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Located: United States
ADHD, Anxiety, Autism-like symptoms, Brain lesions, Cysts, DMDD, Macrocephaly, Mild intellectual disability, OCD, Overgrowth, Scoliosis, Sensory processing disorderAbnormal EEG (spikes, but no sign of seizures), ADHD, Autism spectrum disorder, Cognitive disability, Developmental delay, Overgrowth (weight, macrocephaly, and height), Sensory processing disorder

Lucas was born on February 10, 2014. His mother did not experience any complications during pregnancy, except being diagnosed with gestational diabetes, which was controlled with diet. Lucas was born by a planned C-section with no complication. He had mild jaundice but did not require NICU treatment or oversight. At the time of birth he was 8 lb 2 oz, 20.25 inches in length, and had a head circumference of 14.25 inches. Lucas was a healthy baby, with no signs of anything wrong at the time of birth. Lucas breastfed exclusively, started babbling at two months, slept up to seven hours through night at three months, rolled over at five months, could stay in a seated position and grab objects at six months, clapped at seven months, said Dada and Mom at nine months, stood up in the crib at nine months, crawled at nine months, sat up from laying down at 10 months, cruised around furniture at 10 months, waved bye bye at 10 months, said Mama very clearly at almost 11 months, and walked at 14 months. He was on track developmentally, with some milestones being on the later side of the range.

Lucas did start getting sick at 4.5 months when he entered daycare with constant congestion and bronchiolitis, for which he did breathing treatments. He had coughing fits at night but positioning him into an upward laying position (45 degree angle) would help reduce them. The pediatrician stated he was not asthmatic.

His first ear infection was at seven months. After this, every three to four weeks Lucas would have another ear infection, which was treated with an oral antibiotic. The only way it was known Lucas had an ear infection was if he started getting sick (congestion), and then the doctor would confirm it. He never seemed upset with the ear infection. On February 6, 2015, (four days shy of his first birthday) he had his first set of ear tubes placed. Lucas still had ear infections often in spite of the tubes (in total, from seven months to 2.5 years he has had more than 20 ear infections).

Lucas was always sick with some form of a virus for his first two-plus years. On April 4, 2016, Lucas had his adenoids removed and his first set of tubes replaced with a new pair. Four months later, the left tube fell out. Since then, Lucas has not had an ear infection. He still was getting sick quite often (constant, thick nasal congestion and had to breathe through his mouth). He went to an allergist, who ran tons of lab work, and some of his blood work came back lower than the normal levels. The doctor recommended giving Lucas a booster of the PPSV23 vaccine to boost those levels. Since then, Lucas has been MUCH better health-wise.

Lucas’ speech has always been delayed, which was thought to be due to the ear infections. At 18 months, Lucas did private speech for one 30-minute session a week for roughly three months. At that time the pediatrician did not think Lucas’ speech (vocabulary) was behind enough to go to speech therapy.

Lucas’ baby brother was born in May 2016 when Lucas 2.3 years old. His parents are still a bit worried about his speech delay. In June 2017, the school district came to the home to see if Lucas’ speech delay warranted being in speech therapy through the school district. He did not qualify as they stated he was only three months behind. That same month, Lucas went to a private occupational therapist (OT) as his parents thought Lucas might have an oral/tactile sensory disorder as he likes to feel everything with his hands and then place it up to his face and insert in his mouth. His parents felt like he “mouthed” too much for a child of his age. The OT did not see any sensory issues.

That fall, his daycare stated on a few occasions that Lucas’ behavior had changed over the year that he had attended school there, that is, he does not want to partake in “circle time” (when he used to always sit and listen when reading stories), he started to climb on the table and push work to the side, etc. His parents did not see these behaviors at home, but did notice that Lucas seemed to have “performance anxiety.” He was enrolled in gymnastics, which his parents thought he would enjoy as he loves to climb and jump on trampolines. If he could run freely, then he was okay, but when instructed to do x, y, or z, he would have a meltdown. He did not want to partake in their circle time and would lay down and cry on the floor. At birthday parties that were not at a home, he would get upset when he felt forced to do something. If he saw another child doing an activity such as jumping into a ball pit at the gym, he would get upset and cry (hard). His parents attributed this to anxiety. At home, he would get upset if he could not do something or perform well. Lucas loves golf. If he swung the club and did not hit the ball, he would get upset; hence, the “performance anxiety.” Anxiety does run in the family. Then in December 2016, his daycare had a “sit down” with his parents to go over his behavior. It was then that with their cues we suspected something else might be going on (they suspected autism).

In January 2017, Lucas was seen by a private child psychologist. After the first one-hour evaluation she stated Lucas was not autistic, but his mom urged her to do the full three-hour exam and this is when she

stated that he is on the spectrum—ASD. That same month, the school district performed a full evaluation to see if Lucas met the requirements to enter their PPCD program (public pre-school for children with disabilities). He qualified due to his speech being at the third percentile and a suspicion of autism. This was suspended as he was too young, one month before being three years of age, and he also did not meet all of the standard ASD behaviors. For instance, Lucas will look you in the eye, he hugs anyone, can follow simple instructions, and engages with others, but does hand flap when excited, can be repetitive with language, although the phrases are used appropriately, and plays oddly with toys but has some imaginary play (that is, anything could be used as a phone or golf club). He behaves repetitively, as he would collect, say, three random toys and bring you one at a time, then take them back to another area in the order he gave them to you, and constantly closes doors when leaving a room. Lucas began private speech twice a week in February 2017. He also started in the PPCD program five days a week for half a day. At the end of the school year in May, the teacher stated that after one more year in PPCD Lucas will be in traditional kindergarten.

His family visited a neurologist after receiving the ASD diagnosis in March 2017. The doctor did a full work up and requested an MRI (normal), then referred us to a cardiologist (who did an echocardiogram and EKG, both normal), and we sent saliva off to a genetic laboratory. It came back stating Lucas has a deletion of 2p23.3 (the genes include DNMT3A and MIR1301). The doctor requested for the entire family to be tested and the test results were negative.

Neurology requested a one-hour EEG in April (this came back with right temporal lobe spikes, but never any seizures), and then Lucas did a 24-hour in-home EEG in May (which also came back with right temporal lobe spikes, but never any seizures). Lucas began OT twice a week in May 2017.

The neurologist recommended putting Lucas on Keppra in June, but this medication made him regress with speech and he seemed like a little zombie and was only himself for moments out of the day. He got off Keppra while we started lamotrigine 5 mg in August. Lucas began in-home ABA therapy three times a week starting in June 2017.

An appointment was made with a neurologist who specializes in seizures in October. They performed a one-hour EEG as well. No seizures were recorded but he did have right temporal lobe spikes, central lope spikes, and one frontal lobe spike. This doctor took him off the medication as there was no sign of a seizure, and she only wants to treat him with medication if he has a seizure. After getting off the medication, Lucas was slowly becoming the little boy he used to be. Lucas had an extensive, 72-hour in-hospital EEG in April 2018. Again, it observed no seizures, only spikes.

In March 2018, Lucas transitioned from PPCD to a more focused school program for children with autism (ECAP). Lucas receives speech and OT services through school as well. In August 2018, ABA services were suspended as Lucas’ parents wanted to streamline his schedule and allow him more time in the ECAP program. In May 2019, Lucas began seeing a private physical therapist (PT) for toe walking. He wears orthotics to keep his heal down. This is sensory related as he receives more input on his toes.

Lucas has since moved on to YCAP (young children with autism program) as a kindergarten-age student. He still receives speech and OT services through school and continues with private speech, OT, and PT. In October 2019, Lucas started to learn to use an iPad assistive technology device to help with communication. Since his regression in the summer/fall/winter of 2017, Lucas has not gained the voice output he once had (he used to clearly state two-to-three–word sentences, sing nursery rhythms, read Brown Bear, Brown Bear, and count forward and backward from one to 10). He can say words and has an extensive understanding of language, but he only vocalizes a few words.

In March 2020, Lucas was diagnosed with ADHD. His doctor and parents are trying to figure out the correct medications to assist with his focus, fight or flight response, and hyperness. In May 2020, due to COVID-19, Lucas once again began with in-home ABA service, while keeping with all other private therapies.

Lucas is a fun loving, sweet boy who enjoys to cuddle, give hugs and kisses, and watch movies and his favorite TV shows. He loves the outdoors, is a great climber with excellent strength, and loves swinging with the wind in his face. Lucas can swim and enjoys any water activity. He enjoys riding horses and petting animals. He can write his name, he is great at matching, sorting, and other school activities. Lucas has a very easy going, go with the flow temperament and always enjoys a good meal.

Written by his mom Kacee.

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