So Frustrated...

[andersonfam06]

Alright, so DS has had a temp of over 105 for 3 days now. The hospital here is driving me crazy. I mean, I really want to beat my head into the wall

First we take him in and his temp is 104.8, they run labs, and his white count is elevated. Every kind of white blood cell is elevated(his monos, lymphs...etc) They say it doesn't look viral, or bacterial, according to his labs. Tell us not to worry til his temp is over 105, and send us home. Next day we are back, his temp is 105.3... They say wait it out, don't worry til his temp is 106. So, this just seems so incredibly wrong to me. My baby is so sick, acting just... wrong. When he sits, he starts to fall backwards, and catching himself CONSTANTLY! Like he has no balance. He has done nothing but sleep, which could be related to the high temp and just not feeling good, but man...

I was even threatened after requesting some tests. They informed me they could turn me into family services for submitting my son to unnessacary medical tests. It is so frustrating! I want so bad to make him better, but everything I try to do gets slammed back in my face.

I was even told that if they found out I "showed up" in Boise(diff hospital) they'd make sure family services knew how inappropriate it was to have my already sick baby so far away from home.

I just am sitting here crying... I am at a loss. I feel backed into a corner, and the mean mommy is coming out. But, I also now feel like I have to watch my every move!!

[mommida]

Call your pediatrician's office! NOW. The doctor you normally deal with, hopefully knows you better and can get you through some of the red tape of the hospital. Explain that you feel your child is now showing NEW symptoms (the balance problem would seem to be nuerological) along with the extremely high fever.

L.

[Carriefaith]

I am so sorry that your baby is sick I don't know why they are being so hard to deal with at the hospital, but I think that you should call your doctor's office immediately. Hopefully they will help. I hope your baby gets better soon.

[Ursa Major]

How terribly upsetting it must be, to try to help your baby, knowing something is wrong, and being threatened for wanting to help him! What is wrong with those people?

I agree, call your pediactrician. And if he/she is no help, find a new one who is.

I will pray for you and your baby.

[Jenybeen]

Yikes! That's a high fever! When my son had a fever about 104 they refused to let us leave the ER until it was down! I don't understand why they'd let you go home at all...he is obviously sick, and if it isn't viral, then it's something else! They need to figure it out before sending you on your merry way. I would call your ped and see what they say...and go to another hospital if you need to. I mean, he is burning up, you have reason to seek medical attention.

Good luck, keep us posted!

Jennifer

[Nantzie]

Oh my Lord. I would seriously think about talking to the hospital administrator. That nurse seems like she's off her rocker to threaten you like that. ANY parent would be camped out in the ER if their child had a fever of 105. If they're going to be taking that kind of stand against you, they need to explain to you WHY a fever of 105 is okay.

I agree with everybody else. Definitely call your pediatrician. If he gets mad at you for something like this, find another doctor.

I might even call the hospital in Boise and explain the situation. Let them know what they told you (okay, threatened you with) and just tell them what you told us. They may not have the same viewpoint as your local hospital. With all those high white blood cell counts, there should be at least some concern, even if they don't have answers.

Hugs and prayers for you and your baby.

Nancy

[2kids4me]

I am sorry to hear your baby is so sick. Please ask your pediatrician to rule out Kawasaki disease. If the fever is not responsive to tyelnol or ibuprofen, it must be addressed now,

Open Original Shared Link

Print the article and bring it in with you

Most children present because of concern of a prolonged fever. Diagnosis requires fever of at least 5 days duration (though some believe that experienced clinicians may make the diagnosis earlier in otherwise classic presentations). Parents may note that the fever began abruptly. Antibiotic therapy may have been initiated for other diagnoses, but fever persists. The affected child is usually more irritable than would be expected by the degree of fever.

Key historical clues include the following:

Fever

At least 5 days in duration

Often abrupt in onset

Unresponsive to antibiotic therapy, if given

Irritability - Out of proportion to the degree of fever or other signs (Note that aseptic meningitis may coexist.)

Physical:

The diagnosis of classic Kawasaki disease (KD) requires fever of at least 5 days duration and the presence of 4 of the following (if fever is present with fewer than 4 of the following, the diagnosis is established with ECHO-proven coronary artery disease and exclusion of other diseases with similar clinical features):

Changes in extremities (eg, erythema, edema, desquamation): This may limit movement and cause the child to refuse to bear weight. Desquamation of the fingers and toes begins in the periungual region, may involve the palms and soles, and is usually observed 1-2 weeks after the onset of fever.

Bilateral conjunctivitis (not associated with exudates)

Polymorphous rash (not vesicular)

Cervical lymphadenopathy (usually >1.5 cm and unilateral; the least common of all clinical features, occurring in approximately 40%)

Changes in the lips and oral cavity (eg, pharyngeal erythema, dry/fissured or swollen lips, strawberry tongue)

Clinical features

The onset is usually abrupt with a high sustained fever that is unresponsive to antibiotic therapy and lasts for 1 week or longer. In addition, other typical features may be present.

Lips become erythematous and fissured. Bleeding may be noted.

The tongue is described as a strawberry tongue because of the diffuse erythema and prominent papillae.

The neck may be stiff, possibly leading to a workup for meningitis, especially since many such patients are very irritable. Aseptic meningitis may coexist in one half of all patients.

Cardiac involvement ranges from myocarditis and pericarditis with or without effusion in the acute stage to the development of coronary artery aneurysms later in the course.

Other clinical features of the disease may include urethritis, arthritis/arthralgia, abdominal pain, vomiting/diarrhea (one third of patients), sterile pyuria (one third of patients), hepatitis, and gallbladder distention.

Experts now agree that incomplete or atypical cases can and do occur. In this setting, usually in children younger than 6 months of age, fever plus only 3 features establishes the diagnosis. The rationale is that treatment is safe and effective and that failure to diagnose KD may have a significant negative impact on outcome.

To dismiss you as they have done is inexcusable!

** I had to return to the doctor 3 times , then referred to a pediatrician, by the time we saw the pediatricna who recognized it - the damage was done and we had to treat for coronary artery damage instead of preventing it. **

I do not want to scare you but if I had heard of kawasaki or knew the symptoms before - I would have been more assertive

[Nikki2003]

That is so awful. I would think it would be the other way around If you didnt take him in they would call,but not for caring. That is wrong. I would definetely call the ped. He could get very dehydrated from that fever.

The hospitals around here would never say that. Wow I am at a lost for words with this.

I would call the ped and just make sure to keep him hydrated.

And find out what the elevations mean exactly if they are not viral or bacterial. I know a friend of mine's daughter ahd a fever for 5 days and she wound up having Kawasaki disease. With that you have to catck it early,Or it will get much worse and effect the heart.

Celina

[Guest nini]

I am at a loss for words as well. When my daughter's temp reached that high I drove her straight to the pediatrician's office WITHOUT an appointment and camped out until they took her. Fortunately they took it seriously too and took her back right away. She was severely dehydrated and they had to get her rehydrated before they could even run tests to find out what was wrong. In that case she had a severe Urinary tract infection, but you never know. I can't believe the hospital staff is threatening you that way for trying to find out what is wrong with your child. That is just wrong. Don't let them intimidate you. Call your ped.s office, call the hospital administrator, call another dr. if you have to. Good luck.

[key]

I really don't understand why they are treating you this way. I am an RN and a fever that high with all his other symptoms seems crazy to not admit him. YOu have to find a different hospital. Are you taking him to a children's hospital? What state do you live in?? Was his blood work considered "normal"? Did they test for menengitis with a spinal tap?? Are you alternating tylenol and Motrin to keep his fever down some??

I can't see how they can turn you into anyone for going to a different hospital? None of it makes sense to me. Most of the time they are overly cautious, because they don't want to be sued!

I really hope he and you both get the help you need. Keep us updated.

Also, you could try and find a hospital on-line that specializes in the area you are needing help in. Talk to them on the phone and see if they have any advice for testing to find out why he has diarhea, etc.

Monica

[andersonfam06]

So, the problem is that we have military insurance. Everything that we have one outside of the base hospital requires a referal, or we pay out of pocket. So, the threat about showing up in Boise occured after I requested a referral to take him to the Chilren's hospital ER.

The one that continually keeps sending me home isn't the ER, it is his PEDIATRITION! That is what is so frustrating. The ER was the ones who did the first night, with the 104.8 temp. From then on, it has been his pediatrition.

His temp is lower today. Still in the 103's, but not 105's. And the tylonel and motrin(which I am alternating, despite a 10 minute long lecture from my ped about how i was going to fry my son's kidneys) seem to at least keep it from going higher, even when it doesn't lower it.

I am also horribly frustrated by the fact that his Ped GI doc told me that I had til the 21st to "fatten him up". so, yeah, he has gained 5 ounces... and now he has had a crazy fever for 4 days, and lost that plus some. so we are below our starting point now! it is like 1 step forward and 2 steps back. and it seems like there isn't a medical proffesional out there who understands my frustration.

[Nikki2003]

Oh so its the ped that is telling you that? Can you get a new pedi? Or is that dr the only one? That is bad. I would call someone and tell them the dr is treating you like that. Or maybe get someone like an official to refer you to go to the ER? I am just guessing here.

[2kids4me]

is there a chaplain on the base, or some one who could authorize you to take him elsewehere?? The fever not responding to tylenol or ibuprofren is screaming Kawasaki (oyu said it didnt bring it down but kept it form going higher).

It is life threatening illness, Please get some help - other families on the base - esp ones married to "higher ups" , knock on their door, show them info, let them know how worried you are and why. If this IS Kawasaki - and it is missed - your child pays the price.

I know, since my daughter, although "recovered" - it was a 6 month recovery from joint pain, fatigue, exhaustion, come and go fevers, irritability, and aspirin therapy, 4 echocardiograms and many sleepless nights. if she had been diagnosed in the fist week - they could have given IVIG and prevented the devastation inside her blood vessels.

I dare them to call social services - the first thing I would do - is show them info about a life threatening condition and ask why it is considered abuse to find out why a child might have fever that wont stop and the chidl is deterioating. Bring others with you - support in numbers, suddenly they see others comig in - its hard to fight a crowd who all think a baby is sick...... well that may cause more trouble ... I am at a loss.. I live in Canada and fortunately had pediatricina hwo diagnosed it.

Contact:

Jane C. Burns, M.D.

Chief, Division of Allergy, Immunology, Rheumatology

Dept. of Pediatrics-0830

UCSD School of Medicine

9500 Gilman Dr.

La Jolla, CA 92093-0830

Tel.: 619-543-5326

FAX: 619-543-3546

E-mail: jcburns@ucsd.edu

You can email her / call her and get her on your side - explain the situation - she has helped others like you who needed help getting the child diagnosed.

[Nikki2003]

How is he doing?

Celina & Nicole

[tarnalberry]

*hugs* I have no advice, but am sorry you're going through this. It must be absolutely frustratingly awful!

[Nikki2003]

The last time nicole was sick,Which was on june 9-12th she had consistant fevers from 101-105.3 which it was lower only if she had motrin in her,Then as soon as it wore off the fever would spike again. I took her into the ER here and she was real sick looking her BP was even high and her heart was racing. They did blood work and everything looked fine they said. I was just real worried about the bp and she wasn't drinking. But still sent her home. I was more upset that they sent her home with a bp of 127/93 and her heartrate was 180 or so she is only 32 months old. I know when they are sick it goes up,But not that much. But we never knew what it was. That was the only high fever that lasted for 3 whole days. A dose of motrin on the last day and it didn't come back. I hope he gets better soon,Their is nothing worse when your child is sick and you feel helpless.

[kendra]

My heart goes out to you as well. We are also a military family and understand how helpless the doctors can make you feel. Please, trust your mother's intuition if it is telling you something is wrong. My daughter ended up being air lifted from one hospital to the next and was diagnosed with type 1 diabetes. I had experessed concern to her ped. at the military medical facility at her check up less the a month prior that she was getting up too often during the night to go to the bathroom and she had dropped 2 sizes is clothing, but they dismissed those (now I know) warning signs of high blood sugar. The day she became so sick, their computers were down and they and the scheduling people were not returning calls. Something inside told me the was more serious and I took her to the ER (in network). They airlifted her to a hosp considered out of network because of the situation. It feels like a daily battle with the referral dept. or pharmisist, or pediatrician, but I have learned to be as confrontational as I need to be to get both children the best care possible. Don't let them intimadate you, our husbands may be in the military, but me and my children refuse to bow to any rank concerning health issues. You should email your patient representative and request your email be given to the commander of the hospital. I do believe they try to provide us better quality healthcare, but we have to let them know when these kinds of things go wrong.

Good luck and God bless,

Kendra

[andersonfam06]

He seems to be doing a little better today. His temp isn't nearly as high this afternoon as it has been. He is still not eating really... But he is drinking okay. I am thankful for that. I am requesting that they test him for West Nile Virus. I am usually not one to get caught up in hysterics, but we have found 6 dead birds in our yard in the last 2-3 weeks, and a coworker of my friends has just been diagnosed with similar symptoms...

He is still not acting quite like himself. But he doesn't feel well, so we'll see. Thanks for the thoughts everyone, and for letting me vent.

[jennyj]

You are in my thoughts and prayers. It is a scary experience when you have a child with a high temp. When my youngest was 4 months old I took her to the ER with a 104.9 temp. and the doctor there told me that the only thing wrong with her was she had an overprotective mom and to take her home and let her cry it out. The next morning I took her back with the same temp. and told the ER if they were not equiped to care for a sick child that I would take her elsewhere and she was admitted for 8 days with pneumonia and croup. I came close to a malpractice suit.

[Judyin Philly]

i'M SO VERY SORRY YOU AND YOUR CHILD.

IT IS JUST TRAGIC THAT WITH A FEVER OF 105.3 YOU ARE THEM TOLD HAS TO BE 106..I'M AFRAID I WOULD HAVE 'HURT SOMEONE' AT THAT POINT.

ALSO SO TRAGIC, THAT THE MILLITARY IS KEEPING ALL OF 'US' SAFE AND THE MILLITARY HOSPTIAL IS NOT KEEPING THE 'FAMILIES' OF THE ONES PROTECTING US .....S A F E.

I HOPE YOU CONTRACT THE DR. SOMEONE GAVE YOU ...MAYBE NOT THE DISEASE YOUR SON HAS BUT MAYBE SHE CAN HELP YOU WITH THE 'THREATS' THAT IS IN EXCUASIBLE...

HUGS AND PRAYERS

JUDY IN PHILLY

[Gcbec]

Please Please, Be careful and get to another dr. I will garuntee that if this dr made the threat, she/he is up to something more. I would find another peditrician, and I would also call and put in a complaint with insurance company if possible. Another thing I would make sure you get documentation of the fever and blood work and any tests that were done IMMEDIATLY. They are trying to say you have Munchausen syndrome by proxy, and putting your son through unnessisary medical tests, and a dr that reports it will and can have your child taken away. I do not mean to alarm you, but just because he is feeling better doesnt mean the next time you need to take him to the dr that this will not happen. I know this because it has happened to me only I was given no warning to there plan, CPS showed up at my door and my kids were gone and we still dont have them back. And all my husband and I were doing was trying to figure out what was wrong with my son. If I was told back then that they were going to call and they threatened me, I would probably gotten all my records immediatly then called an attorney.

Good Luck I am Praying for you, I do not want to see another family go through the trauma we are going through right now.

CIndy

[TCA]

I can't imagine the horror of having to deal with the fear your child may be taken away while dealing with these health issues.

I am praying for both of you and your kids.

[Nic]

Hi, how is your son doing now? Did you ever get clarification from that doctor?

Nicole

[andersonfam06]

Lanigan is doing better. His doesn't have a fever anymore, but still has a rash and NO appetite. No, we haven't gotten clarification for Doc... what stinks is that he had gained 5 ounces, and then when he was sick lost all of it plus some... boo...

[Judyin Philly]

STILL NO DX???

AT LEAST FEVER IS DOWN.

HANG IN THERE

JUDY