Update: Now with a diagnosis! First pulmonologist visit what to ask or expect?

[Simon]

Update:

Our first visit went smoothly. They took vital signs (height, weight, blood pressure) and then we met with the Dr. who had reviewed recent chest x-rays of Ds and listened to his lungs. We did no other testing and they didn't suggest any. He showed me on the x-rays how his lungs were hyperinflated and prounounced Ds has asthma (or likely does). I am thinking RAD (reactive airway disease) is more likely given his specific history, but I'll take it for now. It is strange to shift my mindset from thinking this is wheezing with a cold to this wheezing/cough is an asthma flare, kwim?

Ds2 has started Flovent 110mg 2 puffs 2xday, then 4 puffs Albuterol as needed. They gave us a spacer and Ds hates it but the neb was taking 45 minutes so I am in love with the new system. Since Ds is sick right now (flaring I guess) we are using the Albuterol. He is also on Omnicef for an EI.

So, I am thrilled he is breathing better but I am worried the meds are making him crazy. He has woken up two nights in a row crying/inconsolable for 30+ minutes for no apparent reason. This is out of character. Could it be the albuterol?

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Ds2 is 14mo and has been hospitalized twice with pneumonia and bronchiolitis. He has not had RSV, which everyone tells me is the most common cause, but he has been sick A LOT since last November. I have lost count of the rounds of antibiotics. We have a nebulizer with albuterol and pulmicort and use them as needed. As I understand it, the goal of our appointment is to see if we just have bad luck or if there are any underlying causes that make him so susceptible to lung/chest infections, but I feel like I know so little that I don’t know enough to know what I should ask. KWIM?

Can any one offer some BTDT with pulminologists or breathing issues in kids? Does any one know what types of assessments they might do on someone so young to evaluate his lungs or lung function? Is there a credible Web site where I could read up some? I would deeply appreciate any information you can share.

ETA: I read some older threads here and he does not seem to have what people described as classic signs of asthma (lots of coughing, lingering cough after illnesses). What else can it be? Sigh.

[asha07]

I will keep an eye on this threat... my 5 month old is already on her second bronchiolitis, and her pediatrician says she is just "prone" to respiratory illness. I was going to ask to be referred to a pediatric pulmonologist on our next appointment.
Last night she sounded just like Darth Vader which is very scary in a baby!

[wendibird22]

DD2 had RSV at 7wks old and in the months that followed every respiratory infection caused wheezing that resulted in neb treatments. We were referred to a pulmonologist when she was about 8mos old. The first appointment they did their own height, weight, BP, and a full physical exam of chest, heart, ears, throat, etc. and asked me lots and lots of questions about her history. There wasn't any specific breathing test given. Since this appointment was during the late summer and DD2 wasn't ill at the time they scheduled a follow up visit for 3mos later and then 3mos after that. At the follow up appoint she had another complete physical, more questioning about what did/didn't happen during the past 3 mos and we left with a treatment plan (with very clear instructions of what med to use and when and nice instructions for our daycare too). Luckily for us DD2 hasn't had any other wheezing episodes and after her 2nd follow up appointment we were told we didn't need to come back and that she likely outgrew her issues. But we are welcome back if it does present itself again.

My recommendation for the first appointment is to come prepared with your own written notes about illness history, meds used, etc. Even though our ped had sent them a copy of her records the doc asked for this info from me verbally. And honestly trying to recall 8mos worth of illnesses, when they happened, what was involved, what meds were used, etc was hard for me to remember on the spot. Thanks heavens DH didn't take DD2 to that appointment!! I was trying to recall every cold, ear infection, cough, etc and what abx and steroid was taken and for how long and DD2 had been on so many different things it was just a jumbled memory. It didn't help that I was trying to keep DD2 entertained and out of trouble the entire time too so if you can bring someone else along with you that can watch your LO during the appointment. Oh and if your LO has had any chest xrays call the office and have them sent over to the pulmonologist. We did this and it was helpful for the doc to have her own copy of the xrays.

[truly scrumptious]

DS has been under a pulmonologist's care for about 2 years now, since his first brush with RSV and bronchiolitis. The pulmonologist has basically been monitoring him regularly, and prescribed him maintenance meds. She hasn't done any additional testing over and above a weight/height check and listening to his lungs every visit. I think her main role has been coming up with a long-term plan for his asthma (aka reactive airways disease).

Still, it is great that you're thinking ahead about being prepared for this visit. The last time we were at the hospital, they gave us a pamphlet called the "One-minute asthma guide." I don't know who publishes it, but I'll see if I can find it in case you can look it up online.

Even if your DS hasn't been diagnosed with asthma, it is still a great overview of the various meds and methods used to deal with respiratory issues, and it triggered a lot of questions in my mind, so it might do the same for you.

BTW, DS was also on albuterol and pulmicort nebs for a long time. (He's now on Singulair, Flovent and albuterol inhaler.) I would recommend asking the pulmonologist for a plan on what to do in a urgent situation if he has an attack (wheezing/coughing) when you can't give a neb treatment (e.g. it happened to DS at daycare.) After we asked about this, she switched him to an albuterol inhaler, so we could leave one at the daycare for emergencies. That way they can give him a treatment if he has an attack, even if it takes a little while for us to get him to the hospital.

[starmommy]

typical pulmonary 1st visit would include chest x-ray, labs, possible sweat test. You will be asked about prior illneeses, what meds you have tried in the past. If the doc is connected to the hospital where DS was inpatient, s/he can review records and x-rays that have been done in the past. There is other testing that can be done such as measuring lung function in infants and testing such as swallow studies, but these aren't done on the same day as your visit.