When I can’t, it wrecks my whole night. And his. Like last night.
Ryan has asthma. His wheeze or dry cough or panting wakes me. My eyes pop open… I listen. At first I’m not sure what I’m listening for, what woke me up. But after 13 years, Ryan comes to mind pretty quickly. I go into his room and bend close. Hopefully, I have to bend close. If I can hear him pant or wheeze from the hallway, that’s bad. Pollyanna panics. She always panics.
When he was little and first diagnosed, I went online to find out Everything I Could About Asthma. Surely there was information on the world wide web! Ha. Every scrap of info (besides definitions on “medical” websites) was found on a forum somewhere and – you think I’M dramatic – the stories were terrifying. Stories of children dropping dead in the hallway mid-sentence. Stories that made me burst into tears, gave me zero useful information, just reinforced my terror.
No one spoke of what worked, what medications their kids were on, what they had discovered about allergies and asthma, triggers, the difference in onsets… Forums, in the beginning, were dumping grounds. The adoption forums were equally bad – oh my God, that anyone would adopt after being on an adoption forum is a miracle.
Asthma exists in a black hole despite the fact that hundreds of thousands of children suffer from not being able to breathe. Actually, not being able to breathe OUT. Breathing in is not the real problem, it’s the breathing out. What you find online are cheery references to Irritated Bronchials and a drug sales pitch. What has been discovered are new drugs not tested over the long haul. Like QVar.
And viagra. And some pill that enables a man to make “this moment the right moment”. Isn’t it funny, hahahahaha, I know more about penile dysfunction from television commercials and billboards than I’ve ever known about asthma.
Ryan carries the Albuterol rescue inhaler, takes Singulair and uses a steroid inhaler twice a day, QVar, which he’s used for about two years. I read on a website last month that they “no longer believe that QVar stunts growth”. WHAT THE H*&@)%! I never heard this… Doctors just give you what the drug companies give them. When I ask about side effects, they say “oh, possibly headache” and wave me off. The list of possible side effects on the box would suggest this couldn’t possibly be good for your baby. But not breathing is worse, so you give it.
In the US, you have to have a prescription for these three items that can only be renewed by going to a doctor… again. And a doctor won’t give you a prescription for more than 3 to 5 months. Even though Ryan has an incurable disease he will have all his life… So when the prescription runs out, you take your otherwise perfectly healthy child to a doctor where he is weighed, measured (which BELIEVE me, he gets enough of at home by his own hand) and examined.. and guess what? He STILL has asthma. Which they must be guessing because, unless he’s in the middle of an attack, you can’t tell: THERE ARE NO SYMPTOMS. What’s the point of this exam? He is prescribed more of EXACTLY what he is taking now. No talk of new drugs, hope on the horizon, research, none of that. By the time he gets penile dysfunction in his later years, there will be a cure for that. But right now, he’s 13 and spends a couple of nights every month panting for O2.
After years of wringing my hands thru the night and trips to the emergency room, I’ve discovered a few things. The very first thing, the most important thing is this: when you get your brand new baby vaccinated, DEMAND thimerisol free medicine. Thimerisol is a mercury preservative for vaccines. There is overhwelming evidence it causes asthma and autism, among other things. Read up on mercury poisoning. It will scare the life out of you. Here’s Jal’s article on the subject. There are tons of books and research on this topic.
We found out too late. We believe mercury poisoning is the cause of Ryan’s asthma. We believe it is the cause of Megan’s son’s autism. Noah tested normal until his vaccinations. Then he “got” autism.
We suspect it may somehow be related to Mo’s inability to stop talking. Ever. He even talks in his sleep. Unbelievable. Anyhoo…
In a closed-in restaurant where anyone has smoked, a closed-in place not regularly aired out (movie theatres), particularly a carpeted closed-in place, Ryan’s throat will itch and he gets the dry cough. I want to strangle shop owners who burn incense. Give them a taste of what smelly smoke does to Ryan.
Here’s the other thing we discovered: first, of course, he leaves the offensive place. Then he drinks a few big glasses of water.. and the itch goes away.
Oddly, when he has too much white flour food (pasta, bread) unbalanced by protein, or too much sugar – a big bowl of ice cream or more than just a little candy – same thing: scratchy throat, dry cough. Water is the cure. Lots of water. Unscientific, perhaps, but it works.
A long hot shower or bath helps, of course. Opens up all those Irritated Bronchials.
When I can get him to sleep on his back, propped up with pillows, his breathing is so much better. This also stops the sleep apnea, that thing when you stop breathing for a few seconds in your sleep, then catch your breath. Sleep apnea keeps the world from sleeping well, no wonder we are all cranky. Lots of snorers have this. Try this: go to sleep with your head propped up, almost so your chin is touching your chest. You will sleep so soundly you won’t care about the awkward position!
No feather pillows or comforters in Ryan’s room. No carpet. No cats. Clearly he’s allergic to all of those things and they set off the scratch/dry cough. Dogs seem to be ok – go figure. Singulair is an anti-allergy medication for air-borne allergens, not really an anti-asthma medicine.
So is it allergies or asthma? I’ve asked allergy “specialists” who admit they know very little about the connection between allergy and asthma. They assure me there is one. When I was in the allergists’ office, I did notice a steady CONSTANT stream of children in and out, getting their weekly or twice weekly allergy shots. The allergists know all about this. [OK, a little down on doctors today.]
In Costa Rica, you don’t need a prescription for anything non-narcotic. You just walk into a pharmacy and say “I need an Albuterol inhaler” and they sell you one for half the price it is in the US. Plus there is a local generic for montelukast sodium, the active ingredient in Singulair. In the states, Singulair is $120 for 30 pills, no generic till Singulair’s patent runs out. From a Canada pharmacy, Singulair is $50 for 30 pills. Here the generic is $16 for 32 pills.
If you are a mom with solutions, discoveries or tips, please share them. Hopefully over time, more of you will stumble onto this story while searching for help. Please share what works for you.
Ryan is fine today, if a little tired. He sleeps thru most of these emergencies… I move him around, sometimes wake him just enough for a puff. If it’s not too bad, I ride it out. Most of the time, it clears up without management. I’ve called my friend, Nurse Cheryl, in the middle of the night and she will come over if I ask and stare at him with me. One time, when he was a baby, she came over at 3 in the morning. Now there is a generous friend!!! Madness for me to have called her, but watching your child struggle to breathe drives you quite mad.
As does not sleeping. We’ll nap later, first we are off to sign the boys up at their new school.
The first school was ok, but not a word of Spanish. Starting next week, they will attend St. Cecilia’s where not a word of English is spoken except in English class! Thanks to Jal and Tom, Mo and Ryan are very well-educated, so we’ve decided to sacrifice geography for Spanish. Last year, St. Cecilia’s placed 2nd in Math in all of Costa Rica. And they are THE champions in basketball here, have been for quite a few years. Didn’t even know they played basketball in Costa Rica, but hey, what fun! More soon. Thanks for listening.
Hasta luego – xoxoxo Saratica