Does your child have breathing problems? Practical advice getting a second opinion?

[BalconyBirdie]

Hiya,

Will try to keep this short..  DD is 18 months old. About 4 weeks ago she started coughing in the middle of the night. I went in and she was wheezing really badly -- not like cold congestion. We took her into the peds the next morning and our Dr. said she thought DD had a viral lung infection (not RSV, she tested neg) but that the wheezing didn't seem exactly like that, and tha it wasn't usually that bad. It was scary -- skin sucking in between ribs, fighting for every breath, etc. We narrowly avoided a hospital stay & breathing tube. She went on steroids for a week (which made her crazy), and nebulizer treatments. At a followup, the Dr. put her on cingulair for a month.

She got sick about 3 days ago with a moderate-severe cough and cold, then started wheezing again yesterday. Not as bad as the first time. Coincidentally our ped follow-up to see how the Cingulair was helping was yesterday. The Dr. said that now she would consider this 'recurrent wheezing'. She put her back on another week-long course of steroids and changed her cingulair to a daily inhaled steroid, which has to be taken for a month, minimum, in order to even start working, and she wants us to do at least 3 months.

Of course if this is necessary we have no problem following this regimen. And of course we don't want to take chances with a breathing problem. However, I have some concerns about our ped -- when we have tried to refuse the chickenpox vaccine, she responded that children die from the chickenpox -- that's why there's a vaccine." In short, if DD *needs* that medication and it outweighs the risk then fine, but I'm worried our ped may be a little bit heavy handed with medication, etc. And I'm worried about 3 months + of steroid use in a baby who is not even 2.

Is this worth getting a second opinion on? If so, how does one go about doing that? Do you explain before the fact to your insurance? Just pay out of pocket? How do you explain to your doctor without seeming like a jerk that you wanted a second opinion? How do you decide who to go to for a second opinion?

Any thoughts/advice very welcome. Thanks in advance.

[sbgrace]

Ugh. I'm sorry the singulair wasn't more helpful. It sounds like reactive airway (which often but not always is later dx'd as asthma when a child ages). My son had that but the singulair did help him. Oral steroids are really hard on the body and a week is actually longer than we've ever had them for similar issues if I recall. And she's done oral steroids twice now in a very short period for a week at a time. That's not great and I'd agree that she likely needs an inhaled steroid at this point. Inhaled steroids are much easier on the body in all ways than oral. I'd much rather have my child on an inhaled steroid daily than to need multiple rounds of oral steroids.

One question before you jump there would be if you're using the nebulizer or inahler with spacer at the recommended doses (is it every 3 or 4 hours)?

Ugh. I'm sorry.

As to who to see if you can get into pulmonology they deal with these issues best. In some areas it's really, really difficult to get into them. I'm sort of wishing you were hospitalized as you would have seen and likely been followed up on with pulmonology. Did you go to the children's hospital ER?
I suspect pulmonology would have her on an inhaled steroid too at this point. I don't think they would have put her on oral steroids for a week but maybe they would.

[quantumleap]

That's cruddy. Can you ask for a referral to either a pulmonologist or your local asthma clinic? I've been on oral/IV steroids in the past, and I think my longest cycle was 8 days. A week does seem like a long time, but I can also understand where it might be necessary. The inhaled steroids are a totally different ball game though. Pretty much none of it gets into the circulatory system. Your child is not getting systemic steroids in any way! Try not to stress about that part of things too much.

I'm sorry the singulair didn't work for your dd. It's an awesome medication, but it's true that a certain segment of the population just doesn't respond to it. Too bad your dd is in that segment!

You could try checking out an ND. I saw good results with a combo of nutritional supplements (CLO, vit E, vit C, elderberry), two different homeopathic remedies, and Bowen therapy. Bowen might be a bit difficult on a two year old, but an ND might have some other suggestions.

[BalconyBirdie]

Originally Posted by sbgrace 



One question before you jump there would be if you're using the nebulizer or inahler with spacer at the recommended doses (is it every 3 or 4 hours)?

....

As to who to see if you can get into pulmonology they deal with these issues best. In some areas it's really, really difficult to get into them. I'm sort of wishing you were hospitalized as you would have seen and likely been followed up on with pulmonology. Did you go to the children's hospital ER?

Thanks for the help, sbgrace.. I'm  not sure what a spacer is? But yes, during the previous episode and this episode we've been using a nebulizer starting at every 4 hours and then going to every 6 hours.

There's no children's hospital where I live, unfortunately. I have been able to locate the names/numbers of a couple of pediatric pulmonologists. We have a follow-up with our pediatrician on Monday and I'm going to try and get a better idea of what exactly she thinks the underlying condition is and what she thinks this treatment program is going to accomplish (for example long-term vs. short-term). Then I guess I'll decide whether to get a second opinion. I'm trying to make up a list of questions to ask her so that I can better understand what's going on.. If you have any suggestions, I'm all ears. :)

Selkat -- sorry, what's an ND?