19 Month Old & "Breath Holding Spells" Please Help!

Updated on July 25, 2011
M.A. asks from Dickinson, ND
3 answers

A brief history first and a foremost: my son is now 19 months old and has been having "breath holding spells" consequently causing him to pass out, for the past 9 - 10 months. Since the time he was a few weeks old, we started to see some loud noisy breathing and a decrease in his eating. After many trips to specialists, we found out he has a condition called laryngomalacia (where his epiglottis was floppy and "underdeveloped" obstructing his airway, causing the loud breathing and the struggle with eating. At around 5 months of age he had a procedure to correct the epiglottis, which was considered to be successful. However, his eating had not improved. Last year in August, he was admitted to the Mayo Clinic in Rochester MN for evaluation and for treatment of low caloric intake and dehydration. While we were there he had a swallow study done which discovered he was aspirating on thin liquids. They believed that once we started to thicken his liquids, he would feel less afraid of drinking and would begin to drink more and then gain weight. So with frequent (2x/wk) visits to speech therapy and thickening his liquids, we were hopeful. Needless to say, this last April on another visit to the Mayo Clinic, they opted to place a permanent feeding tube as his caloric intake was not sufficient and was beginning to effect his growth (except for when he was born ((50th percentile)), he's always been far under the growth curve for height and weight. In the 8 months between the two Mayo appointments, he had only grown an inch and gained a mere three pounds.
Starting this last January (before the feeding tube), he began to have these weird "falling over" type spells. He could be playing with toys on the floor, walking over to something, or standing watching TV and would just fall flat on his back for no apparent reason. I would go to pick him up and his eyes would roll in the back of his head, his eyelids would flutter and he would just lie there completely limp. When he would come to, he would be lethargic for easily 20 - 30 minutes. No one could tell me what was happening. I consulted with his local pediatrician and subsequently took him back to Mayo to see a Neurologist for fear he was having some seizure-like activity. They did an EEG, an ECG and an MRI, all of which came back completely normal. GREAT... but what was happening to my son!?!? The best guess the neurologist had was that they were in fact breath holding spells and that he was actually passing out from holding his breath. She said that this could be caused by either anemia (which he was) or malnutrition. Since the feeding tube, his anemia has resolved and he's no long malnourished, but the breath holding spells have gotten WORSE and have evolved somewhat. He's no longer just falling over randomly, so that's good and that was probably due to malnutrition, but almost every time he gets hurt, he cries so hard that he literally cannot catch his breath, causing him to pass out. I firmly believe that this is not behavioral. It doesn't appear that he has any control over this at all. For instance, just yesterday, we were walking in SAM's Club and he tripped, fell flat on his face (didn't even have time to get his hands out and catch himself) and hit his head on the cement floor. I ran to pick him up and he was crying (making sound) at that point. About the time I got him up to eye level with me, he began to arch his back, crying hard enough that no sound was coming out and his face had begun to turn blue. I tried yelling his name, shaking him gently and blowing in his face several times, all to no avail. After about 15 seconds of this, he just crumpled in my arms, completely unconscious. He was this way for about 10 - 15 seconds. He finally came to after I begun to shake him. I called this morning to make an appointment with his local pediatrician. These spells are FREAKING me out and can't be good for brain cells. Does anyone have any suggestions for me?! Can anything be done about this? Is it behavioral? Something I should mention that concerns me and is always in the back of my mind... while he was in the hospital after having his G-tube placed and he was hooked up the O2 monitor, I noticed that the second he would start to cry, his O2 would start to plummet. A few times his O2 even dropped into the 60's and he never lost consciousness. I can't imagine what it gets down to when he does lose consciousness! They even had to have him on blow by oxygen while he was in the hospital. That was great for when we were there, but what do we do now?!

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R.J.

answers from Seattle on

My son has mystery respiratory issues. So I'll offer up 2 things:

1) http://www.amazon.com/Concord-Fingertip-Oximeter-carrying... is a GODSEND, and I carry it around with us everywhere. If I can't get him into the 90's with his meds, we're in Children's ER (our regional children's hospital). Even if I can get him into the 90's, I chart each and every single time it drops. And omg... Yeah... my 9yo will be RUNNING around the house laughing and goofing off in the freakin' 70's (I can tell he's low, because his eyes get glassy). Most kids and adults in the 70's can't even sit up on their own. Aaaargh. Anyhow, literal lifesaver/sanity saver until you get a hospital oximeter. I'm working on getting an actual monitor for nighttime. Half the reason I'm on here so much recently is that I'm afraid to sleep. That alarm is the most relaxing sound I know. Instead I stay up until 4 or 5 in the morning most nights just to be checking on him, then sleep for a few hours.

2) Head back to Mayo. Having a child with mystery problems (and periodic hospital stays ranging from a week to a month) has REALLY highlighted the dozens and dozens of things that could be wrong from any set of symptoms. I know a family with a 2yo with similar problems as you describe, and they've been at Children's since November, after a year of hospital stays and ER trips close to where they used to live. Another family with similar problems only ever had to spend a week. Mystery problems SUCK. Granted I am SO grateful that my son has a "normal" life 50-90% of the time, but the sheer intermittentness also creates a huge problem diagnostically. ((Our own "mystery problems" could EITHER be pulmonary, neurological, or rheumatological -kiddo has a bizarre reaction to inflammation.)) Bring a list or chart of all of his spells, duration, color, all the data you possibly can bring with you.

Best of luck to you, with all my heart.

2 moms found this helpful
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P.M.

answers from Portland on

Poor mommy! Poor baby! I have one suggestion, based on my own experience with breathing difficulties, that may or may not be helpful.

I'm extremely sensitive to perfumes and a wide variety of chemicals, which pretty much keeps me from going out in public much, and I'm using only natural substances like baking soda and white vinegar for cleaning my home. Unscented natural detergent for my laundry. IF I get exposed to the chemicals that irritate my nervous system, one of the most difficult side effects is that I develop a kind of apnea called Central Apnea, which can keep me from sleeping, but also make it necessary that I take every breath deliberately while I'm awake, too. I have been distracted by reading or computer work and become lightheaded on many occasions because I forgot to breathe.

What apparently happens is that my blood becomes too acidic to signal my brain stem to signal my diaphragm to take a breath. There is a natural cycle a healthy body goes through for every breath; when the CO2 starts to build up as oxygen is consumed, this makes the blood slightly more acidic. The acidity acts on certain cells in the brain stem that have the task of signalling the body it needs a breath, and the diaphragm contracts to draw in the next breath. Ideally, this should happen automatically.

In my case, it seems that once my blood exceeds a very narrow tolerance for acidity, that automatic signaling stops. Those cells in the brain stem become overwhelmed or confused. Then I'm in trouble, and that has, in some cases gone on for as long as 4 exhausting days.

I do have a temporary fix that seems to help. I found a doctor who understands the connection between chemical/food sensitivity, acidity in the blood, and breathing. He prescribed a "tri-salt" alkalinizing powder (a specific recipe of sodium bicarbonate, potassium bicarbonate, and calcium carbonate) I take with water, and it temporarily corrects the acidity, and my breathing returns to normal for up to an hour or two at a time. Then, if I'm still being affected by the perfume or other chemical, the acidity builds up and my breathing is no longer automatic, and I have to take another dose. But I can take only a few doses a day before I start getting uncomfortable side effects from the powders (presumably because of the salt content).

I also avoid acid-producing foods and focus my diet on alkalinizing foods. You can find lists of these quickly with a google search, and it might be helpful to see if that makes any difference for your son.

Whatever his problem, I sure do hope you get to the bottom of it, M.. I can't imagine what anxiety you must endure when this happens to your son.

2 moms found this helpful
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C.B.

answers from Cleveland on

My DH's coworker's wife told me a few years ago about her grandaughter (who I think was 2 at the time) had a condition that caused her to pass out when she cried. I don't remember specifics like the name of the condition but it seems to me that she would get so upset when she was taking in the air to cry something would get pinched and cause her to pass out. The doctors said it was something she would outgrow.

2 moms found this helpful
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