Long Post alert! While a lot of the children on this page have been diagnosed with a wide array of medical problems, often times parents don’t receive a diagnosis…or they receive multiple “could be” diagnoses. I think pages like this can be helpful when people read symptoms and hear stories that might be similar to what their child is going through. So parents, please take a few minutes to read this little boys story and comment if you have any suggestions or words of encouragement for his family. Dylan was born a healthy 9lbs., but shortly after coming home he started vomiting at each feeding and had very loud breathing sounds. The doctor wasn’t concerned and the family went for a second opinion. Dylan was diagnosed with Laryngomalacia (a soft larynx), but there were no serious concerns. Dylan stopped reaching milestones and went from being in the 95th percentile for height and weight, down to 15th, then 10th, and eventually all the way down to just the 4th percentile. At 6 months the added diagnoses of Dysphagia, Gastroesophageal Reflux and Failure to Thrive were added (when he was at 15th percentile). Extra calories were added to his diet, but he would take no more than 4 oz. per feeding. Doctors didn’t want to do more testing, they suggested placing a G-tube instead. Mom didn’t agree to it and started making her own mixtures of rice, beans and chicken puree’s and he stopped losing weight (still only at 15th percentile). Another doctor came into the picture and more diagnoses were added, low tone, sensory disorder and feeding dysfunction along with a confirmation of severe developmental delays. He was put on an extremely expensive special formula (not covered by insurance) along with several medications that got his reflux and vomiting in check. He still dropped back down again, now into the 5th percentile, and then even lower into the 4th percentile. A new GI doctor did some testing and Dylan ended up being admitted into the hospital where a G-tube was eventually placed. He immediately started having complications and showing signs of infection, was put on a feeding pump at night with bolus feeds during the day. He stayed for 10 days, but complications continued. Next Dylan was referred to a pulmonologist after an abnormal sleep study. The infection was brought under control, and now Dylan had started gaining weight, back up to the 25th percentile. He’s even started to pull up to stand despite his delays, so clearly he was finally getting the nutrients his body needed so badly. But Dylan was still diagnosed with more after more testing, now with silent aspiration, obstructive sleep apnea and silent asthma and now the added diagnosis of Mitochondrial Disease. The family is working with a dietician now, and Dylan’s tonsils and adenoids were just removed to try and help with the aspiration and apnea. Dylan’s family has asked me to share his story, so there it is! If you have any words of advice for Dylan’s family, I’m sure they’d be happy to hear them
Posted on: Sat, 30 Aug 2014 02:31:07 +0000
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