The relationship between asthma and reflux is a topic I wish I had known more about when my daughter first started showing symptoms. At three weeks old, I had just set Ava down on the changing table to fasten her diaper when I noticed her lips were purple. It wasn’t until I scooped her into my arms that I noticed her body had gone limp. While the incident only lasted 30 seconds, it was terrifying. After a brief stay in the hospital, the doctor’s attributed Ava’s cyanotic episode to GERD (reflux). “It’s easy to control,” the doctor’s told me.

It has taken five years, two surgeries, multiple hospital visits, another cyanotic episode, and ten daily medications to control my daughter’s symptoms. For anyone who thinks asthma is “just asthma,” or reflux is “just reflux” please read Casey’s story as told by his mother, Brittany. I am doubtful I will ever meet a more powerful health advocate for her children than this incredible woman. I hope you are as touched by her strength as I have been.

*In Brittany’s words, here is Casey’s story:

A new baby boy
My son was born Sept. 20, 2009 at 38 weeks and one day; he was perfectly healthy, other than a little retracting at birth. Casey went home with me from the hospital and we enjoyed the first two weeks of his life just as every family should.

The day he turned two weeks old he couldn’t keep anything down and wasn’t urinating so I took him to the emergency room where he was given fluids and observed over night. Although he was still throwing up, he began to urinate and was sent home to follow up with the pediatrician. At the follow up with the pediatrician she said he looked septic and directly admitted him into the hospital where he stayed for 10 days. During those 10 days, he had two cyanotic episodes (he turned blue) while eating, both of which required him to have assistance breathing. While in the hospital he had many tests including an upper GI (which showed reflux), a modified barium swallow (which showed normal anatomy) and an esophagram (which ruled out a fistula). He was diagnosed with severe GERD (reflux) and sent home on Prevacid, an apnea monitor and a pulse oximeter.

Before our follow up with the pediatrician, Casey got a fever and the doctor told us to return to the hospital, where he stayed for three more days. He had a gastric emptying study that showed he had delayed gastric emptying, at 94 minutes as opposed to the normal of 45. This only made his reflux worse, so he was given Erythromycin to speed things along. We were told he needed a surgery called a Fundoplication and he began seeing a pediatric GI specialist. At that point the doctor felt it wasn’t necessary so our next step was just to wait and see if he improved.

Doctors scratching their heads
Casey failed to meet his developmental milestones such as eye contact, fixing on objects, tracking objects and lifting his head. His eyes were tested and found to be perfect. Then he was set up to meet with a neurologist. He continued to choke while eating and turning blue. It became our normal. He turned blue at home one night and was lethargic for a while afterward and his pulse ox stayed low for a few minutes. I paged the doctor and we were once again sent back and he was admitted to the NICU for three days. While there an EEG and a CT scan were performed. Both of which were normal. He saw a developmental specialist and was diagnosed with hypotonia (low muscle tone) and started physical and occupational therapy immediately. He was scheduled to have an outpatient MRI done and sent home. A follow up with the GI doctor got us nowhere. His tactic was still to “wait and see.”

The Tuesday before Thanksgiving we saw the GI doctor AGAIN and were told to wait and see, although he was still choking and still turning blue. That night Casey turned blue three times within an hour. This was not normal for him at all, so once again we packed our bags and headed up to the hospital. He had his MRI, which was normal, and a 24-hour EEG, which was also normal. He continued to choke and turn blue during feedings and was switched to Prilosec. He became a happier baby and began to smile and look at us for the first time in his life. We were amazed. After six days Casey was sent home.

Although he continued choking and turning blue, the pulse ox and apnea monitor were no good. For the apnea monitor to go off he had to be completely still and not breathing for 20 seconds. When he turned blue he was struggling for air so it did no good. The pulse ox told me when his oxygen saturation was low, but since this mostly happened when he was eating and he would choke loudly, I was always aware of it, so he was taken off the monitors.

On Dec. 7, 2009, Casey had another modified barium swallow. This, once again, showed his anatomy was normal and the speech pathologist said he was choking due to his reflux (No shit, we already knew that!). We saw the pediatrician after the barium swallow and talked to her about Casey’s milestones again. It was then thought that Casey had hypotonic cerebral palsy, but that diagnosis could not be confirmed until 5-7 months. That day our pediatrician called the GI doctor and told him what was up. He still didn’t think he needed the surgery so our pediatrician found a pediatric surgeon to do the surgery and set us up an appointment for the next Monday, Dec. 14.

Something was different
During the evening of Dec. 13, Casey choked pretty bad, but had no color change. He became tired, which he often did after choking, and his cry sounded a little weaker but I didn’t think it was too bad. His lung sounds were clear; I had my husband (a paramedic) double check. He was going to meet with the pediatric surgeon the next day so he could be checked out further then.

We went to bed a little after midnight. At 1 a.m., the dog’s whining woke me. I yelled at the dog to shut up, reached over, touched the baby, kissed the back of his head and realized he was cold. He wasn’t breathing and didn’t have a heartbeat. I breathed for him while my husband (who was on duty) did CPR while we waited for the ambulance to get there. I called a sitter for my two year-old while they worked to get his heart beating again. They were still doing CPR when the loaded him in the ambulance. I met the ambulance at the hospital and they were still doing CPR.  They tried and tried at the hospital. The doctor took us aside and gave us “the talk.”

He was going to try for a few more minutes, but since they had been doing CPR for over an hour he didn’t feel there would be any benefit of continuing. My husband and I left the room to take a second to ourselves and we were called back in. They were going to stop CPR, but as we walked back into the room his heart began to beat again. They did an x-ray to check the placement of his breathing tube and the x-ray showed that he had aspirated.

At this point our pediatrician was up there explaining everything. He looked really good considering what had just happened and we were told he was going to live, but he would never be normal again. The ambulance from the children’s hospital came and loaded him up. We left at the same time as them. We went home to pack our bags, preparing for weeks of a long recovery in the hospital and got some breakfast. My dad drove us up there so we wouldn’t have to pay for parking.

It was my husband’s birthday.

When we got up to the room, it was around 5:30 a.m. I looked at my son and immediately knew something was different. I could tell he just wasn’t “there” anymore. I asked the doctor if something had changed and she said no, then she asked what I knew. I told her I knew he would live but would never be normal again. Her eyes changed and the room got silent.

Then I was told he wasn’t going to make it.

We spent the next two days at the hospital; it was the hardest two days of my life. On Dec. 15 at 9:09 p.m. we decided to take Casey off the ventilator. He died in our arms, without pain.

One doctor said he died from complications with his reflux, while another doctor called it SIDS. We are still (six weeks later) waiting on the pathology report to determine exactly what it was. I miss him sooooo much I can’t even begin to describe it.

We hope to one day start a scholarship program in Casey’s name. Until that time comes we are just trying to make his story known so that NO ONE has to feel this pain, and NO BABY suffers from reflux again! Feel free to join his Facebook memorial page and help us share his story. Thank you.

-Brittany

Thank you to those who stopped by to wish me well on my recovery from sinus surgery. The procedure went well – now I just have to prevent the kids from headbutting my face until my new nose heals.

Onto more important news…this just in from AANMA:

Is It Asthma Or Something Else?

Now there’s a simple, non-invasive exhaled breath test to help clarify if respiratory symptoms are due to allergic asthma and require inhaled corticosteroids, or if symptoms are caused by something else.

A new report shows that a group of leaders in the field of asthma recommend measuring exhaled nitric oxide (also sometimes called FENO–fractional exhaled nitric oxide) as part of the standard care for asthma patients. The study was conducted last summer at National Jewish Health and was funded by Aerocrine; this posting was not paid for by either source.

Click here to read the Consensus Statement on the Use of Fractional Exhaled Nitric Oxide (FENO) in the Management of Asthma, or to request a copy of the complete paper.

*Note to reader: I’ve never blogged on Percocet before, so I’m going to keep this brief.

After years of putting off the surgery, I finally bit the bullet and had my sinuses repaired on Friday. The doctors fixed my deviated septum, remove polyps, shrunk my turbinates, unblocked passageways, and drained infected pockets of bacteria from my sinus cavities. I know it’s too early to tell, but the throbbing headaches I’ve had over the past few months have subsided. I have my fingers crossed that my other symptoms will follow suit.

My sister took a very unflattering photo of me post-surgery that I almost included in this post. But then I thought of the horrifying look on my kids faces when they saw me for the first time yesterday. I’m going to spare you from having a similar reaction.

Many moms can attest that the early years of asthma are the worst. Sleep deprivation sucked common sense from my brain – this is about the time I developed a habit of leaving my cell phone in technology-unfriendly zones like the freezer, the box of wipes, on the lip of bath tub. Living everyday with that unease in the pit of my stomach that my child was sick and I wasn’t making her better made me so crazy. Then I got angry.

In a way, this anger fueled my efforts to learn as much as possible about asthma so that I could, in turn, work with Ava’s pulmonologist to improve her health. As my knowledge of childhood asthma expanded, my confidence as a health advocate for my children grew. The relationship I had with my children’s health care providers evolved from me blindly following their instructions to a respectful collaboration where we discussed symptoms and appropriate treatment options.

Advocating for your child’s health reaches beyond the doctor’s office, but it’s a great place to start. Over time I have learned the strongest appointments are the ones where I am prepared and actively participate in a discussion about treatment options.

Here’s a quick advocacy cheat sheet to maximize your child’s next appointment.

1) Always bring a list of questions.
2) Share new symptoms with your doctor. Asthma is always evolving, so let the doctor know if your child is breathing differently, has a persistent cough, etc.
3) Ask the doctor to clarify. Sometimes doctors throw out clinical words and assume we know what the hell they’re talking about.
4) Learn how normal lungs should sound by asking your child’s doctor to allow you to listen through his/her stethescope. Having the ability to distinguish between lung sounds will help you provide your child’s doctor with clues so that he/she can learn more about your child’s asthma.
5) Bring along another adult. It will be a lot easier to talk with your child’s doctor if she isn’t hanging on your leg pleading with you to go home.

Do you have any tips for making the most out of your child’s doctor appointments?

• Free radon testing kits are available once again through the American Lung Association.
• This year’s Asthma Walk will take place in Philadelphia on Saturday, May 1. Register Now!
• Kudos to Pa. for adopting NYC’s 2008 standards for the assessment and remediation of fungi in indoor environments.

Here are a few of my favorite celebrities, who also happen to have asthma. Please add your own (shirtless or otherwise).

Fit, sexy and talented - soccer phenom David Beckham has had asthma since childhood.

Pink's vocals and lyrical prowess are inspiring. Now if she could only kick the cigarette habit she admits worsens her asthma symptoms.

Supernanny Jo Frost has partnered with AANMA to talk asthma. Frost was diagnosed when she was five-years-old.

Find other famous people with asthma.

Health care reform sounds like a wonderful idea to parents of children with a chronic health condition like asthma. Reform, by definition, means “a change for the better as a result of correcting abuses.” What is more abusive than the high medical costs associated with chronic illness?

But tucked into the recent health care reform bill are initiatives that hurt those suffering from asthma and limit their access to care.

Access to Specialty Care
Research has proven that specialty care for patients with asthma improves health outcomes, reduces hospitalization and emergency room visits, and results in fewer missed days of work and school. Yet, the current health care reform bill limits access to specialty care by redirecting funding to primary care offices. James Sublett, M.D., president elect of the Joint Council of Allergy, Asthma & Immunology, draws attention to the fact that asthma “is not an acute illness, but a chronic disease” and should be treated as such with medication, behavior modification and customization that a specialist is trained to provide.

A recent study, I’ve referred to here, from Johns Hopkins University found that children were less likely to be treated according to the National Institute for Health’s (NIH) guidelines for asthma management when under the care of a primary care physician (or pediatrician) compared to management by an asthma specialist.

Rationed Testing
Some U.S. senators have suggested the Arizona Health Care Cost Containment System (AHCCCS) as a model for health care reform. In a recent op-ed published by the Arizona Republic, Rep. Matt Heinz, M.D., wrote “Arizona may be sitting on the solution to our national health-reform debate.” What Heinz neglects to mention is how Arizona’s program became so burdened financially that necessary testing for asthmatics was cut. Care was rationed and patients were no longer qualified to receive allergy testing or immunotherapy.

If you’re the parent of a child plugged into a nebulizer eight hours a day, you would either have to watch your child continue to suffer or face financial catastrophe if testing weren’t covered by insurance. For those of us whose children have benefited from allergy and immune system testing, we know how essential these diagnostic tools are to helping our child improve his/her health.

I recently spoke with another mother on the BabyCenter Asthma Allergy group who shared the benefits of allergy testing and immunotherapy for her son. After years of being chronically ill and near death more than once, Jenny’s little boy’s tests revealed he had Heiner’s syndrome, a rare immunological response to dairy products that causes bleeding in the lungs (pulmonary hemorrhage) as well as multiple food allergies. “Now that he is 100 percent dairy free, his asthma is easier to manage, scar tissues is receding in his lungs, he gets sick less often, and almost all of his digestive and stomach issues are gone,” explains Jenny, who adds that her son is actually CHEAPER to care for now that the tests alerted them to his health issues.

*Asthma treatment isn’t as simplistic as many legislators believe. I’m very concerned with how the proposed legislation may affect how and when medical care is provided and urge parents to let their local congressperson know where they stand on this issue. It’s up to all of us affected by a child with asthma to mobilize around this issue and change health care for the better.

Have you heard Tiger Woods wants to dispel his unflattering image with a career change? Woods will attempt to rematerialize his pristine image with a new career as a children’s theatre performer? What, you don’t believe me? You’re smart, you shouldn’t — because I made it up.

Myths can strongly influence people’s beliefs. When it comes to asthma, there are a few common myths worth clarifying:

1) You will “grow out” of asthma.
You cannot outgrow asthma. In about 50 percent of children with asthma, the condition may become inactive in the teenage years. The symptoms, however, may recur at anytime in adulthood.

2) Asthma isn’t serious.
Many people believe asthma doesn’t kill. However, 15 people die of asthma every day – deaths which are preventable if the disease is properly diagnosed and treated.

3) All asthmatics wheeze.
Not all children who have wheezing episodes will develop asthma, and not all children with asthma wheeze. There are several other symptoms that may indicate asthma, especially in young children.

4) Children with asthma shouldn’t participate in sports.
With proper management, children with asthma can maintain full participation in most sports. Aerobic exercise actually improves airway function by strengthening breathing muscles.

5) All asthmatics have allergies.
While allergies are common for many asthmatics, not all asthmatics have allergies. Likewise, not all people with allergies have asthma.

What asthma myths do you want to slay?

Are you holiday shopping for a child with asthma this year? Here are some suggestions:

For the child

• Portable video game player to keep the child entertained during terminal doctor visits.
• Gift card for a favorite activity to help the child remain healthy. If your little girl enjoys gymnastics, ask grandmom or grandpop to pay for classes as their gift this holiday. Asthma is not an excuse for being physically inactive; research had demonstrated improved fitness levels are actually associated with decreased severity of asthma symptoms.
• Natural fabrics are ideal for children with asthma or those with sensitive immune systems. While attractive, a clothing item like a festive wool sweater can irritate a child’s breathing or cause a skin condition like eczema to flare.

For the parents

• Dehumidifier can help a family keep the humidity in the house at a safe level that limits moisture accumulation which can lead to mold – a strong asthma trigger.
• Air purifier with HEPA filter improves the indoor quality of the air in the family home, making it easier for a child with asthma to breathe.
• HEPA vacuum cleaner traps and reduces allergens imbedded in carpets and upholstery.
• Gift card to a place like Bed Bath and Beyond where the family can purchase allergy-free casings for pillows and bedding.

Gifts to avoid giving

• Stuffed animals may look adorable, but dust mites pounce on stuffed toys and often trigger flares.
• Plush blankets feel soft and cuddly but also harbor dust mites.
• Cuddly puppies or kittens may bring joy to a child who loves animals, but animal dander and the pollen these animals carry from outdoors can wreak havoc on an asthmatic’s immune system, even if they are not allergic.
• Candles and other fragrances with strong odors often hinder an asthmatic’s breathing.

Please add your suggestions:

I believe that our health care system is broken and in need of more reform than the delinquent teenager across the street from me with a penchant for swiping cash and electronics from locally parked vehicles. I’m just not sure that this package is the reform we need. As a health advocate, I wanted to learn more about the current health care reform bill floating around the Senate. So I asked to the experts.

Just last week, I had the opportunity to speak with James Sublett, M.D., president elect of the Joint Council of Allergy, Asthma, & Immunology, about how health care reform may impact patient access to specialty care (a primary concern of mine). Dr. Sublett fears some of the language within the current health care reform package will affect patient access to specialty care – like allergists, immunologists and pulmonologists.

“The devil is in the details,” according to Dr. Sublett, “the current package includes increased funding for primary care practitioners to care for those with chronic conditions. However, research has proven that specialty care for asthma improves the health outcomes for the patient and reduces the indirect costs to society.”

Dr. Sublett draws attention to the fact that asthma “is not an acute illness, but a chronic disease” and should be treated as such with medication, behavior modification, and customization that a specialist is trained to provide.

Specialty care for pediatric asthma is critical. Research has shown that specialty care results in fewer hospitalizations and ER visits, fewer missed days from school, and significantly enhances health and quality of life for children with asthma.

Contact your local senator today to express your interest in retaining and expanding patient access to specialist care:

http://www.visi.com/juan/congress