DD just called from Cuba. She had an anaphylactic reaction, cause unknown. She had one epi-pen with her and used it. She was treated, GiVen some ind of injection, and they put her in prednisone again. Problem is she only had one epi with her. The doctors there have no idea hat an epipen is, apparently they don't have them there. Does anyone know how she can get an epipen or other form of epinephrine injection in Cuba? Since she has no idea what she reacted to, she cannot avoid, and I am going out. Of mind thinking she will react again without an epi. And the closest hospital is 20 minutes away.
Oh goodness.
Let me think.
Do you mind if I tweet this and ask for help? We have some international followers.
Fine. Anything that can get n answer. I am on hold with her school right now. They are trying to get what info they can from their end.
She could get a script for epinephrine and a syringe.
She could get enough for four doses.
I am also asking an international relief friend I have.
Oh no! How much longer is she there? Is it possible to express mail some to her? Or get her home asap? So sorry, I can't imagine how stressed you are.
Background: this young woman has no known food allergies. She only had the EpiPen because she had reacted strongly to a required vaccine two weeks before the trip.
Can she radio someone in US SOUTHCOM? Navy or Coast Guard should be operating in the surrounding waters. http://www.southcom.mil/Pages/Default.aspx (http://www.southcom.mil/Pages/Default.aspx) I've never cold called them only my father's direct line. I wish I could advise how to best navigate them. I only know the area they are assigned.
I would call Lifeflight (Air Ambulance worldwide), that's the closest I can think to an evacuation. Civilian medical transport to military to get back to at least Florida. http://www.airambulanceworldwide.com/air-ambulance-havana-cuba (http://www.airambulanceworldwide.com/air-ambulance-havana-cuba)
Quote from: Macabre on January 23, 2014, 04:05:53 PM
She could get a script for epinephrine and a syringe.
She could get enough for four doses.
Yes--individual ampoules and sterile buffer for reconstitution, though, otherwise they won't be stable enough for use, probably, in the heat. She may also need to be prepared to keep them with a cold pack to keep the drug stable anyway.
I just got off the phone with someone at her school. Someone from the international dept. is looking into what her option are, calling their insurance company to see what is available in Cuba, etc. she is supposed to leave Saturday morning. Tomorrow is just a day of beach, shopping or whatever. Basically free time. I know there are no commercial flights to the US until Saturday. They only fly two days a week to the US. DH was thinking that maybe she could get a flight to Mexico or Canada, then fly home from either if those places. But that would mean flying alone, without an epi, which could be worse. At least, if she can make it until the flight Saturday, Cuba to FL is a very short flight, then she could get an epipen.
Have you tried the air ambulance service out of Havana Cuba? I linked above. They might be able to fly her from hospital to hospital on med transport, or at least to maybe the nearest ship or base that can and will take a US citizen in need of medical evacuation.
Thanks TT. You posted that while I was writing my last post. I started, then was on the phone and restarted.
Do we have any members here in Florida that could get an epi to the airport?
What did they inject her with at the hospital - epi? Can they give her some already loaded syringes (and an ice pack to keep them cool) to take with her?
:grouphug:
Are her steroids liquid form or pills? At the very least she probably should have liquid steroids available for the flight. If she needs more, then it would get into her bloodstream faster.
Can they get her some needles and a vial of epinepherine? She's going to need a dr's note to get those back on the plane.
Hugs to you guys! This is awful!
Just noting option #2 with Air Ambulance is a medical escort on commercial flight. They offer nurse or flight paramedic with minimal 5 years critical care experience if I read that correctly.
Commercial Air Medical Escort (http://www.airambulanceworldwide.com/air_escort.php)
Or reserve a stretcher block on commercial airline.
Commercial Airline Stretcher (http://www.airambulanceworldwide.com/commercial_airline_stretcher.php)
I just got off the phone again. Apparently they have epinephrine at hospitals there, but not in any form that can be taken away and given elsewhere. What they had given her was a hydrocortisone injection, and prednisone. I think the pred is in pill form. I did not ask, but I think DD probably would have mentioned if not. TT, I have yet to get a good look at that link. Every time I try, the phone rings again.
I had tried calling DD again, but could not get an answer at the hotel. I feel so overwhelmed. Every time I get off the phone, I feel the details of the conversation start to leak from my brain. I am shaking so bad. And feeling sick to my stomach and crying. I have never been through anything like this. Even when DS had his first reaction, at least I knew what it was to, he s with me, and, not knowing much about allergies, did not think it was as serious as it was, so did not panic.
:grouphug:
:heart:
Is anyone with her? Is there someone who can check on her if she is alone?
I wonder if they have the old-fashioned bee sting kits in Cuba? It's epinephrine, it's what we had at my house growing up --- pre Epipen days!
Can one of the teachers (or you) call the US Embassy/Consulate in Cuba for assistance?
There is no embassy or consulate. No diplomatic relations between US and Cuba. If they were to have a problem that would require going to a consulate, they were instructed to go the Swiss consulate. The US has an agreement with them since they are a neutral country.
Hedge, I called. It would take some paperwork but they can do it out of Cuba to Miami. Transport includes ground service ambulance once they get her she never leaves medical care until she gets into a "receiving facility". Air ambulance contact I spoke to is on stand by. She knows mom is needing help on options of getting daughter out. Daughter is there from anaphylactic reaction, is stable, no access to epinephrine.
They are only allowed to fly during daylight hours. The whole service is bed to bed starting with ground transport when she would be picked up via their ambulance. It would then be a flight with at least 2 staff to monitor her the whole way to the "receiving facility" which must reserve a bed for her or there is a punitive fee of $25,000 to do what is called "patient dumping". But they have private contacts in Miami at Jackson Memorial they would work that out before arrival. Arrival is a private hangar with further ground transport to hospital. A private residence is a possible destination with prior approval.
DD will need her med report, her passport and I think the facility that she would be picked up at. There is some process to all of this but the next day hours she could be on her way to Miami.
PM me for contact name and number. I told her I was a friend calling on a friend's behalf.
I don't think we have an embassy or consulate in Cuba. I think it's a US Interests Section.
Oh nevermind...no US Embassy in Cuba b/c of the embargo and things.
Not to worry you - but there may be other issues for her to have access to things being a US Citizen and not breaking any embargo laws. The group she went with is probably a licensed travel group? Try to work with them (not just the teachers/chaperones.) I was reading there are loads of issues with US citizens spending even a penny in Cuba and breaking the embargo!
Medical flights take time to arrange. She will be home by the time you could make that happen.
Make sure she is not alone and that the school person there knows what is going on.
I PM'd you.
Embassies are for paper work. Someday I will tell you the story of my cousin and the embassy lol.
Did you get her the special emergency travel insurance that can get one out-of-a-country and to home soil? Some credit cards carry that protection as well...
Can the Swiss consulate somehow get meds flown in from Miami for her?
Plan B maybe?
If she reacted to food/drink (though she doesn't know exactly what) --- she must know some of the basics of the meal or snack she ate. I'm sure the teachers can get her plain plain food like rice and plain cooked meat in foil (no spice) until they leave?
Thank you everyone. I am waiting for a call back with options. The school's insurance company was looking into some things like somehow getting epinephrine to her. I tried calling DD back to find out how she feels about the various options we are thinking of, including trying to get her home early. But the first time, the hotel did not answer. The second time, she was not in her room. I really want need to get her input in this. She is 18. I cannot make a decision without her.
:grouphug:
Popped in for one more posting. Checked WAO World Allergy Organization for a member allergist in Cuba.
I have no idea where that medical center is or if he'll see her or will prescribe any sort of epinephrine device but worth a try if near Havana.
QuoteAlexander Diaz Rodriguez, MD
Allergist, Professor of Immunology
Jose M Segui Medical Center
Havana, Cuba
Second address has different city
Alexander Diaz Rodriguez, MD, Medical Center: José Manuel Seguí, Artemisa, Cuba
This one is a reach but it has direct contact information
QuoteCuban Society of Immunology
Alergia
Presidente: Dr. Alexis Labrada
BIOCEN
E-mail:labrada@biocen.cu
Secretario: Lic. Mayte Mateus
BIOCEN
E-mail:mayteemm@biocen.cu
Tesorero: Lic. Arelys Más
BIOCEN
E-mail:arelys@biocen.cu
http://www.sci.sld.cu/documentos/alergia.xls (http://www.sci.sld.cu/documentos/alergia.xls)
Tried again to call DD. still out. But I spoke to one of the chaperones. They had already decided DD is not be be alone. She is to be with someone at all times. She also said they have told her they don't want her going to the beach tomorrow, which is where most if the group had wanted to go (tomorrow is a free day for them). She said there are students ho are willing to stay behind with her. Also that one of the two chaperones will stay behind as well. They are looking into the flight options for tomorrow. I don't want to make tat decision without talking to DD. but I would feel so much better if she got home tomorrow morning. And she would not fly alone. One chaperone would go with her, the other would stay with the group. That is also a relief.
DD is supposed to check in when she is back from dinner, and she will have her call me then.
Thank goodness she had that epipen with her to begin with. I wish she had brought the other one as well, but considering she was prescribed it a week before going, and she had NKA, I feel lucky tat she even had the rx, never mind that she brought it even though she never thought she would need it.
Hugs.
I wish I could be more help. :(
I have no ideas or suggestions other then what is already mentioned. Just wanted to let you know I am thinking of you and her tonight. :heart:
Quote from: hedgehog on January 23, 2014, 03:57:03 PM
DD just called from Cuba. She had an anaphylactic reaction, cause unknown. She had one epi-pen with her and used it. She was treated, GiVen some ind of injection, and they put her in prednisone again. Problem is she only had one epi with her. The doctors there have no idea hat an epipen is, apparently they don't have them there. Does anyone know how she can get an epipen or other form of epinephrine injection in Cuba? Since she has no idea what she reacted to, she cannot avoid, and I am going out. Of mind thinking she will react again without an epi. And the closest hospital is 20 minutes away.
No advice that's better than what you have already gotten. Thinking of you both and hoping she returns home safely tomorrow morning. Hang in there! :grouphug:
She will not be returning tomorrow. Part of the decision is how long and how many connections it would take. Similar to the mom getting in minutes before the family in Home Alone. And Part if it is getting through customs from Cuba with a last-minute change of itinerary. The chaperone will be calling me again tonight. But it looks like she is sticking it out one more day before coming home.
Tomorrow I will be doing my best research to find a pharmacy near her connection, so she can hopefully get an epipen there.
hedge,
don't know where she'll be coming into US, but if you know one of us is in city at/near that airport, perhaps we could get a pair to her at airport from our own, if you are unable to get Rx via pharmacy?
Can you post what city she flies into when returning to US before she connects on?
Good idea.
I hope you get some sleep tonight. I'm so sorry this happened. I feel for you. I will keep you posted.
Home Alone, yeah that is my embassy story. Turns out the Canadian Embassy in the Cayman Islands, is in Jamaica which is not particularly convenient for getting replacement passport which are only required because you have a flight that stops in the US. Take a very inconvenient and expensive side from to Jamaica or your pay for another flight for six year old to fly home alone on a direct flight bypassing the US and which leaves after your connecting flight.
Just seeing this now. No advice to add, just :grouphug: .
Quote from: hedgehog on January 23, 2014, 05:40:18 PM
There is no embassy or consulate. No diplomatic relations between US and Cuba. If they were to have a problem that would require going to a consulate, they were instructed to go the Swiss consulate. The US has an agreement with them since they are a neutral country.
This sounds like the kind of situation that might qualify.
:-[
I'm just aching for YOU, Hedgie-- for her to be so far away and this happening where you can't really be there and see that she is okay. Every time you get off the phone, I'll bet. I sure wish that there was some way for her to just come home NOW-- and to carry epinephrine while she is doing it.
It seems really clear that she shouldn't be without it even for the duration of the flight. :grouphug:
Just got up. Surprisingly I slept. In fact, I fell into a deep, dreamless, uninterrupted sleep, unlike the restless interrupted the I usually get for the last 15 years. I woke early, but much more rested than usual.
Thanks again, everyone. I never thought I would have to worry about DD like this. DS, sure. He has had multiple issues, PA being just one, since he was a toddler. But DD never had any chronic or serious health issues and has always been so independent that I knew she was just going to go away and be fine. Better off than I would be in the same situation, even.
Turns out she has a six hour layover in Tampa. I already called our CVS where she got her epipen rx filled to begin with. They said it will be no problem fir them to transfer the rx to another CVS, and if the closest pharmacy to the airport is another one, they can transfer tat too, just slightly more work on their part. The chaperone also said there might be a clinic in the airport, so I can look into that first.
I have to do all the re search because they have no Internet and very limited phone. Not that I mind doing it. It's just frustrating that I have to find out what I can, then try to to get in touch with them, or worse, wait for them to call me. And even calling them is very hit-or-miss on actually through. Sometimes the call gets to the hotel, sometimes not. The connection is sometimes good, but some times pretty bad and hard to hear. Then if who I ask for, whether DD or chaperone, is not in the room, there is no way to leave a message or get the call back to the hotel operator. I just have to hang up and try again. It's like going back to my childhood in the 70s, communication-wise.
I'm glad you got some sleep. I imagine your body was reeling like never before--in response.
So professionally, when I lived in big cities, I used courier services all the time. It was more cost effective for someone else to run across town, you know?
Just remember that as an option for getting the epis to the airport. I think her going to CVS would be preferable, but keep that in mind. You can google them.
Just ((hugs)). I'm really sorry for the hell you've gone through. I can't imagine.
Yeah, we talked about a courier while waiting to hear how long her layover was. But with six hours, she may actually want something to do. Even if the flight is late and it takes three hours to get through customs (they estimate two), there should still be time to get to CVS, get back and through security, and still make the connection. There are four CVS locations within three miles of the airport, so a quick cab ride. And a chaperone would be going with her.
She should get liquid Benadryl while she's at the cvs. Like the giant bottle.
Good idea. Or pick some up in Cuba today. She does have some, but pills. We bought it just before her trip.
I'm sorry that happened. Thinking of you.
Liquid Benadryl--3oz.
As don't have any American brands in Cuba, I have someone looking into what she would look for there. He is also going to get back to me on how to say anaphylaxis and epinephrine, in case she needs to seek care again.
Just seeing this today. :grouphug:
I'm guessing you feel so very far away.........................She may be 18, but she's your babe. So sorry this has happened and I'm hoping there are no more reactions.
Oh wait I have the Spanish. Brb
Brb?
Be Right Back. Means she's getting it.
Just checking in. Got a few minutes so making another Google-fu round on epinephrine in Cuba. I figured an American product won't be on market so I stuck to the other names like Jext, Adrenaclick. All I can come up with are the allergist names.
Other thoughts go to intl relief orgs as starting points to track it down.
Cuban Red Cross (http://www.ifrc.org/en/what-we-do/where-we-work/americas/cuban-red-cross/)
QuoteAddress:
Calle 20 #707 entre 7ma.y29 Playa
Ciudad de la Habana
C.D. 11300 Cuba
Ciudad de la Habana
Postal Address:
C.P. 10300
Contact Information:
Tel: (53) (7) 206 10 55/206 14 03
Fax: (53) (7) 206 10 58
Telex: 511149 MSP CU para Cruz Roja
Telegram: CRUROCU HABANA
Email: crsn@infomed.sld.cu
Web: http://www.sld.cu/sitios/cruzroja/ (http://www.sld.cu/sitios/cruzroja/)
I also took a short stroll on expat/travel forums. One guy recommends taking cabs is faster than the run down ambulances. There's a good chance that varies by geography.
We used this in Mexico. And Texas, lol. I will paste all and then edit and take out what's unncessary.
My son/daughter is allergic to peanuts. He cannot eat even one peanut or one drop of peanut oil or any peanut products. Eating them could cause his death.
Mi hijo/hija tiene alergia a cacahuetes. No puede comer ni un cacahuete, ni una gota de aceite de cacahuetes ni productos de cacahuetes. Comiéndolos puede causar su muerte.
Does this food have peanuts or peanut products in it?
Esta comida tiene cacahuetes or productos de cacahuetes?
Are there any nuts at all in this (food)?
Esta comida tiene algún nuez?
Was this fried in peanut oil?
Está esto frita en aceite de cacahuete?
Was this made with peanut flour?
Esto tiene harina de cacahuete?
I need to call an ambulance.
Necesito llamar una ambulancia.
Where is the hospital?
Dónde está el hospital?
It is very important that you bring epinephrine.
Es muy importante que traigan epinefrina.
This is an emergency. We must get to the hospital in 15 minutes or my son/daughter could die.
Esta es una emergencia. Tenemos que llegar al hospital dentro de 15 minutes or podría fallecer mi hijo/hija.
Anaphylaxis
anafilaxia
Okay--I kept the top part for future use, highlighting the words for peanuts and nuts. The stuff below the line would be applicable.
It's possible that there are some regional variances (this was translated for me by a friend who has a very successful court interpretation business in Dallas--she was born in Mexico), but the basic stuff should be understandable.
Just seeing all of this. OMGoodness. I'm sorry you are going through all of this; so glad your DD is okay after that reaction. I hope you are able to get her home very safely. TG you were able to sleep so that you are able to continue today. TG there are so many people here with good info and help! SOAK, right? :yes: Big, Big hugs to you. :grouphug:
Thanks. Unfortunately I have no way of texting or emailing (they have cell phones or computer access) so I will have to limit whatever translations I give her to what she can get over the phone. And she never took Spanish (she takes French) so that makes it harder.
And thanks, TT for all the research you have been doing as well.
I just got back from CVS. They are filling it now so it will be ready when she gets there tomorrow. I already texted the address to them so when they land and turn on their cell phones, they will have it.
As long as she survives the next 24 hours or so, she will be fine.
:smooch: Hang in there Hedgie.
I don't have any advice, but I'm so sorry that you and your dd have to be in this difficult situation.
:grouphug:
Mac, another word for peanuts in Latin America is mani. (I have no idea how to get an accent mark over the "i".) I'm not sure which word they use in Cuba.
(((Hugs))) to you HH.
I know we can't do much more but if you need last minute multiple phone calls to make don't hesitate to delegate. I am at your/her service and I'm far from alone on this. #TeamFAS
She called. It had to be a quick call, so I gave her all the info I needed to. She said he feels really good, which is a bit of a relief. Of course,I can't thinking that its not a matter of how she feels now, but how she feels if she is again exposed to her unknown allergen. But feeling good now is at least better than still feeling the effects of yesterday.
I got a text from CVS saying it is ready, so she can go pick the epi up as soon as she clears customs tomorrow.
Thanks for everything. This is such a great community. I haven't really told any of my IRL friends about all of this, or family outside of DS and DH. But I got such great support here. And I will let you know as soon as I hear from her again. She better call as soon as her plane lands!
Do you think it is another allergen or a recurrance of the reaction from the vaccination? Maybe a .normally mild allergy but her glass is full.from last reaction?
Did not see this discussed, and not sure if you'll get to communicate with her again.
It would taste like crud, but anyone could chew a benadryl tablet. If the benadryl is the powder caplets, might be able to open and get to the powdered form. If have time, could mix crushed tablet/powder with sugar water or other cola, perhaps to make it easier to get down and not gag.
I have no idea how horrible benadryl might taste in that form, but if push comes to shove . . .
And if somebody knows some reason why one would NOT want to do this, please say so.
{{hugs}} hedge
I think her body is way out of whack. She was recovering from mono when she got the vaccine. Then she had that horrible rash with swelling eye, likely from that, but at this point, who knows? The reason the doctor said she thinks it was the vaccine was that there was nothing new, no foods, lotions, soaps, etc that she had not used many times before. But in light of this new reaction, maybe she has developed an allergy to something she used to be OK with. Or maybe she has always had a minor allergy to something, but now that she had that first reaction, her cup is full and she reacted big time. She has had minor reactions to something unknown on occasion (eczema, twice she had tingly lips after eating foods she had eaten many times). She also tried lobster, on this trip. But the timing isn't right for that to be the only thing-- she had developed the rash before having the lobster, but then got worse hours later( I am fuzzy on the timeline, but the rash started at least a day before other symptoms).
So hard to tell with everything that has been going on with her body just what is causing what, what might be coincidence, and whether this is something likely to happen again, or something quirky because of everything going on recently.
I called a local allergist to try to get a recommendation of who she should see near her school. She won't be home, home for months. I left a message, and he has not called back. Does anyone have any recommendations if someone good. Sorting out this mess will take a very good allergist, I think. I know some of you know where she is. I know that there are excellent doctors at Duke, but there is a wait to get in there, correct? Since we have no idea what she needs to avoid, I would like her to see someone sooner rather than later.
I told her she should get liquid. She has benedryl that they gave her a prescription for at the hospital in Cuba, but it is pill form. I told her if she can possibly get liquid to do so.
Yes. Wesley Burks is a pediatric allergist, a food allergy guru (is responsible for most of the OIT research). I think she could still get in. He was at Duke and is now at UNC Chapel Hill. I believe from the letter he sent me (2 yeasts ago) he is taking patients but he's like head if pediatrics.
It's not a hard drive for her--an hour or hour and a half.
The only other rec I could make is 2 hours north, but if she doesn't go to Raleigh/Durham, I would stay in the town she's just east of.
Just seeing this. :grouphug: What an ordeal you've endured for the past few days. Thank goodness she had epi with her, and it sounds like the chaperones are handling this really well.
I hope she has no more reactions and that you can figure out what triggered it. :heart:
I don't know much about vaccine science, but maybe she came in contact with the real germ she got the vaccine for and her body flipped out? Hoping for her sake that it's something like that and not a new food allergy. And that she gets home safe. :grouphug:
:grouphug: praying that everything turns out fine.
Please post as soona s she lands in Tampa! Fingers crossed today for you all.
Planning on it. Her flight from Havana is in about an hour and a half, so I guess she is either at the airport or on her way.
Checking to see how much longer until she has an epipen. Thinking of you!
Woke up thinking about y'all. I hope you got some sleep last night.
There will be a lot of FASers holding thei collective breath today. :heart:
Me too.....waiting to hear that she is safe and well.
Quote from: GoingNuts on January 25, 2014, 08:12:27 AM
There will be a lot of FASers holding thei collective breath today. :heart:
Yes indeed-- like Mac, I woke up thinking about you both, Hedgie. :smooch:
She should be on the plane now, arriving in Tampa soon. I went out to run some errands this morning, and saw a friend while I was out. She gave me a hug, and I lost it. I just broke down, sobbing. It took a while before I could even get out th words to tell her what was wrong.
Can't wait for that phone to ring.
Just saw this now and said a prayer for hedgehog and her DD. Please keep us up to date.
Something nobody mentioned: most airlines have epinephrine in their emergency kits, usually in phials with a syringe, but some have autoinjectors. Could be worth calling the airline to ask. Just don't mention the exact situation, as they may deem her unfit to fly and deny her boarding, which would only make things worse.
EDIT: I guess if she's on the plane now there's no need to call. We're all waiting to hear that she got to Tampa safe and gets some Epi to keep with her for the rest of the trip.
:grouphug:
:crossed:
:heart: hoping you get the call and everything is ok.
Just got Facebook message from her. She s at customs in Tampa.
:thumbsup:
Great news!
Yea. That is wonderful.
So glad to hear that she is safely back in the US.
DEEP breath... WHEW...
:grouphug:
:thumbsup:
That is such good news. :)
She just called. She has her epipens, two of them, and is back at the airport, getting lunch with her friends. :happydance:
She wants to get in to see an allergist ASAP, which is good--it is what I would have told her of she did not beat me to it. She does not care about missing classes for it, since the professor for the only class she is taking is one of the chaperones. I think she will understand.
Big exhale. Glad she has the epis and is back on US soil.
:grouphug: to you. I'm glad this nightmare is over.
Great news!! I'm so glad she is safe!!
Yea. What a relief.
Yay!!!
Now that is good news! :grouphug:
Can't wait to see that she is home, safe and sound. And I'm so glad to hear she wants to see an allergist. :yes:
Yay!, so glad she's safely back. :thumbsup:
I was just popping in. So glad things are better.
Yay!!! So glad she is home safe!!!
wow, I'm so happy she's safe.
Just got off te phone itch DD, and got a much more full story. I don't have time to go into all details, but one thing that is somewhat shocking is that she has no idea what tey gave her in the hospital, because they didn't want to tell, and actually changed their story. They gave her an IV. When asked tey didn't want to say what it was, but then said sugar water and hydrocortisone. Then she got sick, threw up all over, and they told her they had given he something to induce vomiting. But would not say what. Theanslator would have a long conversation with the doctor, then translate it as two words. So she is really in the dark as far as what was in the IV.
And as happy as I am with everyone I dealt with from her school,I am not pleased with one chaperone. This chaperone was with DD during her reaction, agreed DD needed her epi, and had given herself one in the past. But refused to administer to DD, who felt physically unable. Luckily one of the students on the trip is an EMT, and gave her the epi and, along with the other chaperone, went to the hospital with her.
I have to go, but will post more details tonight or tomorrow.
Now that she's back do you think details in OT, or this tweeted thread?
I am back. So the timeline, I had been very fuzzy on before. It seems that the day after she finished the prednisone, the rash came back. Started mild, and got worse over te next couple of days. Then on Wednesday her eyes were puffy. She took it kind of easy that day. That night she did not drink a drop, although they went out as a group and most were drinking rum. She went back to the hotel early, too. Good thing, because in the morning she felt sick and it might have been dismissed as a hangover had she been drinking. Not feeling well, she went into te bathroom. She was laying on the bathroom floor when someone came in to check on her. She felt like she was going to throw up, her hands were shaking, she felt I guess a little lightheaded, and her legs became numb. That is when she got the epipen injection. They took her to a nearby hotel that some healthcare in it. They gave her oxygen and a benedryl injection then sent her to the hospital from there.
So, up until she really started feeling bad, she hada great time. I am happy about that. But now the question is, did this reaction really take several days to develop, or was there one reaction, a rash, followed by another, more severe reaction? And if course, we still don't know what triggered it. Maybe te vaccine, but maybe something else.
Ugh-- yeah, little chance that anyone thought to take a blood sample or find out if she had elevated histamine at the time, eh?
It certainly sounds as though it could be protracted anaphylaxis from the injection initially-- and that it just rebounded once she was off of the steroids.
I'm so glad that she is okay. :grouphug:
Ho-lee Cow, that is scary. :o So glad she is back home.
Now for the detective work to figure out WTH happened!
hedgie,
I'm glad your DD is home safe.
Glad she is ok.
Missed this whole thing. So sorry! Glad she is home and okay. How awful and frightening an ordeal.
Wow, so glad it worked out o.k.! So hard to let them go. :(
Talked to her last night. I am now sobmad she changed her appt from yesterday to Tuesday. She had been told by the first doctor it was ok to go off te prednisone, and she was going to. But the first day, she started to get a little bit of a rash, so went right back on it. This prescription was supposed to be until Sunday. She stayed on it a couple of extra days, because she did not want to go off it until seeing a doctor again, which I agreed with. But I also got an appt for Thursday because I wanted her to either discontinue or get the ok to stay in it ASAP. Staying on prednisone (sounds like a pretty high dose as well,but I am not sure) for that long with a doctor's ok is not good.
She would need to wean off of it, not just stop it. Especially after taking it for any length of time, as opposed to just a day or two. Maybe that is why she is rebounding? So hard not being able to be there with her.
Whoahhhh-- yeah, even a moderate dose for a day or two requires tapering doses at the end. :misspeak: Yikes.
Spoke to her last night. She was considering stopping before getting to the doctor Tuesday. I told her she will need to taper off, and to ask the doctor about the best way to go about that. I just wish she had already seen that doctor, and would already have that answer.
Arrrgh - young adult children. :banghead:
I hope she's listening to you. :console:
Yeah, as someone who has been on pred bursts more times than I can count and constant pred for nearly two and a half years, you cannot just go cold turkey on it, even if it seems like it hasn't been long.
I spent 2-3 weeks recently dropping my dose by only 3 mg ridiculously slowly, and I was miserable. It is not a good time, and if you stop suddenly, it can be life threatening.
Does this apply to the 3-7 day dose allergist or ER prescribes for kids after reaction? The pharmacy or prescribing physicians never mentioned this. OMG.
DD has been on three day courses of prednisone several times for swollen tonsils with strep.
She never had to taper down before. Or at least not until the first round recently, when the family doctor here put her on it before the trip. Then she was on the highest dose fot three days, stepped
down for three days, then the lowest dose for another three. And DD thought that was strange, and didn't really know that tapering off is usually how it is done.
Quote from: twinturbo on February 01, 2014, 10:42:58 AM
Does this apply to the 3-7 day dose allergist or ER prescribes for kids after reaction? The pharmacy or prescribing physicians never mentioned this. OMG.
Initial dose with tapering dosage is usually included automatically in those regimens-- that is, you might have a script that instructs; "take 4 tablets daily with food for first two days, then one tablet morning and night for two days, then one tablet each morning for two days."
It's always been liquid, same dose. The only instructions are to take it everyday or risk of death. Nice to know not a single med person in the equation warned us. Ever. At least I know to ask now.
If it's a relatively low dose, then there may be little need-- also, the younger the patient, the less severe the consequences of an abrupt step-down.
For adults and adolescents, though-- bad news to stop a moderate or high dose without a stepdown.
Before I started taking daily pred, whenever I had a short course, it always included a taper. When docs up my dose now for a sickness, it usually includes a taper as well - usually so many days at 40mg, same at 30, same at 20, and then back to my daily dose of 15mg - which we recently reduced to 12.
Stopping it suddenly carries a risk of adrenal crisis - basically your adrenal glands can stop working or be suppressed when you are on pred, so if they don't kick back in when you stop, really ugly things can happen to you. There is a much, much lower risk of this if you are only on it for a few days though.
Adrenal crisis is not something you want to happen.
She went to a good allergist today. The allergist's theory is that mono threw her immune system into overdrive. Then her body went nuts over the typhoid vaccine. The prednisone calmed it down, but when she went off it (and she did taper down), she had a rebound effect. So now she is going up to a higher dose, then tapering off very gradually, over a six week period. She goes back for a recheck just before finishing the lowest dose.
The doctor said that if she is ok after tapering off, they may never know whether her theory was correct or if it was something else. Which, to me, means carrying the epi-pen long-term, because who knows whether she may reacted to something that she seldom gets exposed to?
:grouphug: Glad that at least it isn't something new and common-- and that she would need to LEARN major avoidance skills to manage.
You bit your tongue on the gradual taper on the steroid, right? ;)
Just got off te phone with DD. it is not related, other than in a Murphy's Law type of way. But DD sprained her wrist. She was running and tripped on broken pavement. First time running since being diagnosed with the mono that started the whole ordeal. Spent most of yesterday getting checked out first at te university health center, then the hospital.
Ouch on the writs. I hope it does not cause her too much trouble. And I hope this will be the end of the reactions! I would feel more comfortable having epi on hand after an experience like that.
Sorry about the wrist. Is the allergist going to do any testing?
I think only if she continues to have problems.
I am deeply sorry to hear about the challenging situation your friend is facing in Cuba. Anaphylactic reactions can be life-threatening, and having access to epinephrine is crucial for emergency treatment.
While I don't have direct information about obtaining epinephrine injections in Cuba, I want to emphasize the importance of reaching out to the local medical authorities, hospitals, or clinics for guidance on obtaining the necessary medication. They might have alternatives or solutions to ensure your friend's safety.
In urgent medical situations, air ambulance services (https://www.bluedotairambulance.com/) like Bluedot Air Ambulance can be valuable resources for ensuring prompt medical transport to a suitable healthcare facility. Bluedot is known for its global reach and quick response times in arranging medical evacuations. If the situation escalates or your friend requires specialized medical attention not available locally, considering an air ambulance for transport to a more advanced medical facility may be an option to explore.
This happened 9 years ago. And if you are a US-based company, you would not have been allowed in Cuba at all at that time.