Saturday, September 28, 2019

Chronic illness in the ER

When home med plans fail, often those with chronic conditions need treatments that require prompt medical treatments not handled in the office. Specialists realize this and often write protocol letters listing when to implement treatment and how. Patients present to the ER where Dr are treating more unknown emergencies and dx problems. Issue is .. we are not looking for their dx skills or even their thoughts on our treatment plan. Both ER provider and patients get put at risk when plans are not in place. 

Recently we presented to the ER for our protocol which is one file and flagged and signed off on at our local hospital. This day however this dr either never pulled up said record or was going to a different way. This I understand, it’s on him. However he could have been upfront and honest I don’t feel comfortable with this, what do you think is best next step? If I had thought lesser meds were only option I would said ok but if that’s the case send us now to pedi floor where those who know him can manage. 

Nope they gave standard protocol and then wanted to discharge. I said he needs to pass the can he move without throwing up test. ( I did not say have your staff come in turn on all lights take blankets and yell migraine kid with autism he had to walk around and go home) I said before you take IV let’s see if he’s actually any better than when he when he got here (which he clearly was not). So he was asked talk which he did barely, and then forced to sit up and stand which of course he threw up. 

( side note after 70 ER and admissions both him and I know when it’s manageable at home home based on is he swallowing, can he open eyes, is he asking for food, is his heart rate below 100, what is his skin cool, and he motion with his fingers pain scale) he communicated all those things without being made to move.

Upon throwing up they handed him off to pedi team finally. Nurses asked why don’t we go to Boston hospital since they treat him. Well this local hospital has successfully treated him for 7 years here. All the pedi staff know him ( knowing he’s good to go when asks for ceremonious cheeseburger and chocolate milk indicating episode is over) why would I want to travel an hour for a staff that has no working knowledge of him?

In the end we were advised again when arrive to request pedi hospital staff to order manage his care. Updated files sent and hopefully next time will be better. I’m thankful we have a team that after 7 years will still go to bat for us and say to others we’ve tried that for years first hand we know it doesn’t work and requires this. We know if you do xyz mom is correct just send him to be admitted. Please help us help them and save us all time and frustration. 

There are those who do get it and those who will advocate for chronic patient care. It involves ER dr who really are needed elsewhere helping those who don’t know what’s going on..or those still searching for treatment plan. I do appreciate ER teams are treating high numbers of patients many psych and addiction cases who are dumped in ER as place to find help but that’s a whole other topic in itself. Let’s streamline chronic kids needs enabling them to stay close to home, and be treated by a team who become like family which removes a level of unknowns for both patient and providers.  
O

Wednesday, January 23, 2019

Growing research .... 2019 Shaping CVS dx

GROWING RESEARCH TREND 
ABOUT CYCLIC VOMITING SYNDROME

        According to Up to Date Cyclic Vomiting Syndrome (B UK Li) Updated March 2018  there are 7 emerging parthenogenesis that are emerging as a result of the last 10 years of study in over 70 published studies. ( Document by subscription or ask your child's PCP for a copy of it. below is just  highlights)
  1. CVS and Migraine-  many have strong family history of migraine and progress to migraine as                                 they get older. about 80% of children respond positively to anti migraine therapy.
  2. Mitochondrial disorders-  disorders of fatty acid oxidation, MELAS and mitochondrial deletions                             can cause metabolic crisis and vomiting when fasting.
  3. Autonomic dysfunction- many also show signs of low tone and meet criteria for postural                                         orthostatic tachycardia syndrome (POTS)
  4. Hypothalamus-pituitary adrenal axis hyperactivity- known as Sato variant with hypertension and                            prolonged episodes
  5. Endocrine (catamenial CVS)- similar to menstrual headaches during onset of period and its                                     treated with low dose estrogen or progesterone.
  6. Food allergy- Sensitivity to cows milk, soy and egg white protein may trigger episodes in                                          children. This relationship is still uncertain.
  7. Chronic Cannabis use- Cessation of prolonged high -dose cannabis has been associated with                                    episodic vomiting suggesting a casual link ( THIS IS NOT TOPIC FOR                                        THIS PARTICULAR POST AT THIS TIME)

  These differences can make a difference and knowledge can help choose appropriate treatments.

             Meeting basic criteria is the foundation piece of leading to better treatments and a cure. Patients need to understand the criteria and discuss with their providers what might be their underlying parthenogenesis. If you do not meet the criteria you might another condition or similar one not mentioned that MIGHT respond to similar treatments.

              Adults see this more than kids currently... patient says they have CVS and do not fit the dx criteria.... and Dr know this ... and tell patient CVS is not real.... Well CVS is real .... the question is ...... IS IT THE CAUSE OF YOUR SYMPTOMS you are presenting with...given your presentation, and other related conditions..... Some Dr use CVS as a distinct condition... other use it for any intense vomiting or pain that they cannot explain.  Hopefully new studies that are currently underway will clarify this ... In the FALL 2018 or early 2019  this is to be clarified with new adult guidelines being published with the help of Cyclic Vomiting Syndrome Association.
Hopefully for adults these clarifications and proper use of them will lead to better quality of life.. But again not all intense vomiting or intense pain is CVS.


Revised Edition Coming Fall 2023

 So much I've wanted to add since the publication in 2014. Hopefully in F all 2023 an updated version will be released.  Quick Update An...