Discussions By Condition: Allergies

Anaphalactic-tongue swollen

Posted In: Allergies 9 Replies
  • Posted By: Anonymous
  • October 26, 2006
  • 11:56 AM

Please help us- my friend's daughter is in the ICU. She has gone into anaphalactic shock 16 times in 3 days- they finally put her on a breathing tube/ventilator while they try to figure out the cause. She's in one of the best hospitals in the country- but they are all scratching their heads!

Her symptoms- the tongue seems to be the only thing that is swelling, not her throat. She has had hives in the past (once while visiting France last spring after eating eggs) then again while visiting Italy in August. Both of those were treated with Benadryl successfully. Last Friday she had hives from her waist down- was told to use Benadryl again and wait for it to go away. By Sunday morning it was wors, and her tongue became so swollen that she was taken to the ER and admitted. They used an epi-pen. Over the next 3 days she had 15 more tongue-swelling episodes. Each one was worse than the last and they increased in frequency. Further, even when she was on an epi-drip or had just had an epi-pen dose, the next reaction was happening within 3 minutes from the last one. Her tests so far have all been negative for tumors, enzymes, CT scan etc. Blood work is coming as well as GI, MRI. If anyone has any odeas to help, PLEASE respond!

Reply Flag this Discussion

9 Replies:

  • Maybe Idiopathic, cyclical, or another form of Angioedema? Tx with attenuated androgens (Stanozolol, oxandrolone). Diuretics, antihistimines do not help.
    Anonymous 42789 Replies
    • October 27, 2006
    • 01:21 AM
    • 0
    Flag this Response
  • Hello, look up sulfites, epipens have sulfites in them which can cause an allergic reaction.
    Anonymous 42789 Replies
    • November 16, 2006
    • 01:34 AM
    • 0
    Flag this Response
  • Did she eat eggs? Teenagers, unfortunately, are the most likely allergic population to ignore their dietary strictures. Also, egg proteins can hide in very unlikely places - including medicines. An allergist should be evaluating her case.
    Anonymous 42789 Replies
    • January 5, 2007
    • 06:06 PM
    • 0
    Flag this Response
  • How many allergist and Immunologist are working with her?You have to be careful- I am not saying that it is not possible that she has frequent anaphylaxis symptoms. Unfortunately people do have recurrent attacks a few days after the first attack. But sometimes the throat does not swell. Instead the throat start showing spasm and the tongue swells but not enough to kill the patient. She might have an allergy to benadryl- but it is uncommon, or she could be having sever chemical sensitivity to things around her.Are they journaling everything she is eating?Is she start acting like she " is allergic to everything"- she has to be tested ASAP for intestinal permeability. When there is an opening in the guts, the indigested food goes into the bloodstream and the person start being sick like that.She has to be put immediately in a low allergen diet.She can't have any kind of oil or protein molecules going into her body- as lipids and proteins can be deadly to a person in her condition. No tree nuts! wheat, dairy!My family has gone thru these many times- but not as bad.So sorry-Again,it is important to micromanage everything she eats.
    Anonymous 42789 Replies
    • January 5, 2007
    • 06:27 PM
    • 0
    Flag this Response
  • They also need to check her liver, if it is overproducing proteins, it could be an auto intoxication- and she needs to have her blood check for antibodies. Chemical sensitivities don't show in blood tests, allergies to medicines does not appear on blood tests either.She had to be rushed to an allergist long time ago- she is being saturated with antibodies for a while.
    Anonymous 42789 Replies
    • January 5, 2007
    • 06:33 PM
    • 0
    Flag this Response
  • I survived a similar type of disease, but was initially severely misdiagnosed - as psychiatric of all things (not a case on record of this being mental illness based, go figure...) I am a patient advocate now to prevent these things from happening to patients in need of medical help. I diagnosed myself successfully, and my diagnosis was confirmed by top experts in the field I contacted while narrowing it all down with the photos of the swelling, the hives, my labs I asked for (hard to get after what I was put through for months nearly dying) and I submitted the 9-1-1 reports of my respiratory arrests (it got that bad for me - 60 911 calls total.) I arranged to have my own biopsies done where I identified "beaded lumpy veins" up my arms and legs - I got a necrotic artery in the biopsy - so one main issue for me was a vasculitis process, systemic (polyarteritis nodosa, fatal w/o aggressive care.) This particular class of vasculitis is life threatening and often serologically negative. See information on John Hopkins Vasculitis Center web site for more on this disorder. I assume circulating immune complexes have been checked? C1 Q binding levels and C3/4 level to look for possible heredtary angioedema? C 1 esterase inhibitor? Check P and C ANCA also. I had elevated c1 Q binding. Check for Parvo B-19 viral exposure (I was positive), you may not able to find the cause of all this, could be post viral, bacterial or autoimmune (most likely) - identifying the "syndrome" is what matters. I also had positive test for autologous serum challenge - menaing you centrifuge out the serum (liquid part of blood plasma, not as difficult as it sounds) they then inject a small bubble like an allergy test under your skin, and you may flash react to this. I did also. Meaning, I am "allergic to myself." It comes down to forming IgE antibodies to the IgE receptor (high affinity.) This is a way to determine autoimmunity. I have a family history maternal and paternal side of these disorders, do you? This matters a lot. I had a massive chemical exposure years before also. This may be the "switch" for my sytem.The most immediate effective treatment for me was high dose Intravenous Immune Globulin, up 2g/kg body weight. This drug kicked the diseases **s. Needed monthly infusions for 8-9 months. Back this up with weekly methotrexate, like for Rheumtaoid Arthritis, work up to 25 mg a week, start at 2.5-5 mg a week. I also tried plasmapheresis with a little benefit initially but I was so critical by the time I got to the right people finally. I also took other suppression drugs (Cyclosporin for a while.) I survived initially on Epi shots, up to 9 a day (had to beg bargain and steal to get it, even had to inject my own tongue to save myself once from choking.) I actually got a hold of a vile of Susphrine, a 1:200 ratio epi, longer acting, not the 1:1000 in the pens (the 1:10,000 is for cardiac arrests, and veins, all others, sub Q.) Steroids were worthless for me. Even 125 mg IV every 3 hours I'd break right on through. I also used a lot of Benedryl, pills and IM, I learned to do my own injections, 50 mg shots at a time in my muscle. My veins are all trashed from diagnostic delay, I have damage, as I almost died, but I did not believe the crap I was being told that I was crazy, the docs I saw, were just lazy and stupid and too afraiud to admit they were wrong or didn't know something. You have to get to the best even if it means travel. I suggest Cleveland Clinic, Hopkins, Scripps, National Jewish in Denver - I was treated at UW, saw docs at Scripps and Jewish and corresponded with Cleveland, NIH, Duke, Vanderbilt and Harvard armed with my results, pictures and reports. You must take charge of your health and do the homework. If you can't... find smart, studious natural born investigators to help you and learn the vocabulary of your symptoms. Don't be at the medical establishments mercy, they work for you. Don't pay them to scratch their heads or punt you. They get paid, no matter what bone head thing they do to you (or not). There are cases of Kawasaki disease for adults that look like what you are describing. Consider Mastocyosis also (only test to positively rule it out, bone marrow biopsy, and it hurts!) Histimine is in ther mast cells. I doubt it is serum sickness, as you'd have some resolution by now. My guess, it is autoimmune - check the serum, try the mysterious IV IG (immune globulin) and see what that does. I bet it works. Let me know. Email above. I help a lot of people these days, with suggestions for care. I am not a doctor, just a smart patient who survived through a horrific misdiagnosis and dramatic illness by doing the research. Good luck.
    Anonymous 42789 Replies
    • January 31, 2007
    • 06:46 AM
    • 0
    Flag this Response
  • Why didn't they put her on an IV steroid? Anaphylactic reactions can be deadly and usually caused by a severe allergic reaction.She can then figure out what it was that caused by:rolleyes:
    AshleyHH 45 Replies
    • February 12, 2007
    • 05:35 AM
    • 0
    Flag this Response
  • Asprin can make the tongue swell...
    Anonymous 42789 Replies Flag this Response
  • "You have to be careful- I am not saying that it is not possible that she has frequent anaphylaxis symptoms. Unfortunately people do have recurrent attacks a few days after the first attack. But sometimes the throat does not swell. Instead the throat start showing spasm and the tongue swells but not enough to kill the patient. She might have an allergy to benadryl- but it is uncommon, or she could be having sever chemical sensitivity to things around her."I have chemical sensitivities and yes, if I sleep on a pillowcase that's been washed in Tide, my throat swells and my lymph nodes throb till I toss the pillowcase. (I know I have sensitivities to petrochemicals which are btw being massively added to our new bed linens these days.
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.