Ryan's Story

Ryan's Story

Our son, Ryan, was born on April 16, 1998. In all respects, he seemed in excellent health and the delivery was easy and quick. No reason to suspect that his existance would be anything but happy and healthy. By the second day of Ryan's life, it was becoming evident that something was bothering him - but what? Ryan began vomiting - projectile - after or during every feeding. He would vomit as many as 15 times in a 3 hour time period. He was my second child and I knew that this was not just a baby who "spit up alot" which is what all of the doctors were trying to tell me. It was either that or " you are just post-pardum and paranoid". (Sometimes people can be so ignorant and insensitive).

By Ryan's 2 week check up he had already lost several ounces and we were told to bring him back in a week to have his weight rechecked. In the mean time, I was still trying to breastfeed Ryan, but it was becoming impossible. He would latch on and begin nursing, only to relent a minute later to vomiting and wretchimg. Then, starving, he would scream and vomit until it was time for his next feeding. After the third week of watching my son suffer, I decided to heed the doctor's advice to stop breastfeeding begin formula feeding with added amounts of cereal in the bottle. He finally began gaining weight in proper amounts. However, the vomiting was only getting worse and by the 5th week Ryan was seeing a Pediatric Gastroenterologist at the Children's Hospital.

The First Diagnosis: GERD (Gastroesophageal Reflux Disease)

Ryan was rushed into the outpatient O.R. the very first time that we went to visit the peds g.i. at CCMC (Connecticut Children's Medical Center). He was little more than 5 weeks old and so very sick. When we brought him to see the specialist they were immediately alarmed because it looked as though Ryan had what was called an antrowebbing accross a section of his intestine. "WHAT IS THAT?" You ask - well picture a cob web made of tissue spanning accross the inside of the intestine. It is kind of like a stricture of sorts and dose not allow the food to pass properly. It requires immediate surgery to fix. So here we are with our 5 week old son, the Friday before Memorial Day, preparing our son to be put to sleep for an endoscopy (tiny camera inserted through the mouth and into the esophagus and stomach) and possible emergency surgery. Being Post Pardum I was a total wreck - not too mention just the stress of watching your child go through something like that when they are so small and helpless. The endoscopy showed that he did not have an antroweb, thankfully, and would not need surgery. We breathed a huge sigh of relief! What it did show was that Ryan had a strange abnormality in his pyloris (the valve or muscle at the end of the stomach which separates the stomach from the lower intestines). Apparently the opening of his pyloric sphincter was virtually swollen shut. It almost appeared that he had pyloric stenosis. BUT instead of the muscle around the pyloris being the problem - it was the tissue inside that was the problem. They had to force the scope through several times to stretch it out. They were not sure what caused this and were left kind of baffled by it. For now, it appeares that the problem was fixed by the stretching with the scope. However, there is not guarantee that it will remain that way as he grows and further down the line it may require either a stretching with a ballon type thing (almost like angioplasty) or even surgery. They also did stomach biopsies on Ryan to check for allergies. At this time - none showed up. So he was released later that day and was put on Propulsid and Zantac to treat the reflux.

For several months the combination of the two medications seemed to work well for Ryan. He was gaining weight now and was a much happier baby. He still was very pukey though - but we were willing to live with it as long as it was not affecting him negatively.

The Second Diagnosis: Eosiniphill Allergies

Around August Ryan's progress started diminishing and soon we were back to sleepless nights and screaming for hours on end. Oddly enough his volume of reflux had greatly increased as well. We upped his medications as the babies typically outgrow the doseages. This did not seem to help. After waiting a couple of weeks, the peds g.i. decided that it was time for endoscopy number 2. Maybe the pyloris swelled shut again - maybe Ryan had lesions or esophagitis. Only way to be sure was to look. So at the end of August we, once again, brought Ryan to the day surgery unit and watched as they put him to sleep. We waited impatiently until the doctor arrived. "Everything seems o.k." he said. "We did some more biopsies though - just to be sure that nothing shows up again". So home again we went - answerless, as usual and frustrated. A few days later we received a call - Ryan's eosiniphill count was high. "What does that mean?" I replied. "Ryan has allergies - milk protein and soy protein allergies known as Eosiniphill Allergies." Well add another piece to the puzzle - now we have another clue as to what has been making our son so sick. We placed Ryan on Alimentum formula which has broken down/predigested milk protein in it - and tends to fair better on little tummies with protein allergies. (May I just point out here that not all babies with Eosiniphil Allergies can take Alimentum or Nutramigen - some are so allergic that they need prescription formula such as Neocate). He remains on this formula now and will be challenged at the age of 1 with a milk based formula.

So for a couple more months he seemed to be a little better. Smiles returned to Ryan's angellic little face and rolls increased around his ankles and abdomin. He still vomited more than any person ever should - at least 20 to 30 times a day or more. But, again, I can deal with the puking - it's having him scream in pain that I can't handle. So for these months we were "living large" as they say. Hubby and I even managed to get away for a weekend - which was a real treat since almost everyone had been afraid of watching Ryan overnight because of all of his troubles. Yes, he was doing that good at the time .

The Third Diagnosis: Asthma

In October we visited the peds g.i. as we normally did every 4-6 weeks. This time the doctor informed me that he was taking Ryan off of Propulsid because his views on the medication had changed and he no longer felt that it was a safe enough drug to prescribe for any of his patients and that Ryan would have to come off of the med cold turkey. Let me just say that taking my baby off of this med cold turkey was like detoxing a crack addict! It was a purely hellish experience and one I never care to repeat as long as I live! We had at least 3 days of constant screaming at all hours of the day and night. I wanted to jump out a window! LOL After the medicine was out of his system he returned to "normal". At least what was "normal" for him - puking 40 times a day and waking up numerous times a night in pain. By November Ryan started having some strange symptoms which I really hadn't seen before. He developed this cough that sounded like smoker's hack. He would hack and hack for 25 minutes at a time turning colors and puking because he couldn't catch his breath. At night he would wake up screaming and coughing back and forth and finally would manage to settle down enough to go back to sleep, only to wake up and do the same thing and hour later. I though maybe he just had a respiratory virus or something - I watched him carefully and talked with my pediatrician about it. She didn't think there was cause for alarm so why should I? By the beginning of December Ryan's cough was just horrible and showed no signs of discipating. I called the pediatrician again and basically told her that she needed to get my son a chest x-ray and find out what was going on. So he had a cxray and they said that it showed a "questionable" infiltrate. In real people terms that means that he possibly had pneumonia. They put him on antibiotics and some other meds and sent us home. Ryan also underwent his third endoscopy and a pH probe - the day before Christmas Eve - just checking to make sure that all of this wasn't being caused by terrible reflux. Everything came back normal on the endo and the pH probe showed that Ryan had reflux (really?) and a case of esophagitis, but that it was not bad enough to be causing all of the other commotion. Ryan was placed on Carafate and Pepcid for his reflux. By January we were still dealing with the same thing and again went for a second c-xray - again a "questionable" infiltrate. By this time I was getting a little bit miffed with my pediatrician and the fact that she had no answers and what seemed to me like very little concern. I mean really, it doesn't take a brain surgeon to figure out that it is not normal or healthy for a child to be coughing for 2 1/2 months straight! Finally, I got fed up and decided to take Ryan to CCMC to see a Pediatric Pulmonologist. Maybe they had a clue. After all that garbage about questionable infiltrates - the pulmonologists looks at me and says - "He has chronic/moderate asthma" (Well I kind of figured seeing as how he was coughing and wheezing for 3 months!) LOL At least I finally got a straight answer - ya know? So the pulm prescribed vanceril double strength administered by an aerochamber with a mask. Prelone (prednisone) and albuterol by nebulizer every four hours. Ryan's coughing improved but was not eliminated and the doctor and a month later the pulm decided it was time for allergy testing. Which leads us to.......

The Fourth Diagnosis: Environmental Allergies

Ryan was sent to yet another Specialist - Pediatric Allergist. He was tested for 15 things (mold, mildew, ragweed, cat, dog, corn, turkey, wheat, dustmites, milk, pollen, and a bunch of others I don't remember =D ) We were informed that tests often show a false negative in a child Ryan's age. In fact they are not usually very accurate until the child is around the age of 5. So if anything showed up at all - it would be a surprise, and whatever did show up, was sure to increase with age. Ryan tested negative for everything except dustmites. Now for any of you who have allergies - you know that of all the things to be allergic to, that's the most impossible one to deal with. You can't eliminate dust! You can only try to decrease it - and it takes an awful lot to do even that! Major changes usually need to occur - unfortunately, they can be expensive, but they are also necessary. LOL

Where we are now:

Ryan turned one on April 16, 1999. We celebrated with a simple family gathering at our home. For that day, he was somewhat healthy and we were greatfull for that. Ryan had undergone a milk challenge and was on regular whole cows milk for a while. However, he began developing allergic symptoms again and we tried him on Next Step Soy formula. He had a severe anaphylactic reaction to the soy and could have died. He began projectile vomiting and wheezing uncontrolably. So he was back on the Alimentum again, but was still having trouble even with that, he is now on Neocate 1+, and also on a completely milk and soy free diet until further notice. This has been trying as I had never realized all of the things that contain soy. I do now! With this new experience has come more knowledge which I will be sharing as the opportunity arises. Look for links and information about food allergies in the near future. He still suffers from reflux, however the Prilosec has managed to keep it under control and at a point where it is liveable. His asthma is up and down, depending on the circumstances. Colds or sickness of any kind trigors it right away. If his allergies act up then he is back on the nebulizer. Right now the only asthma med he uses on a daily basis is Flovent 110 with the puffer and aerochamber (2 puffs, twice a day). He only uses the nebulizer for rescue and if he is having a bad time, the same goes for the Prelone. We are looking forward to a good summer - hopefully free of sickness. What lies ahead for next fall and winter remains to be seen.

I still firmly believe, there is always light at the end of the tunnel. Even when all that seems to be staring you in the face is a vast hole of darkness. There are always ups and downs, but try to remember that you are not alone and that things have a way of becoming more bareable when you share the burden with others, especially the Lord. If there is one thing I have learned from this experience it is this: in the end, we can not control what happens to us - only God can. But what you can control is how you deal with it.

"He giveth more grace when the burdens grow greater. He giveth more strength when the labors increase. To added affliction He addeth His mercy. He giveth and giveth and giveth again."

Thank you for taking the time to read our story. May the Lord bless you and keep you always.