but I know sometimes some things just are not covered. Do most hospitals do a payment plan even if you have insurance?
Also, do you think my ped should have seen her when I called? I keep asking people this and I am getting a mixed bag of answers. You see, we just moved here not too long ago and we are fairly new to this ped. My old ped always saw DD over any concern we had.
Sorry its long.

 

[RachelEllen]

Cystic Fibrosis is currently screened for in many state's newborn screening program. However, it's just a screening test. Neither it, nor the genetic tests, are perfect, and the best test, when there is actual clinical concern, is the sweat test. (The genetic test isn't perfect because there are so many different mutations that can cause CF. We can't test for all of them.)

As far as the test results when she was born, the newborn screen would have been sent from the hospital. No, your doctor would not have gotton any information if there was no problem. There should be proof that the test was sent in your child's initial hospital records (which are sometimes copied to the pediatrician.)

I work with newborns, so I'm not sure how long states keep the newborn screen results. However, your pediatrician could call the screening office and ask.

I hope this is helpful, and I wish you the best with everything.

 

[NHdisneylover]

We have moved around a lot and i know it does change from doctor to doctor--but the vast majority of them will send you to an ER for this type of thing (especially after hours, but possibly even before). I love the ones who will always fit my kids in ASAP if needed and then decide if they should go to the ER but I think we have two such doctors out of 10.

My understanding (which could be wrong) is that the initial screen some states do on newborns is not conclusive and would need to be confirmed by a sweat test if it does come back suspicious--but that it can also miss cases of CF entirely. Seems to me, given her years of issues with no real answer I would be good with any test that was safe for her and did not cause her pain.

It must be very scary not going on with your child I hope she feels better soon and you get the answers you need.

 

[Luv Bunnies]

That's a tough situation and I'm sorry you're dealing with it.

In my opinion, the hospital probably isn't trying to scam you on purpose. It just sounds like the pediatrician and the hospital are a little unorganized in the way they've been handling things. When you called the peds. office the first time, was it a receptionist or a nurse who said it was probably a virus? At my peds. office, the nurses are on a rotation so one of them is always dedicated to answering the phones. If you ask for advice or explain what's going on with your child, you can be confident you're talking to an RN with the training to give you an answer. I would be concerned if your doctor's receptionist is making the call about whether or not your DD should be seen. You might want to clarify with the doctor who answers the phones and who is and is not qualified or authorized to give advice. Also, the nurses never tell me that my kids can't or shouldn't be seen. They tell me what they think might be going on and what I can do about it at home. They always leave it up to me whether or not I want them to be seen. They never tell me I can't or shouldn't bring them in if I think I should.

In terms of the cystic fibrosis test, I'm thinking your pediatrician never even saw the results. It sounds like it's a standardized test they do in the hospital for all newborns and then send it to some state agency to analyze the results. If the test came back negative, you would never hear a thing about it and your doctor wouldn't be notified or given a copy. I don't know for sure if that's how it works but that's what would make sense to me.

Before they do the test again, you can ask the hospital to verify with your insurance whether or not it's covered. In fact, you can ask them to verify coverage for any test or procedure that you are questioning. Then you can decide whether or not to give them the go ahead to do it.

In terms of a payment plan, I think most hospitals will work with you to set up something that is doable for you. Just ask the billing department how it works.

Remember that you're in charge of your DD's care and you know her better than anyone. If something doesn't sound right to you, be sure to ask questions. I hope everything works out for you and that DD is feeling better!

 

[WeLoveLilo05]

Ped feels that its all behavioral. She feels it must have hurt once when she pooped so now DD will think that it always hurts and will hold it in. We also went to GI dr. He had her on miralax and he lowered the dosage each week until she was weened off of it, She was on this for maybe 5 weeks. this was LAST Aug and she was doing well, we had a bad bump in December though with the constipation again and i had to use a suppository to get her to go. Ped. said maybe there was some kind of miscommunication between me and GI DR and recommended seeing another one and I don't think this one takes our insurance.
It just makes me sad, I just wish she would eat, drink, pee and poop. O, I forgot to mention that b/c she wasn't eating she lost weight and they are very concerned about that, as am I, she was so tiny to begin with. I had to get her like a pediasure boost type of thing to drink.

 

[clarabelle]

I had a friend whose son had encopresis (problems with chronic constipation and holding it in) It was a hard few years for them.
If you haven't done any research on that word -I encourage you to do so.
It is like a vicious circle -a physical problem and a mental problem both.

If it was after hours or on a weekend -I don't think it is unusual at all for the ped to send you to the ER.

 

[ajk912]

Ped feels that its all behavioral. She feels it must have hurt once when she pooped so now DD will think that it always hurts and will hold it in. We also went to GI dr. He had her on miralax and he lowered the dosage each week until she was weened off of it, She was on this for maybe 5 weeks. this was LAST Aug and she was doing well, we had a bad bump in December though with the constipation again and i had to use a suppository to get her to go. Ped. said maybe there was some kind of miscommunication between me and GI DR and recommended seeing another one and I don't think this one takes our insurance.
It just makes me sad, I just wish she would eat, drink, pee and poop. O, I forgot to mention that b/c she wasn't eating she lost weight and they are very concerned about that, as am I, she was so tiny to begin with. I had to get her like a pediasure boost type of thing to drink.

Why would you wean her off of Miralax? My dd also has constipation issues and the Miralax is less of a hassle than the expense/trauma of refusing to poop and a hospital stay. Constipation is really preventable with all of the over the counter medicines out there. I know what you mean though, I didn't want my daughter to be on a long term drug either so I fought it for the first few years too, trying to wean her off of it..but we ended up with so many enemas and tears it just wasn't worth it. She's been on half a capful of miralax for about 4 years now, for the year or so before that we were messing with the dose (at one point she was so backed up we had to do the max dose for her age level). I ask at every appt, and there is no long term risk of miralax (it's just a stool softener) so since it works, keep her on it.

Also, dehydration does cause constipation..so increase water supply, oh, and extra fruits and veggies help. I think the pediasure might be making her more constipated as well, isn't that a dairy type product and milk is constipating? I would either talk to your doc or see a new doc..I can't think of one reason to have her off of miralax with her problems. Hugs!!!!!!!

 

[The Mystery Machine]

Ped feels that its all behavioral. She feels it must have hurt once when she pooped so now DD will think that it always hurts and will hold it in. We also went to GI dr. He had her on miralax and he lowered the dosage each week until she was weened off of it, She was on this for maybe 5 weeks. this was LAST Aug and she was doing well, we had a bad bump in December though with the constipation again and i had to use a suppository to get her to go. Ped. said maybe there was some kind of miscommunication between me and GI DR and recommended seeing another one and I don't think this one takes our insurance.
It just makes me sad, I just wish she would eat, drink, pee and poop. O, I forgot to mention that b/c she wasn't eating she lost weight and they are very concerned about that, as am I, she was so tiny to begin with. I had to get her like a pediasure boost type of thing to drink.

Put her back on Miralax and keep her on it. How stupid of them to take her off of it.

Spoken as a mom who dealt with the constipation issue and the eating issue.

Now my child ended up on growth hormone as well. It was not until she did that did she start really eating and gaining weight. She was on Miralax for yrs.

Please, put her back on it. Your dd's condition can ruin her colon.

 

[pipersmom]

The newborn screening for CF is a basic, most common "type" screen. Unfortunately there are over 1,500 different combos that can cause the disease. A lot of children with CF have trouble with weight gain and constipation, which is probably why they're trying to completely rule it out. It definitely is not a scam on the hospital's part. Also, she does NOT need to be inpatient for the sweat test, it's a simple, painless, less than an hour deal in most cases. If she's still admitted, I can see them wanting to get it done, because quite frankly most of the digestive issues CF causes can be pretty easily remedied. My dd having CF, I can completely understand where you're coming from with the test questions, hopefully your dd does not have it, but knowing what I do now, I would def rule it out if I were in your shoes. Good luck!

 

[luvmy3]

OP, have any of the doctors mentioned Hirschsprung's disease? When my dd was an infant she had problems due to constipation and had to have a barium enema and then a rectal biopsy to rule it out.

ETA, I know that has nothing to do with your question, I was just wondering if it was something they discussed with you.

 

[Disney Doll]

That's a tough situation and I'm sorry you're dealing with it.

In my opinion, the hospital probably isn't trying to scam you on purpose. It just sounds like the pediatrician and the hospital are a little unorganized in the way they've been handling things. When you called the peds. office the first time, was it a receptionist or a nurse who said it was probably a virus? At my peds. office, the nurses are on a rotation so one of them is always dedicated to answering the phones. If you ask for advice or explain what's going on with your child, you can be confident you're talking to an RN with the training to give you an answer. I would be concerned if your doctor's receptionist is making the call about whether or not your DD should be seen. You might want to clarify with the doctor who answers the phones and who is and is not qualified or authorized to give advice. Also, the nurses never tell me that my kids can't or shouldn't be seen. They tell me what they think might be going on and what I can do about it at home. They always leave it up to me whether or not I want them to be seen. They never tell me I can't or shouldn't bring them in if I think I should.

In terms of the cystic fibrosis test, I'm thinking your pediatrician never even saw the results. It sounds like it's a standardized test they do in the hospital for all newborns and then send it to some state agency to analyze the results. If the test came back negative, you would never hear a thing about it and your doctor wouldn't be notified or given a copy. I don't know for sure if that's how it works but that's what would make sense to me.

Before they do the test again, you can ask the hospital to verify with your insurance whether or not it's covered. In fact, you can ask them to verify coverage for any test or procedure that you are questioning. Then you can decide whether or not to give them the go ahead to do it.

In terms of a payment plan, I think most hospitals will work with you to set up something that is doable for you. Just ask the billing department how it works.

Remember that you're in charge of your DD's care and you know her better than anyone. If something doesn't sound right to you, be sure to ask questions. I hope everything works out for you and that DD is feeling better!

I agree with this and yes the hospital will most certainly set up a payment plan or allow you to pay with a credit card.

 

[WeLoveLilo05]

OP, have any of the doctors mentioned Hirschsprung's disease? When my dd was an infant she had problems due to constipation and had to have a barium enema and then a rectal biopsy to rule it out.

ETA, I know that has nothing to do with your question, I was just wondering if it was something they discussed with you.

No never heard of it, would they be able to determine that from an X Ray?

I am not sure why GI suggested to ween off the miralax. We saw him probably 3 times in the months of Aug/Sept to give updates on DDs progress with the miralax and I guess he saw that she was pooping as we were lowering the dosage?

Do you think this is more than just chronic constipation?