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Old 10-09-2007, 11:14 AM   #1
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Meds not working anymore (long)

Hi all, I am a long time lurker..and a lot of you have helped my daughter with all your advice, and I'm looking for some help now. Sorry this is so long.

My daughter- 10 yo has cough variant asthma, from her allergies. She has always had normal peak flows. It took a long time to get her diagnosed because of this. When she was first diagnosed after constantly coughing for what seemed like months, and several bouts with an itchy rash (which was misdiagnosed as scabies) she had a rast test that showed she was highly allergic to dust mites only. Nothing else. But she is super allergic to them. 200 times more than the average person. So we totally got her bedroom up to par with all the allergy stuff: new mattress, dust mite covers on everything, hepa air purifier, no rugs, Mielie vaccum. I even bought a front loading washing machine to wash her sheets in super hot water every week. We don't have central air, and have a window unit in her room, and have baseboard hot water heat.

Anyway, she went on prednisone for weeks, but that didn't really help her. When she started on Advair, that really did the trick. Unfortunately she also started breaking out in the horrible itchy rash again. But when we combined the Advair (500/50 twice a day) and Claritin, she finally got some relief. She was wonderful for a year, from 9/05-10/06. However, the last year has been horrible. She goes back and forth between the coughing attacks and a rash all over. It seems that the rash appears when the coughing subsides for a day or two. She rarely has both at the same time. After several rounds of prednisone last fall and winter, in 2/07 our pediatrician thought perhaps the Claritin wasn't working anymore, and we should try Allegra, he felt she needed to alternate her antihistamines to get better results. This worked for several months, and we alternated between Claritin and Allegra. But by the summer, we were needing to alternate every few weeks, and threw Zyrtec into the mix. We recently had her tested by an allergist to look into immunotherapy. Turns out she is allergic to a lot more than dust mites, although that is her worst allergy. She is also allergic to nickel, lanolin, grass pollen, tree pollen, ragweed, dogs, cats, rabbits, horse, cattle hair, and feathers. When we took her off the Zyrtec to be tested by the allergist, it was a terrilbe grass pollen and ragweed season here, so she has been having attacks for about 6 weeks. The day the pulmonologist put her on prednisone, she had coughed for 17 hours!

So my problem now is, she is needs to get her asthma under control to get the allergy shots. I just feel like none of her meds are working anymore, and that is never going to happen. She is normally on Advair 500 twice a day, Singulair, Flonase, Zyrtec. She has been on Prednisone for 14 days, 30 mg. I am waiting for a call from Pulmonologist to find out what to do next. Dust mite season (winter) will start here in New England soon. I think last time the Advair really helped her get out of a mess, but I don't know what they will do now. I think our pulmonologist is even stumped. He is mentioning Xolair, but she is too young and it will take forever to get approved. I don't even know if I want her on it, it scares me. I would take her off everything, but I think that she will then be coughing 15, 16 hours a day, which happened for a week last winter until the pediatrician switched the antihistamines. Any advice for us? I am trying to find someone, maybe at Children's in Boston to give us a second opinion, even though I trust and like our pulmonolgist. I had read a few post on somewhere about people taking an Allegra in the am, and a Zyrtec in the pm. Has anyone ever tried that? She coughs for hours every evening, and only falls alseep when exhausted, even with all the meds she is on.

Any advice/ideas would be appreciated. Thank you! We have seriously thought of moving, but that would be very difficult, practically impossilbe, as it would be for most people.

MJ

 
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Old 10-09-2007, 04:22 PM   #2
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Re: Meds not working anymore (long)

In all your writing there is no mention of a bronchial dialator. Does she not use a rescue inhaler (albuterol) or a nebulizer (xoponex)?

 
Old 10-09-2007, 10:07 PM   #3
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Re: Meds not working anymore (long)

I cannot respond specifically to treatment for a child, but your daughter's treatment is remarkedly similiar to what I have been through as an adult. It sounds like you are doing many of the right things. I started off with allergies that have gotten worse over the years and eventually developed a chronic cough for months on end that was so bad I couldn't stop or catch a good breath. I think I had asthma for years before I finally got a diagnosis. Then it took a couple more years to find a combination that controls both my allergies and my asthma. At this time, I have been cough free since May (with the exception of a couple flare-ups during wildfire season.) I always fear winter because in addition to the allergies the extreme cold air and the polluted inversions cause a yearly intense flare-up of coughing. I can only hope that my current treatment lasts into the winter.

Currently, I am undergoing my second round of immunotherapy for allergies to trees, dust mites, molds, cats, dogs, horses (although I am never around horses), grasses and weeds. For my allergies, I am currently taking Allegra, Flonase and Astelin. For my asthma I am currently on Advair 500/50, Singulair and Albuterol as needed. I too have been on Prednisone fairly frequently since I was diagnosed with asthma. I also found out I had acid reflux with a cough as my symptom and take Prevacid twice a day for that.

I don't get rashes quite that frequently, but when they do occur, my doctor has prescribed a strong topical cream and Benedryl when it gets bad.

As for the moving, that may help some, but I have found that now I have the allergies, everywhere I have been in the country I find new things that trigger allergic responses. For some people it helps, but I would seriously consider if it would be of benefit to you and your daughter.

By the way, when you visit the doctor again you may ask about getting your daughter a flu shot this year. I know when I got worn down from months of coughing a year ago I ended with the flu as well which just aggrevated things more. (I had had a flu shot, but picked up a different strain. I find they give me a piece of mind though when others around me are getting ill.)

Good luck finding a successful treatment for your daughter.

 
Old 10-10-2007, 08:25 AM   #4
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Re: Meds not working anymore (long)

Thank you, both of you for your responses. She does use an abuterol inhaler- she usually needs it during the day after recess, and sometimes during soccer. Amazingly, except for the two days she was coughing for 16 hours, she has been able to play soccer all fall. I give her two 1.25 mg Xopenex in the nebulizer in the evenings when she is coughing. She has needed the nebulizer about 7 days in the last 15 she has been on prednisone.

Mountain Reader-thanks for your insights about moving. We have only been here 6 years, it was a difficult decision to pick up and move here, and even harder to do. But it all worked out- we have 3 other children and they all love their life here- we were planning on staying here for good- my husband has a great job. However, we hate seeing our daughter on all these meds, and are so sad for her- and the moving discussion does come up lately when it gets really bad. Yet we are thankful that she is only coughing- not wheezing. We are not rushing her to the ER, I know it could be so much worse. That said, her quality of life does suck at times. She is getting depressed and I hate to see my happy, full of life daughter struggling.

What is Astelin? Is that something I should ask the doctor about?

I am wondering about the reflux. I saw another post by someone yesterday who said treating all three- the allergies, post nasal drip and reflux, was what finally got their asthma under control. I would hate to put her on another med, that really upsets me, but maybe some pepcid would help. I have been thinking a lot since yesterday- posting helped me to vent a little. I am going to also look into some holistic solutions. We need to get her asthma under control before they will do any immunotherapy, and then I'm hoping that will help her.

Thanks for your help!

 
Old 10-10-2007, 10:13 AM   #5
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Re: Meds not working anymore (long)

You might ask the doctor about her using before any cardio...recess and soccer. I jog and have to do 2 puffs of albuterol 20 minutes before I run...otherwise I wouldn't make it 2 blocks!

 
Old 10-10-2007, 09:31 PM   #6
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Re: Meds not working anymore (long)

Astelin is a nasal antihistimine for various types of allergens. It tackles my allergy symptoms differently than the Flonase which I also use.

 
Old 10-22-2007, 11:36 AM   #7
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Unhappy Re: Meds not working anymore (long)

Quote:
Originally Posted by Emjay74 View Post
Hi all, I am a long time lurker..and a lot of you have helped my daughter with all your advice, and I'm looking for some help now. Sorry this is so long.

My daughter- 10 yo has cough variant asthma, from her allergies. She has always had normal peak flows. It took a long time to get her diagnosed because of this. When she was first diagnosed after constantly coughing for what seemed like months, and several bouts with an itchy rash (which was misdiagnosed as scabies) she had a rast test that showed she was highly allergic to dust mites only. Nothing else. But she is super allergic to them. 200 times more than the average person. So we totally got her bedroom up to par with all the allergy stuff: new mattress, dust mite covers on everything, hepa air purifier, no rugs, Mielie vaccum. I even bought a front loading washing machine to wash her sheets in super hot water every week. We don't have central air, and have a window unit in her room, and have baseboard hot water heat.

Anyway, she went on prednisone for weeks, but that didn't really help her. When she started on Advair, that really did the trick. Unfortunately she also started breaking out in the horrible itchy rash again. But when we combined the Advair (500/50 twice a day) and Claritin, she finally got some relief. She was wonderful for a year, from 9/05-10/06. However, the last year has been horrible. She goes back and forth between the coughing attacks and a rash all over. It seems that the rash appears when the coughing subsides for a day or two. She rarely has both at the same time. After several rounds of prednisone last fall and winter, in 2/07 our pediatrician thought perhaps the Claritin wasn't working anymore, and we should try Allegra, he felt she needed to alternate her antihistamines to get better results. This worked for several months, and we alternated between Claritin and Allegra. But by the summer, we were needing to alternate every few weeks, and threw Zyrtec into the mix. We recently had her tested by an allergist to look into immunotherapy. Turns out she is allergic to a lot more than dust mites, although that is her worst allergy. She is also allergic to nickel, lanolin, grass pollen, tree pollen, ragweed, dogs, cats, rabbits, horse, cattle hair, and feathers. When we took her off the Zyrtec to be tested by the allergist, it was a terrilbe grass pollen and ragweed season here, so she has been having attacks for about 6 weeks. The day the pulmonologist put her on prednisone, she had coughed for 17 hours!

So my problem now is, she is needs to get her asthma under control to get the allergy shots. I just feel like none of her meds are working anymore, and that is never going to happen. She is normally on Advair 500 twice a day, Singulair, Flonase, Zyrtec. She has been on Prednisone for 14 days, 30 mg. I am waiting for a call from Pulmonologist to find out what to do next. Dust mite season (winter) will start here in New England soon. I think last time the Advair really helped her get out of a mess, but I don't know what they will do now. I think our pulmonologist is even stumped. He is mentioning Xolair, but she is too young and it will take forever to get approved. I don't even know if I want her on it, it scares me. I would take her off everything, but I think that she will then be coughing 15, 16 hours a day, which happened for a week last winter until the pediatrician switched the antihistamines. Any advice for us? I am trying to find someone, maybe at Children's in Boston to give us a second opinion, even though I trust and like our pulmonolgist. I had read a few post on somewhere about people taking an Allegra in the am, and a Zyrtec in the pm. Has anyone ever tried that? She coughs for hours every evening, and only falls alseep when exhausted, even with all the meds she is on.

Any advice/ideas would be appreciated. Thank you! We have seriously thought of moving, but that would be very difficult, practically impossilbe, as it would be for most people.

MJ
Hello,

My grand daughter (11 years old) sounds EXACTLY like your child. As stated in a previous thread, none of her meds have been working along with the allergy shots and she was hospitalized in April of this year along with many trips to the ER before that. We didn't want Xolair to be an option, but after all the prednisone (which really doesn't work anymore), we just want her to get some relief from this awful, awful cough. She takes the shot once a month and she received her second shot of Xolair just this month. It is scary, but our doctor explained the Xolair study to me really well, so we decided to take a chance, and we pray for the best.

 
Old 02-21-2008, 08:38 AM   #8
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Re: Meds not working anymore (long)

I too have been on Advair, for four years now. I too have experienced a LOT of weight gain since taking it. Also, I've had trouble swallowing, hoarsness, and a loss of lung capacity.

I finally went to a Naturopathic Doctor, who put me on Bromelain, Quercetin and Nettles. However, I didn't stop the Advair, and so didn't see much difference. She did tell me to start breathing exercises, where I push all the air out of my lungs, then breathe in slowly. This is helping me regain my lung capacity. I've only been off the Advair two days now, and am very careful to drink 8-10 glasses of water a day, as she directs. She also put me on organic foods, and no sugar, dairy products and meats. Vegetarian diet all the way, but I frequently "fall off the wagon". When I don't eat right, I get asthma attacks. I too am allergic to trees, grasses, indoor and outdoor molds, dust mites especially, soy, tomatoes, some grains. So, ensuring the house is clean means my husband having to do the dusting, sweeping, etc. and I take care of the washing.

I have also heard that allergies can be relieved by going on the Blood Type diet, recommended by my Naturopathic Doctor. You eat according to your blood type, I am type A, and that is vegetarian.

Find out what foods your little girl is allergic to, not just the outdoor and indoor allergens. Food allergies are rare, it is said, but not quite so rare as is reported. Could be her food is causing her distress, and coughing is a means for the body to try to expel the offending substance.

Stress also causes allergies to flare up, as do pets. Even clothing can do this. I firmly believe that if you find a naturopathic doctor, a true N.D. (educated at Bastyr University, or Southwest College of Naturopathic Medicine), you'll have found a good physician. And they spend a lot of time with the patient, discovering everything there is to know about the patient. My first visit, I was with her 2.5 hours. It is worth it.

Good luck.

 
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