June 22 — Inspiratory Muscle Training

Today we went back to the speech therapist to learn what to do with the IMT device.  She had a student observing, and the student ended up being quite helpful as she had just had a class on VCD.

We decided that we could do the training without officially measuring his PI Max.  We just had him find a level on the trainer at which he had to expend a little effort, but could almost do the abdominal breathing without tensing up.  They had him lie on his back with a book on his belly and first practice abdominal breathing lifting the book.  Then they had him breathe through the training device and still do the same thing — concentrate on lifting the book as he inhales, and also trying not to tense up.  He only needs to do this for 3-5 minutes per day.  When it gets easy, he should increase the threshold on the training device a little bit to make it more challenging.

It seemed like a productive visit, and Monkey seems quite interested in doing the training.

June 21 — Some answers from the pulmonologist

We had Monkey’s pulmonologist appointment today. We met with the nurse practitioner.

They did the usual pulmonary function tests. Monkey had been off his asthma meds, except for Singulair, for several weeks. His results looked “normal” except for the “flattened inspiratory loop” which is characteristic of VCD. I asked if that meant that he did not have asthma at all, and she said she couldn’t tell just from one test, but that it certainly meant that he did not need the asthma meds for day-to-day functioning, or for his current level of athletic involvement. She said the only way to tell for sure would be to give him nebulized albuterol and see if his results got even better. Monkey wanted to do this and see what the results would be, so we did that. He did improve by 20% in one area. Over 10% improvement with the albuterol means that he does have asthma, but given the very good results pre-albuterol, his asthma is so mild that it will probably never bother him unless he gets into very competitive sports.

She explained to Monkey what an asthma attack would feel like compared to a VCD attack (the tightness would feel like it was in his chest, and he might have a deep, from the lungs, cough that he would have trouble kicking).

Looking at his eyes, nose and mouth, she said she did see evidence of allergies, so that he should either stay on the Singulair or switch to Claritin (or if necessary he could use both). Since he is doing well on the Singulair, we will probably just keep him on that at least through the summer, though I will do some more research on the pros and cons of each. She said that there were not long-term side-effects to Singulair the way there are for things like the corticosteroids.

So, he is staying off the Advair, no longer using the albuterol and intal inhalers prior to exercise, and does not need to have the albuterol with him whenever he exercises. But we will send an albuterol inhaler to (overnight) camp just in case he does start having real asthma symptoms there.

One anti-side-effect we are hoping for now that he is off the Advair is a little more growth. (Monkey is still under five feet tall.) Advair can temporarily slow a child/teen’s growth. In Monkey’s case, his slow growth is probably due to genetics more than the Advair (based on my own growth pattern) but it is good not having that side-effect possibly piling on top of the genetics anymore.

I asked, and she pointed me to an information sheet on VCD that we can send with his medical forms to his soccer day camps, just so someone there knows what his condition means, though he does so well controlling it, that I don’t think it will be an issue.

My only disappointment with that appointment was that their spirometry machine was not set up to measure PI MAX which we had hoped to measure today to help us know the correct settings for his IMT training. So I have to check with the speech therapist whether she can determine that well enough using the IMT device itself, or whether we need to set up a special appointment to get that done before he starts.

Monkey also had a soccer game today, and had no attacks (yay!), though we had a longer than usual half-time break due to a lightning storm passing through, which probably helped.

June 19 — Another good soccer practice

Monkey did soccer again today with no inhalers.  He had what he described as one pretty bad attack, but he was able to control it with the breathing exercises.  He said it just took a little longer until he felt under control.  He still feels good about the fact that he can control this himself.

We had a talk about the Spiriva.  He’s in agreement with me that he’d rather not be on it unless it’s really necessary.  So, we are going to try the inspiratory muscle training first.  Then if he is still getting attacks every time, he can decide whether he wants to try it or not, depending on how troublesome the attacks are to him.  Soccer season ends next week, and I’d rather not experiment while he’s away at camp (in August) so we probably wouldn’t try it until the fall (and if he doesn’t play soccer, he may not need anything anyhow, in which case we might not try it until next spring).  But we go to the pulmonologist on Thursday, so we’ll see what he has to say about it.

An aside — VCD following cardiac surgery

Even though this blog is intended to be a record of Monkey’s experiences with VCD, its diagnosis and treatment, I know that other people who also suspect or know that they or their child suffers from VCD have found this website to be a valuable resource, so when I find new information about VCD, I will try to post it here.

Today I discovered a blog about a 3yo girl who has a diagnosis of VCD following cardiac surgery. It turns out this is a documented complication that occurs in about 2% of adult cases. I didn’t find any stats on pediatric cases. Here’s an abstract:

Vocal Cord Dysfunction after Cardiac Surgery: an overlooked complication

June 14, 2007 — Soccer Practice with no Inhalers!

Today Monkey decided to try not using his inahlers prior to his soccer practice.  (Of course, he took them with him just in case that didn’t work out.)  It worked out fine!  He did have one full-on attack about an hour into the practice, which he controlled with about 5 minutes of his abdominal breathing.  Almost an hour later, he felt another attack coming on, which he pushed back with the breathing exercises.  So, it does not appear that the asthma inhalers make a difference (consistent with the theory that these attacks are not actually asthma attacks).

Prior to today, he was using 2 puffs of albuterol followed by 3 puffs of Intal before every game and practice, and before other strenuous exercise at school.  (This routine takes 10 minutes, since there’s a minute between puffs, and 5 minutes between the albuterol and the Intal, and I’d been concerned about how that would work with a high school PE schedule, so it will be great if further evidence confirms that this is unnecessary.)

June 12, 2007 Received Threshold IMT Training Device

Monkey’s Threshold trainer arrived in the mail today. Due to general June craziness, I had to wait and schedule his next speech therapist appointment to learn how to train with it for June 22, which will be the day after his next pulmonologist appointment. While at the pulmonologist, I’ll make sure they measure his PI MAX (maximum inspiratory pressure, which I assume is part of the usual spirometry workup, but may not be for all I know about it). That number is needed to determine the correct threshold setting for the trainer. I’ll update here after he gets started, of course.

June 10, 2007 Home Soccer Game

Another good game for Monkey’s breathing. He said he was “basically” fine. He later elaborated that he had felt it coming on once, and pushed it back with the breathing exercises, and did not have any other problems with it.

He is still using the albuterol and intal before his games, but for his next practice (Thursday), he may try going without it. We’ll have them there and he can use them if he ends up needing them.

June 8, 2007 Pulmonologist update

I spoke with the nurse at pediatric pulmonary again.  She confirmed that we can take him straight off the advair without stepping him down to the lower dose.  So, we’ll go ahead and do that right away.

She also confirmed that they faxed the PFT (pulmonary function test) results that the speech therapist wanted.

So, now we are waiting for the Threshold IMT trainer to arrive, and then we’ll make an appointment with the speech therapist to learn how he should train with it.

July 7, 2007 Home Soccer Game

Monkey had a home soccer game tonight. We had 3 subs, so he was able to get breaks, which definitely helps. (He always, understandably, has more attacks when his team has no subs and he’s “on” the whole time, except of course when he can’t be due to the attacks.)

No attacks tonight! Monkey said he consciously did the abdominal breathing exercises when there was a break in the action, and he believes that this prevented him from having any attacks for the whole game. (Or, he said, maybe it was just a coincidence — I encouraged him to trust that he was keeping it under control by doing the breathing.)

If things continue this well, we won’t need to try the Spiriva (sorry Val).  If he does continue to have attacks when he plays with fewer breaks, then we’ll probably try it and see what it can do for him.  But I didn’t want to change two variables at once, by having him just “getting” the breathing and also starting on a new medication at the same time, so we’ll wait and see what he can do with breathing/relaxation/posture alone, and then decide whether it is worth trying the meds.

June 7, 2007 – call to pulmonologist

I called the pulmonologist today to request copies of some of Monkey’s spirometry test results for his speech therapist, who had asked to see them.

I also asked about weaning Monkey off of all his asthma meds prior to our next appointment, so we can see what his breathing looks like without them. (I left a message with the nurse, who got back to me with his response.) He suggested that we keep him on the singulair, but take him off the advair. He said to stay on the Spiriva. I told the nurse that we hadn’t even tried the Spiriva yet. Since things are going well right now, I’m not inclined to do so. He also said to go off the Intal inhaler (monkey uses it before strenuous exercise) a week before his appointment. He wasn’t specific about when to go off the Advair but since he has only a few doses left, I don’t think we’ll start a new one. I’ll call again tomorrow to confirm what he wanted us to do regarding that, and whether he wants us to step down to the lower dose before stopping it all together.

I’ll be very interested to see what happens at the next pulmonologist appointment. I am of the opinion that Monkey probably does NOT have asthma along with the VCD, but we’ll need to be careful about jumping to that conclusion, of course.