My son had a severe reaction to his allergy shot today

[Mom0012]

My ds9 is working towards the maintenance dose of his allergy shots. He went up to the highest dose today and had a severe reaction requiring an epinephrine injection. At the lower dose he'd been taking for the last few weeks, he has had swelling at the injection site and has become very fearful of taking the shots. He was great about taking them up until the last few weeks and now he is really having trouble with it.

 

His doctor recommends keeping him at the lower dose and using that as his maintenance dose. He originally said to just bring him in every 2 weeks for now on and then said he could come in every 3 since my daughter gets her shots every 3 weeks. He said that in a year, we could try increasing his dose again.

 

I'm worried about continuing with the shots! What are the chances he is going to start reacting more severely to the lower dose once it is spread out over 3 weeks?

 

My son actually responds very well to allergy medication and it seems to relieve most, if not all, of his symptoms. We tried the shots because his allergist highly recommended them, we thought it would be best if he didn't have to be on medication all the time and we thought it might make an improvement in his overall health to not be allergic to everything he breathes and touches.

 

I just don't know what to do here. He's already had about 18 - 20 shots, so I hate to stop them if they may help, but I don't want to put him through another severe reaction.

 

Any thoughts?

 

Lisa

Edited May 21, 2009 by LisaTheresa

[sassenach]

This happened to 2 of my friends (mother/daughter), at exactly that same point. They have gone back down on the dosage and are continuing to get the shots. They haven't had a problem since. hth,

 

Shannon

[Mom0012]

That was quick! Thanks, Shannon. That is encouraging to me. I would love to hear if this is what others have experienced as well.

 

Lisa

Edited May 21, 2009 by LisaTheresa

[gardening momma]

I'm worried about continuing with the shots! What are the chances he is going to start reacting more severely to the lower dose once it is spread out over 3 weeks?

 

My son actually responds very well to allergy medication and it seems to relieve most, if not all, of his symptoms. We tried the shots because his allergist highly recommended them, we thought it would be best if he didn't have to be on medication all the time and we thought it might make an improvement in his overall health to not be allergic to everything he breathes and touches.

I would continue with the low dose, since it does seem to help so much with his symptoms.

 

Did his severe reaction happen at the doctor's office?

[Hillary in KS]

I'd continue at the low dosage as the doctor said.

 

Don't forget to wait at the Dr.'s office for 30 minutes after the shots. I'm always surprised at how many people breeze in and out without waiting!

 

Do you keep your epi-pen with you on shot days? Our Dr. recommends that we carry it with us.

 

Hang in there!

[HollyDay]

I've personally had 2 severe reactions over the years. My first question would be what is he taking the shots for? If it is something that has a poor response to the shots - like mold for instance, then you might want to discuss with your doctor where you are going and for how long.

 

If your dc was reacting to the shots, why did they try to increase the dose? A reaction at a lower dose will pretty much insure a bigger reaction at a higher dose (at least that has been my experience).

 

I'd definitely make sure you understand emergency protocols and have a long chat with both the allergist and the pediatrician.

[Tess in the Burbs]

Ask about allergy drops. I started this year instead of shots and hope to have my son do them soon. I do it at home and have an epi pen in case...but so far haven't needed it. It's not FDA approved yet but been used in Europe for decades. It means you pay out of pocket, but for me it as cheaper than the co-pays to go get the shots!!!

 

What a hard decision to make...I hope your son gets over the fear of the shots. Do ask about allergy drops. And consider finding a Dr office that offers them.

[Karen sn]

Any thoughts?

 

Lisa

 

An honest to god good homeopathic, naturopath doctor.

If you lived in Alaska I could tell you where to find him.

[Maria from IN]

My allergist told me that redness and swelling at the injection site were an indication that I had indeed reached my maintenance dose and that they weren't going to go any higher.

 

I needed to have my serum diluted a couple of times so that it wasn't as strong as others might need--I have many inhalant allergies and the previous allergist used serum that was way too strong, and I needed an epinephrine injection. That doctor said he couldn't help me, so I went to another one who diluted his serum. He said it was common to have to do that.

 

I also noticed that during the times of the year when my allergies were the worst, I had symptoms that were a little more severe--for example, when the trees are blooming and I had gotten a shot that day, I felt a little worse...nothing like not being on the shots, though, just noticeable.

[AuntieM]

My son went through 4 years of immunotherapy. He never had a reaction that required epinephrine, but we ALWAYS stuck around the required 30 minutes and, like another poster, amazed at those who breezed out the door right away.

 

I will tell you that now, nearly 4 years after completing his course, it has had life-changing results for him. He rarely has allergic episodes and when he does, they are easier to manage (he had previously suffered from severe environmental allergies). He can do yard work and play football and all the things I thought he'd be restricted from.

 

I know you will make the best decision for your child, I just wanted to offer you some encouragement to stay the course if that is your choice.

[DawnL]

We have never had allergy shots here, so I don't have any experiences I can add. I'm very interested in your post and all the responses, though. My ds, 5, has a ton of allergies, and I am seriously considering starting him on allergy shots. I intend to make an appt with his allergist soon to discuss it.

 

How young is too young for allergy shots?

[AuntieM]

How young is too young for allergy shots?

 

I cannot speak for all, but our doc would not typically start a patient younger then 6 unless it was an extreme situation that he believed he could help improve. Our ds was one of the most rective kids he'd ever tested, and started him on his 6th birthday (well, not the *actual* day, I am not a meanie mom, but close).

 

FWIW, our doc followed the Johns-Hopkins high dose protocol, his goal was to cure his patients, not keep them coming back every two weeks for the rest of their lives. In our case, it was successful.

[Mom0012]

I would continue with the low dose, since it does seem to help so much with his symptoms.

 

Did his severe reaction happen at the doctor's office?

 

Yes, the reaction happened in the time it took to walk from the exam room to the waiting room.

 

Lisa

[Mom0012]

I'd continue at the low dosage as the doctor said.

 

Don't forget to wait at the Dr.'s office for 30 minutes after the shots. I'm always surprised at how many people breeze in and out without waiting!

 

Do you keep your epi-pen with you on shot days? Our Dr. recommends that we carry it with us.

 

Hang in there!

 

 

Yes! We always wait the 30 minutes and we always make sure we have our epipens with us.

 

Lisa

[Mom0012]

I've personally had 2 severe reactions over the years. My first question would be what is he taking the shots for? If it is something that has a poor response to the shots - like mold for instance, then you might want to discuss with your doctor where you are going and for how long.

 

If your dc was reacting to the shots, why did they try to increase the dose? A reaction at a lower dose will pretty much insure a bigger reaction at a higher dose (at least that has been my experience).

 

I'd definitely make sure you understand emergency protocols and have a long chat with both the allergist and the pediatrician.

 

 

Holly -

 

He is really allergic to just about everything. I'd have to get the list out to check, but it isn't just one thing like mold or dust mites.

 

Your question about why they increased the dose when he was having a reaction really has me concerned. After the doctor gave him the shot of epinephrine, he asked me whether he had had the swelling reaction on his arm as he did yesterday. That made me pause since he had been having it every time for the last number of weeks, the nurse knew it and yet they continued on to a higher dose. His arm swelled up to the size of a baseball one week, but then we began giving him an oral antihistamine prior to the shot and it wasn't nearly as bad.

 

Lisa

[Mom0012]

Ask about allergy drops. I started this year instead of shots and hope to have my son do them soon. I do it at home and have an epi pen in case...but so far haven't needed it. It's not FDA approved yet but been used in Europe for decades. It means you pay out of pocket, but for me it as cheaper than the co-pays to go get the shots!!!

 

What a hard decision to make...I hope your son gets over the fear of the shots. Do ask about allergy drops. And consider finding a Dr office that offers them.

 

Tess -

 

Is this an alternative treatment? I took my daughter to an alternative doctor all last year for allergy treatments. This doctor used to mainly offer the drops but then switched over to something called EPD because he felt it was more effective. Basically, she got a very low dose injection every 8 weeks or so. I think it helped some, but not enough. It was also over an hour from my house and insurance wasn't accepted, so I finally gave mainstream medicine a chance. For my daughter the regular allergy shots have really helped.

 

If you are talking about something mainstream medicine offers, I would be interested in checking it out for my son. I'm starting to think I picked the wrong doctor.

 

Lisa

Edited May 21, 2009 by LisaTheresa

[Mom0012]

My allergist told me that redness and swelling at the injection site were an indication that I had indeed reached my maintenance dose and that they weren't going to go any higher.

 

 

Again, it concerns me that the doctor's office went on to the next dose when he was clearly having a reaction at the lower dose.

 

Lisa

[Mom0012]

My son went through 4 years of immunotherapy. He never had a reaction that required epinephrine, but we ALWAYS stuck around the required 30 minutes and, like another poster, amazed at those who breezed out the door right away.

 

I will tell you that now, nearly 4 years after completing his course, it has had life-changing results for him. He rarely has allergic episodes and when he does, they are easier to manage (he had previously suffered from severe environmental allergies). He can do yard work and play football and all the things I thought he'd be restricted from.

 

I know you will make the best decision for your child, I just wanted to offer you some encouragement to stay the course if that is your choice.

 

This is what I was hoping to achieve for both my kids. My daughter has been miserable for 9 months out of every year for the last 3 years. She hasn't been able to drop her allergy medication since using the shots, but she's happy now and it's allergy season, so it's been so worth it for her.

 

My son has a history of severe food allergies, but I actually didn't think he even had environmental allergies because other than a little congestion in the morning, he never had the type of symptoms both my husband and daughter do and he always seemed happy. About a year ago though, he started complaining of dizziness and fatigue and it took me that long to finally realize it was allergies.

 

I saw your other post about the Johns Hopkins high dose protocol. Can you tell me a little about that? DS9 son used to see Dr. Wood at Hopkins, but we didn't feel it was worth the trip once we realized he wasn't going to outgrow his food allergies. He's about 1 1/2 hours from our house. My hope was to cure the problem as well. But with the way my son responded, it doesn't seem like he'd be able to do a higher dose anyway? Gosh! Now I'm kicking myself that I didn't take him back to Dr. Wood.

 

Thank you!

 

Lisa

Edited May 21, 2009 by LisaTheresa

[Mom0012]

We have never had allergy shots here, so I don't have any experiences I can add. I'm very interested in your post and all the responses, though. My ds, 5, has a ton of allergies, and I am seriously considering starting him on allergy shots. I intend to make an appt with his allergist soon to discuss it.

 

How young is too young for allergy shots?

 

Our allergist told me that they will start with children as young as 5.

 

Lisa

[rafiki]

.

[abbeyej]

Oh, golly, that would make me really leery too. I don't have any wisdom (we haven't done shots at all for the kids' allergies), but I'm so sorry you and your son had to go through that! ... And I would definitely want some answers and assurances before putting my kid through more...

[Mom0012]

I would call Dr. Wood's office this morning and get an appointment, cancelling all appointments with this other allergist. Seriously, we are considering the 6 hour drive each way to see Dr. Wood. I would love to have such an experienced doctor within realistic driving distance (to/from).

 

May I ask what item the shot was for?

 

Michelle -

 

I am thinking of taking both my kids back to Dr. Wood just to get a second opinion on these shots. DS9 saw Dr. Wood from the time he was 2 until he was 6. We didn't see an allergist for a couple of years after that and then just started up with this local practice. Even though I love Dr. Wood, I stopped seeing him because the only available treatment at this point for food allergies is avoidance. I figured any doctor can tell me that. Dr. Wood told me unless we wanted to participate in clinical trials, treatment would not be available until my son is college age.

 

The shots my son is taking are immunotherapy shots for environmental allergens. You build up to a maintenance dose over a period of 3 - 6 months depending on whether you get the shots 1X or 2X a week and then you get a maintenance shot every three weeks. They do not address the food allergies at all.

 

Lisa

[TravelingChris]

My dd had a bad reaction to the injection about a month and a half after she started. They gave her epinephrine, asthma treatment and maybe some antihistamine. She stayed around for about two hours after the reaction. Then they dropped the dose, went to a slower rise in the schedule and six months later, she is on a once a month maintanance dose with which she has no significant reactions. (She always gets red skin since her skin turns red with any pressure at all)/ In her case, I knew we had to do it. She has a wasp allergy and that is deadly, if not managed well. As it is, the doctor says that now if she was stung by a wasp, she would have no reaction. She still carries her epipen and inhaler around because wasps can sting in groups.

[AuntieM]

I am in the ranks of being shocked that they continued to increase the dosage after a noticeable irritation at the injection site. That only happened a couple of times with ds, but the protocol was to stay at that dosage (or even back off a bit) until that level was tolerable with no reaction.

 

Our allergist was Dr. Crawford Cleveland in Pensacola, FL. Best doctor I have ever seen for anything! Loved that guy, so very nice and committed. His father was an allergist and as a youth he observed patients returning to his dad's office for shots, never really being cured. He determined to become an allergist himself and try to find a cure for allergies rather than dole out perpetual maintenance shots.

 

We have not seen him in years, but I believe he maintains a web site that you can find with an internet search. When we moved away from the area, he knew an allergist in our new location, so he allowed us to hand carry the serum and shot records to the new physician, who was given specific instructions to follow Dr. Cleveland's plan. We did, on a couple of occasions, travel the 8 hours (each way) to make an office visit/check-up. It wasn't so bad since we had friends in town.

 

About 3 years ago when we made a major cross-country move, we had my son retested by a local allergy doctor. While diagnostic tests showed that he would still be considered "allergic" to many triggers, the key point is that he is not *reactive* to these things anymore. Short of rolling around in fresh-cut grass clippings, cats are about the only thing that trouble him anymore. They bother dh, too, though, so we just avoid the critters. DS can mow the lawn and bag the grass and sweep up afterwards with no trouble.

[Stacia]

I am in the ranks of being shocked that they continued to increase the dosage after a noticeable irritation at the injection site.

 

I agree.

 

I don't really know much about allergies & allergy shots, but based on the feedback others are giving, I'd definitely be seeking another opinion/allergist.

[Mom0012]

I am in the ranks of being shocked that they continued to increase the dosage after a noticeable irritation at the injection site. That only happened a couple of times with ds, but the protocol was to stay at that dosage (or even back off a bit) until that level was tolerable with no reaction.

 

Our allergist was Dr. Crawford Cleveland in Pensacola, FL. Best doctor I have ever seen for anything! Loved that guy, so very nice and committed. His father was an allergist and as a youth he observed patients returning to his dad's office for shots, never really being cured. He determined to become an allergist himself and try to find a cure for allergies rather than dole out perpetual maintenance shots.

 

We have not seen him in years, but I believe he maintains a web site that you can find with an internet search. When we moved away from the area, he knew an allergist in our new location, so he allowed us to hand carry the serum and shot records to the new physician, who was given specific instructions to follow Dr. Cleveland's plan. We did, on a couple of occasions, travel the 8 hours (each way) to make an office visit/check-up. It wasn't so bad since we had friends in town.

 

About 3 years ago when we made a major cross-country move, we had my son retested by a local allergy doctor. While diagnostic tests showed that he would still be considered "allergic" to many triggers, the key point is that he is not *reactive* to these things anymore. Short of rolling around in fresh-cut grass clippings, cats are about the only thing that trouble him anymore. They bother dh, too, though, so we just avoid the critters. DS can mow the lawn and bag the grass and sweep up afterwards with no trouble.

 

Thank you! I will look for Dr. Cleveland's website. I do wonder how this differs from the shots my son is getting. His allergist said after 3 years, they would retest and the hope would be that he is no longer allergic and would be able to discontinue the shots. Maybe this doesn't happen very often though?

 

Lisa

[rafiki]

.

[cillakat]

My ds9 is working towards the maintenance dose of his allergy shots. He went up to the highest dose today and had a severe reaction requiring an epinephrine injection.

 

is he taking a zyrtec or benedryl at least an hour and not more than 12h before his shot? This was recommended by our allergist and is their standard protocol. it is extremely helpful.....i don't know how alana could manage without that.

 

she also takes 500 mg vitamin C and 500 mg quercetin beforehand. the body still has the same rxn, the supplements and meds just stop the histamine from attaching to the mast cells (iirc).

 

:)

Katherine

[Mom0012]

is he taking a zyrtec or benedryl at least an hour and not more than 12h before his shot? This was recommended by our allergist and is their standard protocol. it is extremely helpful.....i don't know how alana could manage without that.

 

 

 

 

Thank you, Katherine. He is taking Alavert 2 hours before the shot and if he continues he's also supposed to take Singulair. The Alavert did make a big difference with the reaction he was having on his arm at the lower dose.

 

Lisa

[HiddenJewel]

It sounds like you would rather stick with conventional medicine. But if you find that it fails you, I would highly recommend researching allergy elimination. If you find a good practitioner, it can be very effective.

 

One poster recommended just staying on the allergy medication. What are the effects of long term use?

[mommybee]

I'd continue at the low dosage as the doctor said.

 

Don't forget to wait at the Dr.'s office for 30 minutes after the shots. I'm always surprised at how many people breeze in and out without waiting!

 

Do you keep your epi-pen with you on shot days? Our Dr. recommends that we carry it with us.

 

Hang in there!

 

I am always concerned people wonder that about me, but I've been getting my shots for 15 years so there is no way I'm waiting 30 min. anymore. But I did used to in the beginning.

 

So maybe some of them are long timers like me :)

[cillakat]

How young is too young for allergy shots?

 

I know some who have started on their third birthday.....but that was an abnormally severe case. Most say six, ours usually says 9 or 10 b/c she does the high dose Johns Hopkins protocol as well. It uses oral antihistamines before each shot a very rapid build up compared to the standard protocol. You can go up to 3x per week during build up, then once a week for maintenance.....it's much much faster to maintenance and faster to results. Maintenance is a standard high dose, not determined by a rxn.....they will slow the build up if needed, or reduce at times, but again, it's working to a highest dose that is standard for all pts.

 

 

Is this an alternative treatment?

I think the drops mentioned were wrt SLIT - sublingual immunotherapy. it's not alternative. it's an option offered by some allergists, though not many. It's still controversial here as there isn't a lot of data. But it's been used in europe for about 20 years. My ENT allergist, Alpen Patel, at Emory University, is studying it right now and does offer it. About 80% of the pts choose SLIT over SCIT.

 

I am in the process of switching my daughter from her current allergist, who like most, doesn't offer SLIT, to my doc at Emory who does offer it.

 

Again, it concerns me that the doctor's office went on to the next dose when he was clearly having a reaction at the lower dose.

 

I don't find it terribly concerning. There is always some level of reaction. If we've had a bad reaction - fe, the time she had a bump an inch high and the diameter of a tennis ball - I took a picture of it on my phone and showed them....we stayed at the same dose for a few weeks.

 

Fwiw, once we got to the maintenance dose, we started using LMX-4, applied 1 hr prior to the shot, to help manage the pain. She didn't find them painful at the lower doses....

 

Katherine

[cillakat]

Thank you, Katherine. He is taking Alavert 2 hours before the shot and if he continues he's also supposed to take Singulair.

 

Ahhh, we took alavert or claritin at first as well, but with the second and third bottle (stronger concentrations), it was clear that those wouldn't cut it. now she has to take benedryl or zyrtec.....unfortunately benedryl works better than zyrtec. we only do that one though if we're getting an afternoon shot. I'd go so far as to say that alavert and claritin as a pretreatment for shots is (for alana) about 20-25% as effective as benedryl or zyrtec.

 

I wouldn't give up now. It is an effective therapy. I don't see that the practice did anything irresponsible or egregious. This is *why* we all carry epi-pens for shots. Going down on the dose for a bit will be helpful, then slowly moving back up, possibly with a better antihistime on board (zyrtec or benedryl) will likely mitigate the affect. Vitamin C and quercetin on board would bolster the antihistamine effect even further. (ie lessen the reaction even further)

 

Heck, the only practice I'm questioning is the statement that the build up shots should 'only' be once or twice a week (they can be three times a week if the pt can make it in) and for optimal effectiveness, maintenance shots should be weekly......every three weeks to a month just keeps the pt hooked in for much much longer - years longer.

 

:)

Katherine

Edited May 22, 2009 by cillakat

[Mom0012]

I know some who have started on their third birthday.....but that was an abnormally severe case. Most say six, ours usually says 9 or 10 b/c she does the high dose Johns Hopkins protocol as well. It uses oral antihistamines before each shot a very rapid build up compared to the standard protocol. You can go up to 3x per week during build up, then once a week for maintenance.....it's much much faster to maintenance and faster to results. Maintenance is a standard high dose, not determined by a rxn.....they will slow the build up if needed, or reduce at times, but again, it's working to a highest dose that is standard for all pts.

 

I think the drops mentioned were wrt SLIT - sublingual immunotherapy. it's not alternative. it's an option offered by some allergists, though not many. It's still controversial here as there isn't a lot of data. But it's been used in europe for about 20 years. My ENT allergist, Alpen Patel, at Emory University, is studying it right now and does offer it. About 80% of the pts choose SLIT over SCIT.

 

I am in the process of switching my daughter from her current allergist, who like most, doesn't offer SLIT, to my doc at Emory who does offer it.

 

I don't find it terribly concerning. There is always some level of reaction. If we've had a bad reaction - fe, the time she had a bump an inch high and the diameter of a tennis ball - I took a picture of it on my phone and showed them....we stayed at the same dose for a few weeks.

 

Fwiw, once we got to the maintenance dose, we started using LMX-4, applied 1 hr prior to the shot, to help manage the pain. She didn't find them painful at the lower doses....

 

Katherine

 

Katherine -

 

What is LMX-4? I've been using lidocaine to try to help manage the pain from the beginning and ds9 had no problems taking the shots until a number of weeks ago. This is a huge concern for me because he has really started getting upset about taking the shots. He always cooperates with the nurse, but he starts worrying about it the day before, if not sooner.

 

As it is, the nurse gives me a hard time about using the lidocaine every time I go in there. She says it doesn't help and it just causes more discomfort when they remove all the band aids.

 

I will check into the sublingual drops as well. I'm sure this allergist doesn't offer them. The allergist I took my daughter to last year used to do a lot with sublingual drops, but he was clearly alternative and felt the EPD shot worked better, so we didn't pursue it. I thought I did my research on this ahead of time, but I hadn't heard of the John Hopkins protocol either.

 

Lisa

[Mom0012]

Katherine -

 

What is LMX-4?

 

Lisa

 

Okay, I see this is lidocaine, but it's a higher dose than we're using. We have 2.5% and I've only been applying it 15 - 20 minutes ahead of time. This allergist is very skittish about me using the lidocaine, so I don't know if he'll give me a higher dose. He says it can affect the heart.

 

Do you feel like it makes a very big difference for your daughter?

 

Lisa

Edited May 22, 2009 by LisaTheresa

[Mom0012]

Ahhh, we took alavert or claritin at first as well, but with the second and third bottle (stronger concentrations), it was clear that those wouldn't cut it. now she has to take benedryl or zyrtec.....unfortunately benedryl works better than zyrtec. we only do that one though if we're getting an afternoon shot. I'd go so far as to say that alavert and claritin as a pretreatment for shots is (for alana) about 20-25% as effective as benedryl or zyrtec.

 

I wouldn't give up now. It is an effective therapy. I don't see that the practice did anything irresponsible or egregious. This is *why* we all carry epi-pens for shots. Going down on the dose for a bit will be helpful, then slowly moving back up, possibly with a better antihistime on board (zyrtec or benedryl) will likely mitigate the affect. Vitamin C and quercetin on board would bolster the antihistamine effect even further. (ie lessen the reaction even further)

 

Heck, the only practice I'm questioning is the statement that the build up shots should 'only' be once or twice a week (they can be three times a week if the pt can make it in) and for optimal effectiveness, maintenance shots should be weekly......every three weeks to a month just keeps the pt hooked in for much much longer - years longer.

 

:)

Katherine

 

 

Katherine -

 

Thanks so much for taking the time to write all this out. It's really helpful to me. That is good to know about the benedryl and zyrtec. I know benedryl really knocks my son out, but I don't know how zyrtec would affect him.

 

We worked up to our maintenance dose by going 2X/week. The literature the doctor gave me only gave the option of once or twice a week. I had intended to ask if we could go to 3X a week, but their office is only open 2 days a week in my town. They have other offices, but then we'd have had to transfer the serums back and forth and I didn't want to get into that.

 

I'm not happy to hear that it would be better to do the maintenance dose once a week. To be honest, with the pain of the shots at this point, I don't really want to put either of my kids through it that frequently. I was told we would do maintenance shots for 3 - 5 years and then retest and see if they were still allergic. I believe that if they are still allergic at that point, we'd start the whole process all over again. How different would the outcome be if we did it once a week?

 

One other thing -- ds9 is getting 3 separate shots every time he goes in to the office. I think he could handle one, but 3 really makes it difficult. My daughter only gets 2, but my son is allergic to a lot more things.

 

I'm going to make another appointment with the allergist to ask about some of this.

 

Thanks again!

Lisa

Edited May 22, 2009 by LisaTheresa

[Mom0012]

Sorry, Katherine, I've got one more question. My daughter just reached her maintenance dose and should be going in every 3 weeks from here on out. The shots have helped, but she still needs her allergy meds. Should she continue to get an increased benefit as time goes by or is the relief she is getting now pretty much the maximum she will see since she is at her maintenance dose?

 

I have asked these things, but I never get clear answers or even speculations from the nurses.

 

Lisa

[Tess in the Burbs]

When I went in for sinus issues he suggested I consider shots or drops for allergy therapy. I was interested and asked about both. I got the pro's/con's of both and costs. They let me decide.

This is an ENT in a large all-in-one type of medical office where they have offices for family and specialists. Nothing special I assure you...just the closest one to me.

 

The first ENT I saw wanted to do surgery and suggested allergy shots. no mention of the drops.

 

The second Dr I saw for ear pain was the one who suggested shots or drops.

 

So yes, I think it's the Dr. Maybe ask around people who have done allergy shots and call those offices and ask about allergy drops?

 

The method has been used in Europe for decades...the idea being sublingual is a better method to receive the stuff. I have had amazing results. The allergy nurse mixed up my own vials and I got 4 bottles at my first visit. out of pocket cost me $135. If I had done shots it would have been $720 in co-pays. I have a chart of how many drops under the tongue each morning to take....hold it 2 minutes...then swallow. It's super easy....I don't have to haul the kids to the office twice a week! I would have paid way more. I go to pick up my next 4 vials next week...again, $135 for 12 weeks.

 

I haven't had to take any allergy medicine this spring. I had one reaction at my mom's (cats) after being there 3 days. But usually I can't even stay at her house. I still get sinus headaches related to the weather, but haven't had to do the sinus spray at all anymore! In the beginning I had watery eyes and runny nose for a few minutes every morning. But now I don't have any side effects.

 

I loved having the choice and I have found it works great. I hope you can find a Dr who offers choices :-)

[cillakat]

Do you feel like it makes a very big difference for your daughter?

 

Huge. But it does have to be applied a full hour prior to the shot.....even an hour and 15-20 minutes.....

 

LMX-4 is an OTC product. So is LMX-5. so you don't have to get it from your doc, just ask the pharmacist. They may have to order it, which takes a day.

 

It can be dangerous when applied to large portions of skin - like whole legs. or whole trunk.....but to two patches on the arms? It's fine. It's approved for pediatric use (even in infants), it's used in an *injected* form in dental work even in young kids. Approved for use in pregnancy. Used appropriately it's very very safe. I don't put bandaids over it.... i just have her wear a short sleeve shirt.

 

B/c of the increase in pain since we got to the strongest bottle of concentrate, she relies heavily on the LMX-4 now......and knows that the c, quercetin and zyrtec/benedryl are critical. She tells *everyone* at the allergist about the LMX b/c it's made a huge difference for her.

 

:)

K

[Mom0012]

When I went in for sinus issues he suggested I consider shots or drops for allergy therapy. I was interested and asked about both. I got the pro's/con's of both and costs. They let me decide.

This is an ENT in a large all-in-one type of medical office where they have offices for family and specialists. Nothing special I assure you...just the closest one to me.

 

The first ENT I saw wanted to do surgery and suggested allergy shots. no mention of the drops.

 

The second Dr I saw for ear pain was the one who suggested shots or drops.

 

So yes, I think it's the Dr. Maybe ask around people who have done allergy shots and call those offices and ask about allergy drops?

 

The method has been used in Europe for decades...the idea being sublingual is a better method to receive the stuff. I have had amazing results. The allergy nurse mixed up my own vials and I got 4 bottles at my first visit. out of pocket cost me $135. If I had done shots it would have been $720 in co-pays. I have a chart of how many drops under the tongue each morning to take....hold it 2 minutes...then swallow. It's super easy....I don't have to haul the kids to the office twice a week! I would have paid way more. I go to pick up my next 4 vials next week...again, $135 for 12 weeks.

 

I haven't had to take any allergy medicine this spring. I had one reaction at my mom's (cats) after being there 3 days. But usually I can't even stay at her house. I still get sinus headaches related to the weather, but haven't had to do the sinus spray at all anymore! In the beginning I had watery eyes and runny nose for a few minutes every morning. But now I don't have any side effects.

 

I loved having the choice and I have found it works great. I hope you can find a Dr who offers choices :-)

 

 

This sounds so much more convenient and less traumatic and costly than what we've gone through with the shots. I wish it would have been offered to me. I will be checking around to see if this is something we should consider switching to.

 

Thank you!

Lisa

[Mom0012]

Huge. But it does have to be applied a full hour prior to the shot.....even an hour and 15-20 minutes.....

 

LMX-4 is an OTC product. So is LMX-5. so you don't have to get it from your doc, just ask the pharmacist. They may have to order it, which takes a day.

 

It can be dangerous when applied to large portions of skin - like whole legs. or whole trunk.....but to two patches on the arms? It's fine. It's approved for pediatric use (even in infants), it's used in an *injected* form in dental work even in young kids. Approved for use in pregnancy. Used appropriately it's very very safe. I don't put bandaids over it.... i just have her wear a short sleeve shirt.

 

B/c of the increase in pain since we got to the strongest bottle of concentrate, she relies heavily on the LMX-4 now......and knows that the c, quercetin and zyrtec/benedryl are critical. She tells *everyone* at the allergist about the LMX b/c it's made a huge difference for her.

 

:)

K

 

 

Thank you! We will definitely be getting some of this stuff if we continue with the shots. How large of an area do you cover with the cream? Can the nurse see where you've put the cream? I think at least part of the problem with the lidocaine is that the nurse doesn't want us to use it and I'm putting it in such a small area (maybe 1" x 1") she misses it half the time.

 

Lisa

[TwinMominTX]

I have a severe allergy to fire ants. I tried taking doing a course of immunotherapy to reduce the allergy as I like on a ranch and controlling fireants completely is next to impossible.

 

The first shot - very very very small dose - caused a local reaction at the injection site. Nothing major, but a slight reaction nonetheless that was controlled by oral antihistamine.

 

The second shot - again very very small dose - caused a bit more of a reaction - reaction at the injection site, slight itchiness to the palms of my hands and scalp and required two doses of antihistamine to control the reaction.

 

The third shot - the same dose as the second shot - sent me in to a full anaphalytic reaction requring an overnight stay in the hospital and a course of steriod therapy. It was a horrible experience.

 

I felt terrible for a week to ten days after the reaction. It really sent my body for a loop. I feel for your son - a severe allergic reaction is very scary.

 

Needless to say, I now take my chances with the real fireants. I do things to be careful about being stung.

 

All this to say, talk carefully with your doctor about the odds of another severe reaction and perhaps get a second opinion about the dosage increments. Maybe an even slower increasing of reactant is necessary.

 

Good luck. I know how hard it is to deal with a life threatening allergy - and I am an adult and treating myself. I imagine its even harder when you are dealing with a child.

[cillakat]

My daughter just reached her maintenance dose and should be going in every 3 weeks from here on out. The shots have helped, but she still needs her allergy meds. Should she continue to get an increased benefit as time goes by or is the relief she is getting now pretty much the maximum she will see since she is at her maintenance dose?

 

Her benefit may increase for up to 12 months *on the maintenance dose*. But rewally, it's hard to say what will happen wtih an individual. There is tremendous variation. While many allergists use the 3 week standard - every week which is optimal in terms of getting optimal benefit in the shortest period of time.

 

:)

K

[cillakat]

I think at least part of the problem with the lidocaine is that the nurse doesn't want us to use it and I'm putting it in such a small area (maybe 1" x 1") she misses it half the time.

 

I draw a large circle in blue/purple permanent marker, fill it in with a very chickpea size of cream, rub it in pretty well, then wash my hands. the area is probably 2"x2" to cover any mistakes they make.

 

Is there another nurse there that can do the injections? I wouldn't put up with the bad attitude. There are a couple of nurses at our practice that we no longer allow to do the injections...and a couple that we really really like.

 

K

[cillakat]

less traumatic and costly than what we've gone through with the shots. I wish it would have been offered to me.

 

Fwiw, for me, here in Atlanta, it would be $300 for 12 weeks of the drops (SLIT). Typically, it's not covered by insurance. For me, it works out nearly the same as shots. I have a $19.10 copay per shot visit for my dd. Shots run me about $995 (assuming we miss a couple of weeks). Drops would be about 1200, assuming we miss enough days to add up to a couple of weeks.

 

Washington ENT/Allergy has a program that allows one to order drops directly from them....I've no idea of the cost:

http://www.allerdrops.com/

 

Katherine

[cillakat]

I know benedryl really knocks my son out, but I don't know how zyrtec would affect him.

 

benedryl used to knock alana out but she got used to it. it still makes her a little tired, but nothing like it used to (ie it's not a sleeping pill now). zyrtec used to knock me out....no longer.

 

 

 

I was told we would do maintenance shots for 3 - 5 years and then retest and see if they were still allergic. I believe that if they are still allergic at that point, we'd start the whole process all over again.

 

New allergist. Retest? You'll be able to tell if they're still allergic or not. If they are and shots have been helpful, you can keep going but really there is a lot of variation. shots aren't always curative. they often *arent'* curative but merely 'helpful' in reducing the reaction.

 

One other thing -- ds9 is getting 3 separate shots every time he goes in to the office..

 

really? my dd is allergic to almost all grasses, trees, animals and she only gets two. and fwiw, i usually have the 2 nurses do the shots at the same time so she only has to do with 'one' .

[Mom0012]

I draw a large circle in blue/purple permanent marker, fill it in with a very chickpea size of cream, rub it in pretty well, then wash my hands. the area is probably 2"x2" to cover any mistakes they make.

 

Is there another nurse there that can do the injections? I wouldn't put up with the bad attitude. There are a couple of nurses at our practice that we no longer allow to do the injections...and a couple that we really really like.

 

K

 

I will definitely do this with the cream. I think that alone could make a big difference as far as the fear factor goes. If we do the shots, I was thinking about switching offices so we could some different options with nurses. There are 2 that work in the office in my town and neither are great, but one is a pain to deal with and she's the one we usually get.

 

Lisa

[Mom0012]

really? my dd is allergic to almost all grasses, trees, animals and she only gets two. and fwiw, i usually have the 2 nurses do the shots at the same time so she only has to do with 'one' .

 

Oh, I wish they would do this, but they just aren't that accommodating. Thanks again for all your help!

 

Lisa

[Mom0012]

I have a severe allergy to fire ants. I tried taking doing a course of immunotherapy to reduce the allergy as I like on a ranch and controlling fireants completely is next to impossible.

 

The first shot - very very very small dose - caused a local reaction at the injection site. Nothing major, but a slight reaction nonetheless that was controlled by oral antihistamine.

 

The second shot - again very very small dose - caused a bit more of a reaction - reaction at the injection site, slight itchiness to the palms of my hands and scalp and required two doses of antihistamine to control the reaction.

 

The third shot - the same dose as the second shot - sent me in to a full anaphalytic reaction requring an overnight stay in the hospital and a course of steriod therapy. It was a horrible experience.

 

I felt terrible for a week to ten days after the reaction. It really sent my body for a loop. I feel for your son - a severe allergic reaction is very scary.

 

Needless to say, I now take my chances with the real fireants. I do things to be careful about being stung.

 

All this to say, talk carefully with your doctor about the odds of another severe reaction and perhaps get a second opinion about the dosage increments. Maybe an even slower increasing of reactant is necessary.

 

Good luck. I know how hard it is to deal with a life threatening allergy - and I am an adult and treating myself. I imagine its even harder when you are dealing with a child.

 

Wow! It sounds like you had a terrible reaction. I'm so sorry you had to go through that. I can understand why you stopped the shots. It sounds like they almost killed you.

 

Lisa