Declan's Story

Declan was born January 31, 2008 in Little Rock, AR. He was born at 38 weeks and weighed 7 lbs. 12 oz. I had placenta previa during the pregnancy and it took him a little while to cry and pink up after delivery. I knew something was different about him from the beginning. I just felt like something was wrong. At our first Dr. appointment at our (Primary Care Physician) PCP (which is a military doctor on base) I raised concerns about his breathing, only to be reassured that it was my imagination and not to worry. Month after month went on. Every month we had a check-up or an illness (typically ear infection and upper respitory). Every time we were seen the Dr. brushed off my observations of breathing problems/throwing up as nothing important. In August 2008, my husband left for Qatar on deployment and everything went downhill from there. The Dr. we had been seeing was on vacation and we were seen by Col. Havel (our savior). She LISTENED to my concerns and valued my input. She also noticed that his growth was significantly dropping month by month and was concerned. So she put in a referral to ENT and Radiology for a Swallow Study and Upper GI at Arkansas Childrens Hospital. Needless to say, we switched to Col. Havel as our primary care physician ASAP! In September 2008, Declan had an Upper GI scan, which came back normal. His swallow study is cancelled because his Upper GI came back normal. In late November 2008, we were seen for the first time by ENT...notice August to November. He was 10 months old. They looked him over and felt he was completely normal but decided to give him a laryngoscopy in office just to be sure. As they scoped him I watched the monitor and about 5 seconds in, he says, "oh yeah there it is". I'm thinking there what is? And then holy cow...they've found something. My emotions went back in forth from scared to death to relief that something was now known. You of course don't want your child to have a condition but you also want validation that you knew something was happening. Especially for me after 10 months, 2 doctors, and a radiologist telling me nothing was wrong. After shouting out "there it is", he remained silent for the remainer of the scope and then discussed things with the other doctors before speaking with me. Meanwhile, I am wondering what my child could have while trying to console his wails from being held down and prodded with a scope. Finally, it seemed like hours, the doctor comes in and tells me Declan has mild laryngomalacia. The Dr. felt that although he seemed to be having growth problems, frequent ear infections, frequent vomitting, and frequent respitory illnesses his laryngomalacia was not severe enough to do anything about it. He wanted to monitor him over the next few months. He said if he had any more ear infections he wanted to put tubes in his ears, but for now he just wanted to monitor with monthly visits. He was put on Zantac (which he hated). December 2008, bronchitis leads to pneumonia. January 2009, ear infection number 5 hits. Giving the doctor a "reason" for surgery. While under for surgery the doctor was going to remove his adenoids and tonsils and "look at his laryngomalacia" to decide if he wanted to correct it or not. The surgery was scheduled two weeks prior to my husband's return from overseas. I contacted his Boss at work and they contacted the Red Cross. The Red Cross got him home early and my husband arrived home on February 13, 2009, 3 days before our son's surgery. The the day of Declan's surgery we told the doctor we wanted the supraglotoplasty if it was even a question that he needed it done in his mind. After 15 minutes in surgery, Declan had a set of tubes, no tonsils/adenoids, and according to our ENT doctor "non-existent" laryngomalacia. (He even wrote this in his notes to our PCP). He was put on pediasure starting in February 2009. After continuing to have problems with throwing up and weight gain Declan was diagnosed with Failure to Thrive in April 2009. He was also placed on prevacid instead of zantac. We were scoped by GI (Gastro-Intestinal) Dr's in August 2009. However, around August 2009, we also started to see him moving upward on the growth chart. They told me they found that he had a "food allergy." But they didn't know what food was causing it. They believed since he had primarily been on milk his entire life that this is the cause and decided it would be best for him to be taken off his pediasure and go on a food elimination diet. Elminating one food item at a time from his diet until he does better. Obviously, this was one of those "tough call" moments in my life. I decided (with guidance from our PCP) that it was best to look at the entire picture including the fact that he had failure to thrive and was finally beginning to gain weight. We decided to forego the GI doctor's food elmination plan and stick with what we were doing. The remaining months of 2009 were miserable as most winter months are in this house. After having many more ear infections and respitory problems Declan was scheduled for a supraglotoplasty and new tubes in January 2010. When the Dr. corrected his laryngomalacia he said it was SEVERE and very pronounced. Declan was 2 years old. We were stunned that we were told his laryngomalacia was "non-existent" and then to find out it was "severe" was unbelievable. I am still angry from that discovery. At the time, I didn't know what to say because when you are finding things out after surgery the only thing you really care about is that your baby is okay and what they found. It was futile to start a fight with the doctor over his gross neglect for my son's well-being. At his follow up appointment in April, I raised questions about something going wrong in his surgery. His voice had changed and almost had become inaudible. The Dr. said it was possible some "nerves" had been damaged but it was most likely nothing and that it would go away with time. In April 2010, he was scheduled for a swallow study which he had never had before (remember it was cancelled in 2009?). He had deep penetration to aspiration on EVERY drink he took! I was stunned. For 2 years my child had been aspirating and NO ONE knew? I know I raised plenty of red flags and was shot down. Not to mention that the doctor's scoped his airway (looking back on it I can see the inflamation on his airway but I guess the Dr. just assumed he was already on thickener?) I don't know? His type of aspiration is called "silent aspiration." He would "clear his throat, cough a while later after drinking, and get a raspy voice." It was at this moment in time that I swore NEVER to allow a Dr. to strong arm me when I KNEW something was wrong. I am the only advocate for my child. That is a shame and wrong but I would NEVER let this happen again. I would have answers to the questions I raised from this moment on. Declan continued throwing up throughout the year but got much better after his surgery. He still seemed to have problems with his digestion though, so since he had come to a stand still on growth we decided to consult GI again about a food elimination diet. They wanted to scope him again before deciding on any plans for his treatment. This time I was told he had Eosinophillic Esophagitis (aka: the food allergy back in August). After researching the problem I found out that there was a medical way to fix this problem (steroid) versus a food elimination diet, which I was told by the Dr in August was the ONLY treatment and I was also not given the full information on what he originally had in August as well. Considering that I now knew there was another option and that I had been lied to, I decided to get a second opinion on his "allergy" situation. (We did try the food elmination diet but he did not take to it well, he lost 3 lbs.) We went to the allergist June 2010. The results came back completely NORMAL, even to milk! Hmmm weird?? The GI people said he was allergic to milk? WTF? The allergist explained what he does for eosinophillic esophagitis (which is an allergy but it is unknown and can be anything from something he eats to an allergy to grass), which was a steroid treatment (I knew this, however, I did not know it was just a simple inhaler that is frequently used for asthma). Instead of inhaling the steroid he was to swallow it. Within 5 days he was 100% better! It was AMAZING! I decided to keep this a secret from the lying GI doctors. He had a planned scope in August 2010 with GI and I wanted to see the un-tainted results from his scope (hoping we would see progress towards a healthier esophagus). The doctor came in and said "you won't believe this but he is cured." I said, "Really? That amazing because he was given the steroid that you and your associates refused to give him LAST YEAR which would've saved him at least a year of pain and agony." He was flabberghasted and defensive (of course) he continued to reiterate that food elmination was the ONLY way and that the steroids was only temporary. My thoughts were temporary or not, at least right now he's better and we can focus on helping him GROW which is obviously a bigger problem than anything else at the moment. The problem was this doctor lived his private life using the food elmination diet and he was bringing his own life choices into his practice as FACT because it worked for him. He was wrong not to give the full information to me though. He then kept having his associates periodically call, guilt tripping me into believing that I was a bad mother for putting him on the steroid. This continued up until December 2010, when he was hospitalized for 5 days for excessive vomiting and ketones in his urine. He almost died actually. He went down in a matter of hours from throwing up due to a stomach virus. It was insane. He was acting so weird, staring off into space at the walls and not responding to our questions (which is not usual). I took him to the first hospital nearest to us, after being there an hour and running tests they transported us via ambulance to Arkansas Children's. ACH was very busy that night and waited too long to give him the extra sugar he needed in his IV. We arrived at 7 pm (his sugars were 28), he didn't receive the very large dose of sugar until 12am, when they rushed in frantically after getting his sugar results back. At that point he was very comatose and withering up. They believed he might have had brain damage and kept him 5 days in the hospital monitoring him. (THANK GOD he did not have brain damage from their lack of attention) The good news about this was that we had alot of doctors paying attention to Declan for the first time and I was able to address my problems with the GI doctor directly as well as discuss breathing issues and other problems with the pulmonologist that was assigned to us. The pulmonologist reassured me that I was making the correct decision in keeping him on the steroid for now and that it was not HURTING him in any way! After the hospital he had minor sicknesses (typical winter problems) throughout the winter but has held on to his weight and recently has begun to grow again! He was seen by Endocrinology in February 2011 and they said he was lacking in 1 of his growth hormones but it wasn't the vital one. However, it could be problematic. They want to monitor him over the next 4 months. In April 2011, he had another swallow study confirming he still needs to be on nectar thick liquids. ENT scheduled a sleep study after listening to my concerns regarding residual laryngomalacia (which he claims is only a 10-20% chance). His Sleep Study was scheduled May 31st but we had decided the week before to take the kids to church for the first time all winter. The baby room and 3 year old room had 5th's disease and Pink Eye warnings on the door (we didn't see them or we would've just turned around and left, they were very small). I even said dropping off my youngest son (who also has this) that he has immunity problems and NO ONE mentioned they had sicknesses in that room during the week. Well guess what happened! Everybody got sick and Declan got both 5th's disease and Pink Eye. We drove all the way down to Little Rock for his sleep study and we were told that because he had Pink Eye we couldn't be seen. They rescheduled us for AUGUST 19th! There was "nothing sooner." It's just ridiculous how far they push these kids. Needless to say we won't be going to church again since we can't keep our children from catching everything known to man. After turning 3 our PCP was able to get us a Speech Therapy appointment, since his original surgery I had been bringing up my concerns about his crystal clear speech that seemed to suddenly become muffled, garbled, and raspy after his surgery. No one told me the "nerve damage" that the ENT claimed it could be was something called vocal paralysis, which then caused him to have a delay in speech, since no one tried to intervene sooner! (So frustrating) Since his endocrinology appointment he has grown an inch and gained 5 lbs. I attribute this to his thickener. I truly believe thickener is the key to success with these kids! We should be going back to endocrinology sometime this month and I will update. I will continue to update the more I find out about Declan! But if it were my guess, I believe he still has laryngomalacia and his swallowing problems are in conjunction with this, I also believe he is having obstructive sleep apneas in the night and I believe he would do good with a CPAP at night. I want other Mom's with this problem to find similarities and know there is someone out there that does know what you are going through! Just wish I had that myself! :(