After 3 months, we met with Ms. Elyse (the Nurse Practitioner) again using their online meeting tool. She asked how’s William is doing and if we have any questions or concerns.
Category: Neurologist
4th Meeting with Ms. Elyse
Another zoom meeting in 1 month after the last meeting with the Nurse Practitioner Ms. Elyse.
She followed up about the medication. I told her about his aggressive behaviors that I stopped giving it to him. She suggested another medicine; this time it’s a long acting one that will last from 6-8 hours. It’d give the same side affects like tummy ache and headaches and loss of appetite.
3rd Meeting With Ms. Elyse
Zoom meeting at home. We talked about giving William medicine to help with his focus. She prescribed short acting medicine Methylphenidate HCL 5mg to have in the morning, which will last around 4-5 hours. Side effects would be tummy aches, headache for the first 3 days and loss of appetite. She suggested to give it on the weekend.
Meet The Nurse Practitioner (2nd time)
It was Friday, we had a meeting at 10:00 with Ms. Elyse, the Nurse Practitioner from the Center for Autism as scheduled. I took a day off to take William to their office. I’ve been priming him about this appointment since yesterday, William was not scared at all, in fact he kept asking me “Can we go now?”.
They called me on Thursday to confirm the appointment. Upon checking in, they checked our temperature and asked a few questions about Covid-19: if we live/meet with someone with Covid-19, if we have fever, etc. Then they asked us to wait; the office is nice, big and … empty! I guess because of covid-19 they don’t bring clients to the office unless it’s necessary.
After 10 minutes waiting, we got called by a lady. William ran to her immediately. She asked William to take off sandals and step up on the scale; she measured him and took his blood pressure. William did what she asked without hesitation! Never seen him so excited in a doctor’s office before. She asked if there’s any reports that we need to give it to Ms. Elyse so I gave her the forms that filled out by Ms. Newmand and Mr. Casteneda.
Then she took us to a room and asked us to wait for Ms. Elyse.
Of course William could not sit still while waiting: he touched this and that, he opened the drawers, he tried to pull down the window blinds. Ten minutes after 10:00 AM, Ms. Elyse knocked on the door. She asked us to sit in the corner far away from her desk, which is understandable with the rule of 6 feet apart in this pandemic time.
She asked if Williams wanted some toys, “No, I don’t need it”, William replied. Ms. Elyse asked, “What do you think, mom?”. “Maybe some Lego” – I replied. Ms. Elyse left the room and came back with a small box of Lego blocks and gave it to William, she assured that these are sanitized.
Ms. Elyse had the forms in her hand; she said that based on the teachers’ ADHD rating scores, William indeed has the ADHD. She asked if I’m ready to discuss about medicine for William, I said “Yes”. Then I told her about William’s sleep issue, that he cannot sleep until midnight. From that moment on, to my surprise, her questions are about his sleep routine, what time he eats/showers/brushes teeth, does he watch TV in bed, etc. I told her William takes shower before dinner around 7:00 PM, finishes dinner around 8 :00 PM, then we do some homework in the bedroom before he sleeps.
Then she suggested that we moved the brush teeth and shower time to 9:30 PM, give him some Melatonin 3mg and by 10:00 PM has to be in the bed room, read some bed time stories and turn off the lights. She said shower might help him to relax and Melatonin takes some time to work; and TV/ipad/iphone/homework before going to bed will trigger his brain to work which is not good for falling asleep so need to avoid. “Let’s try that for 4 weeks!” – she said. “And no nap time!”
William during this time some times stacked up the Legos, some time walked around the room; One time he got up to Ms. Elyse’s desk but she immediately asked William to go back to his chair.
“Do you think improving his sleep routing will help with his being hyper?” – I asked. “Most likely!” – she said.
One hour passed by, the last few minutes she checked William’s heart beat; asked William to pull up his shirts and looked for birth marks. She said there’s one, very light in color on his right near the stomach. I did not think that’s the birth mark until she said so. Our time was up, she took us to a different way to exit the office.
Somehow I have the feelings that Ms. Elyse tries to avoid prescribing medicine for William. In the first meeting, she said she never prescribes medicine in the first meeting; and that we’d discuss in the next meeting. Now that we met the 2nd time, she focused on improving William’s sleep; and said that sleep might have negative affect on his focus. It’s not that I want William to be on medication, but I wonder why.
And I never saw she smiles, even just once! It’s so stressful to take care of an autistic boy, as well as all the meetings like this really bring me down. A smile can bring some comfort, I think! Somehow I remembered the first time we met the neurologist Le Thanh, he made the conversation fun and interesting. I wish we can go back to his office but our family doctor’s billing lady said Dr. Thanh is no longer in the network of our funding source. He’s such a nice man.
William weights 51 lbs, 47.5 inches tall and his blood pressure is good.
First Meeting With Ms. Elyse
It was our first time to meet Ms. Elyse, the Nurse Practitioner. Due to the pandemic Covid-19, it was a zoom video meeting. She requested that we moved the camera so that she could see William’s whole body, not just the face. William as usual would not sit still: he kept moving around, jumped up and down on the couch. Ms. Elyse asked him some basic questions like his name, mom and dad names & phone numbers, our home address. William said “I don’t know” but with my help of telling him the first word, he’d finish the rest. He was sleepy (or bored?) that he ran into the bed room several times, I had to bring him back to the zoom meeting.
Ms. Elyse asked a lot of questions, most questions are similar to those in the intake application. Then she confirmed that William has Autism and ADHD. She suggested to meet William in person in 1 month to discuss about the medicine for ADHD if I’m interested. I said “Yes”.
She said to send William for blood tests: Genetics Chromosome and Fragile X (FMRT) w/ Reflex to Methylation Lavender.
She’s a very serious person, I don’t think I saw her smile at all during our zoom meeting.
Our Journey To Get In To The Center for Autism & Neurodevelopmental Disorders
First time William saw a neurologist was 3 years ago. After that Dr. Huy’s office recommended Center of Autism but the waiting time in average is 6 months; we sent in the application but they never call back. Then Covid-19 hit. I called about 3 months ago to follow up, the intake department said they got our application but they needed the latest IEP and tri-annual reports from school in order to transfer to scheduling department. So I contacted Jefferson school; it was so hard to reach anyone there: I left several messages and no one called back. One day I could get a hold of some one, she said because William just transferred to this school so they don’t have the reports; they faxed the request to William’s former school which is Lincoln school but they had not gotten any reply yet! So I called Lincoln school, Ms. Karen answered as always; she said she did not receive any request from Jefferson! I called Jefferson school again several times to ask if they can fax over the request 1 more time, no one answered!!
Ms. Karen was so nice to talk to Ms. Newman; Ms. Newman contacted me right away, however she said because William is no longer in this school so she cannot access William’s record anymore; but she still has the report ,so she sent to me! I was so happy that finally after 2 weeks of contacting Jefferson school with no hope, Ms. Newman came to rescue. Finally I had the reports to email it to Center of Autism.
No word from the Intake department, I started to question if I sent to wrong email; so I called again. The man said he got the report but it missing the evaluation from the school psychologist! So I emailed Ms. Newman, Ms. Newman contacted Ms. Emily, Lincoln school psychologist; she had a copy of William in her computer so she emailed to me right away. I can’t say how much I appreciated their time and willingness to help and response promptly. Happily I email the Intake department the requested report with the hope that now we could make appointment to see a neurologist. This time the Intake department replied back that they had all the reports they need, they would send our application to the scheduling department.
So I waited; no call from scheduling department; I emailed the Intake department, the man said “I forwarded your email the scheduling dept. they will contact you”. Few days passed by, still no word from anyone! So I called the Intake department (that’s the only number that I know), he transferred me to the scheduling department; I finally could make an appointment!
Frustrated? Of course! I could not believe it’d take so much time and effort to finally get an appointment with a neurologist. But now that we had one, William deserves to have all the treatments that he needs, that’s all that matters to me.
That would be a zoom meeting with Elyse R Schoenwald, NP for 1 hour on 3/16/2021.
They told me to go to MyChart from https://my.ucihealth.org website to sign up; they’re using this site to manage all the appointments and reports. It’s a very nice site.
Center for Autism & Neurodevelopmental Disorders (www.thecenter4autism.org)
2500 Red Hill Ave, Suite 100, Santa Ana, CA 92705
Phone: 1.949.267.0400
Fax: 1.949.221.0004
thecenter4autism@uci.edu
Intake Department: Phone: (949)267-0447 Email: VelasCP1@hs.uci.edu Fax: (949)221-0053
Neurologist Meeting
Friday morning, we had appointment to see the Neurologist Thanh Le in Newport Beach. Its location is hard to find so I ended up park in the business center near by and walk to his office. The building is so beautiful with water fountains and green landscape. His office is on the 2nd floor, William enjoyed riding the elevator as usual but he he cried and kicked when we approached the office door; once we got inside he refused to get off the stroller.
I filled out all the paperwork at home so it didn’t take long to check in. We waited for only 5 minutes then the lady took William to the scale to measure and weight him. 37 inches and 36 Lbs. About 10 more minutes waiting in room #1 for the neurologist Thanh Le. The doctor came in, said hi to me and started talking about Autism. He didn’t try to gain William’s attention or communicate with him but I know he was observing him while talking to me. About 10 minutes later he turned to William, gave him a little tape measurement so that William can play with and he has another one that he used to measure William’s head. Then he used some metal tool to knock lightly on William’s knees.
He said William met all the criteria of autistic. The most important thing is William didn’t look at him when he walked into the room (no eyes contact). Dr. said normal children would just look at the him and use eyes to observe. Normal children would point to this or that when they like some thing, but William would just take my hands and lead me to the things that he likes. Dr. Thanh explained that autistic children would not understand body language. If we say the same sentence in 3 different voices: normal, angry or happy. Normal children would understand that but autistic children only understand the words (if they can), not the differences in the way we say. He used Blind and Deaf person for examples a lot. He said we don’t yell at Deaf people because we know they can’t hear us. Autistic Spectrum Disorder, why they call it Spectrum? Because spectrum is a range. 1 end is Autism, in the middle is normal people and the other end is Politician. A Politician can talk about 1 small for 2 hours, while Autistic person doesn’t want to talk at all.
He said, ABA services is more important than speech therapy because William doesn’t have problem with speech at all, he can echo what we said. It’s just that he DOESN’T WANT to TALK! and it’s one of the characteristic of autism.
He also mentioned that in San Jose there’s a company that has a whole building for autistic people to work where they provide foods, shower and couches/beds facilities. The doctor was trying to say that there’s hope for my boy if I raise him in a right environment, he can find a job and work as normal person. But first need to teach him to talk so that he can communicate even just at the minimum level.
The meeting took about 30 minutes total, I think, and Dr. Le gave us a report right after that. And he said it’s recommended to see a neurologist every year.
Dr. Thanh Le has been a neurologist for 20 years so I trust his expertise in this field; and plus I really like the way he talked and explained things to me, very easy to understand; and his approach of waiting 10 minutes to interact with William to make sure William is getting used to his presence in the room is brilliant.
