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Looking for Advice and Other’s Experiences- Using the “Big Guns” When Nothing Works

Good afternoon. I found this  website after searching the side effects for my daughter's shot yesterday of Lincosin and Celestone. I could go on forever, but here's the summary:

She is seventeen years old. Allegice to all grasses, all trees, cedar especially. We live in West Texas. Each year around October, she gets very, very sick. And I mean sick with this thing I call The Cough. It is incapaciating…this cough that never goes away and comes every second and within a week or even less turns into infection.

When she first gets the cough, every time, the doc goes with least aggressive therapy. Every year, she is told to take all the stuff- Allegra, Zyrtec…Nasonex,  We do it before the season starts. Then when the cough hits, here come this cough syrup, that one, the Tessalon pearls…you know,  all of it…everything thought of. This NEVER WORKS. Then, when it turns into ear and throat infection, she's given a Zpak and Celestone shot when it all doesn't work….and she stays good for maybe three months or so. We've never had insurance and I couldn't do the allergy shots. Well now I DO HAVE insurance and she's set to get tested Dec 26 to begin weekly allergy shots. 

Well here's where our story starts: this year, she was given Nasonex and has been ok with it. Didn't get sick in August this time. .So on Monday, here comes The Cough and sniffy nose. By Tuesday, it's so bad we are in the doc's office. He gives Zpak. By that night, fever. By Thursday, nothing's working and she's been hacking SO badly I get terrified and drive to an ER. She's given these things:

1. Lincosin shot (she still had ear infection, the ZPak did not work anymore

2. Celestone shot

3. Prescription for Ciproflaxin

4. Prescription for CheraTussin (codeine)

She is better this morning. I'm just scared to give her the Cipro right after having a Lincosin injection. i worry about C Diff and things.

QUESTION: Have any of you ever had allergies so badly that only the biggest of big antibiotics and steroids could even tame them? She does. What do I do as her mom? I'm SO WORRIED because if she is immune to most treatment now, what will she use when she is older? already on all this highly powered medication.

Finally, did allergy injections turn your life around? Is there hope for a better outcome? I hate to see my teen suffer with this incapacitating allergic cough. Please help. I need hope. I need advice.

Thank you.

Brenda the Mom from Texas

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Comments 15

  • Melissa G

    Hi Brenda! Welcome to AAFA!  So glad that you found us! 

    I am so sorry your daughter struggles certain times of the year! That is very frustrating and scary.

    Here is our  You can see if the city you live in is on the report. It will let you know if the area you live in is a bad area for fall allergies. 

    Here is some information on  and 

    Does your daughter also have asthma? When she gets sick does she see her pediatrician or allergist? Who did the allergy testing?

  • BrendatheMom

    Thank you so much, Melissa.

    1.In seventh grade, she had allergy testing. An ENT did it. We are getting new testing done Dec. 26 because she is now seventeen and her new ENT says we need a new report before mixing the injections up for her.

    2. yes, she also has asthma. She takes Singulair 10 mg nightly and albuterol inhaler as needed. When she gets sick, she sees her pediatrician. The pediatrician she saw did not help her, as he said her body could probably fight in on her own but I could give a ZPack if needed, and sent us away. Then when I called again to have her seen when she got worse, he was booked up…and i ended up driving to a random place to get help because the medication the pediatrician gave was not effective.

    3. Does she see an allergist- we have that new ENT doctor who did look at her in June, prescribed her the Nasonex, cauterized her nose becasue she had nose bleeds from nasal spray use the year before, and booked her for allergy testing.

    When she got really sick Monday, I tried to get booked with him too!, but his receptionist told me he was booked until after Christmas! Then I called again yesterday to try again- no appointments available. That is how I ended up driving to a nearby town for outside help: I was scared and I couldn't get in to anyone.

    Note: we live in a very small town in Texas. This may be why it has proven difficult to find openings for doctors. I don't know. Sigh.

    Thank you again and I will look at the links you've sent me. Very much appreciated.

     

  • Kathy P

    Hi Brenda and welcome! That sounds very frustrating that you are taking all of the preventative measures and she's still winding up sick. I actually have a similar history After many years, my doc now knows we need to hit things fast and hard for me to have other best outcome. Many docs take a conservative "wait and see" approach.

    I'll throw out a couple things you may want to consider taking to the doctor about at her appointment….

    Nasal Rinse – this is very effective for myself and my son when he was having chronic sinusitis and infections. Our allergist has us add an ampule of budesonide sometimes to get the steroid farther in than the nasal soras can reach.

    Has your daughter had a sinus CT?  That was ordered for my son when we were dealing with chronic issues. It showed that he had residual inflammation and thickening meaning that we were never fully clearing the infection. It can also show physical abnormalities that can hinder mucus draining.

    And I want to say kudos to you for being such a great advocate for your daughter!

  • Melissa G

    Brenda how is your daughter doing today? Does she take a daily maintenance inhaler for her asthma? Instead of an ENT, has she ever been evaluated by a pulmonologist or an allergist?

  • Shea

    Hi Brendathemom, 

    O have a rare chronic allergic disease called churg-strauss syndrome and I too have very large allergic reactions and asthma, along with system-wide inflammation. I really work hard on avoidance strategies like trying to keep the things I can control –my home environment– as clear of allergens as possible. I have vinyl floors and air purifiers mattress covers that zipper and weekly washing of bedding in hot water (makes a HUGE difference in my nasal symptoms) and dont open the windows often, I change and shower immediately after being outside if Im doing the lawn/outdoor stuff… I also wear an asthma mask if I am outdoors during peak pollen times or doing gardening. I still needs meds though. I have to take a maintenence dose of steroids daily for my disease and I am trying to get to the lowest dose without flaring it. I take benadryl every night. I dont take singulair because it is being correlated with more people developing churg-strauss syndrome and I did take it before being diagnosed with the disease so now I avoid that medication. I use flovent and combivent inhalers for the asthma stmtoms. I do not have to take antibiotics a lot though. When I do, I like azithromiacin or cipro. Allergies and asthma can make a person more susceptible to infections so I just carry wetwipes everywhere and am always waahing my hands too. You might already do these things but I just wanted to let tou know those are what Ive found helpful. 

  • BrendatheMom
    Kathy P posted:

    Hi Brenda and welcome! That sounds very frustrating that you are taking all of the preventative measures and she's still winding up sick. I actually have a similar history After many years, my doc now knows we need to hit things fast and hard for me to have other best outcome. Many docs take a conservative "wait and see" approach.

    I'll throw out a couple things you may want to consider taking to the doctor about at her appointment….

    Nasal Rinse – this is very effective for myself and my son when he was having chronic sinusitis and infections. Our allergist has us add an ampule of budesonide sometimes to get the steroid farther in than the nasal soras can reach.

    Has your daughter had a sinus CT?  That was ordered for my son when we were dealing with chronic issues. It showed that he had residual inflammation and thickening meaning that we were never fully clearing the infection. It can also show physical abnormalities that can hinder mucus draining.

    And I want to say kudos to you for being such a great advocate for your daughter!

    I'm about to just post about that!! He ordered the CT today! thank you so much. did your son have surgery or what happened?

     

  • BrendatheMom
    Melissa G posted:

    Brenda how is your daughter doing today? Does she take a daily maintenance inhaler for her asthma? Instead of an ENT, has she ever been evaluated by a pulmonologist or an allergist?

    no pulmonologist just the ENT but I'm about to post on that issue. He looked at her today and order an "pulmonary test" maam, and also a head CT. He said there's STILL inflammation. I thank you so much for your feedback.

  • BrendatheMom
    Shea posted:

    Hi Brendathemom, 

    O have a rare chronic allergic disease called churg-strauss syndrome and I too have very large allergic reactions and asthma, along with system-wide inflammation. I really work hard on avoidance strategies like trying to keep the things I can control –my home environment– as clear of allergens as possible. I have vinyl floors and air purifiers mattress covers that zipper and weekly washing of bedding in hot water (makes a HUGE difference in my nasal symptoms) and dont open the windows often, I change and shower immediately after being outside if Im doing the lawn/outdoor stuff… I also wear an asthma mask if I am outdoors during peak pollen times or doing gardening. I still needs meds though. I have to take a maintenence dose of steroids daily for my disease and I am trying to get to the lowest dose without flaring it. I take benadryl every night. I dont take singulair because it is being correlated with more people developing churg-strauss syndrome and I did take it before being diagnosed with the disease so now I avoid that medication. I use flovent and combivent inhalers for the asthma stmtoms. I do not have to take antibiotics a lot though. When I do, I like azithromiacin or cipro. Allergies and asthma can make a person more susceptible to infections so I just carry wetwipes everywhere and am always waahing my hands too. You might already do these things but I just wanted to let tou know those are what Ive found helpful. 

    That sounds so much like my daughter. How did they finally find out you had churg-strauss, if you don't mind me asking? What testing did they do? I'm going to mention this to her specialist. I never knew this existed.

     

  • BrendatheMom

    Hi everyone. I've been gone awhile because we are dealing with this crud. It is better but she still coughs.

    I read your replies and you've all given quality food for thought.

    I took her to the ENT today. He ordered the head CT and a pulmonary function test scheduled for November 19th. her allergy testing is moved to November 28.

    The post about churg-strauss syndrome really got me thinking. There has got to be something else going on here. Also, I agree that the infection is not clearing and my intuition says that surgery is in the future. I pray for a miracle for my daughter.

     

    Love to you all and thank  you SO much. I've never been able to identify with a group just for her symptoms. You all  are a godsend.

     

  • Melissa G

    Brenda, I am so glad that we have been able to help you! I hope between the pulmonary function test and allergy testing the doctors are able to help your daughter. Please know we are here for you! 

  • K8sMom2002

    Brenda, just wanted to give you and your daughter big hugs … hearing about the nasal cauterization to stop the nose bleeds made me think about my own daughter. She has a rare bleeding disorder and has had to have that done to stop nose bleeds — super painful when they use silver nitrate. 

    You sound like you are doing an awesome job at advocating for your daughter! 

    I hear you on being worried about c. diff. But a severe sinus infection can trigger all sorts of issues … and can trigger some people's asthma, which can be life-threatening, too. Could you talk to your ENT about your concerns and see what the doc says? Most docs these days are very cautious about over-prescribing antibiotics, so they will be glad you are so aware!

    Many of us here have "sick plans" that kick in when we begin to get an upper respiratory infection or have nasal congestion. Like Kathy said, being aggressive can help prevent asthma flares, or at least help prevent them from becoming worse. 

    I'm so glad the ENT you found is taking things seriously. It may be worth driving a considerable distance to a teaching hospital to see an asthma specialist — either an allergist or a pulmonologist. 

    It sounds like fall triggers a lot of allergy symptoms for her. Like Shea has said, working to help clear the air of allergens can help some folks. 

    Here's a great resource on improving indoor air quality … . 

    In the meantime, we're here for you — I know how it is to have a 17 year old … I have one myself!

  • BrendatheMom
    K8sMom2002 posted:

    Brenda, just wanted to give you and your daughter big hugs … hearing about the nasal cauterization to stop the nose bleeds made me think about my own daughter. She has a rare bleeding disorder and has had to have that done to stop nose bleeds — super painful when they use silver nitrate. 

    You sound like you are doing an awesome job at advocating for your daughter! 

    I hear you on being worried about c. diff. But a severe sinus infection can trigger all sorts of issues … and can trigger some people's asthma, which can be life-threatening, too. Could you talk to your ENT about your concerns and see what the doc says? Most docs these days are very cautious about over-prescribing antibiotics, so they will be glad you are so aware!

    Many of us here have "sick plans" that kick in when we begin to get an upper respiratory infection or have nasal congestion. Like Kathy said, being aggressive can help prevent asthma flares, or at least help prevent them from becoming worse. 

    I'm so glad the ENT you found is taking things seriously. It may be worth driving a considerable distance to a teaching hospital to see an asthma specialist — either an allergist or a pulmonologist. 

    It sounds like fall triggers a lot of allergy symptoms for her. Like Shea has said, working to help clear the air of allergens can help some folks. 

    Here's a great resource on improving indoor air quality … . 

    In the meantime, we're here for you — I know how it is to have a 17 year old … I have one myself!

    Cinthia-  I'm going to demand a treatment plan for her to be printed and also emailed to me, that I can take to whoever she sees. Last time, we couldn't get in to this ENT, and ended up visiting her primary, who just basically threw water at it and it got so much worse than it should have been. Thank you for the advice.

  • K8sMom2002

    @BrendatheMom, hurrah for you speaking up for your daughter! Have you been able to get a treatment plan for her?