Tuesday, November 22, 2016

Meet Elizabeth - GERD Awareness

November is GERD Awareness month!  GERD stands for Gastroesophageal Reflux Disease and affects approximately 20% of the US population. It's also referred to as acid reflux, heartburn, and acid indigestion by doctors.

Davy and I both have GERD and it definitely affected Davy as an infant.  He vomited a lot and battled constant GI issues because of it.

Holly's 22 month old daughter, Elizabeth has GERD.  She graciously let me interview her to learn her story and raise awareness for the disease.

Meet Elizabeth - GERD Awareness

How does GERD affect your child?  How does it affect daily life?
My daughter was born at 36wks so she is considered a preemie. She developed jaundice and had to be re-admitted to the hospital for treatment after we were released. Between the jaundice and being premature, which made her very easily tired and overly sleepy, direct breastfeeding failed. She lost over a pound of weight in 4 days which was over 12% of her body weight. I had to pump and give her bottles so we could track her intake better.  Bottles also wore her out less so more food got in her. It took her almost two months to get back to her birth weight.  Elizabeth also fights constipation.  
At Elizabeth's two month check-up I was finally told we could start breastfeeding again. This quickly became a challenge because Elizabeth developed what was called "colic" about that time. She had issues pooping, and the gas caused her horrible pain.  She would scream and scream until it finally worked itself out. She was put on fruit juice to try to help. I was also told about using a rectal thermometer to stimulate the rectum so she could poop. I ended up doing that almost daily to give her relief. She also started spitting up and projectile vomiting.These things made our breastfeeding a challenge. I could maybe get her to breastfeed a few times a day if she was feeling well and happy.

As the problems got worse, Elizabeth was put on Zantac for her stomach.  We also began thickening her bottles with rice cereal at nap and bedtime as prescribed by her pediatrician which started to help keep the food in her stomach. Miralax ended up being added to her world because rice can add to pooping issues.

Things got so bad that if Elizabeth breastfed, she would violently projectile vomit within 10-15 minutes after eating. I was making her sick, and it broke my heart. So by about five and a half months, I gave up nursing at all and exclusively pumped. Elizabeth started seeing a pediatric GI Specialist and was put on thickened bottles for every feed, Omeprazole in addition to the Zantac, and daily Miralax.  She stayed on this regimen until after her first birthday.

What has been your biggest challenge?

How severe it has gotten and the fact that she has not outgrown it.  She has been diagnosed definitely with GERD.
After Elizabeth's first birthday we were able to wean her off the rice cereal and she could keep her milk down.
Her GI doctor has insisted that we try to wean her off her stomach meds at least four times. Each time has been a disaster.
Elizabeth has developed issues eating. She does not recognize being hungry because her stomach has always been so upset.

As a parent I have to look for clues, watch the clock, and track when and what she has eaten to guess when she is hungry. If timed correctly, there is a chance she will eat. 

Elizabeth is also super sensitive to foods upsetting her stomach, so it is not uncommon for her to take 3 or 4 good bites of food and suddenly be done eating. She is also very scared about choking or food coming back up. So if a food cannot be swallowed easily, she stops eating.

If Elizabeth has any gas in her tummy during meal time it can also cause her to stop eating. She looses focus extremely easily since she doesn't recognize the importance of eating well. This means that she is still very bottle dependent at 22 months old. She drinks 18-24oz of breast milk daily on average and more if she's sick. Elizabeth stops trying to eat solids much at all sick because with the GERD almost everything upsets her stomach and makes her puke.

Elizabeth has had a swallow study and everything looked normal with placement, shape, and movement. She also had an upper scope with biopsies, but the only thing added to her diagnosis was lactose intolerance, which we already knew.  All diary has been removed from her diet and mine except hard block cheeses. Hard cheeses have little to no lactose, and she tolerates them very well.  It's one of the things we can count on her eating normally. I am very careful to keep my lactose intake to almost none so my breastmilk has the lowest levels possible. She tolerates it well. We have never found a formula that she didn't violently get sick drinking.

Feeding issues started before age one and have only become more noticeable. Her GI has somewhat disregarded them. Every time Elizabeth's stomach issues and eating starts to improve, he insists on trying to wean her off of her medications. This has caused her to completely stop eating solids, and have acid burps and vomiting, not to mention very poor sleep and a huge increase in breast milk demand. Because one medication takes a month or more to get back in her system, the four failed weaning attempts have often destroyed any progress forward. This has lead me to change who cares for my daughter. She no longer sees the Nurse Practitioner and instead sees the doctor directly.  We will not try weaning again for six months.

Elizabeth is in speech therapy, and they handle her feeding issues.  She also has occupational therapy for her feeding issues and there is talk of behavioral therapy due to all of her GERD related feeding fears. 

Elizabeth's meds have been greatly increased, and her solid food intake is increasing though it varies greatly.

Meet Elizabeth - GERD Awareness

What has been easier to handle than you anticipated?

Pumping for Elizabeth for as long as I have has gone better than I expected it to. I have a doctor's note for it, and my work understands the situation somewhat. They don't usually bother me too much about my one pump session at work. I have learned to pump while driving, eating, even napping when it is late and I am tired.

I want to make it to the two year mark now that we are so close (Jan 11th). But my supply is way down, and I hope that with her increased food intake she will become less dependent on me.

What had been hard to deal with?

People look at Elizabeth and don't understand why she has therapy, and why I still pump for her. She is a healthy weight and height, she is very smart and active. They don't understand her feeding issues or her GERD. It makes me want to scream and tell them that the reason she looks so good is because of my breastmilk.

Doctors can't give me an explanation for her constipation issues either except that she was a preemie so her system may just be under-developed or more sensitive then if she had been full term. Within the past two months, we been able to start doing the Miralax as needed instead of everyday, combined a strong daily probiotic with fiber in it. We have had two rounds of constipation and gas requiring Miralax and suppositories to get things moving, but thankfully no new hospital trips were needed.  We did have one urgent doctor's appointment and x-rays were done, but thankfully, there were no blockages.

Elizabeth's dad hasn't handled things well. He is very dismissive of Elizabeth's health issues and problems and believes that I am over dramatizing it. He walked out on us on Easter of this year. He takes Elizabeth overnights on Saturdays. Thankfully my mom has been very supportive and helpful, even allowing Elizabeth and me to live with her.  She watches Elizabeth for me while I'm at work.

Each day is a new challenge and guessing game. What will work today? What will help to get food in Elizabeth? What will appeal to her today ? What will be easiest for her to eat without upsetting her stomach or digestive tract.
If I guess wrong, I'll have a starving or painfully gassy and constipated baby.  The struggle is real.

What would you say to a parent whose child has just received the same diagnosis? What advice would you give them?

I would tell parents in a similar spot not to give up. Keep trying. Don't get discouraged when symptoms flare back up because they will. There will always be a dose increase or a medication change or set backs. It is a very fluid situation. You just have to keep trying to make as much progress as possible.

Meet Elizabeth! Raising awareness for GERD: http://bit.ly/2ge1zse

In honor of GERD Awareness month, I designed a special shirt with a periwinkle circle (the color for GERD).  It can be purchased here in different sizes and colors.


Do you have a GERD story?  I'd love to hear it!

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