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M’s Story…

I had someone email me and ask what exactly was going on with M. I figured I would blog it out.

The simple answer is that she has asthma and GERD. However, it’s not really the exact answer. The REAL answer is that we don’t know. She has “something” that may have both gastro and pulmonary involvement. (or they could be entirely unconnected) She has been tested for Cystic Fibrosis, because her lungs behave like a CFer’s lungs, and adding the gastro component is compelling. Compelling enough that when she passed the sweat test, her team at Boston’s Children’s Hospital insisted that we run the genetic blood test anyway. It came back negative.

It’s probably best that I describe her symptoms, since I don’t believe that what she has truly has a name. I also don’t think that “asthma” really covers it.

Pulmonary

*Cough. Chronic, constant cough. Sometimes productive, sometimes not. Night and day.
*Occasional wheeze. Usually deep in the lung. It’s often missed by the pediatrician, but the Pulmonologist usually finds it.
*Constantly mucus filled lungs. There was one set of films, when I looked at them, my first response was “those aren’t MY kids lungs, are they?” Her lungs, that usually look dark on X-rays, looked like someone had stuck a white sheet of paper behind them. She was occluded from top to bottom. It was amazing that she was breathing at all…let alone having a blood oxygen saturation of 99%, and no whistles, crackles, rales, or wheezes.

Gastro

*Gastroesophogeal Reflux Disorder (GERD)
*gastroparesis (slow moving stomach)
*Dyspepsia (nausea,vomiting, fullness, abdominal pain and bloating)
*intermittent blood in her stool, with no evidence of trauma to cause blood.
*floating stool
*mucus in stool.

I honestly don’t remember when M started showing pulmonary symptoms. What I remember is calling the pediatrician and saying “M sounds like A does when she needs a treatment.” So the pediatrician said, “well, give her a treatment then.” I did that for a few months…before I realized that we needed a little bit more support. I called the Pulmonologist that treated A in the hospital when she had RSV. He seemed good, at first…until he what he was doing wasn’t keeping M under any sort of control. He began adding puffs of Flovent to her “treatment regiment” (and I use that term very loosely) By the time she was 3 years old, she was taking 12 puffs of Flovent a day. It was also doing NOTHING. My good friend had switched to a new Pulmonologist, and spoke very highly of him…so I made the call. When I told the nurse what we were doing for treatment, she moved things around and got us in to see the doctor within the week. (there was a 3 or 4 month wait for an appointment when I first called.) Dr. D changed her medication, and we went from giving M neb treatments nearly every 4 hours around the clock to once or twice a day, but still nearly every day. He changed her meds again, and we dropped down to needing them much less frequently, but still more often than he would like. One more med change, and the need for rescue treatments went down to an average of 4 times a week. When the doctor asked me how many times M needed rescue, and I said, “she’s doing really well, she only needs rescue about 4 times a week” Dr. D was not as impressed with that…apparently, he wants her cough-free. I don’t know what that’s like. One more med change, after a particularly long lasting flare, and perhaps we’ll get her down to needing no rescue, or the very low number that Dr. D would find acceptable.

I didn’t know it then, but M’s tummy trouble began in infancy. She cried…all the time. She was miserable. The doctor called it colic, and I looked at her and said, “I don’t believe in Colic. She is in pain, I believe she has reflux. I’ve done some research, and Tagamet is pretty benign. Can we try it, and see if she feels better?” It was like a magic elixir. She went from crying ALL the time to being a pleasant, happy baby. She took the Tagamet from the time she was 2 months old until she was about a year, and we discontinued it. She seemed to be doing well, so we figured that she had outgrown the reflux.
Four days before her second birthday, M threw up for the first time. I remember distinctly, because I was at work, and Rob called me. I couldn’t figure out why he was calling me, I mean, he’s an intelligent person, surely he could figure out how to deal with a puking child. Especially since she threw up once, and was totally fine. When she threw up again, on the morning of her birthday (which was also her party day) I just figured that she was excited to see everyone. Three days after that, I was starting to get concerned, and several episodes, and a week later…I was in tears as I said to a friend…”I think there is something wrong with my baby.”

I called the pediatrician, and he saw her…didn’t notice anything on exam, but ordered a barium swallow, which is an X-ray of her digestive system after drinking a barium drink. It checks the anatomy, to see if there are any abnormalities. (there were not) He also ordered a gastric ultrasound. That was unremarkable as well. Dr. F then referred us to a Pediatric Gastroenterologist. He started her on Prevacid, and continued raising the dosage, hoping to get her under control. He ordered an upper endoscopy, and a colonoscopy. The doctor walked out of the procedure room and announced to me like it was a diagnosis…”she has esophogitis” It took all I had not to look at the man and say, “No…duh? She’s been vomiting every 3 days for about 6 months. Really, her esophagus is a little irritated…REALLY?” However, I behaved myself, and made an appointment with the pediatrician and asked, “if it was your child, what would YOU do.” He confirmed that he would make an appointment in Boston (at the Children’s Hospital) because obviously, the doctor here also held the “more medication is better than an answer, or alternate treatment methods)

We went to Boston, and they did another UE and Colonoscopy. They were also rather unremarkable. They kept her on the 30mg of Prevacid (double the adult dosage) which made little difference. She continued to throw up regularly. There were no real answers to the questions, so we were just in a holding pattern.

She had some more tests, a bronchoscopy, more endoscopies, more colonoscopies, and impedance study, a CT scan, a gastric emptying study, sleep studies. Nothing ever shows anything, and yet M always feels poorly. She constantly worries about throwing up. She constantly has trouble breathing. She is six years old, and doesn’t know what feeling “good” feels like. She either feels poorly, or really poorly. Her sister has been known to ask if “Sissa is REALLY sick, or just normal sick”

Having a chronically ill child is disrupting to every person in the family. The other child in the house has to deal with their sibling getting more attention than they do. It’s not intentional, but things like treatments, and doctors appointments take time. Children worry too…A worries a lot about M. It’s disrupting for the parents. Constant worry takes it’s toll on all aspects of life. It makes people irritable, it makes people short tempered. While arguments don’t OFTEN occur because of M’s health problems, they DO occur because we’re tired and stretched tight, and small things will set us off. The sick child, on top of being sick, is aware of the fact that disruption happens “because” of them. M apologized all the time for being sick.

I’ve really had to adopt the policy of “it is what it is” Right now, I can’t change anything. I’m not going to stop trying to figure out what is wrong with my daughter. I don’t believe that “she’ll have to learn to deal with it, perhaps she’ll outgrow it” is an acceptable answer. I don’t believe that any child should feel poorly all the time. Hopefully, we’ll find an answer sooner than later. For now, I enjoy my 2 beautiful daughters…I fight for them both, and I will continue to fight for them. I’ve heard the phrase…”whatever doesn’t kill you makes you stronger” and while it may be true, I would be the gladly be the weakest person in the world, if it meant that my daughter wasn’t suffering, so, I prefer to go with…”it is what it is” and someday, hopefully…”what it is” won’t suck so bad.

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