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Sick niece goes undiagnosed
I’m not sure if this is the right place for this, but I’m trying to find help for my niece. She’s been sick on going for more than eight months multiple trips to the emergency room and continues to get discharged with generalized abdominal pain and other diagnosis that don’t fit, she goes through cycles of reoccurring fever has poor food intake abdominal pain lots and lots of abnormal labs and test. They’ve put her own medication that just mess the symptoms and then send her home. She recently was at chop in Philadelphia and as soon as they got a positive virus test, they dismissed all differential which range from cancer and blood disorders to autoimmune and inflammatory disease , infectious disease diseases. Etc. there’s a long history of autoimmune diseases in the family and she is severely now underweight dropping down to the 6th percentile for her age and malnourished failure to thrive rheumatology has signed off stating that there was no case for a rheumatologist condition they had her set up for a special program, but as soon as they got this ad virus diagnosis, they dismissed everything and chalked it up to that their nutritionist didn’t assessment and specifically stated that she was a severe risk for feeding syndrome and needed an enteral feeding alternative. They wanted to do a 3 to 5 day follow up and put her on specific medication’s two days later they discharged her without doing this follow up without the medication she needed or any of these protocols followed. All of the records show contradictory reports we’ve been over them all and it’s unreal that they missed this stuff and dismissed her with an official diagnosis of generalized abdominal pain. She’s continuously still sick now we followed up with another hospital called Nemours in Delaware and was told call an emergency referral service to see a diagnostic referral team there which we did and was told to bring her down there and ask for a specific person once we did through the ER. We drove more than an hour away only to get there and have them tell this this person didn’t exist that this was the ER. They didn’t do that. Refused to call this department to see if there was any notes or anything about our coming down there when I spoke to this person at length earlier that day and was asked if we wanted to work up for a stomach ache and sent home she was in the current cycling and ill . We are not sure where to go from here or what to do while she continuously gets sick and loses weight. Her inflammatory markers are insanely high, a ferritin level of 255 high CRP levels high ESR levels leukocytosis low by carbs. The list goes on and these are multiple lab work ups they keep coming back abnormal. Her heart rate and blood pressure readings are out of range, but they keep telling us it’s within range without taking in the consideration the fact that she’s malnourished and underweight, which puts her in a different category the other hospital we saw refused to even look at the paperwork that we spent days painstakingly going through every detail we have been in touch with the family relations department in chop and they failed to follow protocol and have yet to respond to us other than to send us a CDR copy of her records. It’s very clearly a negligent situation while my niece continues to get sicker. We have limited resources and my brother and his wife are desperate while they watch their little girl get sicker. She’s seven years old. It’s taking its toll on the family and we’re not sure what steps to take next. Any advice would be very greatly appreciated on how to proceed to get her immediate treatment. The doctor she has seen has given her appointments for specialist, but they are months away and we fear her condition will severely deteriorate. In the meantime, we don’t know what to do next.
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Try to find an earlier appointment with a different doctor if possible. You may have to call around
and travel if it's possible.
Have you used ChatGPT to look for clues, put in all the data you have available. Lab results, age, family history, patient's medical history.....you don't need an account to use chatGPT. Did you see a pediatrician, is the child on any medication, are you treating the symptoms? Compile a record of your clinic visits, date, labs, ....go prepared into the appointments, make notes, ask if you don't understand ..........
@charlotte12 yes we have done all of that. Combed every word of every report, and imput it through A I. As well as researching on our own. She sees her pediatrician. We have new referrals for 6 different specialists. Specified non- CHOP. Gone through her insurance for supposed special needs programs, hard to diagnose conditions, and something called EPSTD i believe, for issues like this. Patient advocacy agents too and it all just circled back to, someone will get back you, and doesnt. Ive hung up and called back to try someone else and still no results. Family Relations dept at CHOP same thing. Had and ent appt yesterday, which they gave her weeks ago, so of course we went and they said she needs to see rhuem, but they already signed off her case in the hospital. Nemours has a diagnosis referral service for hard to diagnose cases, specifically with and er referral service, which we attempted this past weekend only to get there and be treated like they had no idea what we were talking about. Refusing to even look at the info we had. Its very organized, going so far as to compile sheets with stats from all reports and drs notes, labs etc together so they didnt intially have to flip the pages of each one. Medication lists. With the full reports highlighted. Symptoms tracked, dates. The factvshe has dropped to the 6th percentile lost 15% of her body weight since dec and is malnourished and by CHOPS own nutrionists reports at risk and catabolic and was discharged and all differentials dismissed the mjnute she was pos for adnevirus. But their own reports say it coukdnt caise all that or the super high inflammatory markers. In addition she had an appt on march 4th after being discharged 2/26. Labs still that way yet no sign of infections now, all negative. She was also discharged at 1130 at night after they gave her sedative meds saying they needed the room and she had general stomach pain? We will continue to go to any appts already scheduled as they come up and we get nowhere and they do the run around. And im sure more er trips in between. I dont understand how they just ignore their own reports like this or how another facility known for diagnosis and immediate help operates like this. We traveled almost two hours there and then back when the literally refused. I had spoken to someone from the er referral line at length and followed instructions implicitly. Believe me when i say we are doing our due diligence and following all procedures and paths were given… rather than waste anyones times is there a way to bypass the system? Or wait months fo specialists that are just passing it off to one another??
There is also much more info and abnormal labs etc im not lising here, such as hyperexpanded lungs, abnormal urine tests(ketones and proteins) and quite a few more….
Id like to note as well that we are not people that run to the drs for every little thing and only give meds or seek treatment when its neccessary. We have adult children, my neice is the youngest and a later in life pregnancy. My brother and his wife have been at this near a year. If her condition wasnt rapidly deteriorating they would wait for appts with no prob and have been until dec when it rapidly escalated and is still.
IDK anything about children.as I am childless.. however..the situation is urgent..and this is a complete catastrophe and inexcusable!! I have been thru a 6 year ordeal with the weight loss and stomach issues.. so (I'm 72 and test positive for scleroderma)..perhaps you should look at what she is eating.. drinking.. and perhaps any other irritant that might be involved (mostly ingestible.. like dairy.. wheat.. a nurse I know had a niece that had Celiac..and also has she been bitten by a tick?.. we have something dreadful here.. it's called alpha gal.. caused by a tick bite.. can't eat anything that comes from an animal with fur.. at all.. even children are getting it here.. most drs don't know about it.. took years to diagnose Celiac.. simple blood test will tell.. bless your all's hearts! The medical system is horrible!! Prayers!!
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1 ReactionDid not know anything about CHOP - looked it up, it is ranked as best children's hospital in the nation by US News & World Report. Is the ranking of any use?