Why can't my son breathe?

Question

Every month,since birth,we have taken our 3 year old son, 3 hours away, to a pediatric pulminologist. Our son has had severe asthma since birth. He currently is taking pulmicort ( inhaled steroid) twice each day, singulair ( For allergies- I think...), and switching between albuterol,flovent, and xopenex every four hours- day and night. He does not have cystic fibrosis, thank God! We have no animals, just in case his allergy tests were wrong. Why is he still struggling? He has been on oral steriods nearly every month, sometimes more, since birth. We have to call the paramedics to rush him to the hospital on a regular basis. There, he will receive oxygen, and they will give him intravenous steriods. Our handsome, sweet, sincere, innocent little boy is struggling to have a normal childhood. He cannot even run without an attack. Is this normal for asthmatics? Is there more we can do? My heart sinks to hear him wake me up at night, gasping for air, and begging for help. Please help.

He does have a nebulizer at home, and an aerochamber for away for home, but there is no way of giving him oxygen or intravenous meds. from home.

P.S. We have been advised to clean our walls, clothes, carpets etc. in vinegar. We have done so for two years now, but no difference.
Actually, he is now going through a phase, where is will not lie down at all. He sleeps in daddy's recliner, because he is terrified to not be able to breathe. He repeatedly wakes up to come to me, and asks me to listen to his chest. Could he develop anxiety from this?
We live in Florida, for the person who asked.

Answer 1

Well, I wasn't going to throw my great percentage away...
But seeing your story, really moves my heart...

I don't know where you are...
I work as a nurse in CA... and I know some amazing doctors here that can help you...

Contact them here:
Childrens Hospital Los Angeles
4650 Sunset Blvd.,#83
Los Angeles, CA 90027-6062
[phone]

I know that they have the best cardiac doctor, Dr. Von Starn there...
But, I also know they have excellent division of pediatric pulmonology and they also have undergoing research for problems that your child has...

But to me, your child are not supposed to run around... Stress, fatigue, and cold weather will trigger asthma, that's the bottom line.
However, if the problem it's not in the non-compliance CHLA will probably be able to help you...
It's the best children hospital in the universe... no, I'm not kidding... It's true...

So hopefully it will help you, even though you probably won't pick my answer as the best answer...

PLEASE CALL THEM AND TELL THEM ABOUT YOUR STORY, THEY WILL BE ABLE TO HELP YOU!!!

Answer 2

I'm not a doctor, so please don't think I'm trying to diagnose, but I do want to throw another alternative into the mix... My 14 month old daughter has nearly resolved interstitial lung disease and is on oxygen at home at night (and nighttime pulse oximeter also). Makes our lives a lot easier, and she does not wake up gasping at night thanks to the O2. Matter of fact, the more time per day she spends on oxygen, the less she wheezes and struggles even when off the O2..... She also has asthma, takes the Singulair, Pulmicort twice daily, Albuterol every 4 hours (was on Xopenex but the insurance didn't okay it this last time), and has been on Orapred (oral steroid) continuously since less than a month old, and with any illness has to go into the hospital for IV steroids. She also has reflux and takes meds for that. Thanks to proper treatment, she is overall doing quite well compared to last year. I brought this up not to scare you but because quite often parents of kids with ILD (especially ILD's such as NEHI) are told for years that their kids just have asthma and don't get the proper treatment they need (oxygen is a biggie!!!). ILD is quite rare in kids, but if your gut is telling you that this is something more than asthma, then you might consider pushing a little harder. Some of the most common symptoms are abnormal x-ray, fast breathing (breathing in the 60's is normal for my daughter, we have seen as high as 120 but that was at her worst), need for oxygen (an ILD kid needs to keep their saturations at or above 94% or they struggle, so 90 is not okay), failure to gain weight, and pulling in at the neck and chest when they breathe. I'm putting a couple of links below with further descriptions. I hope I'm way off, but just offering another possibility...... Good luck.

Answer 3

I do sympathize with you. Though I did not have a child with severe asthma, I grew up with a brother that did.

My brother is now 45 and his asthma rarely acts up any more. As a child he was very sick and in and out of the hospital all the time. I know this may sound old fashioned, but back in those days the doctors told my mother that asthma has cycles of seven years. If a child did not grow out of it by age seven, they they probably would by age fourteen, or twenty one etc.

In my brothers case this seemed to ring true. By the time he was seven he was still pretty severe, by the time he was fourteen he still had it, but less frequently. By the time he was 21 he still had it, but it was manageable. In his adult years he really is only bothered by it, whenever he gets a cold or some respiratory illness. At these times he has to take inhalers and other medications til the illness has run it's course.

I hope your child will also get better with age. Sometimes, doctors advice back in the day was right. In my brothers case it was. I also know others that had severe asthma as a child and now, as an adult it is much more manageable and only happens rarely.

I am not downplaying the severity of your childs asthma, I know it is very, very worriesome to you. My brother scared us all, when he was young with his episodes. We feared the worse, many times. I hope your child falls into that category that does get better with age, as my brother did and others I have known.

Answer 4

I went through the same thing, my son has had asthma since birth, we cleaned like maniacs everything, with bleach, you know in the long run it made no difference. He is 17 now and we are on nebulizers less frequently, but he does have a spell now and again when he needs frequent Pulmicort, Albuterol, atrovent, advair, the whole med cabinet, it is heart breaking and you blame yourself alot but dont, make his child hood as normal as you can, have you seen a immunologist??? sometimes kids run short of a specific immunity and sometimes they can help... dont worry.....

Answer 5

I am so sorry.
I was just diagnosed with severe Asthma and I am 33. It is very scary for my age so I can't imagine what it is like for him. I am learning some new things everyday. I have tried everything I can think of too and I am still like he is. I know that is not uplifting to you but there is hope for him and me.
I know the doctor told me:
To tear up my carpet if I had it in my house. If I didn't tear it up make sure I vaccum weekly with carpet treatment that kills dust mites. Get a bagless vaccum so it doesn't stir up the dust from the bag.
Get a dehumidifer and put it in his room or where ever he is going to be the most. Or get a HEPA air cleaner
Make sure your humidity is between 35-40% because Mold and Dust mites live where the humidity is high.
Check your home for Mold. mold is deadly.
Plants carry mold too.
Get Allergen Bed set for his bed and pillows.
Wash his sheets and pillow cases every week in hot water.
When you dust use those wipes instead of spray with a dry rag.
Use window shades instead of blinds or curtains unless you wash his curtains once a week too.
When you are cleaning make sure he is not in the room and if he is make him use a mask.
Don't let him have nik naks or stuff animals in his room if he does you need to clean them once a week.
Keep his closet closed because of the dust that could get on his clothes.
Make him take his bath at night so he washes all allergies he has on him.
Use a central filter in the furnace
Cover vents with filters and put a allergen filter in your heating and cooling unit.
I heard that if you get a chihuahua it will help him too.
I know this is alot but your son is worth every bit of this.
I wish you the best and check out these websites. They have helped me. I still have a lot of trouble but I am getting better with every bit of information I get.
I take Atrovent 2-4x's a day, Flovent 2x's a day, Albuterol 4x's a day and My breathing machine every 4-6 hrs and singulair daily, I even take claritin once a day, I was taking Predisone 10mg a day but I just take it when I get really really bad. You might ask if he can take theophylline for night time. He maybe to young. I can't take it because I have a thyroid problem and it interfers with that.
Or ask about Zyflo, Xolair, Advair, Serevent, Aerobid, Qvar or Asmanex. Just some suggestions since he is so young. I still get out of breath. I lost my job and I am not as active as I use to be.
Sometimes I sleep in the recliner too.
You might try green tea, Breathe easy tea, or Elder Berry -- Health food store stuff. You might want to put some honey in it.
Try not to give him milk late at night. Milk thickens his mucus.
You could try mucinex too.
Make sure you keep him on a tight schedule. You may have to get him a peak flow meter that keep track of his breathing rates and keep a dairy to take to his doctor. So I know what that baby is going through and I hate it.
Stay positive because I know there is hope for him.
Sorry this is so long but I just want to help and don't want anyone to go through this.
Please let me know how it goes.
you might try to elevate his bed.
And yes it does cause anxiety.
The EMT told my mom that if she talks to me calmly and tries to calm me down it will help. Rub his back.
Oh you can tap on his back and that helps bring up that mucus.

Answer 6

It does sound like he is going through so much and my heart goes out to him, and you guys as well. I don't know if he was premature any or not, but the lungs are the last thing to develop. Even if he wasn't, and is having such problems, and its not something like Cystic Fibrosis, most childhood allergies are grown out of...in other words, the older he gets, the less trouble he will have. Hang in there. One day, he'll be quarterbacking his high school football team!

Answer 7

Mayb i can u tell u something..I am a astmatic patient..im sorry for u son about tht but this might help him..I have astma i take the inhaler Pulmicort,Flixotide,Ventolin The strong ones tht i use when i cant breath is Ventolin... the doc told me to use flixtoxide 2 times a day but i only use it at night.. So solution tht MIGHT help is tht : tell him to get tht inhaling excersise i dont wht to call it there r 3 balls ther blow into the tube do this evryday lung capacity will increase. 2nd : Do more exercise jogging or swimming but dont tell him to do too intense.. 3rd:dont make him get sputum (my case always) sputum like when u cough the sound comes..from ur lungs.. dont no how to explaing further help please contact:[e-mail]
P.S Dont make him play or clean or do something in Dusty areas tht will start his asthma 1 CURE tht my DOC told me is tht
When EVER he feels like he cant breath a LIL bit EVEN tell him to take the inhaler only if he feels like he cant breath dont tell him to wait to ask u if he feels then tell him to ..tht might stop further serious asthma attack..
HOPE THIS HELPS

Answer 8

The first thing you need to do is get rid of all your toxic cleaning products and toxic laundry products ect and replace them with non toxic products. Many of those products exerbate asthma problems. Also limit the amount of stuffed animals he has in his room with him. Clean your entire house with non toxic cleaners once you take the old cleaners to hazardous waste place near you. (FYI the trash men cannot take those old cleaners with your regular trash as they are considered hazardous waste). Shampoo all of your carpets with a non toxic mixture to clean your carpets. Start washing all of your clothes in a non toxic laundry detergent also. You may also want to get someone to come out and check your house for mold and other unseen chemicals that may be in your home giving off nasty fumes. I cannot think of what those people are called that do that stuff but ask around or check the yellow pages and you should find someone who will check your house for you. Once you get the house checked and get rid of all the toxic chemicals you clean with etc I am betting he will have fewer asthma attacks or maybe even none. You have a lot of work cut out for you with buying all new products and cleaning the house from floor to ceiling but it will be worth it in the end.

Answer 9

Well I watch a lot of court tv and I saw on one of them that a family was getting sick for no reason and it turned out to be mold in the house that no one could see it was behind the walls, I say check you house for asbestos it could be making matters worst for you son but not harming anyone else in the house from what you can see.

Hope this helps, good luck

Answer 10

Well im fifteen now and i used to have severe asthma also. I couldnt run or play as much as the other kids but eventually i kinda grew out of it. Just make sure your son eats extrmrly healthy, keep him very very hydrated, and Keep a close eye on him.