I will warn you this is a long story but I am begging any moms out there, if you have had this happen with your child, please please please respond.
Last Monday, my 11 year old daughter doubled over with pain after we got home from work/school. When I had her show me where it hurt, she pointed to her belly button and then motioned down towards her right hip. I pressed in, she said it hurt, I let go, she started crying from the pain. I knew if you had issues with you appendix, it hurts worse when you let go so I immediately loaded her in the car and took her to the hospital. We had to wait several hours to be seen by a doctor because A) she was not running a fever and B) my daughter has an extremely high tolerance to pain. She suffered constipation/impaction issues when she was younger so unfortunately, it takes a LOT of pain in order for her to show distress. I'm guessing the hospital assumed that since she wasn't screaming her head off, she wasn't that bad. I knew differently but could only bite my tongue and wait. Anyway, the doctor only ordered urine and blood test. Both came back fine so they sent her home with pain killers and told me to have her be checked by her doctor the next day.
Tuesday morning, daughter wakes up and still is in pain. I take her to our family doctor first thing. She agreed with me, it looked like her appendix and ordered a CT scan. CT scan results were very confusing. Radiologist was confused. Family Doctor was confused. It showed that 1) Appendix was enlarged but not acutely inflamed. Also showed some type of spot on it that they called a stone. 2) Inflammation on her right kidney and bladder. Radiologist believed she should have had a nasty UTI. Urine test was negative and she shows no signs/symptoms of a UTI. 3) All of the lymph nodes in her abdomen are extremely inflamed. After receiving these results, the doctor said we had no choice but to have a "wait and see" attitude. She gave my daughter a shot of antibiotics, prescription for oral antibiotics and pain killer, and drew more blood to see if her WBC had gone up. We were also told to be back there in the morning for a checkup.
Wednesday morning, my daughter is still hurting. She vomited several times around 9 am but I am not sure if it was due to whatever is wrong with her or if it was the pain killers. Get her back to doctor, she referred us to a surgeon. Surgeon is also confused by CT scan results. Even calls the original radiologist and then had the original radiologist give the results to a colleague to get their take on it. Everyone agrees, it makes no sense. Surgeon said he did not feel comfortable opening up my daughter when she still has not developed a fever and the CT results were so weird. He requests another CT scan. My daughter has Medicaid. Medicaid REFUSED to authorize the test. Medicaid REFUSED to authorize any type of surgery to see what is going on with my daughter. We go home in tears. I cannot begin to describe the frustration we were both feeling at that point.
Thursday, we go back to the family doctor. She checks her urine, still clear. Asks us to be back there first thing in the morning to get another blood sample to see if her WBC has went up. Thursday evening, my daughter seemed to perk up a little bit. She actually ate dinner and did not need the narcotic painkiller to go to sleep. I was excited, thinking she was turning a corner and that it would all be over soon....wrong....
Friday morning, she wakes up in worse pain than before. Before Friday, she had been describing the pain as though someone was stabbing her in the lower right side of her abdomen. Friday morning, she describes the pain starting underneath her sternum, going down to her belly button, and then diagonally across to where the pain was originally on the right side. She said it burns instead of the "stabby" (what she calls it). I take her back to the doctor thinking surely to God there will be a change in her blood count now. There wasn't. We were told that it will resolve itself and to wait it out.
My baby is in constant pain. When she eats, it burns. When she moves, it burns. Even if she just lies still, it burns. Now she is telling me her neck is extremely stiff. I don't know if it's from laying around all week or if this is a new symptom. I don't know what to do. Medicaid will not authorize any further treatment unless she develops a fever or her WBC goes up. She has missed 4 days of school already and I have missed 4 days of work. Has anyone ever had this happen? Suggestions? Thoughts? Anything? I'm at my wits end. Thank you in advance!!!!!
First, I want to thank everyone for taking time to respond. I am just now able to get to read the responses as my daughter woke up yesterday morning with more pain throughout her body. All of her lymph nodes in her body had became inflamed. This has made it painful to move her neck, raise her arms, and even walk. Due to this, I basically said to h*** with it all, loaded her up and took her Mission Hospital in Asheville. They did run a second CT scan, which did rule out appendicitis (thank God), her appendix is still enlarged, but it is not infected. They checked her urine (clear), blood (perfect), and ran a Mono test. She does not have kidney stones and her gallbladder is fine. Unfortunately, we still don't have a definite diagnosis, the ER doctor believes it could be allergy related, but at least we have a conclusive CT scan to rule out several things. The doctor gave her a shot of steroids to help reduce the inflammation and a prescription for her to take at home. I have already made an appointment for her to see her allergist this afternoon. I have my fingers crossed that we will have some answers soon. I do want to point out, I was not looking for medical advice, only to see if any other parent had their child have the same type of symptoms that mine had since the doctors were all puzzled. Medicaid denying my child tests that doctors said they needed to help diagnose my child made the situation go from bad to worse. I will post updates as they come in, thanks again for taking the time to reply.
***UPDATE*** Allergist does not believe it is related to allergies. However, my daughter woke up this morning and I noticed a definite improvement! The steroids are working and the inflammation appears to be going down. I may never know what caused this to happen. I just documented this as much as possible and plan on filing it away just in case it happens again. Thank you all again for your responses!
I agree to take her to an emergency room of a children's hospital if possible. If Medicaid refuses to pay for it I would appeal. You have enough documentation to take this to the top level. That is ridiculous.
I would pay out of pocket for the CT scan. If you think it should be worth it to have Medicaid pay for it, it should be worth it for you to pay for it for your daughter. First tell the doctor you need the same rate as Medicaid though vs the inflated price.
Tell them you will pay out of pocket. You will be reimbursed once they find out what is wrong.
If your daughter is still having these problems today, you need to keep on them until they tell you what is wrong. As the others suggested, take her to whatever doctor/hospital you need to until they can give you an answer.
You know what is normal for your child, and you know when something is wrong. It's not worth waiting for insurance to approve it. You can fight with them later.
Insist. Demand.
Has she had her gallbladder checked? I'm not sure if you can do this but try to get her a u/s on her abdomen to where it is fully accounted for. I hope it is nothing too serious and I'm sorry the insurance isn't willing to cover things. I hate to suggest it but perhaps you'll need to 'pay out of pocket' this time to make sure your child is okay.
The situation is not the doctors but Medical Assistance. MA is a governmental entity, so you need to get one of your State or Federal Representitives on your side. Also contact your local media and tell them what is going on. Tell them my daughter is sick, her doctors can't figure out what is wrong and some tests may need to be repeated but the insurance company will not allow it.
Social workers do not like to get phone calls from elected officials or news media. Expecially if that call is about a child being refused medical care by them.
In other words MAKE NOISE GET ATTENTION. Make them give you the answers.
Well, you should at least be comforted by the fact that it is NOT an infection, since she doesn't have increased WBC's or a fever after how long, now.
I am reading wrong in there, or did they actually tell you she has a kidney stone? Because I can tell you, the pain of passing a kidney stone can be worse that labor - I've passed about six in my adult life, and have over 20 more in my kidneys just waiting to attack. Each time landed me in the ER, vomiting from excruciating pain, I couldn't think, couldn't talk, couldn't hardly move it was so bad. The pain doesn't abate until the stone moves down far enough or passes completely. It's relentless.
Her neck is probably stiff from stress. Again, she has absolutely no signs of an infections - she really has signs of a kidney stone.
Also - I'm having a hard time with "all the professionals are confused by the results." What does that even mean? That they're inconclusive? That really, they show nothing wrong with her? That would be the case, if it were a kidney stone. I think that if the doctor's were truly worried, they would absolutely do whatever preauthorization they needed to do. On the other hand, YOU need to advocate for your child. Sometimes it's a simple talk with your insurance company, or doctor, to set in motion what needs to be done.
I think you need to stop HOPING that her WBC's go up!! You sort of WANT her to be sick, then?
Whoops, just read everyone else's answers. I don't mean to come off as being so mean - but you DID say they saw a STONE. Gallstones and kidney stones BOTH cause all the symptoms you describe, also without any sort of rise in WBC's or a fever because a stone is not an infection. I still don't know if I am reading this wrong. I see now you said they said there's a stone on her appendix - perhaps you misheard or misunderstood. I would request all of the doctor's clinic notes from this time period, or access them online (you can often do that) and just confirm what they have said so far.
Personally, if all they want is to see her develop a fever, then my child would "suddenly" have a fever - one I controlled with Tylenol and Ibuprofen.
Call Medicaid yourself and ask for an appeal. If that doesn't work, call your state's insurance commissioner to find out what to do. Worst case is you agree to pay for ct out of pocket, and when it proves to be medically necessary, Medicaid will reimburse you.
When they said stone, was it a stone (fecalith) in her appendix? Or a stone in her kidney? Most surgeons will remove an appendix if fecaliths are present, as those typically trigger appendicitis.
Best of luck.
I really do not like my boys in pain. It hurts me when they are in pain and I want to make it stop. I get where you are coming from on the pain. However, I don't get that you want her to have a fever.
I'm truly sorry your daughter is in pain.
Call your welfare office or whoever is in charge of her medical insurance and talk with them. Don't yell. Don't scream. Don't whine. Talk with them. Tell them what is going on. Get them on your side and working with you.
With CT scans inconclusive, I agree with others who have said why not do an ultra sound? If she's passing a kidney stone? The poster who said it's worse than labor is right. I had ONE once. And I would have preferred delivering all four boys again instead of that ONE stone. Now I do everything I can to watch my diet to make sure I don't get another.
I also second or third the people who are telling you to take her to your nearest Children's Hospital. Like Wake Forest?
http://www.brennerchildrens.org/Pediatric-Nephrology/Clin...
and have them look her over.
Hope this helps!
S.
Welcome to mamapedia!
I'm sorry your daughter is in pain.
I don't understand if the insurance wouldn't pay for the CT scan - why the doctor didn't order an Ultra Sound of her abdomen.
Call the insurance and fight. I don't have medicaid, so I can't help you. I would like to think you can fight them. What I don't get is that they denied the claim the same day. Didn't realize they processed claims that fast...for my insurance, it takes weeks.
Ask the doctor to run an ultra sound on her abdomen. Demand the doctor admit her to the hospital.
When you have time -- because I really hope that as I type this you are in a hospital demanding and insisting that your child be treated NOW -- please update us.
My daughter had appendicitis but her appendix did not appear swollen on ANY scans and her WBC was not very high. Fortunately a very experienced pediatric surgeon said that all things considered, he felt certain the issue was her appendix, and he did the surgery and was right -- though the appendix did not swell, it was infected as he saw once he pulled it out. I say this to let you know that scans and tests don't always reveal everything, and each person's case is highly individual. This may not be appendicitis but whatever it is, she's in pain; waiting for a fever or waiting for her WBC to increase could end up endangering her.
I would get her to an ER and demand they admit her. If the keep her in "for observation" and do not do a full, formal admittance, you could end up with Medicaid paying next to nothing -- I had a friend who was taken in "for observation" and found out that Medicare would not pay for observation but only once she was officially admitted as a patient.
The hospital will have a social worker or other specialist who will handle this with and for you!! Get your daughter to the ER and DEMAND that whoever that person is come and help you navigate the Medicaid issues, prices, etc. Even if this turns out to be "just" acid or gall bladder, your child is suffering -- get aggressive and demand that they help you. And listen to the other advice below re: asking costs of tests, appealing, etc. But I would not wait and wait for appeals or fevers if she is suffering today.
I'd make a trip to a Children's Hospital in a nearby city if you don't have one close. I'd tell her to scream in pain any time she feels the slightest bit of pain so they'd know she is hurting. I'd set it up so they would admit her because of her crying and the screaming. If a doc admits her through the ER the medicaid would pay it because it's an emergency situation.
The crying and screaming would tell them she is in pain and they'd be obligated to find a solution. They may also have better technology and they have tons of specialists on staff 24 hours per day.
Two thoughts. Ask for an MRI or pay for the scan out of pocket. You may also petition to the doctor for him to ask for a rescan because of a descrepancy in the results. Has she seen GI? Can you take her to a bigger city where they have pediatric specialist/hospitals? Most peds hospitals take children regardless of the parents ability to pay! The only way I would ever consider an exploratory lap on my child would be at a pediatric hospital under a specialist care. Throwing antibotics at it without any fever or other sign of infection is lazy and wreckless. My son got very sick years ago and they kept throwing antibotics at him saying he had bronchitis and respiratory infections. We had him rushed via ambulance to a pediatric hospital one morning when he was screaming in pain and couldn't move his left side. We sat in the ER for 16hrs the first day and they sent him home asking us to come back to ER the next day. We spent 12 hrs the next day and he was worse! They tried to send us home telling us they had no idea why he was so sick, that he might die, but they were all out of answers. I got very aggressive with the team, po'd a bunch of doctors in ER, and demanded they get Infectious Disease on his case. At that point he had gone into septic shock and was deteriorating-results? A tick borne illness that has a mortality rate of 60%. I tell you my story because you need to trust your gut. If I'd taken him home that night, he would've died. The antibotics they had been treating him with were masking the full blown symptoms. Always be leary of a wait and see pill pusher. It's not his kid that is having to suffer through it.
You need to take this child to the ER at a children's hospital.
A quick google search showed several in your area.
We are not doctors and it is not wise to seek medical advice in a public forum.
Take her to the ER at a children's hospital--a teaching hospital if you can.
Good luck!
Take her to a children's hospital or a pediatric specialist. Doctors are not infallible. Something is going on, you need to find out what. My husband was 8 when he lost weight, started vomiting, was tired, and very thirsty. His mother took him to the doctor who said he has the flu, take him home and feed him Jello. A couple of days later, he was in a coma with blood sugar levels over 1600...the highest reported blood sugar with a surviving patient at the time. You are her mother. If you think something is off, it is. There is something on those scans, not a clean bill of health. Call Medicaid, if that doesn't work, call a lawyer.
Have they not tested her blood enzyme/liver levels? I had acute pancreatitis a few years ago, and this sounds so familiar- that burning pain. One of the signs is pressing down on the abdomen with little to no pain, and extreme pain when releasing. It is SO painful and the pain feels like it's everywhere and moves around. I never ran a fever, but did vomit once. It did resolve on it's own eventually. My doctor had no clue why I developed this as I don't drink alcohol or eat a high fat diet. Sometimes it's just unknown.
Might be worth considering.
My kids are also on Medicaid. I was told I could appeal a refusal if needed. Maybe you need to take this route. I also think a full abdominal u/s is a great idea as already suggested.
I was told that the medication my sons take could be refused at some time for whatever reason and the pharmacy would help me fight to get it. If they think it is too soon or we are getting too many doses at one time-- or even not using enough they could refuse it. Unreal. I am looking forward to getting back to work so I do not have to deal with this. I cannot imagine having to do this all the time. There is enough stress being a parent.
I am so sorry! I will be praying for her. Since all else has failed I would immediately remove all dairy, gluten and sugar as much as possible. It can't hurt! Also, it's time to consider an alternative doctor. Look up a homeopath. Again, it can't hurt! People usually go to them as a last result and wish they had done it much sooner. Peace to you both. That sounds so scary as a mom, I'm so sorry! Never underestimate the value of second, third, fourth and tenth opinions. Someone knows.
Take her to the nearest children's hosptial-and good luck.
Medicine is not 100% of the syptoms 100% of the time. I had several inches of necrotic small intestine and a perforated colon and no fever-go figure.
Call the HMO that provides your care. You can appeal their decision, and often it only takes a phone call or a simple form to do so. Often they will refuse an expensive test or surgery at first until the doctor and patient run out of options or push really hard for them to pay for it.
Hi H.,
There doctors are stupid. If her lymph nodes are swollen there is an infection...and if it's contained in the lymph nodes she might not have a fever. This could be anything. Referred pain is common when something serious is going on. Three doctors told my sister to have her gall bladder out and the naturopath said her gall bladder was fine, it was her liver that was toxic. A liver cleanse and no more pain. What she has could be anything. Since the doctors aren't doing anything, I would see a homeopath or a naturopath and pay out of pocket. They read blood work differently and can sometimes diagnose like a fortune teller.
Hopes his helps.
M.
