Allergic reactions to Antibotics

[Carol H]

Hi.. I have posted before that last Oct. a year ago this month, my grandson had a terrible reaction to the antibiotics the doctors believe it was the cefepime and possibly the vancomycin. He had steven Johnson syndrome, I cannot tell you how terrible it was for my family but most of all for Connor. He did recover and we do feel lucky because it could have been a lot worse he responded to the steroid treatment, but it took over a month for him to recover.
Since that time my grandson Connor has had a reaction to 2 other antibiotics. He has a allergist that follows him, a derm specialist and his CF team. The docs told us Connor would need to start challenge testing, they need to find out what antibiotics he CAN take. He is pretty healthy right now and the bronch they did over the summer has really helped to clean out his lungs his PFT's look great!

So he was admitted last week and docs started with Zosyn, they started his IV treatment around 3pm but by 11pm Connor had a reaction.
He gets a high fever that just spikes up, chills, red all over, with rash and his labs show liver enzymes elevated. The doctors stopped the Zosyn and the next day he broke out in a rash with tiny blisters they gave him Benadryl which did not help.. then started steroids and that did help. Connor was fine, and got to go home the next day. He only has a little rash at this time.
The doctors talked to my daughter for a long time, this is the problem due to previous reactions and the reaction to Zosyn, they will NOT be able to use a huge list of antibiotics to treat Connor. They doctor said if .. no when! Connor needs antibiotics for anything it will be only once they have pin pointed the exact bacterial infection. He cannot take any antibiotics with penicillin, cephalosporin, and also vancomycin.
The doctors told us this can be very serious for a child with CF, and once my daughter showed me list that is now off the shelf for Connor
we were both in tears. My daughter is having a hard time pulling it together and being a Mom of a newborn now just makes it harder.
I believe in prayer and I know that these kids are fighters and the Mom's too!! There is still many antibiotics they can use and always always know that we can get through this! Connor is scheduled to go back in hospital first week of Nov.. another challenge test for another antibiotic. I am worried for my daughter and the results this time. But I am more upset for Connor having to go through this.. He said
when he got home last week .. that was terrible!! and I know he is scared (U)
Ok back to positive thinking!!! and prayers Please say a prayer for him and let me know if anyone else is having the same problems with reaction to antibiotics???

 

[Aboveallislove]

Oh Carol, I am so very very sorry. I just saw this. We will definitely pray and you tell Connor to let me know what "stories" and "adventures" to have waiting for him...we'll write some ahead of time so they are ready for him when he has to go in. Just ask him who he wants in it (pig minions or despicable me ones) and a couple of things to be involved and we'll come up with something!
On another note, I think there is a way to desensitize people to antibiotics. Maybe try a search here for some threads (I'll try later).
Hugs and lots of prayers.

 

[Ank]

Hi sorry to hear that.
I am also alergic to zosyn (piperacillin and tazobacta)

It makes me shiver and. give terrible back pain.. and fever

few year back i had an allergy with cefipime too

but that time iv injection was very dark in color

it was my third day with cefipime ..so i suspect iv injection was adultrated .
I just got 2ml injected out of 10 ml.. and started suffocating

it almost killed me.i was not able to breath.and every thing went black.hospital was 20 min away
I recoverd on my own in 1 min .

Had i take full 10ml i would have not been here.

personally i feel meropenum is best of all antibiotics


When ever you start a new antibiotic .inject it in small amount and wait ... to see if you are allergic

even when you are having tested ..inject it slowly and periodically..over 30 min or more

I prayer for his good health

 

[jaimers]

I'm so sorry that happened! I can imagine that would have been so scary. Have they ever talked about trying to desensitize him to any of these medications? I'm not even sure they try to do that anymore but I remember vaguely when I was 7 or 8 being desensitized to an antibiotic in the PICU. It involved administering doses of the antibiotic very slowly over long periods of time. I was pretty young and don't remember the details of the procedure or outcome but I know I must have "passed" because they sent me home on whatever med it was (can't remember now). It may be that his reaction is so severe that desensitization wouldn't work. I hope things get better for the little guy!

 

[triples15]

I'm so sorry that happened! I can imagine that would have been so scary. Have they ever talked about trying to desensitize him to any of these medications? I'm not even sure they try to do that anymore but I remember vaguely when I was 7 or 8 being desensitized to an antibiotic in the PICU. It involved administering doses of the antibiotic very slowly over long periods of time. I was pretty young and don't remember the details of the procedure or outcome but I know I must have "passed" because they sent me home on whatever med it was (can't remember now). It may be that his reaction is so severe that desensitization wouldn't work. I hope things get better for the little guy!

o

Hi Carol, so sorry to hear about your grandson's allergic reaction, how scary that must have been. I'm also sorry to hear how many meds are off the table for the little guy now. I can only imagine how devastating that is for you all.

I wanted to mention though, to Jamie's point, yes I know my CF Doctor still practices desensitization. A friend of mine has to go into the ICU at the beginning of every course of IVs to be desensitized because she's allergic to the meds that work on her bugs. She spends about 24-48 hours there and then is able to head home to finish the course. Like Jamie, I'm not sure of the entire process or if there are cases that are too severe to attempt desensitization. I wanted to second her mention of it though because I think it is something worth questioning his docs about.

Hang in there, hugs to all of you!

Autumn 34 w/cf

 

[Helenlight]

Hi Carol,

How old is Connor? We have had issues with our daughter being allergic to some antibiotics and meds, and it is very frustrating.

Some things I have noticed: if there is also exposure to other allergens like food, dust, or whatever the person is also allergic too, the immune system can become 'hypersensitive', in that it becomes more reactive to other things. Our daughter is allergic to cats (as am I), we thought it was just mild, but when my mother took our cat while we were on holiday, all of my daughter's allergies improved. As soon as she was back in contact with the cat, she became hypersensitive again. Thus the cat is not coming back in our house!

Another thing is that with all the antibiotics our kids have, they kill off all their good bacteria. We have billions of beneficial bacteria that help us in many ways, including helping calm the immune system. I would recommend regularly giving him a good quality 'broad strain' probiotic to help replenish his gut bacteria. One particular strain I have seen that helps with allergies/asthma/eczema is [FONT=arial, sans-serif]Lactobacillus rhamnosus. There are also new beneficial strains found all the time, it is becoming a heavily researched area. You can give probiotics during a course of antibiotics (yes some will get killed off, depending on the antibiotic, but they do still help prevent the gut getting colonised with other bad bacteria and yeasts), and then keep giving them once the course of ABs is finished.[/FONT]

Also: some allergies can be grown out of. Our daughter reacted to all the penicillin based antibiotics pretty badly when she was a baby, but she is reacting less as she gets older. I am also careful to reduce or eliminate her other allergens to keep her immune system calm. I have allergies myself, so I've had over 30 years of working out what works and what doesn't, so that has definitely helped with my approach with my daughter. She still reacts to cotrimoxazole (Deprim), and there will probably be others that will be an issue in the future too.

When a reaction occurs, we find cetirizine based antihistamines helpful. I also avoid any petroleum based creams, which just seem to make matters worse.

If your daughter has any inkling that Connor is allergic to anything at home, sometimes skin prick testing can identify it. By eliminating any other allergens, you will be helping to heal his body. I don't know what kind of diet he has, but I find minimising artificial additives and refined sugar very helpful in settling their bodies and immune systems. Good quality foods and good fats, probiotic yoghurts, apple cider vinegar in your salad dressing... all these things can be helpful for an allergic child. No chemical creams or soaps etc.

Feel free to message me if you'd like any detailed help or helpful links or anything.

Good luck!!

 

[Carol H]

Thank you all for your ideas and prayers! Connor is doing good right now and so happy to be back at school He is 7 years old and he does take probiotics everyday has been on this med for over a year. Also he does eat a lot of yogurt that is one of his favorite foods! The next time he goes in for challenge testing in Nov.. they are going to test Meropenum. He has taken this antibiotic before last April he did have a reaction but he was on 2 other iv antibiotics so we cannot be sure which one cause the reaction?
I will give my daughter all your ideas and suggestions.. we can talk to the docs. Info on this issue helps so much we are researching everything right now.
Connor has had allergy testing done all the results were negative for food allergies, mold, pets ect. The docs really are not sure why he is having allergic reactions to antibiotics.. one thought is he is creating antibodies that cause this but they told us not sure?
We will discuss again trying to desensitize him..but they said due to his history with Steven Johnson Syndrome and the allergic reaction this time was so fast they do not think they can do that with Connor , not this year anyway.
Again thank you all for your support and prayers .. any ideas or suggestions will help!

 

[kenna2]

I'm so sorry this has happened. I'm not sure if this might happen to you, but keep this in mind. I'm allergic to many CF drugs and had like every adverse reaction to them when I was younger. Overtime, as your body changes it's chemistry every 7 years or so, we were successfully able to reintroduce some of the meds and I tolerated it ok. The first day was always and still is rough, but the following days were ok. Like I said, I don't know if this will happen for you, but something to keep in mind. My prayers are with you!

 

[Deb]

After so many years on antibiotics I have slowly started reacting to some of them. I was told I could no longer take IV Cipro. However, we tried using IV Benadryl prior to each dose and that does the trick. They still supply me with an EPI pen just in case but this allows me to use IV Cipro if it is needed.

 

[bookworm]

Hi Carol,

I am very sorry to hear that your grandson has experienced Stevens-Johnson syndrome because of antibiotics. I was diagnosed with cystic fibrosis late in life, because doctors were more concerned with my allergic reactions (erythema multiforme/Stevens Johnson) to many things (sun/foods/household cleaners/drugs, etc.). It is a very serious problem. I noticed that someone had suggested desensitizing for antibiotics. It may be that this is not possible, because of the serious nature of Stevens Johnson. The allergist that my clinic sent me to, refused to attempt desensitization with good reason.

I have had to live a pretty careful life avoiding things, and I have had to go "outside of the box" to treat both the allergic reactions and cystic fibrosis. But, I would also like to say that I am 59 now and have grandchildren of my own. So my hope is that your grandson will find a way - and his family will also find a way - to cope with this challenging situation. Because of the erythema multiforme/stevens johnson I have had to take very few drugs over the years, mostly oral and mostly fluoraquinolones or tetracyclines and occasionally biaxin. What seems important in reducing reactions for me is to rotate drugs if you can and not to take the huge doses that are normally given to CF patients. So Cipro for one course, then perhaps Levaquin for the next. Your grandson may have to have protocols quite different from most CF patients and this might be a difficult thing for his doctors to understand. I stay away from all NSAIDs as they can be very bad news for people with erythema multiforme and/or stevens-johnson. It's very important to be preventative - finding out what drugs to stay away from. And although it's very much in vogue to treat you with many drugs and give you more drugs for the side effects you experience, for me, anyway, LESS is definitely more. To live well with this condition, you need to be acutely aware of what triggered things in the first place. You absolutely cannot do this if you're exposed to lots of things. It can quickly become a very ugly spiral. I'm not sure if you know about the Stevens-Johnson Foundation, but you may want to pass this along http://sjsupport.org/. There is a link to a children's page on it as well. Be warned though...there are very graphic descriptions and some truly heart-rending stories and pictures. You are blessed to have a team that realizes the seriousness of this problem; not everyone is that educated about this problem. It's essential that the parents read every side effect for every medicine before deciding whether to give it so that they and the doctors can evaluate possible severities of drug reaction. If there are terrible histories with a certain drug...then don't even go there. I still reacted with the fluoroquinolones and the tetracyclines, especially because they made me more sensitive to the sun, which also caused the reaction. But for me, they are the best of the bunch. So lowest dose that will help is the golden rule for me. And it may mean taking a lower dose for longer periods, rather than a steamroller dose for a short period. You need a gentle touch with this - it's a real art to stay well.

 

[Carol H]

Thank you for the info on Steven-Johnson syndrome. We are very lucky for so many reasons, first that Connor did respond to the IV steroid treatment and also that he survived and that it did not affect his eye sight. We have read and seen many cases and we know how blessed we are he is ok today! I have to say that was the worse time for our family but more for Connor .. he had the rash, high fever, high heart rate his whole body was swollen and labs off the charts. He was put on tpn he could not eat due to blisters in his mouth. By the third day he was covered..I mean everywhere with rash and blisters. His recovery was amazing after a few days on the IV steroids he started to get better It took him a long long time to get back to himself. But I thank God everyday he is ok
You are right... he is lucky to have the doctors that he does they are extremely careful now and they are working together to find best way to treat my grandson.
He cannot take nsaids, so no advil ever!
The doctors told my daughter this week they will NOT admit him in Nov. and try next IV challenge for antibiotic because his labs still show elevated liver enzymes and because the reaction was so fast they will wait till December but not sure? The docs told her they are checking with specialist in Boston and Washington to see if there is more info. So now we wait and see.
I can say the scariest thing is the balance between not treating him and the risk of him having another reaction. His CF docs have always been so PRO-active whenever he gets a cough, runny nose they would treat him to prevent a exacerbation, so now I am worried because we will wait and do cultures if he is growing the bad bugs then they will try one of the safe antibiotics. In the past one never seemed to work he would end up on 3 IV antibiotics to get him over the hump.
But we cannot worry about the what if's ... hard not too I will ask about lower dose antibiotics he has his CF clinic visit next week.
This can all be a bit heavy but it helps to know others have been through this. Things can be hard but we will find a way to keep Connor healthy! He is a great kid so smart, loves his parents and new baby sister , of course me and Papa! We will keep pushing forward, praying and try to stay positive!

 

[bookworm]

I am so glad to hear Connor made it through that. So truly scary and horribly distressing. And extremely painful for him.

You and your family sounds wonderful and supportive. I am hoping that he does not have a lot of recurrences. I used to have a lot before I learned all the things I had to avoid. Oddly, my sister also developed it a couple of times, but has not had it since. So it can be very variable. I am really really hoping that Connor will be one of those who may not get it all that often.

However, I have to say that caution is absolutely warranted. I read a press release from Sick Kids Hospital in Toronto that if you have had a drug reaction with Stevens-Johnson recurrences are very high. Sick kids and several other medical establishments studied over 700 cases of Stevens-Johnson and TENS and published the study at JAMA, so I am sending you the link to the news, so you can let the doctors know about the study: http://www.sickkids.ca/AboutSickKid...-reactions-carry-high-risk-of-recurrence.html Also, the doctor who conducted the study - who is well-known and has a background teaching at Harvard - may be a good contact for your team. Sick kids has an excellent research team of doctors in cystic fibrosis, so they may be able to consult with them as well - particularly if some of those children also had drug reactions.

And here's the doctor's background: http://www.sickkids.ca/AboutSickKids/Directory/People/F/YaronFinkelstein.html

I am praying that Connor will have a very happy healthy life and many cautious, sensitive doctors - and lots of hugs along the way.

 

[bookworm]

Just wanted to add to that one of the major things that trigger the condition for me is phenol, used as a preservative in drugs, vaccines, and in cleaning fluids etc. It is in almost everything, sunscreens, test kits for swimming pool PH, shampoos. As well as ventolin. Antihistamines are also very bad news for me. In many cases, doctors will not know if phenol is in there. Never take a prescription without checking. If at all possible, try avoiding petrochemicals (such as detergents made from them, fabric softeners, perfumes, scented products etc.) Also viruses and mycoplasma are an issue for me as well. You'll find more about some of the worst offenders (including drugs, chemicals, viruses etc.) in the doctor's earlier article on the condition in children. http://pediatrics.aappublications.org/content/128/4/723.long That long list of drugs, vaccines etc that cause reactions makes me suspect that phenols is part of the problem for a number of folks. As for herbs, beware of angelica found in many chinese herb preparations. Lysine can be helpful if viruses are a problem and less hard on the liver than the usual prescribed antivirals.

What seems to be very important is avoiding exposures as much as possible, because they do build up and make you more susceptible. Exercise really helps you detoxify from these exposures and make it less likely that you will react. But it has to be daily and lots of it.

I hope this isn't too disheartening, and I assure you that I wasn't brought up like a hot-house flower. My parents did make sure my environment was as good as possible, but they sure made me bike, swim, and didn't let me get out of anything ever, because I wasn't feeling well. Although I wasn't always thrilled with this - sometimes passing out or enduring lots of pity stares from folks when I was covered with painful rashes - it did help me learn to cope, far better than if I hadn't done things.