Laden

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Laden

Located: United States

Symptoms: ADHD, Autism, Behcet’s-like syndrome, Bipolar II, Epilepsy, Leg length discrepancy, Low T cells, Moderate intellectual disability, Obesity, Overgrowth, Schizophrenia, Scoliosis

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Laden was born March 31, 2005. He was 22 inches long and 8 lbs 14 oz. Today, at 15 years old, he is 6’1” tall, 345 lbs, and still growing. He is such a loving boy that he is known as a giant teddy bear at home and school. He is really fond of babies. Not sure what it is about them but he absolutely loves babies. Laden’s feelings are hurt very easily if he thinks you are upset with him. He hates to be left alone. He obsesses over Halloween, cartoons, comics, and collectible toys. He loves to collect. We have to really keep a wrap on it and encourage the smaller collectibles for storing purposes. But hey, with his problems who cares, and it keeps him happy and focused on something important to him! He has a twinkle in his eyes and a smile that makes everything better!

As a newborn, Laden was having issues with jaundice and was placed under the special light. His sensitive skin burned pretty quickly. Laden wanted to eat more than he should as a newborn and even now it’s a daily struggle. He had episodes with horrible reflux and vomiting from infancy.

At just about nine months, he had his first seizure. He quit breathing and turned blue. I called 911 and his dad, a police officer at that time, actually came to the rescue as the emergency squad could not pass down the road. He whisked Laden out into his police SUV and Laden regained his breathing. His neurologist and cardiologist examined him but they all came to the conclusion it was a febrile seizure even though he had no fever.

Laden was a little late with milestones, but we reminded ourselves every child is different. He never really crawled but instead he Army crawled on his belly. As far as walkers go, backwards—and that was it for him—but boy he could zoom along.

As he entered pre-K his teacher noticed he was having a hard time with age-appropriate learning and peer-to-peer relations. He was a sweet boy, but just couldn’t grasp school activities. He was tested at four and it was determined he was developmentally delayed. Laden was moved to a school that could accommodate his needs and he loved it and they loved him. When the testing was completed we also received the diagnosis of autism.

Little by little, we saw how he had begun to regress physically. He could climb the steps to the slide easily as well as most other playground equipment, but then it seemed more difficult. We also began noticing something odd about his demeanor and crazy staring spells. After finally getting a neurologist to see him, Laden was admitted the same day for seizures. Doctors ran tests and proved epilepsy was the cause of the seizure activity, so now we also had epilepsy to add to his list. We tried many medications, but none seem to do the trick for him. He either had little to no results or his body was metabolizing the medication too quickly. In January 2011, he had a vagus nerve stimulation (VNS) implanted surgically. This vagal nerve stimulator has done wonders. His seizures have decreased greatly in combination with his current anti-seizure meds since this procedure. Laden had numerous seizures that caused him to quit breathing and to be taken to the emergency room. We are thankful these instances are far less frequent now.

He has had sleep studies for the issues while sleeping, but they still insist he doesn’t have sleep apnea and it must all be resulting from his epilepsy. While undergoing the sleep study work-up, Laden also had another MRI in February 2014. An abnormality was seen and a repeat test was done. Thankfully, there has been no change to this spot of interest but no answers to what and why it is there now. Is it a lesion from seizures, inflamed blood vessel, etc.? Not sure, but next week we are repeating the MRI and praying it hasn’t changed!

Walking started to be very difficult for Laden, especially long distances. Also, getting up and down from playing on the floor and out of the tub. He seemed to be pulling and dragging his right leg along. He saw a wonderful pediatric orthopedic doctor who found Laden has hip retroversion and his knee and ankles turn out as well. However, the major discovery was the leg length discrepancy. The doctor thought we had plenty of time before any surgical intervention but he found how quickly Laden grows and opted to do a growth guided surgery to try and stall the right leg to allow the left to catch up before it was too late. So far, he has healed and we are hoping for the best so he doesn’t have to go through a more invasive procedure to correct his legs. We are still waiting to see how we are going to address Laden’s flat feet. Currently, we have lifts for the left leg to help eliminate some of the constant pain and swelling he has in his feet and legs.

During the school year it seems as if he is always getting whatever is going around. Now, we are not saying we all don’t have this problem, but Laden doesn’t seem to shake off the 24-hour flu like the rest of us. Most recently, he has started frequent candidiasis (yeast infection) orally and on his bottom. He was hospitalized most of February this past winter due to the severity and inability to eat or drink. After it cleared up, we thought he was on the downward slope, but no such luck. This stuff is rearing its ugly head again. With the doctors treating him aggressively this time we hope it runs its course quicker than before. We don’t want it to start orally and traverse down his GI tract again to his buttocks and groin region. They have ruled out lupus and inflammatory bowel disease, and suspect it may be another type of inflammatory problem or possibly Behcet’s disease. Laden had upper and lower GI studies and gastritis is also present. Laden was recently diagnosed with Behcet’s-like syndrome for the frequent infections and ulcers. He is seeing a psychiatrist and therapist due to his increasing changes in his behavior. He has schizophrenia and bipolar II, which we are currently actively treating.

Many doctors and specialists have been involved in Laden’s medical care. We couldn’t ask for better medical professionals and their dedication in finding help and answers for Laden. Upon getting the genetic study back and having some answers, it helps our family to know we are not alone in this.

Written by his mom Melissa.