Asthma ouf of control

[greenbeanmama]

My four-year-old's asthma is out of control and I don't know what to do.

Last winter he had a lingering cough for two months - nothing serious, just noticeable.  By the time I finally decided to take him to the doctor and made an appointment, it pretty much went away (it takes six weeks to get in to see our doc usually).

This year, after three weeks of coughing, I took him in.  The doctor said he had reactive airways, and gave him an albuterol inhaler to use as needed, and wanted him on Singulair, which I wasn't comfortable with (he has no signs of allergies and I don't like all the side effects associated with it - who wants a four-year-old to have suicidal thoughts and nightmares?)

In January, my son had a horrible, horrible coughing fit that landed him in the ER, and then in the hospital overnight.  Since then, he's been on Pulmicort twice daily (through a nebulizer), and albuterol "as needed" - which has been waaay more frequently that I think it should.  Two days ago it was six times in one day.  He's been on oral steroids three times since the hospitalization.  The oral steroids seem to calm everything down, but once he's off of them, he'll only be okay for a week before things start getting bad again.

I have taken him to the doctor (different doctors at the clinic, since our doc is so hard to get into, especially same-day appointments) a total of six times this year - he's only been to the doctor six other times in his life, not counting well-child check-ups.  I'm not one to medicate unless needed.  But my son is full of asthma drugs and he's still having a hard time breathing and is coughing hard enough at times that he can't finish a sentence.  The docs aren't listening to me - I tell them what he's taking and how often, and when albuterol stops working that's when he needs oral steroids, and they're not getting it.  One doctor said that if he isn't audibly wheezing, then he's fine no matter how much he's coughing.  One doctor (the one who was on call in the ER when we took him in) said that OTC cough medicines should help.  I had to fight to get him the oral steroids this past time, even though his oxygen levels were borderline for hospital admittance and he was coughing all over the doctor.  These doctors see him for five minutes.  I am with him all day, every day.  Why are they not listening?  Can't they even see him struggling to breathe?  I've been charting how much my son's been coughing, and the severity (tolerating physical activity, has to stop playing because of coughing, refuses to play, how often it wakes him at night, etc), plus all the meds he's been taking.  But they seems to make no difference.

Finally, I was able to get a referral to a pediatric pulmonologist, and we have an appointment next week.  What kinds of things should I expect?  Will they want to do allergy testing?  What kinds of questions should I be asking?  I hope this is a step in the right direction - my son is really scared right now, and so am I.

[mbravebird]

I couldn't read without posting -- that sounds really challenging, and I know it's so frustrating when the docs don't seem interested. I'm glad to hear you got the referral. My youngest son had a really bad croup this year that landed him hospitalized in intensive care, because the meds (albuterol & something else) weren't opening his airway and his sats were really low, even with the oxygen mask. They actually used helium to open his airway, eventually. We keep steroids on hand just in case (and we're not a steroid kind of family. Airway stuff is scary, though, as you know.)

Since that incident, we've gotten him craniosacral adjustments to support the tissues in his airway staying open and we've identified some homeopathics that help him if given very very early in the cough. He hasn't had another incident, thankfully. Are there alternative approaches you can experiment with along with the traditional meds? Is there an alternative practitioner who might be more willing to sit with you and really talk and think about why his health is so different all of a sudden? I'm wondering specifically if homeopathics and herbs might help. Have you considered freeze-dried nettle supplements? They take a couple of weeks to kick in, but are powerful. You could also consider doing a parasite cleanse, and see if that helps, as parasites can cause a generalized inflammatory response, and some can cause coughs in particular.

Are there any different foods he's been having that could be giving him a tendency to have inflammatory reactions (increase in gluten, dairy)? Mold in the house? Any other odd symptoms, even if they don't seem related?

Hugs to both of you...

[Peony]

Thank goodness you have an appointment next week with a pedi pulmonologist. My 4y had uncontrolled asthma for years, we did all the nebs, inhalers, etc... that the regular docs suggested. Similar story, multiple hospitals trips for breathing problems, pneumonia mutliple times a year, coughing for months and months at night. Last fall we went to a specialist as well, immediate difference. We switched inhalers meds, switched to a different inhaler delivery system, switched nebs as well, and as much as I hated to, I agreed to give Singular a try. For us, and I know it isn't for everyone, Singular has been the magic pill, it has been beyond wonderful. She has improved so much that I can control her asthma by mostly Singular along now. No hospital trips yet, no pneumonia, not even a bad cough all winter! We have not done allergy testing but because our particular doc wants to wait until DD2 is closer to 5 for various reasons. 

What was suggested to us was an entire overall of our life, changing pillows, bedding, dustmite covers, checking the house for mold. We did 2-3 appointments fairly close together while we were changing meds, a follow up and then we were cleared for 6 months. 

[sbgrace]

I was going to see he needs a pediatric pulmonologist and fast--I was so glad when I read that's happening. I think they are much better at controlling asthma. It made a huge difference for my son (and he uses a peak flow monitor to see if he's in trouble or headed there before the asthma strikes). I really, really think and hope they will manage your child well too. I'm sorry it took so long (and so many oral steroid doses) before they referred you. Bring your records--it's wonderful you're keeping that data.

With my son they used a machine to measure his lung capacity (he would blow into this device at a set time) and then did albuterol and waited for it to kick in and repeated the test. This verfied asthma. They had tried that when he was younger, though, and he was too young to do it correctly. I'm not sure if they do it at four. Where the pulmonogists seem to shine is in prescribing the right meds and understanding the importance of monitoring the lungs before the really bad hits. You are absolutely right that this is uncontrolled asthma and it's not being managed effectively. This is exactly what a pulmonologist should do well.

As far as supplements there is some interesting research out there on b12 injections and pediatric asthma. We're going to try it with my son if we need more this summer. FWIW, he does wonderfully on singulair and I was afraid and resisted it for so long. No side effects. I was told they rarely see side effects and when they do a child will stop the med and go back to normal. So we tried it and I'm glad we did. That said, it sounds like you need inhaled steroids instead to me.

[greenbeanmama]

Oh good.  So we'll be on the right track soon, it sounds.  One doctor told me that all the pulminologist would do is tell me to keep using Pulmicort.  But it sounds like there is help for him; we just need to get the right people on our side.  The oral steroids will keep things in check until Wednesday, my son had a better day today, and I'm way more calm now- thank you, mamas!

[Shantimama]

 My son and I both take Singulair and it has been a huge help with no side effects, certainly not anything like suicidal thoughts and nightmares. Using Singulair decreased our need for inhalers and being diligent about cleaning our home without chemical products, removing carpeting, keeping up with the dusting has meant that my son only needs to use his inhaler very rarely.

I hope everything goes well on Wednesday

[3TsMom]

My son had severe asthma for several years and reading your post brought me right back to how horribly scary it was.  Then around 8 months ago he had a severe reaction to vaccines and as a part of his treatments one of his doctors put him on Vitamin D.  As a result, his asthma disappeared.  We were so shocked because his body was at a horribly weakened state, but so thankful.  He was a rescue inhaler at least once a week kind of kid and we were constantly carting him to the ER.  He's had one asthma attack in 8 months while on the Vitamin D and that one attack was during a week he also got less sunlight because a cold front came through and I got lazy with getting him in the sun.  If you want more info on how we got rid of his asthma you can read a detailed post about it here.  Your story sounds so similar to ours, I couldn't help but to share what worked for us.  We are off the neb completely and he no longer uses the steroids or preventative.  Good luck to you and I hope this helps a little!

[californiajenn]

I would strongly suggest you take toxic foods like grains and industrial seed oils out of his diet. They are inflammatory and only making his asthma worse. I would also remove dairy for a while.

He should be taking magnesium and Vitamins B12 & D at minimum.

Chriopractic work and a good chinese medicine doctor will help you get rid of this.

Asthma is a sign of chronic inflammation that will only get worse in the future if you don't stop it now.

Until you get this under control, try the Singular. It's much better than him not breathing.