Special Needs

Our day in the ER

Princess_LilyPrincess_Lily member
edited July 2014 in Special Needs
DS ran a really high fever yesterday, for about 12hrs, which due to his genetic condition can potentially be harmful in infants and toddlers.

When I see DS with a high fever, I have a mental baseline I work with before I pick up the phone to call the geneticist - who 99% of the time sends me to the ER. I'm thinking of going to the ER now, before I call our geneticist. Let me explain...

I took DS to the ER as per our geneticist, and I brought DS' treatment packet. Now the ER doctor evaluated DS and said that while he looked ill, he doesn't see the need for admittance for 24h and further testing (which would stress DS out further).

I agreed, he was an ER/trauma doctor, he has seen a genetic crisis or two. As we were packing up, the geneticist called me twice to reconsider, and to push for intense blood draws and urine samples. She just gave this "its a nationwide protocol" - yes im aware of that, but that means every time my son is sick I go and get blood draws and admittance?!

Based on the ER docs (who was examining DS) opinion, he said he looked fine. All I needed to know.

I've been down this road at least 4x in his life, and I've seen DS much worse, and even then, with all of that testing - has thankfully come back within normal ranges.

I get the geneticists are trying to do their job, but there is a line of disconnect between the patient and doctor sometimes, and these docs need to put the book down and see the child.

My child is the one who will go through the emotional toll of your protocol.

DS' regular pediatricians seem to not know what to do. So their go to is to proceed to the geneicist - maybe its for liability? IDK. Its just frustrating.

Luckily, DS broke his fever last night at 900p and has stayed down even without the help of a fever reducer.

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Re: Our day in the ER

  • Princess_LilyPrincess_Lily member
    edited July 2014
    "How high does his fever get?"
    It was 103.0 and not responding to home treatments for 12hrs.


    " Are you willing to go AMA and risk there being another cause of the high fever? You might want to check that refusing this level of care doesn't expose you to the risk of neglect charges (the docs and nurses are all mandatory reporters) or insurance denial."
    The DS pediatrician ran a strep test, and the rapid is negative but she was sending the culture out JIC. We won't know the results for another day. I told both the geneticist and er doc of the testing. The pedi said to treat as a virus unless there are no changes...and 6hours later the fever was increasing with fever reducing techniques. Thus the calling to the geneticist & er visit.


    Good advice on the check for neglect - who would I speak with about this??

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  • hopecountshopecounts member
    edited July 2014
    medical malpractice is judged based on standard of care.
    If your geneticist did not recommend the testing and stay then your LO got seriously sick then they would be liable.
    Also a specialist has a better knowledge of their specialty then an ER doc so the info and guidance is more reliable.
    It's why my Ped. Endo and now Endo were/are my PCP they know my condition and it's attendant issues it's better to get their guidance then  a generalist who is not nearly as knowledgeable and may give advice that is not best for my specific situation.
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  • Maybe its just time to interview another pediatric geneticist. I'm just not comfortable anymore with this practice. When I have non-antagonistic questions, they make me feel like I'm annoying them.
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  • Princess_LilyPrincess_Lily member
    edited July 2014
    Is it a wise decision to speak with a doctor (for a second opinion), in the same practice as my current geneticist?
    Meh.

    Now, unless I drive 4hrs north, there are no other in-network specialists outside of this one practice.

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  • Personally if it possible I prefer to go outside the practice for a second opinion. 
    Your current doctor may have discussed the case with the other docs or the other doc may ask him about your son when s/he sees him on their schedule and current doc may share their opinion which may bias the new doc.
    Of course if it is the only feasible option then that's where you go.
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  • Princess_LilyPrincess_Lily member
    edited July 2014
    I was thinking to maybe try, but it's something that may be done for our annual check, in 2015.

    So, I did everything appropriate though for his condition...went to the ER. The breakdown was when the ER doc said that based on his observation), there was no need for further diagnostics - even with his protocol packet.
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  • Our daughter had an unknown syndrome causing fevers when she was younger.  While immunology was trying to figure it out every time she had a fever (which was weekly) we had to go to the hospital/doctor for mandatory labs and when she was very young we had mandatory admission until blood cultures came back negative and 3 rounds of rocephin.  

    We found out she had hypogammaglobulinemia so fevers were dangerous to her if she was truly sick bc she had a lack of immune system.  She also was diagnosed with PFAPA which causing fevers for basically no reason.  She was running around with a 103/194 fever acting fine.  However,the labs were still needed in the beginning to make sure that it was from her PFAPA bc it elevates CRP & Sed Rate, etc.  It's also good to keep a check on WBC, etc from fevers because alot of these are signs of pre-leukemia in a child.

    Did it suck going to the ER once a week, because her fevers were ALWAYS at night, and having to explain all of this crap to doctors who were clueless, and pay the copay, hellz yes. But we did it, because I know more that the one time I don't follow orders, will be the one time the $hit hits the fan. 

    If you don't want to follow the protocol I'd take it up with the geneticist, it seems silly to go to the ER to only get a strep test for every fever, if I'm going, labs will be done.  We always had to do a cath too because of her kidney problems.  

    Protocols are in place for a reason, and while i'm an avid believer that not every child fits in the same box for their diagnosis (my oldest is so far out of the box for presentation, i'm pretty sure the box is just gone), you truly need to be 100% confident that YOUR child doesn't need to follow the protocol.  And you can't really be picky/choosy you should decide yes we are going to do this for every fever, or no we'll only do it if it's over X for X amount of time, etc.  

    DD2 practically lived with a fever but our labs were specific, and had to be done within the first few hours of onset, so I could never just wait until the next day.  

    Good luck...fevers and mandatory labs suck.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • Princess_LilyPrincess_Lily member
    edited July 2014
    After my last post I took the opportunity to write down definitions of what to look for when DS is sick according to his medical treatment packet. The statements in the packet are are vague in nature...


    "Fever, poor intake, vomiting, dehydration, lethargy, hypoglicemic etc."

    Based on this very general list, if they have a simple cold/flu they need to be admitted to the hospital.

    For example, for hypoglycemia, I could pick up a monitor at the drug store - so I'm not guessing! I don't have one right now.


    While the doctor provided protocol that is full of medical jargon, with some research and a cross check of information from his geneticist, I may be able to screen DS better of when the right time for an ER trip is. It will bring more confidence of action vs a rough guess, ya know? Right now...I don't have a true baseline except my gut feeling.

    The only trouble I see is the geneticist might provide vague answers - so to avoid a problem. Its worth a shot though, right?
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  • If that is what the specialist is ordering i would do it just to be on the safe side. If your not happy with the level of care it would be worth the 4 hour drive. I drive 9 hours one way to my daughters neurologist. I would also suggest carrying medical files diagnosis recommended procedures etc since your visiting er rooms and not someone aware of your childs medical history. Do you have a paediatric specialist? My daughter has two specialists 9 hours away and 3 in town and they all work rather well with each other. Anything that can be done in town is and sent to them. It helps to cut down on my travel time
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