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severe asthma in my 5 year old

So I just joined this group in hope to get some advice about how I could help my son. I will start out with a little history about him, he is a very active 5 year old but he has very severe asthma his doctor said this is one of the worst cases she has seen in a long time. He is in and out of the hospital since last November he has hospitalized 3 times and we normally stay about 3 days. He just got out of the hospital a couple of days ago. We just got some appointments set up with a lung specialist and also an allergist. So hopefully we can figure out what is causing his attacks. He is taking singular in the morning albuterol treatments as needed zyrtec at night and also taking flovent inhaler once in the morning and once at night and some times he has to take prednisone.  this last hospital stay was the  worst it seems as he is getting older it is getting worse. We took him to his doc because he was still having attack after taking all his meds and we ended up going by ambulance to the hospital his o2 level was staying too low,sorry for the long post

 

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  • K8sMom2002

    VShadow, and your post wasn't long at all! Welcome and . It sounds like you have had a really tough time of it — three stays in the hospital since November, plus an ambulance ride! Wow! That had to be plenty scary for both you and him. 

    Did your doctors review and update your son's  before you were released from the hospital? 

    I'm glad you're going to see an allergist and a lung specialist. AAFA's short video "" helped me understand how allergists in particular can play a big role in taming asthma. 

    One thing that helped us when my daughter was small was to keep a diary of her symptoms and what she was doing. This resource about explains more about that.

    How's your kiddo doing now? I hope you guys are both getting some well-deserved rest.

  • vshadow

    Thank you and yes we are resting this weekend but he is doing a lot better and yes they changed his plan up 

  • Aven's Mom

    Sounds similar to us. I just joined. My 6yold just had an ambulance ride and ER visit this week. We have had allergy testing 3 times by 3 different dr. This time acid reflux seemed to be a trigger as well as croup. Going to visit with his pulmonologist in a few weeks to go over plan and possible GI referral. My guy also has a chronic stuffy nose. Looking a diet options to reduce inflammation but challenging due to picky eating. Dairy and gluten? Good luck and thinking of you. I know I am on worry mode right now. 

  • K8sMom2002

    VShadow, glad you guys are resting! What sort of changes did they make to his plan? Do you think it's helping?

    Aven's mom, and I hear you on being in worry mode. When you say you had allergy testing done by three different doctors, I'm wondering if at least one of those doctors was a board certified allergist? And also what sort of allergy testing? Environmental or food allergies?

    There are resources available for you on AAFA's sister website Kids With Food Allergies. I'll get those links for you ASAP.

  • Aven's Mom

    Thank you. Yes pediatric board certified environmental and food through blood tests and the scratch tests. Even tested for celiac. Nothing has showed up ever. We are still pushing his pro air abuterol inhailer until he stops coughing every 4-6 hours along with Prevacid, singular, and advair. We were trying Zyrtec but I honestly thing it clogged his nose up worse with mucus. Thanks

  • K8sMom2002

    That's tough, Aven's Mom! Here's that link I was telling you about: . So NONE of his skin or blood tests showed ANY allergy for either environmental or food allergies? 

    I'm glad you're thinking about having a GI consult on your son's case. Reflux can definitely be a trigger for asthma. Has your son had any other GI issues that seem related to food? I ask because there ARE different kinds of food allergies that aren't IgE mediated — they wouldn't show up on a scratch test or a blood test. 

    Here's a link about in general. Toward the bottom of the page I linked to, it tells more about food allergies that aren't IgE mediated. 

  • Kathy P

    Welcome VShadow and hugs – that sounds very stressful to have your child in the hospital so frequently. How soon are the appointments with the specialists?

    Welcome Aven's Mom. Hugs for you guys too! Reflux is one of my triggers and keeping that under control is just one critical component for me. Has he tried nasal sprays? 

  • Jen

    Hi vshadow and Aven's mom,

    Welcome to AAFA.  Big hugs for both of you.  I hope this week is more peaceful.

  • letii

    I have the same problem with my son. We will be going to a pulmonologist in May, so we can know exactly whats making him have so many episodes 

  • Jen

    Hi Letii,

    Welcome to AAFA's asthma forum.  Who is currently managing your son's asthma care?  

  • K8sMom2002

    Letii! How many episodes and how severe are you seeing? If your schedule is at all flexible, you might consider asking the pulmonologist's staff to put you on their cancellation list. You'd have to be ready to go at a moment's notice, but it may mean that you would get a quicker appointment.

    VShadow and Aven's Mom, I hope things are going better for your kiddos!

  • Shea

    Hello VShadow, welcome to the forum! So, when you said Singulair a huge red flag went up for me. Singualir is a medication increasingly being tied to a previously rare disorder called Churg-Strauss Syndrome, a chronic allergic disorder with asthma as a chief complaint. Here is a link to a study, and if you google "singulair churg-strauss", more will come up. Right now they cannot prove causation but a strong correlation and more and more studies are linking them.

    I am telling you this this because I developed Churg-Strauss Syndrome after taking singulair for a year. I took the singulair so I could stay over and eventually live with a boyfriend who owned cats, of which previously gave me very bad allergies and severe wheezing. It worked like a charm, like magic, I could suddenly be around cats with no wheezing, sneezing, itching, red eyes. But after a year living there I started developing asthma attacks (I never had asthma previously) and needing to go to the ER for nebulizers of albuterol and to the primary care doctor for steroid tapers. I ended up having a heart attack at age 26 from blood cells that are markers of allergy called eosinophils surrounding my heart and choking it off, and after that had a biopsy and was officially diagnosed with Churg-Strauss Syndrome, an allergic disease that effects the lungs, skin, blood vessels, heart, and other organs. Shortly after that I moved out of the home with cats and dogs and lived in a pet-free home, started managing my allergies by avoidance and linking triggers to episodes, of course got off Singulair because two respected specialists (one was an immunologist, one a pulmonologist) told me about this link with Singualir and called it a "bad medication". My theory is that the singulair did a great job masking the symptoms of allergy but not stopping the reaction at the blood (eosinophil) level, and that is why is chronic allergies developed in effect. I still think that if I never moved in with the guy with cats I would never have had this problem. I now have more severe reactions when around both cat or dog dander and it is my worse trigger for allergies, asthma, and my entire chronic disease. Even second-hand exposure triggers me. It would be difficult for someone living with cats or dogs to link these things until they moved out, and it takes months for dander to clear out, but it an make a world of difference, so if you live with pets, get tested for cat and dog dander, and do not shrink it as a problem. It is one of the most difficult, and it ended my relationship with the guy I sthought I would marry and had a son with, but it saved my and my son's life (my son is also very allergic and he is five, so we do not do timeshares at his father's house, who refuses to find homes for his pets despite both of our sever allergies. (He proved to be a horrible person in man ways).  

    So, long story short: I think it is great that you are seeing an allergist. Not all are aware of this link to singulair, and I never tell anyone to stop taking anything without consulting with doctors. There are blood tests, like checking the blood for eosinophils in a CBC, and noting if they are high, and if they are, asking about other options or trying to stop taking it and seeing if that helps. My primary care doctor never told me I had high eosinophil levels, even though they were right their in the blod test results that I never had my hands on but shoud have… nor did he refer me to a specialist when I had started developing Churg-Strauss and was in his office every month needing steroids for asthma symptoms I never had previously… he should have, but he didn't, so always challenge your doctors, ask questions, look at your lab results and ask about the things with and :H" for high next to them in red… and get a doctor that you are comfortable talking to and feel they keep up with the research.

    I hope you find answers and great doctors and get all this managed, I am sure it is even more scary as a parent than it is for oneself, and I know I keep a good eye on my son's allergies and skin flares for that reason too. Keep us updated!

  • Kathy P

    VShadow how is your little doing? Is the new plan helping?

    Aven's Mom have you decided anything on the diet options?  I've actually been researching antiinflammatory diets. I'm already gluten-free for a known intolerance. I'm also dairy protien and egg intolerant, but don't always avoid those completely. I know the dairy and egg flare my reflux which in turn flares my asthma. Our allergist had us try an elimination diet for my DS to see if it made a difference in his chronic sinusitis issue. It did not, but we felt it was worth trying. If you do need to eliminate things for the long term, it's good to get help from a registered dietitian especially for a picky eater. 

  • Kathy P

    Welcome letii – I bet May seems far away, but it will be here before you know it. How can we help in the meantime?

  • K8sMom2002

    Letii, any news on getting a quicker appointment? I hope so!

    Aven's Mom, about the help a registered dietitian can give you. Kids With Food Allergies has a great .

    VShadow, how are things going? Did the tweaks to the plan continue to help? 

  • letii

    Hi thank you for the welcome everyone! I actually got a call this week saying that he was going to be seen in April. He get a really bad cough and have to give him his rescue inhale and if that's no working try the nebulizer, it's weird because the next day he will be wheezing and can't breath also will be like that for about 4 days is really bad. 

  • K8sMom2002

    Letii, if I had ANY doubts, and I couldn't get into see either the specialist or his regular doctor sooner, I would take him to the ER. 

    Have I shared with you the AAFA cheat sheet on asthma zones?

    Keep us posted! I'm so glad you'll be able to see the specialist sooner than originally scheduled!

  • Kathy P

    I'm glad to hear it's moved up to April, but if things are bad, you need to act quickly. Asthma is a life threatening condition – I'm not saying that to scare you, it's importnat to get medical help quickly if the meds are helping. The know your zones chart that Cynthia posted above is a good way to assess how his symptoms are.

  • Jen

    @letii - How is your son doing this week?  Is the coughing and wheezing any better?

  • letii

    Thanks, I have taken him to the ER plenty of times. His doctor and I talked about it and he's had about 4 steroid med in 6months and that's a lot for a 5 year old. He's had asthma since he was 1 year old it's just that this year and last have been really bad for him. So that's why we are going to a pulmonary specialist. 

  • K8sMom2002

    Letii, hugs … that IS a lot for anyone, especially a little kid. Here's hoping that pulmonologist will give you guys a good plan to help get things under control. When do you see him?

  • vshadow

    sorry everyone just now reading some comments haven't been on here lately but he is doing better he has less attacks since they increased his inhaler dose but we go to the pumologist the beginning of may that is the closest appointment we could get its at the children's hospital in Memphis I have heard get things about the doctor he is seeing.

  • Kathy P

    So glad he's doing well on the increased dose. May will be here before you know it! Are you seeing any issues with pollen season starting?

  • K8sMom2002

    VShadow, really great news that your kiddo is doing better with the increased dose. And the way this year is flying, May will be here before you know it! It's almost April already!

    I think it's terrific that a pulmonologist at a children's hospital will be seeing your kiddo — it's amazing what doctors who see this sort of thing all the time can add to the picture. 

    Is Memphis a long trip for you? I know my DD sees a specialist about two hours from us, but by the time you figure in parking and getting to the office early for paperwork, we plan for three. 

    Still, the experience and the knowledge that we get from her doctor makes it worth the trip. 

    What kind of questions do you plan to ask the doctor in Memphis?

  • Jen

    @vshadow - Have you thought about what you want to discuss with the pulmonologist?

  • letii

    Great news! I got my appointment moved for this Tuesday, April 3 with the pulmonary doctor.

  • K8sMom2002

    Wowza! That IS great news! I'm so hoping it's a terrific visit. Do you have all your questions written down on what you want to ask the doctor?

  • Jen

    What questions do you have for the doctor so far?  We can take a look and see if we can help you come up with anything else to discuss.

  • K8sMom2002

    Absolutely, what Jen said. 

    With my DD, getting a good solid clear helped us. And also, getting a "sick plan" helped — like, say she has a cold but no asthma symptoms flaring yet, what do we do? 

    We'll be glad to help!

  • letii

    That was a bad day for us my son got a horrible allergic reaction that morning. We went to the pulmonary dr at 2pm and did some asthma testing change meds, I told him about his allergy reaction and to just give Benadryl. He told me to get that check with his regular dr. Okay! Well headed home and gave him Benadryl that night he was getting worse and worse, head to the ER because he was getting it on his face too. Well there they gave him three injections and the epi-pen he transferred to our children hospital to stay over night because of low oxygen levels. The next day the pulmonary dr came in our room and told me sorry for letting us come home with such a bad reaction, they end up doing allergy testing on him. Going back for the results on may 2. 

  • K8sMom2002

    Letii, big, big  and one more  for all that you've gone through! I'm glad that everything turned out okay — that had to be plenty scary for you. 

    Glad you have epinephrine auto-injectors now — do you know what exactly was in the medicine that your son reacted to? 

  • K8sMom2002

    Spinach? Wow! So did he eat spinach and then have the reaction or was there something in the new medication that was similar to spinach that he reacted to?

    Our sister site, , has lots of good resources about food allergies.

  • Jen

    Oh Letii…I'm sorry to hear about the reaction.  I hope the upcoming appointment is helpful.

  • Kathy P

    @letii are you all set for your appointment next week? Is this for testing or did they draw blood for testing in the hospital and you are getting those results?

    Any more reactions?

  • K8sMom2002

    Letii, hoping you guys have had a few days without any more reactions to prepare for the appointment — and if you've had the appointment already, I hope it went well!

  • Jen

    @letii How did the appointment go?

    @vshadow How's your son doing?  Is his asthma any better with the warmer weather?

  • K8sMom2002

    @vshadow and @letii, checking on you guys to see how your kiddos are doing? I know at one point both of you had appointments … did you learn anything that was helpful? Hopefully the warmer weather is helping the asthma?

  • K8sMom2002
    Aven's Mom posted:

    Thank you. Yes pediatric board certified environmental and food through blood tests and the scratch tests. Even tested for celiac. Nothing has showed up ever. We are still pushing his pro air abuterol inhailer until he stops coughing every 4-6 hours along with Prevacid, singular, and advair. We were trying Zyrtec but I honestly thing it clogged his nose up worse with mucus. Thanks

    @Aven's Mom, just checking on you guys … hoping you have had a great summer and are looking ahead to a great school year. Did you guys ever figure out an antihistamine that helped? 

  • Jen

    I know some kids have already gone back to school, while others won't go back til after Labor Day.  Don't forget about the paperwork your child may need to have on file at school.  

  • Jen

    @Aven's Mom How did things go for him over the summer/fall and again, now,that it's colder?  Have you found a medication plan that works for him?