Spring Soccer Begins

Last week, Monkey’s new spring soccer coach called a preliminary practice from 5:30 – 6:45. Monkey had a meal-sized snack right after school, so that he wouldn’t need to eat closer to practice time. He took two Tums before heading out to practice as well. These steps were intended to minimize any reflux that might trigger his VCD.

The coach had emailed to give us preliminary information, and had asked if there were any medical issues that he ought to know about, so I did send back an email explaining Monkey’s VCD and also sent him a pointer to the information sheet that is online.

Monkey did not have an attack until the very end, when they were doing an exercise where they would sprint up to one line, then back, then to the next line and back, and so on. (The coach noticed that he was struggling and told him to take a break.) I didn’t watch the whole practice, so I’m not sure how vigorous it was, but this coach does have a reputation of working the boys pretty hard.

PE is going well too. He can do the 6-minute jog with no problems. He hasn’t had any issues in their various sport/activity units so far either.

He did find his IMT trainer, but has not yet started using it with any regularity. I’m hoping that soccer season will motivate him.

Phys Ed

Amy asked for an update on how things are going, especially with PE.

I met with the teacher, who was quite friendly and seemed willing to be accommodating of Monkey’s situation. He did ask if it would a gradual increase in Monkey’s cardiovascular fitness would improve the situation, and I told him that it wouldn’t. I think it is key for his teacher to realize that this shortness of breath does not come from being out of shape.

PE overall has been going quite well. They have to do a 2-minute run at the start of each class, which will be working up toward 6 minutes by the end of the semester. They don’t have to run fast, they just have to keep jogging the whole time. He said he hasn’t had trouble with his breathing during these so far, even the time the teacher forgot to tell them to stop until after 3.5 minutes. I don’t imagine he’ll have too much trouble even with the 6-minute runs. I’ve suggested that this “low stress” running where there is nothing else (like a soccer ball etc.) to concentrate on is the perfect opportunity for him to practice his relaxed shoulders and hand posture, and abdominal breathing during running. He says he is doing that.

Monkey did have an attack during the “Pacer” test on his first day of PE. According to Fitness Finders:

Pacer (Progressive Aerobic Cardiovascular Run)
Students run for as long as possible between two marked lines set at 20 meters apart. They navigate the distance between two marked lines, keeping pace with a series of beeps. Students can miss two beeps before they are stopped. Score is determined by how many laps a student can do.

He says his score on this was about 1/3 of the goal they are supposed to be aiming for. I suspect that this will always be a challenge for him VCD-wise. Sprinting in a stressful situation(“testing”, increasing pace, and Monkey says that they also play “stressful” music during it) pretty much defines Monkey’s primary VCD triggers. Monkey doesn’t think they’ll be doing it often, but if they do, I may have to call the teacher’s attention to the fact that this is likely to remain problematic for Monkey. He did say that after he had to drop out for missing two beeps, he was able to get his breathing back under control without much difficulty.

He is taking the tums with breakfast, and it’s hard to tell if they are helping or not, since he does it every day, so has nothing to compare it with. He still hasn’t found his breathing trainer, so he hasn’t started with that. He’s in a school play and has been in practice 4 hours every night for the past few weeks, so I haven’t been pushing the cleaning up the room thing. The play is this week/weekend, so maybe next week he’ll find his IMT trainer.

Fall Update

I haven’t posted much since Monkey hasn’t been playing soccer, which is his usual trigger.

But he has had a handful of non-exercise-induced attacks, which is a new and not-so-welcome development. It started out with a few attacks at bedtime. In a few cases, he had trouble turning them around with his breathing technique. I tried giving him benadryl, in case there was an allergy trigger, and which at the very least helped him to relax and fall asleep. He also had one attack on the school bus, which resulted in him feeling that his fingers were tingly. We went back to the pulmonologist who suggested that the attacks might be triggered by acid reflux, especially since they seem to happen when he lies down (except the one school bus one). They suggested we try Tums before bed. I thought they were crazy, but it did seem to help. Upon reflection, Monkey also realized that he does sometimes have heartburn, and can usually predict at bedtime whether he probably needs the Tums or not.

Last week he also had an attack during school. He called from the nurse’s office because he couldn’t get it under control. He didn’t to come home, so I went over to see him. He seemed ok to me but said he was still struggling to breathe, and his fingers were tingly again. I asked if they had antacids in the nurse’s office and they did so they gave him a dose, and he went back to class. I asked him to call me at the end of class to see how he was doing. By that time, about 1/2 hour later, he was feeling completely fine. This happened during standardized testing. The pulmonologist (I called between visiting him at school and hearing back from him) thought it was stress-triggered, but he didn’t seem at all stressed about the testing (which was no stakes for him, and just informational for the school). Since he hasn’t had any problems during finals this week (during which he has been somewhat stressed) I don’t think the stress trigger makes sense.

He starts PE next Wednesday. I have an appointment to meet with the teacher on Thursday to make sure he understands that (a) Monkey needs to be allowed to stop an activity immediately if he is having breathing problems, and (b) that he is not faking it and it isn’t caused by a lack of fitness, and he shouldn’t be penalized for this. He has PE first thing in the morning, which is not ideal from a reflux point of view, because he’ll just have had breakfast. I think he’ll be having Tums after breakfast to mitigate that issue.

He also plans to re-start the IMT this weekend.

Camp Update

Monkey reports that he only had 2 VCD episodes during 3.5 weeks of overnight camp.  The first was the time described below where he got hit in the chest with a ball and got winded.  The second happened during a soccer tournament, during the second game.  This was a bad incident, because he had trouble getting it to reverse.  He started getting dizzy and went to the infirmary.  They had him breathe into a paper bag (he may have been hyperventilating too?) and that helped with the dizziness.  He recovered soon after that.

Since he has chosen not to play fall soccer this year to save time for Tae Kwon Do and clubs he is interested in at school, the we should have a quiet fall, VCD-wise.  (TKD normally does not trigger his attacks.)  The next test of how things are going will be PE class which starts in  January.

Winded + VCD

Got a letter from the Monkey at camp. A few days ago he got hit in the chest with a soccer ball and got the wind knocked out of him. This also triggered a VCD attack. He didn’t write about how he resolved it or how long it took, but it must have been hard to do the breathing exercises with the wind knocked out of him. However, he was fine by the time he wrote home, and that has been his only VCD attack at camp so far, so that’s good!

Another week of soccer camp

The week before last, Monkey was in full-day soccer camp, and only had one VCD episode all week. He’s at overnight camp now, and so far as I know, has not had any episodes yet. (He will write home and tell me if he has any episodes, but of course it takes some time for me to receive his notes.) He seems to really have the breathing and posture down. So, we’re in a good place at this point. He’s dropped the IMT training for the summer since he felt awkward about doing it at camp. I hope he will do it more regularly during the fall, so that he’ll be well-prepared for PE class in the winter semester, and spring soccer in the spring (duh). My guess is that that is all it will take to get his number of episodes down to zero. If that doesn’t do it, we will probably try the spiriva for soccer season.

Soccer Camp

Monkey has been in soccer camp in the mornings this week. So far he has not had any VCD episodes. I suspect that this is mainly because the camp’s drills, games (by which I mean not actual soccer games, but other games they play to practice skills and technique) and small-sided scrimmages lack the intensity of a full-field soccer game. However, it is 3 hours a day of pretty intense activity, so it’s great that he is not having trouble with it. His coaches said today was going to be a particularly active day with lots of running, so we’ll see how that goes.  Monkey reports that he has gotten much better at running with relaxed shoulders and relaxed hands, though he feels that he is a bit slower than when he runs tensely. We watched a local professional team play last night, and Monkey noticed one of the players running in a very tense posture.  It’s cool that he’s more aware of that now.  It’s unclear at this point whether the IMT is having any effect, but it’s easy enough to do and can’t hurt, so he’ll keep it up for a while.

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.