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Noah's Story
He's Here! And He's Perfect!
On April 24, 2005, I delivered a beautiful baby boy, Noah Randal. Despite his unplanned C-section entrance four weeks prior to his due date, he was seven pounds seven ounces and the doctors could not find anything wrong with him!
Noah's Reflux Diagnosis
Noah gagged spontaneously throughout the day. Noah started this when he was just a few days old. I swiped the inside of his mouth thinking that he was choking, but I never found anything. It did not seem to bother him, so we thought nothing of it when it happened a few times per day. We even thought that the constant grunting was cute! Noah could grunt and squirm for hours at a time, and he even did it when we thought he was sleeping! Noah also threw up in his sleep. We would hear him fussing suddenly from his crib, and before one of us would get to him, he would have shot vomit out of the crib and onto the floor. Since babies spit up and that was just a fact of motherhood, I thought nothing of his symptoms. I really had no reason to, because he was a very happy little boy!
Then, out of no where, Noah started to interrupt his own feeds with cries and screams. He would quickly return to the bottle, so I did not think it was anything serious. We added gas drops to his bottle. I called his pediatrician a few times about it, but she always gave me a logical explanation that any first time mother would have accepted. Within just a week or two, though, the short cries and screams turned into powerful wails and arches during bottles. He was still taking the bottle back afterwards and drinking enough ounces, but I decided to bring it up at his two month appointment again. Noahs pediatrician told me that I was over stimulating Noah, and that I should try to limit his activity and keep him inside.
Just a few days after this appointment, Noah started refusing the bottle completely after the wailing and arching episode, so I called his pediatrician and made yet another appointment. She told me that Noah was forming his personality and that he was just expressing his opinions. Yes, he was definitely expressing his opinions. I was persistent at this appointment, though, and finally, after listing off all of his symptoms for the fifth or sixth time, she said it sounded like he had acid reflux. I had never heard of this in a baby, but I gladly took the prescription for Zantac since she said Noah would be an entirely different baby once he had the medication.
Our Struggle to Control Noah's Reflux
After a few weeks of Zantac increases, Noahs pediatrician realized that he needed a PPI, Prilosec. She also told us to put him to sleep in his carseat so that he was elevated, and to add cereal to his bottles to keep the formula from traveling upwards, both of which still make a huge difference with Noahs reflux. Noah did somewhat better on his new medication, but he was still unhappy with bottles, and we were feeding him in his sleep to keep the ounces flowing. Noahs pediatrician instructed us to try lactose-free formula on the slim chance that Noah was simply lactose-intolerant. He did better, but not well enough to stick with it. So, she switched him to soy formula. He did considerably well compared to before, but his ounces were diminishing, and we were syringing formula and Pedialyte into his mouth on the worst days. Once he had a few weeks with only eight to fifteen ounces per day, we finally made it to his first appointment with the gastroenterologist (GI) at four months of age. Before this appointment, though, Noah had an upper GI and a small bowel test, which showed no anatomical abnormalities or other problems. The upper GI did show reflux, but that test is not a reliable diagnostic tool for reflux severity, regardless.
Noah's GI increased Noah's Prilosec and switched him to Alimentum, a hypoallergenic formula free of milk and soy. Noah did much better with these changes, and once again, we thought we were close to that day where he would grow out of this awful condition. It became apparent that Noah had milk and soy intolerances. Unfortunately, within a week or two, I was making calls to this GI every few days frantic about how little Noah was eating and how violent he was getting about his bottles. He screamed at the site of a bottle, and he would only drink in the same chair, with the same person (myself), and with absolutely no noise. He barely sucked, and his mouth made more of a pulsing action than a sucking action. He was a very defensive eater. Noah's GI increased his Prilosec again. We saw an improvement for a few weeks.
Starting solids with Noah was a nightmare. He started waking in the night screaming uncontrollably, and he became very irritable. I always assumed that the solids were causing reflux issues, and I mentioned it to the GI time and time again. I also noticed that Noah would get the same red spots on his face in the same places when he was eating solid foods. They were small red dots, but the GI seemed to think I was crazy for even noticing this. In December, the GI switched Noah to Prevacid so that he could increase his dose of PPI once again and he could be confident that it would remain stable; his Prilosec was a liquid suspension that was known for losing its strength with time. He also told us that we could trial a milk-based formula for two weeks, and then a soy formula for two weeks to see if Noah had outgrown this intolerance.
We are going to fast forward through the four weeks spent on milk and soy formulas. Noah was a wreck. His physical symptoms included severe irritability and frequent wakings at night, accompanied by screaming. December of 2005 was awful.
We moved thirty miles south back to my home town at this point, and this meant Noah would have a new pediatrician with new referrals to a GI/allergist team. The new GI ordered an endoscopy, a pH probe, and hospitalization for observation. The endoscopy showed no problems. He was then hospitalized and fed foods that caused the screaming and rash, and like always, Noah performed and the nurses took notes. The pH probe was placed, but it showed very minimal reflux. Noah was left on all of his medication for this test, which we later learned was not the best choice in his case. Noah was also tested for allergies by this team, but nothing showed positive, so we continued to search for answers. At one point, a condition called mastocytosis was suggested and unofficially diagnosed. This condition would explain the rashes and the food reactions that were not allergies. We were scared by the diagnosis, but the fact that it remains common for children to grow out of most of the symptoms left us hope that Noah would someday feel better. Noah was put on Zyrtec and Gastrocrom, in addition to his Prevacid and Miralax (for constipation that started in December). He did not respond to those medications, so we agreed to take him off of them after a six week trial. The allergist then tried Noah on Peptamen Junior, a very pricey elemental formula meant for children that cannot tolerate anything. Noah did so well on this formula! His ounces skyrocketed, and he seemed happy to drink his bottles!
In the meantime, Noah's pediatrician added Zantac back in to his list of medications in the hopes that it would help his break-through reflux episodes. He also increased his Prevacid to 30 mg, which is two solutabs per day. We are very fortunate that Noah responds well to medication, and the next few months seemed to coast along a bit easier.
He's Allergic to Everything!
It was a known fact that Noah could only tolerate rice. He got so sick with other foods. As far as we were concerned, Noah was allergic to all foods, although the tests revealed no true allergy. We even took on a three hour trip to the closest childrens hospital where the allergist told me that Noah would stop reacting to food when I stopped reacting to food. She was crazy-conservative, and she was going by the books, even if it meant putting a child in danger. She instructed me to keep on feeding Noah the offending foods regardless of reactions, but my husband and I checked her off of our list instead. Another doctor at this hospital told me that Noah had night-terrors, and I will admit, his symptoms do sound like a classic night-terror, but his pediatrician back home even insisted this could not be true, since they started at seven months of age with Noah. Night-terrors do not occur before fifteen months.
So, we refused to follow up with this office and prayed that there would be someone who could help Noah in the near future. We continued to trial food, but he broke out in rashes, became very upset and irritable, and woke screaming for up to an hour at a time all night. On top of this, Noah was still waking five to fifteen times per night, and with a food trial, it was close to or beyond the latter.
Eventually, we decided to try a soy formula, Nestle Good Start Soy, at the advice of Noahs old allergist/GI team. They had recommended this brand if we ever decided to trial soy again. Noahs ounces were tapering on the Peptamen Junior, so we gave it a shot and had amazing results. Noahs ounces went up to forty or fifty per day, which is perfect for a child living off of formula only and no food. At one time, we tried switching him to a different brand of soy formula, and he could not tolerate it. He was also unable to tolerate tofu.
Still No Food at Eighteen Months
Today, Noah is eighteen months old and still cannot tolerate the majority of foods. By majority, I mean that he cannot tolerate anything besides rice cakes, puffed rice, watermelon, organic wheat pasta and bread, one specific organic cookie, and one specific organic cracker. Recently, we explored the possibility of a seizure disorder triggered by foods, after Noah started having staring episodes where he was unresponsive. His pediatrician also wondered about the screaming episodes and thought that they could possibly be seizure-related. The EEG came back normal, so we continue to look for answers to all of his medical problems. Thankfully, after another move to the Chicago area, Noah is in the hands of much better doctors. His new pediatrician truly is a miracle for Noah and for our family. Although he has not come to any conclusions, he has a different attitude about our son, and we honestly believe that he will someday lead us to a diagnosis that will allow us to treat Noahs symptoms.
What Now?
We just want our baby boy to live a normal life, and at this point, his life is far from normal. He is ridiculously intelligent and his development is well ahead of schedule, so we do have this to fall back on when things are at their worst. We are so thankful that Noah is as perfect as he is in so many ways. We just want him to be better before he knows he is sick.
Our Miracle
In October of 2006, Noah's new pediatrician started him on Reglan, four times per day. This medication is truly blessing for Noah and our family. It is now apparent that the screaming, terror, hysteria, and irritability are all severe symptoms of his silent reflux. Since being put on the medication, Noah has tolerated every food we have tried. We are still moving very slowly and sticking with simple ingredient foods (no milk), but we see so much more success in the future! Unfortunately, Noah's feeding skills are fairly behind and unique due to his aversion, but he will soon start feeding therapy to help him learn to swallow and enjoy his food.
Because Noah is requiring so many medications (Zantac, Prevecid, Reglan, Singulair (for suspected EGID's) and Zyrtec (antihistame for food reactions), it is apparent that this is a severe problem, and we just hope that it is as easy as keeping him on the medications. There is still a possibility that the motility agent is simply masking a different type of reaction that takes place in the stomach, too, so his diagnosis is not firm.
Please, if you have any information that would help with diagnosis for Noah, please do not hesitate to contact me via our forums. Or, if you are suffering through this same scenario with your child, I would love to talk with you.
Written by: Noah's Mom, Maggie
Read more about Children's Stories:
Zac's Reflux Success Story,
Emma Claire's Story,
Evan's Story,
The Story of Andrew,
Owen's Story,
Raeden's Story,
Olivia's Story,
Hannah's Story,
Samuel and Jennifer's Stories
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