This is obviously a problem for your son and a worry for you. I would highly recommend that you see a pediatric pulmonologist or allergist to get a better understanding of why the asthma is not being controlled. Also working on a regimen to control the asthma on a more regular basis. At the present time, prednisone is the best medication to control an asthma attack. However, the other medications in varying doses should be able to get better control than you are describing.
If this is a real problem for you locally, you may consider bringing your son to National Jewish Medical and Research Center for an evaluation and developing a treatment plan. Speak with your son
hi, im sorry to hear what ur boy is goin through, he is quite young. my question to you is....do you have an iguana in ur home? or some type of reptile?? im asking because i had same problems, on same meds...and didnt know what it was until they did a ct of my lungs, which founds hypersensativity pneumonitis. it turns out that i was highly allergic to my iguana. since i took her out of the home, i am off my meds and no more attacks. i hope they find the cause to your sons ailment so he can be med free. good luck!
Thanks for your reply, We have no pets though. I try to keep everything in my home allergen free (as much as possible anyway but I am sure there is something I am missing that is triggering these problems. I am glad to know that though because his B-day is in 2 weeks and he is begging for a pet snake since he cant have dogs or cats. Now I guess that is out of the question too, not going to take ANY chances. Thanks again.
Sorry to hear your son is so fed up with the Asthma - I know how he feels and sometimes the constant medication can be a real nuisance. He is on so many meds for such a young age - but normally asthma seems to burn out if you have it in childhood, I hope this is the case for him. Having so many attacks would indicate to me that his medication isn't working to its best effects and I see no preventative medication on your list singulair is not a preventative medication and all the other drugs you listed are for sinus or for short term relief. his asthma is not under control for some reason it could be allergic reactions to carpets, dust mites, damp, dust, food allergies like milk , the medication itself anything! Seeing as he has had no pets how do you know he is allergic? I would reccommend a full work out with a respiratory specialist. Getting him involved in sports like swimming, when he is well enough, and getting an allergy test to put your mind at rest, you seem to be doing everything on that level, but sometimes eradictating all allergens means he can't build up his immune system to cope with everyday things that aren't a bother to children his age. A study was carried out some years ago which showed country children didn't suffer asthma as much as their urban cousins, the results showed their immune system was boulstered by constant openess to hay, animal hair and other dusts that city kids seems to get wiped away by a sterile environment!
Thanks for your reply. Preston is very difficult to treat....even his doctors scratch their heads at him sometimes. He takes pulmicort and flovent as preventers, sorry I didnt mention those earlier. He also had had a complete workup including allergy tests twice, I know he is allergic to cats because his grandmother has a cat and he cant even go over, we had a dog for a little over a week and he was miserable the whole time. The thing with Preston is he has so many other things going on I am not even sure if I am dealing with asthma!
He has severe joint pain, crazy rashes that even a dermatologist couldnt explain, stomach problems. We have tested him for everything under the sun with negative results.
His ENT doctor has suggested that we take him to Chapel Hill in NC for further testing because they just cant seem to treat his sinus infections even after 3 surgeries. Everything is just so confusing sometimes I feel like I could have a degree in medicine I research so much. Again thanks for your reply.
Your son is a carbon copy of my daughter. She did the exact same thing starting when she was 3-4, with severe uncontrollable asthma. By 6 she had sinus surgery, adnoids out, and still no help. Constant asthma attacks just like you mentioned. It turned out she had a very rare disease called Churg-Strauss which is a hypereosinophilic syndrome. Like the girl posted earlier about hypersensitivity pneumonitis, that is a similar condition, it is just confined to the lungs where as my daughter's disease is systemic and in 4 organs. Has he ever had a chest CT? If not I would ask for one ASAP. Many lung diseases do not show up on chest x-ray alone. Once she had the chest CT everyhting changed, she had severe lung disease. She had asthma but she also had an interstitial(outside airway) disease. Have you seen a rheumatologist or immunologist? Have you had any autoimmune work ups with his joint pain? The critera to be diagnosed with my daughter's disease is to meet 4 of these 6: asthma, sinusitis, pulmonary infiltrates(hazy areas on CT), eosinophila over 10% on blood count(eosinophilia is an increase of a white blood cell, eosinophils are what drive this disease), neuropathy (numbness and tingling in limbs), vasculitis (inflammation of the blood vessels). Most patients have bad joint pain, bad asthma, bad sinus, recurrent infections in lungs, fatigue, numbness of feet or hands, and a RASH. This rash can be very telling of this disease. It is bright red or purple? Does it burn or hurt? If you rub your hand over it, does it fade, or does it stay bright red reguardless? Please if you have any questions let me know. Look up the e-medicine articles off google on Churg-Strauss and see if you think the symptoms fit your son?
I agree that the folks at National Jewish can be extremely helpful in diagnosing & treating difficult asthma, particularly if your local doctors are unable to help you. Their website is nationaljewish.org & the are willing to consult with local doctors, as appropriate (though of course it is more effective if you can bring the patient to their clinic for a thorough evaluation).
They evaluated both of my children.
Please....any information you have on this condition would be appreciated. I am taking Preston to the doctor tomorrow and really want to make sure I ask all the right questions and suggest proper testing. Thanks. MOnica
Churg-Strauss is autoimmune in nature so tests for autoimmune disease is what you would focus on. I would ask for a CBC w/ differential looking for high wbc and high eosinophils. ANA (anti nuclear antibodies), for large amounts of circulating autoantibodies to show autoimmune disease, ANCA which is also for autoantibodies linked to Churg-Strauss(CSS), a esr and crp to look for internal inflammation. Really he needs an entire autoimmune blood workup, which includes organ tests for specific organ involvement, which includes liver, and metobolic profiles. Most definitly a chest and sinus CT. Churg-Strauss is a very rare disease, almost unheard of in children, but they are seeing more and more all the time as word is getting out about the disease. Many drs have never even heard of it, but there are beginning to be articles published about if a dr has an unresponsive asthmatic, with worsening symptoms, it should be considered. As I said before this is considered an eosinophilic disease, so there are high amounts of eosinophils always along with this. You mentioned he has had frequent prednisone bursts, have any of the tests been done closely to the times he was on steroids. Steroids will mask the results making them appear normal. That is what they do, they normalize your bloodwork, hopefully by controlling the disease, but many times your bloodwork can be fine on steroids but the disease is still active in the organs, therefore frequent biospies are needed many times to tell if the disease is active. Also a bronchoscopy is not too invasive(no cutting), and they could take fluid from his lungs and get a cell count, that would be highly accurate to show if he has high eosinophils in his lungs. My daughter is 12 now, she has had 4 sinus surgeries at this point, and many other biospies. It is frusrating. ALso she has GI involvement with this disease, the symptoms are vomiting, diarrhea, constipation, pain with eating, trouble swallowing, abdominal pain that can get severe, and nausea. Does any of this sound like his stomach trouble? Also not to scare you but I noticed your son is on Singulair. My daughter was too, for 2 years before she was diagnosed with this as she got sicker and sicker. Singulair has been linked with causing Churg-Strauss. There has been much controversy amoung drs because Signulair does seem to help so many, but there are a few that it clearly acts as a trigger for this disease. On the support group I am on for CSS, most with the disease(like70-80%) took Singulair before they got sick. Just to warn you, if he has high eosinophils, and these tests start showing he could have an eosinophilc disease, I would stop the Singulair, I think it did have something to do with my daughter getting this disease. Also can you let me know what al tests they have done(you mentioned he has had many tests and nothing showed up), and if they were done while on steroids? A high dose burst can affect test results for 6-8 weeks after the burst. If we take biospies we always have to wait and let the high doses get out of her system, because the tests mean nothing if they are done while steroids are in the picture. Just to let you know this is a disease that takes place over years. It starts with asthma and allergies, that wrosen over a few months to years, they become severe, also having severe sinusitis that is impossible to control, they then have the eosinophilic stage, that also lasts from a few months to a few years, where the eosinophils infiltrate their organs and inflame them and cause their high blood eosinophil counts. Common organs to have involved are mostly lung, sinus, and GI- but also heart, nerves, kindneys- it can affect any organ. Last stage is vasculitis, where the blood vessels themselves become inflame, this can restrict blood flow to organs, and many times the most common feature of vasculitis is a rash. That is as I described, as bright red or purple and does not fade, sometimes it is raised and can form nodules. The average time people begin with symtpoms to time of diagnosis is 3 years, because it takes place in stages. And it almost always starts, as asthma, allergy, and sinus which are so common, and it just seems so hard to get control of, and nothing seems to work. Mnay times people then get horrible"asthma" having attacks several times a day, many times geting pneumonia, and that is usually when high blood eosinophils are found. This is called eosinophilic pneumonia, and can look like regular pneumonia on a chest x-ray, the difference is eosinophilc pneumonia is not infectious there is no bacteria causing it, it is caused by this infiltrating blood cell (eosinophil) that inflames the lungs, and only steriods will control it, or chemo. Many do seem to have to keep getting on steroids for the asthma, that is so bad, but they just can't get well. The steroids go in and begin controlling the inflammaiton and then they are stopped because people with asthma only need a couple of weeks to recover, but then it was not enough to control this disease, so it comes right back leading to all the breathing problems, so it is an endless cycle until steroids are used for a very long period of time, and can control the inflammation. Many are not able to get off steroids, my daughter has been on them for 4 1/2 years, and has also tried chemo. Has your son had any of the tests I have mentioned. I hop e it goes well tomorrow, let me know.
Man! That's alot to take in. Preston is turning 10 on Friday and is on is way to the 4th sinus surgery. He has 10-20 attacks a day most days. Sometimes he will go for a couple of weeks with no symptoms of asthma but just feels bad otherwise. He constantly has heartburn, nausea and stomach pain, along with joint and muscle pain and what the doctors call exzema, ( a rash that has been on the backs of his legs and his arms for 2 years). None of the exzema meds touch it though. It gets so bad that it bleeds and makes sores. He has been tested for arthritis, lupus, general things you would think of with his complaints. I am going to ask for a CT scan. He has had many xrays of his chest but only ct's of his sinus and brain scans.
He has been on singulair for about 5 years or longer. That is scarey all by itself. Thanks so much for your time to help me understand more. If you can think of anything more you can email me raelynjewel at aol.com. Again thanks so much for your time. HOw is your daughter now? Is there a treatment? Can she go to school and everything like others?