I was watching an oldie but a goodie Hospital Day 1 and wow, this video was informative! This is the beginning of her "severe anaphylaxis" attacks, note in the video, she has no evidence of any type of anaphylactic reaction. Janeice and Paul also treat us to a view of her "medical protocol" . Medicine List is at 11.03 but I couldn't get a clear image on my screen. All I could make out from it is she is taking magnesium and Vitamin C. -
https://www.youtube.com/watch?v=Dl5-sbyoypU
It is also very interesting how she discusses pressuring her doctors for IVIG therapy, but in the end "It's ok because I'm seeing my local POTS doctor next week and she will be on board with it". Very suspicious, is this "POTS doctor" signing off on all these unnecessary "treatments"? The doctor signing off on her anaphylactic "protocol" is an internist whose personal statement on his site includes
"I strive to give compassionate patient care, while offering patients the latest in medical and device therapies."
Full Transcript
If Jaquie has used one dose of epinephrine, I advise the following cocktail to best suit her medical needs.
- 40 mg IV Solu-Medrol
- 50mg IV Benadryl
- 20 mg IV Pepcid
- 8 mg IV Zofran (if she is feeling nauseous)
Observe her until the epinephrine wears off (4 hours). If she is stabilised and shows no further symptoms of allergic reactions, then she is most likely safe to be discharged. If Jaquie persists with allergic reaction symptoms or requires another dose of epinephrine, she is in an acute anaphylaxis flare. If she has used two doses of epinephrine within 24 hours, this is also an indication of an acute flare. I advise that she be admitted to the hospital and placed in an area with personnel equipped to handle aspiration and intubation. I also advise that she be given the following medications:
- Continue all her regular medication, excluding Xyrem
- 25mg oral Benadryl around the clock for 3 days
- Oral prednisone (?) of 40mg (?ph?) opt for 3 days
- 20mg IV Pepcid for 12 hours
Reaction Protocol
- 50 mg of IV Benadryl (If this aborts the episode, skip steps 2. And 3)
- 2. 3 (?) mg IM Epinephrine
- 3. 1mg IV Ativan- Epinephrine aggravates Jaquie’s POTS and may cause excessive tachycardia, chest pain and syncope. IV Ativan helps to alleviate these symptoms.
- 4. Breathing Treatments and Oxygen as needed.
I strongly advise that (can’t read this paragraph clearly but something at the end about being discharged with IV Benadryl as needed)
Jaquie’s Rare Disorders
- Idiopathic Anaphylaxis. This is her current diagnosis although we strongly suggest MCAS (Mast Cell Activation Disorder). With MCAS, the bodies mast cells overreact and release excessive amounts of histamine, leading to severe reactions. When Jaquie is at her baseline, she can abort her reactions with home use of Benadryl. During an acute flare, she will experience frequent, recurrent anaphylaxis that require epinephrine. The risk of aspiration increases greatly as she often vomits during an episode and has come close to needing intubation a handful of times.
- POTS (Postural Orthostatic Tachycardia Syndrome)- A rare form of Dysautonomia in which the autonomic nervous system cannot regulate blood flow correctly. Symptoms include dizziness, weakness, shortness of breath, blood pooling, severe heat intolerance, syncope and more. Her allergic reactions and epinephrine both cause her POTS to worsen.
- EDS III (Ehlers-Danlos Syndrome III)- A connective tissue disease in which the body cannot properly produce collagen. Type three is hypermobility type, leading to Jaquie’s joints having a very wide range of motion. She will occasionally experience dislocations and subluxations. Although she has chronic pain from her EDS, she does not take prescription pain killers.
