Sharing our story, and maybe find some advise.

Our son is almost eight years old, but had his first asthma attack when he was ten months old. We had no idea that he had asthma until he was three years old. Asthma runs in both his dads family and mine, but neither of us put it together.

I want to explain his asthma attacks, because they seem very different to me, maybe they are not and someone on here knows what I am talking about.
First, since he was a baby, winter has been awful for him. He gets a flare up roughly every two weeks, and they last for two weeks. Each day his asthma gets worse and worse, regardless of the medications he he takes, until something in his body makes it stop, and it goes away just about as quick as it came on, however it take a well over a week, all winter long. Asthma used to only really bother him in the winter, but as the years go on, his asthma is starting to be a problem in the warmer months as well. We did not realize this until I got his attendance records from school. His flare ups in the warmer months last 3 or 4 days, and the winter flare ups last at the very least 10 days.

He's had a complete PFT with aradol challenge, he had a 19% change. His lung function was at 82% which I understand is good, but even with the good numbers his asthma is so bad. He is seeing the best pulmonologist in the city, so they say. We have been with the new Dr for a year now, and about a month ago he was diagnosed with severe refractory asthma. He has been through every medication he can take for asthma. A couple of the medications caused him to have seizures, so those two meds are not options. 3 allergy shots a week. He was also using Verimyst but due to nose bleeds we have stopped using that.
His body seems resistant to the medications, all of them. All the pills inhalers and even allergy shots. His eyes are puffy with brown circles under his eyes. We hate that he takes so much medication and still gets sick. He also uses a peak flow meter and his normal best is 250, I noticed in November that is was dropping down to the low 200's and in December, he had a 10 day flare up, with his peak flow meter in the low 100's. He got better right before Christmas, and we had a relaxing Holiday. He went back to school after winter break and in two days he was sick again. His Dr said he needs to come out of school and live his life indoors, so that's where we are at now. He has a teacher come visit him and teach him 3 times a week at our home. Our life is so restrained at this point. We are concerned that his lungs will become permanently damaged. It is my understanding that the worse the asthma is, the less chance of "outgrowing" it, and the higher risk he is at for lung damage. He will soon undergo a VCD test to rule that out, but from what I have read, he does not have VCD. I believe the Doc will have him get a biopsy eventually, it's already been talked about. but no final decision has been made as of now. His peak flow is starting to drop once again even after being indoors for over a month now, no school, no playing outside...nothing. Just to go to the Dr is all he goes out. We did have him outside yesterday for about 5 minutes but that's it. I am so worried he's going to get bad sick again. Does anyone on here have a diagnosis of severe refractory asthma, and if so, do you have any advise for us?

Report post

4 replies. Join the discussion

So, I read what NIH says refractory asthma is, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3165919/, which is a class my daughter qualifies for. My 9 YO was diagnosed at about 15 months with severe/persistent asthma, and is on dulera 200/5, a new nasal inhaler you might want to try (Qnasl) as well as zyrtec for baseline. When she has subacute flairs (walking around, no cough), her PFTs in the small airways have been below 18%. We are going to be starting O2 at night probably this quarter. Her chest CTs show hyperinflation, mucus, and intersistial swelling (the type that leads to remodeling). She is prone to bronchial spasms, making things like sedation tricky.

What maintenance meds have you settled on? Have you talked about biologicals and more expensive IG(E) bniders like Xolair?

Allergy shiners: two ideas - manage allergies more proactively, if possible or have your son screened for von willebrands (can help explain nose bleeding too). I have been TWICE accused of beating my daughter in public because of bruising/blueing/ brown under her eyes. Just ideas.

GOOD LUCK, again Denver Jewish! :)

Report post

I am really sorry to hear of your daughter.

His current medications are

Pulmicort Flechaler 180 mcg 2xs twice a day
Combivent Respimat 20 and 100 mcg
Zyrtec 10 mgs daily
1000 UI vitamin D3 daily
Singulair 5mgs daily
3 Allergy shots weekly

He has tried many nasal sprays. They have all not made any difference in his swollen boggy turbinites (sp) in is nose. We switched to nasonex and he started having nose bleeds, and still was not helping the nose, so we then switched to verimyst with also caused more nose bleeds, and after 2 months still no changes in his nose. So now he is just on a saline nasal rinse.

Before the pulmicort and combivent he was on dulera and alvesco, before that he was on symbacort, advair, qvair, xopenix. He's been on several meds, I cant remember them all. Two that he tried caused him to have seizures so those were stopped. Also he uses a nebulizer.

His o2 has dropped well into the low 80's in the past.

We have talked about Xolair but his Doc says he can't have it til he is 12. We are still 4 years away from that option.
He's only had 1 pft. when he is sick he can't hold in his inhalers, can not blow his peak flow.

last winter he was hospitalized 3 times, the second time being the worse of the 3 times. hospital gave him magnesium, iv steroids and breathing treatments. His respiratory therapist in the hospital said he may needs mast cell stabilizers and also referred to him as being status asthmaticus.
He's had to be on oral steroids many many times. As i stated, his asthma attacks last many many days. He coughs and coughs run out of breath walking to the bathroom, or to get some water. Speaks 4 or 5 words and coughs like crazy. He often complains of his chest hurting and he has air that wont come out. He says he feels like there are prisoners in his lungs. His x-rays have showed hyperinflation and mucus, and i believe intersistial swelling. I believe I saw that on his medical records. I will have to double check.

I have not been accused as of yet of beating him, but we have experienced the school pretty much saying we are keeping him home for no reason and that I don't take him to the dr. I had to take the school records of him being at the dr very often. We pretty much live there. It has been our second home for just about 8 years now.

Report post

Oh, so lots of things. I get the hospitalization and low 80's - we were about 4 hours from intubation last time from a rhinovirus in late July. Viruses are a key trigger for daughter. Its is no fun! Still, even though my daughter's lungs are junk, she has better maintenance levels it seems and is able to be in school more - we go to the prednisone a lot, sure. It is on our plan if we have to use our rescue inhaler more than three times in a a row... so I have a lot of control over her care.

You have tried an LABA, symbicort, but you probably REALLY need one. Ask about Dulera. Pulmacort is not one, and we could not find any peace until we started Dulera w/ the long acting albuterol component. Taking too much combivent is not good for the heart - great for emergency - bad for long term. I am a fan of vitamin D, especially drops! I am not a fan of singulair, but if you like it, that is your call (it crosses the blood/brain barrier and makes kids loopy.)

Allergy shots - huh. My kids IG(E) went as high as 5100 iu. We do not do shots because the immunologist did not want to push the immune system any more. Is there any chance these shots are a contributing factor and not a mitigating one? (I do not know the answer to this.)

ENT - do you have a fabulous pediatric ENT? A T&A is recommended for asthma patients to help w breathing. We did this. But, you can also get a CT or MRI of the head/sinuses and get things like turbins cleaned and polyps removed, if necessary. We are talking about the cost/benefit of this right now. Has a sleep study been conducted? This might support a T&A to help breathing at night.

I really feel for you. The complaints sound familiar. I have seen daughter not able to speak, to need a wheelchair because lack of O2 prevents movement. To solve our issues we have a pediatric pulmonologist, an immunologist, and a backup team at the National Institute of Health. When we hit a wall, our local team says go to Denver Jewish for more diagnosis and care. The idea is to prevent permanent damage. We have talked about a pressure vest, bronchoscope, Xolaire, O2 at night to support day performance... we keep all the balls moving all the time and keep demanding better outcomes. She has had MANY types of PFTs, and gets at least 4 sets a year. If she "fails" one - like a <20% in small airways, we have to retest after the prednisone. There is no way she would even be allowed to be "sick" enough to be off school that long. She would be well (on maintenance), sub-acute and treated, or acute and treated. I have plans and meds for all of these - and doctor involvement for all of these. Also, I keep a pulse oximeter at the ready. Its like driving a car - the o2 is down and the HR is up - so her body is working too hard - hit the albuterol! BTW, Yale thinks older kids get more medication from inhalers w/ chambers than nebulizers. (They did a study.) Even in hospital, unless you are serious O2 (which we usually are!), you do not get nebbed.) If you are O2, there is better absorption of medication, but that is another story...

Good luck, in the meantime, get a 504 plan! :) Hang in there!

Report post

Hi Elli,
Wow, sorry it has been a few days since I have been on here. I hate to hear of other children with such a severe case of asthma, or any disease for that matter. It breaks my heart.

He was taking Dulera and Alvesco together 4 puffs each every day, for a year. He did not do so bad during the warm months, but as soon as it got cold, is was in a 10 day attack. I do not understand why his attacks last so long, nor why the medication does not work well for him. We have talked about Xolair but Dr said he can't try it til he is 12. I have thought about biological testing because of the research I have done on this rare but serious form of asthma. From what I have learned there is about 5% of the asthma population that has this asthma that my son has. They have found in studies that people with this form of asthma have an abnormal PH level. Not sure if it was higher or lower. Also that many of the people who participated in the study had the same gene. I have spent many hours researching trying to gather as much info as I can.

The reason he is out of school for such a long period of time is due to the cold weather putting him in an attack. He is very very sensitive to the cold air and that is what seems to make his attacks unmanageable. At this point being home and out of the weather he is doing well, but this is not any kind of life for an almost 8 year old, or any age for that matter. I also have noticed a fluctuation in his peak flow readings daily. In the morning when he first wakes, his peak is about 190, then during the day he gets no higher than 240. That's not bad, but one min it is 200, then 240 then 220 then 190. All through out the day it changes. There have been many times that he is not able to inhale his inhalers, can't even hold his breath for 5 seconds. To me this is very abnormal. He should be able to hold his breath for at the very least 20 seconds, and at least 10 secs for the inhalers.

The pulmicort can't be used with a chamber. He does take his combivent with the chamber.

I do not know what a 504 plan is, can you explain it to me.

He is a very bright child, learns very quickly and is top in his class. Being on home school his teacher has been able to get him passed the rest of his class and he will begin 3rd grade work here very soon as he is almost done with his 2nd grade work. He is brilliant in math and science. He loves school and learning. He hates all the medication and ask me all the time "how long do I have to take the medicine?" I'd rather he not take it being as he gets sick anyway, but I do feel that I have to comply with the Dr and hope one of these medications will just kick in and he will be ok and be able to lead a normal life. At this rate, he wont be able to hold a job when he is an adult. I am so worried he is going to have permanent lung damage, and that he will never "outgrow" asthma, and he will have to live his life indoors.

Also, asthma runs very strong in both our families (Dad's and mine as well) I do not have asthma, but my mother sister and brother. On his dads side, dad had childhood asthma, no longer has problems, grandpa has asthma still today, grandma developed asthma about 8 years ago, and also great grandmother had asthma as well. From what I know, grandpas asthma was just like our sons, and had bad problems with it as a child and he missed many many days of school because of it. He said it got better in his early adult years, but over the last 10 years it has gotten pretty bothersome again. One thing I think about is back when grandpa was a child, about 50 years ago, and there was only one medication for him at that time, and now there are so many meds and we have tried every last one of them...Dr says there is nothing more they can try on him, why can we not find a good combination of medication that can help him have a normal life. Since he has been out of school and indoors he is doing pretty good. Peak flow is a little low, but still in the green. I am confident that if he were in school and out in the cold weather he would be in another attack and quite possibly in the hospital.

As for the singulair I hate it. I feel like he is on an emotional roller coaster, one min he is laughing and playing next hes crying and saying no one cares about him.

Anyway, we looked into Asthma Camp for him, and as long as the Dr okays it, we plan to send him this summer. He needs to know and see that there at lots of kids who have bad asthma, learn more about asthma. His Dad and I think it will be a very good thing for him to go.

And about the symbicort, we tried that and he had seizures.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support AAFA

Help the Asthma and Allergy Foundation of America reach its goals and support people like yourself by making a donation today.

Donate to the Asthma and Allergy Foundation of America

Discussion topics

Public Service Announcement

Links and Resources from AAFA

Community leaders