July 11, 2011

Autistic behaviors, Antipsychotics and Angioedema: Warning

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Autism Behavioral Emergencies, Antipsychotics and Angioedema: What Emergency Department Doctors Need to Know!

I’m presenting this information so caregivers/professionals working with non-verbal, self-injurious autistics can be forewarned of serious residual/elusive side effect and potential medical emergency-- following administration of anti-psychotics in treating self-injurious behavioral meltdowns in autism. Here’s our story.

Late June, 2011. My severely-autistic, non-verbal son had been smashing self in face and head for 3 days, despite numerous interventions to stop brutal self-injury. Protective gear was in place (karate helmet, Posey Mitts). Temporary restraints were ineffective (during this particular episode, he was so strong, broke out of restraints). 

Prescribed Rescue Meds Given at home, and which failed to stop self-injurious episode:

1.    Ativan 2mg      1x  
2.    Diazepam 10 mg  1x 
3.    Zyprexa  2.5 mg  1x  
4.    Morphine (to rule out undetected pain fueling SIB) 2mg 1x
5.    Benadryl 25 mg  1x (to rule out allergic reaction—elevated histamine—fueling SIB)

Home investigation included: No obvious mouth sores, dental problems. No abrasions, blisters or lacerations triggering SIB. No recent injury, environmental triggers tied to sudden non-stop SIB. Considered constipation possible factor, as had no BM in 3 days.  Was given suppository. Still hitting after morning BM. Ruled out constipation fueling SIB. Or, possible stomach pain from constipation first triggered SIB, SIB then quickly evolved into full-blown frenzy, even in absence of ORIGINAL TRIGGER, as it common in severe autism. It’s as if autistic person “GETs STUCK” in self-injurious mode. Unclear what is happening in brain for SIB behavior to continue.

Further home investigation noted: No fever. No limping. Eyes clear. Pupils not dilated or constricted. Urine color normal.

After 3 days of non-stop SIB and repeated failed attempts by several home health nurses and myself to stop SIB, son taken to Emergency Room. At ER, son immediately placed in leather restraints and given Geodon. Geodon failed to stop SIB. Desperate, I suggested doctors re-challenge Risperdal. Risperdal failed to stop SIB. In a state of complete panic that this crazy SIB would NEVER end, I then suggested doctor try Abilify. Abilify snapped him out of SIB mode. UNCLEAR if Abilify or COMBINATION of 3 anti-psychotics flooding brain and tweaking brain chemistry FINALLY stopped SIB (alteration of Dopamine receptors? 5-HT receptors?)

Ok, so we thought everything was great now, right? Wrong. Within 2 days, we noticed he stopped eating and drinking and his tongue was swollen. Why? We didn’t know. Suspected Extra pyramidal side effects from anti-psychotics. Gave benadryl. No change. Repeatedly tried to give food and fluids. Everytime he tried to swallow, he gagged. Afraid he’d asphyxiate, we immediately switched diet to all soft foods. No change. Still gagging upon attempt to swallow foods. Why? We didn’t know. He became dehydrated. Back to ER.

At ER again, we encountered a ridiculously inept doctor. Home health nurse and I repeatedly told her to check throat for swelling with more aggressive evaluation. Dismissed our requests, as if we were asking her for a million bucks and ordered a chest x-ray, his 7th in two years. Why is it EVERY time my autistic son goes to ER they order a chest x-ray? Stop. Move on.

Chest x-ray of course normal, as is his temperature and vital signs and CBC (complete blood count, outside of dehydration, low chloride, etc…). IV started to re-hydrate. Well, now we’re onto something….but still NOT resolving why he’s gagging while swallowing (which is totally off baseline for him, by the way, we told latest ER doc). ER kept telling us she “knows about autism.” Whatever the hell that meant, which I suspect means she spent a few moments in clinical with one autistic person 5 years ago or something like that. Anyway, he’s getting the IV and we’re waiting and waiting and waiting and I’m getting really frustrated that ER doctor is NOT taking into consideration his brain was previously flooded with massive amounts of anti-psychotics in the same hospital several days prior and that it is probably the “etiology” of what is happening to throat, as in larynx edema, etc…She dismisses my theory. Discharges him and writes his condition was “cough.” What? I don’t even have the energy to argue over such idiocy. See yaw. So we leave. We get home. He’s hydrated, but he’s still not eating or drinking much, which is no surprise, since the brilliant ER doctor who allegedly knows autism, knew not enough to identify signs and symptoms of something quite serious, following anti-psychotics. Of course, I didn’t know the name of such condition, but I’m a mother, not a doctor, so don’t expect me to. That said, I figured, what the heck, I’ll do my own research. Diagnose him my damn self, I’ve had it.

I spend 5 hours researching, cross-analyzing signs and symptoms, putting the puzzle together. I finally decide it’s something call angioedema and guess what? I was right. Don’t bother to clap, I’m not saying this to impress anyone, just to warn you that sometimes you have to find the answers yourself, and that is one sad situation, since the majority of parents caring for autistic persons have enough stress and grief in their lives and the last thing they need is for some arrogant, dim wit doctor to fail to get off her ass and analyze and investigate what’s wrong. You can’t treat a patient if you don’t know what’s wrong. Maybe that was the plan. Get him hydrated. Get him the heck out of here so we don’t have to deal with him or his mother.

So, I suspect angioedema. It’s soon confirmed by Chiropractor and internal medicine specialist. My son is then given a shot in his butt. Steroid shot. This brings some relief (about 40% more eating, drinking, but he’s still not back to baseline). I put in another call to another doctor. Ask about more aggressive treatment for angioedema. I also call psychiatrist office and inform he’s had this reaction to combination of anti-psychotics. I’m still waiting for call back.

Lesson: Whenever you give NON-verbal autistic patient massive amounts of anti-psychotics, or even mild doses, be AWARE of possible angioedema. One of the ways I discovered this condition is a simple internet search of each name of each anti-psychotic paired with the word “throat swelling” and “not eating” and “edema” and a few other keywords I forgot in my obsessive search to find the problem. And don't pretend that doctors don't use the Internet to research things. They do. So don't mock autism parents for researching on the net. The Internet if filed with valid research. You just need to learn to separate the junk science from the good science. 

Research CLEARLY shows cases of ANGIOEDEMA following administration of guess what? Yep, you guessed right. Geodon, Abilify and Risperdal are ALL linked to causing ANGIOEDEMA. So, next time you have an autistic person who suddenly stops eating or drinking following anti-psychotic treatment, consider ANGIOEDEMA. 

It’s a very serious condition that warrants IMMEDIATE treatment, not a chest x-ray and discharge papers.

Better yet, stick to Seroquel, which doesn't come with the risk factors of other anti-psychotics. Problem is, Seroquel is PO (by mouth) so it's not effective as an emergency med. Why it's not available as an IM injection is anyone's guess. 
Premature discharge from the ED should be avoided. Patients presenting with minor symptoms of angioedema without progression after 4-6 hours of observation may be safely discharged home on a short course of steroids and antihistamines. Patients should be provided with an epinephrine auto-injector (EpiPen) at time of discharge

TREATMENT of ACQUIRED (ie…drug induced) ANGIOEDEMA includes:

  1. H2 antagonists like Doxepin (a tricyclic antidepressant, anxiolytic  (EXTREME caution giving too much, as can exacerbate aberrant behaviors in autism and lower seizure threshold)

  1. Anabolic steroids (danazol) Danazol is a modified testosterone

  1. C1 eserase inhibitor or Kallikrein inhibitor (ecallantide) a protease that frees up peptides involved in angioedema and a selective and reversible inhibitor of enzyme plasma kallikrein. Source: www.ncbi.nlm.nih.gov/pubmed/20830315

  1. Subcutaneous epinephrine if trouble breathing

  1. Antihistamines (H1 blockers)

  1. DO NOT use Beta 2 adrenergic agonist (research shows ineffective for angioedema)

  1. Narcotics (lowest dose possible to mitigate pain) to quell stomach pain common in ANGIOEDEMA
MORE RESEARCH ON THIS ELUSIVE condition: www.haeedu.com/view-content/4/HAE-Resources.html 

Above all acquired ANGIOEDEMA always WARRANTS swift investigation of CAUSATIVE factors so you can DISCONTINUE offending agent. Finally, swift, effective treatment to resolve.

Sources showing angioedema linked to antipsychotics:
1.    There are only a few international case reports related to atypical antipsychotic drug risperidone causing angioedema. We aimed to draw clinicians attention ...www.psikofarmakoloji.org/v2/ozet_eng.asp?ID=329
2.    Learn about the prescription medication Geodon (Ziprasidone), drug uses, dosage, ... (such as allergic dermatitis, angioedema, orofacial edema, urticaria), ...www.rxlist.com › ... › geodon (ziprasidone) drug center
3.    The trade name for this third-generation antipsychotic is Abilify®, ... occurrences of hypersensitivity reactions such as anaphylactic reaction, angioedema, ...hsc.unm.edu/.../pdf/Abilify%20Monograph-Benson%207-2005.pdf
The following information is taken from the Geodon label
  • anemia
  • angina pectoris
5. Angioedema is characterised by oedema of the deep dermal and subcutaneous ... Angioedema/diagnosis; Antipsychotic Agents/adverse effects* ...
Dec 10, 2007 – Angioedema is a hypersensitivity disorder that presents as edema of the subcutaneous tissues and mucosa, typically involving the upper ...
www.hcplive.com/publications/resident-and-staff/.../2005-04_02 -
7. Bulletin of Clinical Psychopharmacology - World's Biggest Open ...  
There are only a few international case reports related to atypical antipsychotic drug risperidone causing angioedema. We aimed to draw clinicians


Anonymous said...

I've hit this medical non-response with bad drug reactions... maddeningingly, they'll brush you off, saying "that only happens in 1% of all cases" - when it's happening to you and yours it's 100%. I'm converting to a gee-whiz, internet connected telephone, so I don't have to wait 'til I'm home to do research...

Anonymous said...

Angioedema is extremely serious--best not to consult a chiropractor regarding this potentially life threatening condition. The emergency department is where you want to be--believe me--been there done that.

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