Topic: Terrifying Experience....my son went in to Anaphylactic shock...UPDATE!
Tracy9
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Member # 7521
posted
Last night I had the scare of my life. My son, who turned 14 the day before yesterday, went into Anaphylactic shock soon after starting his Rocephin infusion.
We are staying with friends right now so we are away from home. I did not have an epipen with me. He could have died.
I came into the room and he looked at me and said "Mom, I feel claustrophobic." I said, "What do you mean?" He said he couldnt' breathe, he couldnt' get air in, it felt like he was "breathing through a straw."
Sara/Luvdogs whose home I am at immediately stopped the infusion and I asked to call 911. Instead Sara quickly gave him some Benadryl and said to try that first (it was liquid so helped quickly.) Cody was coughing and coughing and saying he could barely get air in.
The breathing stabilized, meaning it didn't worsen any further, and within 15 or 20 minutes he started to feel better. He was coughing, itchy all over, nauseous and light headed during the event.
I had made a quick call to the pediatrician who advised getting him right to the ER. It was very confusing as I am at someone else's house without a car, not knowing where I am going, so by the time we had tried to figure all that out he said he felt almost back to normal.
Sara and I decided the Benadryl had worked and I decided not to go to the ER, as it didn't seem necessary any longer.
Later I read about Anaphylactic shock on Wiki. I know now that I definitely should have gone to the ER as it states that "almost always" there is a secondary episode that will occur within a few hours. I also think I really should have immediately called 911.
I was shaking for hours afterward and had to even take an Ativan. I learned a couple of very important lessons from this:
1. If you are on IV antibiotics, ALWAYS carry an epipen.
2. You can most definitely have an Anaphylactic reaction even if you have been on the medication for weeks or months. Cody has been on this for approximately two months.
3. Don't even think twice about calling 911. JUST DO IT.
This is one of the most terrifying things that has happened, though there have been a lot with Cody. I think Sara literally saved his life. He described it as feeling his throat closing up from the "bottom up." I have no doubt in a few more minutes he could have been very close to not being able to breathe at all.
Still we are very lucky that didn't happen while the Benadryl was taking it's time to work. Needless to say, no more Rocephin for him. I will call Dr Jones later and see if he can switch him to another IV abx.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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1Bitten2XShy
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posted
I am sorry to hear this happened to Cody. It is a scary thing! I too had an alleric reaction to the Rocephin aftre being on it for a period of time.
My LLMD had a printed sheet that stated for these steps in this order:
Benadryl Liquid 911 Epi Pen
I always kept it close by...it is good sage advice!
posted
This happened to my son once (and my duaghter had hypoglycemia at the exact same moment). My cousin's son had anaphylactic shock at dinner and, because of my son, I knew without a doubt that he had to get to the ER. My entire family made fun of me for "overreacting" but going to the ER is always warranted for this. As you said, there is often a second attack.
All of my kids have allergies to certain abx, and it is always scary to give abx to them.
Benadryl is a great thing to tide someone over until they get to the ER, and a maximum dose.We had asthma inhalers around and did those too.
Tracy, be aware that he should probably continue on Benadryl for a little more. You should still get him to an MD or get advice on how to make sure he is okay, because the reaction can continue/recur for more than a few hours.
People on IV's or orals are not going to be able to get an epi-pen from a doctor, so Benadryl is the only thing that we have available. Carry capsules in your purse, and have him carry some.
Some ER docs/pediatricians will get very upset about this event, given the controversy over antibiotics. They may even report moms who are allowing their kids to get antibiotics, especially IV antibiotics, for Lyme. This type of danger from meds is exactly what the "other side" cites when they oppose long term antibiotics, and seeing the wrong MD could be dangerous.
If I were you, I would try to get your son switched to orals, no matter what the med is, because any reaction would be a little easier to deal with.
This is traumatic to go through, sorry you folks had to go through it.
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posted
Wow, terrifying to say the least. I am so sorry your son went through that.
My son has life threatening food allergies. You must always carry 2 epi pens because of the likelyhood of the second episode. And always have benedryl on hand. You always give both if there is any airway restriction.
Always go to the ER when something like that happens. Call an ambulance instead. It is legal in most states for paramedics to administer epipens. The food allergy group has been fighting for legislation for paramedics to be able to do this in all states.
Posts: 103 | From Northern VA | Registered: Apr 2009
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Pinelady
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So sorry this happened. Praying the rest of the road is wide open and no more obstacles for all of you.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
quote:Originally posted by 1Bitten2XShy: I am sorry to hear this happened to Cody. It is a scary thing! I too had an alleric reaction to the Rocephin aftre being on it for a period of time.
My LLMD had a printed sheet that stated for these steps in this order:
Benadryl Liquid 911 Epi Pen
I always kept it close by...it is good sage advice!
I am glad Cody is doing better!
Wow, I feel SOOOO much better having read this. Now I feel like we did the right thing. Phew.
I have to get some liquid Benadryl. This was terrifying. Though I dont' expect him to ever touch Rocephin again, I'm sure he'll go onto another IV med.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Member # 7521
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Shosty,
Our LLDs gave us all epipens when we went on IV meds. I have three at home, but never having needed them I did not even think to bring one with me here.
I never knew about the Benadryl either. But now I do. The two epipens is new too. I wonder why they only prescribe you one.
He needs IVs. We tried orals for six months with no effect at all. He is congenital Lyme and has three lesions in his frontal lobe.
With the IV he was JUST starting to turn the corner; in the last few weeks he has no longer needed sleep aides and this week has been able to go a few days with NO ADHD meds, unheard of for Cody.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymemomtooo
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Member # 5396
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Tracy, I am so sorry. You are being so helpful to luvs and this happens..What a nightmare..
We were never cautioned about any allergy issue or given an epi pen when my daughter was on IV meds..So thank God nothing happened.
However, I have had a few such episodes. Unsure how I have made it. Have discovered I have a severe allery to some mint candies and gums. Also once with a snickers bar..Damn...
I try to throw up anything I can and force water and have gasped for breath so hard that I have ruptured capilaries and spit up blood. I am very careful now. I also used to have stomach reflux which was a key player. Stomach surgery seemed to fix most of it.
A dentist just gave my gums some numbing solution and I had another episode two weeks ago. He had nothing in the office, so with some minor respiratory distress, I drove home to get benadryl. Always be prepared. Make sure he has meds available. One of my daughters also has some messy allergies and always has benedryl on her.
Also make sure he has a way to signal people that this is happening. You are often unable to talk..
May God watch over all of you so that things get better. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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klutzo
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posted
I am so sorry this happened!
I am allergic to all classes of ABX except Fluroquinolones. Time and again, I've been told by other Lymies: "it was probably just die-off, not true allergy". IMO, that is a dangerous assumption.
I went to an allergist and had skin testing done to be sure. It only takes one appt. to find out, and testing will let you know which drugs you are allergic to in advance, so you can avoid problems.
I was glad I went, since the skin tests showed that I really am 4+ (the highest level of allergy possible) allergic to all those ABX, plus sulfa drugs, which I had no idea I was allergic to.
Also, I was told by Dr. Teitlebaum, the Fibromyalgia expert, in a personal email from him to me, that anytime hives or swelling is a symptom, it is NOT die-off, so get thee to the ER fast!
This post is quite eerie for me, since just yesterday I had a fire ant sting, and I had to go in and get an emergency shot of cortisone. I also have to take Benadryl around the clock for 24 hours, due to the possiblilty of recurrence.
Yes, I know cortisone is bad for us, but I have heart damage from Lyme that precludes my being given adrenaline, and dying of suffocation is even worse than steroids.
Due to the dominance of the acquired side of the immune system in Lyme, allergies are likely, so I think skin testing to help avoid them as much as possible is worth it.
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I went into anaphylactic shock about a week and a half ago. I almost died. I took benadryl right after the start of the VERY FAST reaction and it did nothing. There was no doubt I had to go to urgent care and I knew in my soul I might actually die. Lucky someone was home to take me there or I probably would have died. My full body very rapidly turned bright red with welts and raised bumps, my eye and lip started to swell. It wasn't until I was on the IV steroids and antihistimine that my tongue actually began to swell. Everything happened VERY VERY FAST and I felt like I might have a heart attack. It was definitely scary and I carry an epipen now.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Sorry that you had such a terrifying experience.
I am so happy that Cody is fine and the outcome was positive.
An important lesson was learned before it was too late.
I worked for a Home Health Agency in the past and we never performed an IV infusion of any drug without emergency meds available in case of anaphylaxsis.
Things happen for a reason. Now you will always be prepared for the worst, while hoping for the best.
I am sure you have helped others who will also learn this lesson before a disaster strikes.
Hope everything goes smoothly for Cody from now on.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
This is intriguing to me. I suspect my daughter has congenital Lyme but I haven't had the money to test her yet.
She gets sick frequently. Missed a great deal of school last year.
When she was around 10 she got strep AGAIN. We put her on atbx and she got better, but a week later the soar throat came back. Dr put her on a diff atb this time.
On her second night on that med she started complaining of tightness, but thought it was part of the strep. At 3 am she came into my room gasping for air. I was terrified. I rushed her to the ER and they swept her right back and started treatments immediately. It took several hours to get her breathing normally.
I asked if it was a reaction to the atb, they said probably not, just croup - even though she was much older than a child normally is with croup and she had no cough. They sent her home on steroids.
2 nights later she developed a flat red rash all over.
Now, I don't know if she was allergic to the atb or if she has lyme and was reacting to the die off since she was on her second round of atbx.
Scariest parenting moment of my life.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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posted
The first time my daughter did IV meds, the infusion company gave us a vial of benadryl and a syringe to give directly into her port.
She didn't go into anaphylactic shock, but she did have a bad reaction to a med for a different problem and we gave her a shot of benadryl.
Posts: 177 | From God's Grace | Registered: Apr 2007
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posted
Please continue to keep a very close eye on him for the next couple of days Tracy. I just had anaphylaxis 4 days in a row, with a full body rash and swelling all over. Watch for any spots, marks, rashes, etc. and please please never let him go anywhere without an epipen and someone who knows how to use it. Hope he continues to do better...
Posts: 710 | From West Coast | Registered: May 2008
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bettyg
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posted
tracy and cody,
tracy, you are sara's lifesaver; now she has returned the favor 150% saving your precious cody's life !!
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TerryK
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I'm so sorry this happened. Good job luvs and Tracy!!!
Many of us take beta blockers for Neurally Mediated Hypotension. Just a note - meds for anaphylactic shock may not work all that well for anyone on beta blockers or ACE inhibitors.
http://www.medscape.com/viewarticle/497498_8 It has been suggested that patients taking beta blockers may be at increased risk for severe reactions during anaphylaxis.[4,5] Beta blockers administered orally and even topically may interfere with epinephrine treatment by antagonizing its effects at the beta adrenergic receptor.[4,12]
In experimental models, an 80-fold increase in dose of isoproterenol was required to overcome the effects of beta blockade.[4,12]
Similarly, angiotensin converting enzyme (ACE) inhibitors may also be problematic during anaphylaxis.[12,37] During anaphylaxis, fluid shifts occur such that up to 50% of the plasma volume may be lost from the circulation in as little as 10 minutes.[4,37]
To compensate for this, angiotensin, a potent vasoconstrictor, is released by the action of the renin-angiotensin-aldosterone system. Blockade of ACE prevents this compensatory response from taking place.[4,12,37]
I started to have problems with the IM ceftriaxone 4 months after I started taking it. The last few times I took it I felt like my throat was swelling up. I asked my LLMD for a blood test to see if I've developed an allergy. I should have the results next time I see him.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tracy9
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Cody has several "mosquito bites" all over his ankles which have been bothering him for days now, and up his calves too.
He has scratched them so much they are all scabbed over and some are pretty gross.
Could those have really beem hives leading up to this reaction? I didnt' see the bites before he scratched the heck out of them, but I didnt' think you could scrach hives like that and make them bleed. I thought they were more like welts.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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My daughter has severe allergies to certain dyes in food.
Unfortunately, these dyes are in the majority of food, so I am always reading labels and carrying meds, just in case.
Hope Cody is doing better!
Posts: 371 | From CT | Registered: Jun 2008
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klutzo
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I had anaphylaxis again yesterday, the day after the fire ant bite was first treated with a small shot of cortisone, and had to be rushed to the ER in an ambulance and given a huge dose of IV cortisone, and I now have to take oral cortisone for a week. So, the reaction sure can come back!
To TERRY K: About Inderal. I used to be on Inderal and my allergist told me I had to get off, for exactly the reasons you mention in your post. But, the ER doc told me not to worry so much. He said: "Inderal is a little ant, and Adrenaline is a very big foot. Adrenaline can always overcome beta blockers." I guess you just need a bigger dose.
I eventually got off Inderal and am now on Verapamil ER to control the heart problem, which will kill me if I don't take something. However, I never had anaphylactic reactions before starting Verapamil, because my adrenaline reaction was so much stronger before I started taking it, so it is a trade off.
FWIW, Dr. Teitlebaum (Fibro expert, not LLMD) says nobody who has a dx of Fibro, like so many of us have/had, should take Beta blockers. It is impossible to recover from a disease that drastically slows metabolism, while taking metabolism slowing drugs like those.
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Tracy9
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LMAO, Carol. Will do. Wish I had it for Sara.....she REALLY needs it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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TerryK
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Thanks for the info klutzo. I feel a little better after hearing what the ER doc told you but this disease has taught me that if anyone will be the exception to the rule, it will be me. LOL
The problem for me is that without a beta blocker my pulse pressure is so low that I feel like I'm dieing. I tried to go off the beta blocker and my pulse pressure was about a 5. VERY BAD. I was able to get my atenolol down to only 25 mg per day. 1/2 of what they initially wanted me to take.
Unfortunately I have a very high pulse when not on the beta blocker and that makes me feel terrible too. Even after 3+ years of treatment my blood pressure dropped down to 75/65 the other day in the doctor's office. ugh!
Sounds like we are both between a rock and a hard place. I figure the damage has likely been done to my autonomic nervous system and I'll probably always need something to keep my blood pressure up and pulse down.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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klutzo
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Terry, I am sorry to hear that you are indeed in a Catch-22 situation like I am. I have a pulse pressure that is much too wide, and poorly controlled high blood pressure.
My pressure in the ER during the allergic reaction was 198/100. With the Verapamil on board my pulse was 74 during the reaction. Before I started taking it, an allergic reaction had raised my pulse to 232.
I did have a low pulse pressure once of 103/98 as a strange reaction to HRT after menopause, and I agree with you that it was an awful feeling. The doc said it is very dangerous, even more so than high pulse pressure.
My Cardiologist definitely thinks my high blood pressure is due to ANS damage from Lyme, since the only drug that worked to lower it is a drug that acts by poisoning the sympathetic branch of the ANS. Traditional BP drugs did nothing.
I guess we just have to do the best we can with the cards we've been dealt.
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Tracy9
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posted
UPDATING.....
As I research this more it just terrifies me more and more how close this call was. My son Ryan, a new EMT, was particularly horrified when we finally had a chance to talk about it. He told me that now EMTs dont' even bother with Benadryl because if it doesnt' work by the time they move on to the Epipen it is often too late.
He said my son should have DEFINITELY had the epipen and I agree. I must NEVER let anyone second guess my maternal instincts and gut feelings again.
Ryan also explained to me that people can still be breathing and talking and die. The blood vessels can constrict in the head/brain and kill them without their throats closing up. He definitely had enough symptoms for this to qualify as anaphylactic shock;throat closing up, trouble breathing, coughing, light headed, nauseous, and dizzy.
One extremely important thing I don't know if I mentioned, but finally had time to research last night, is that the one and only drug Cody is allergic to is Cefzil. At age five, he broke out in horrific hives, the worst I have ever seen, all over his body from the Cefzil.
I looked this up; both Cefzil and Rocephin (Ceftriaxone) are Cephalosporins. So in fact, this was not his first allergic reaction to a Cephalosporin. We are very, very lucky as serious it was that it wasn't fatal. I have no doubt if Sara hadn't thrown that Bendadryl down his throat so fast he would have probably died before an ambulance could have made it there.
I will never stop beating myself up for not getting him to the ER even after as the pediatrician instructed me to. We are very lucky he didnt' have a "second wave" reaction, as I've read most people do. But Sara gave him a second dose of Benadryl a few hours later; again probably saving him from that.
This is a HUGE lesson for me and I hope everyone. I don't pay enough attention to drug reactions we have had in the past and what we are taking now. None of us are big reactors to drugs, we can pretty much stomach anything without side effects, but this is the one thing that Cody had trouble with in the past.
I called Dr. Jones today and they are starting him on IV Zithromax on Monday to replace the Rocephin, so all is well. Now he is going to be back on IV, Dr Phillips is going to continue prescribing Blake's Rocephin, I am seeing a new LLD to get a PICC line and back on the Rocephin in two weeks, and Dr. Jones told us to start Ryan off on Minocycline and Zithromax until we get him on insurance for a PICC line and IVs, which I must get up the energy to finish in the next few days.
We are almost there; soon we'll be the PICC family.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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linky123
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posted
Thanks for the update.
You have been through a lot and we're hoping for better times ahead for your family.
My son and daughter also had bad reactions (hives) to ceclor when they were little.
Is that a cephalosporen? I think it is.
Anyway, it is good to know what to watch for.
Take care.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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