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First Covid-19 Test

Posted on by MICHELLE N

After William’s first ride on the school bus, he went him coughing and then had a fever for 2 days, we decided to take him for Covid-19 test.

We made appointment on Walgreens.com, they asked a few health question and insurance (we don’t have to pay even if we don’t have insurance).  To my surprise, William did not refuse to go at all, I guess because I explained it to him that it’d not be blood test; and that they just collect sample from his nostrils.

The test was done thru the Pharmacy Drive Thru window, the window was not open, they communicated with us thru the telecom and they put the stuffs in the metal box below the window and open that box for us to pick it up.  They gave us 2 zip lock bags: 1 with information about the test which we keep, the other one has the small tube with some liquid on it and a cotton swab which we use to swirl around each nostril 5 times, then put the swab in the tube, break the stick to fit the tub, put in the zip lock bag, drop it back in the metal box.

That was it, painless and fast.  William sneezed right away when we put the swab into his nostrils.

The result came back negative on 7/7/2021 which is 2 days later.

Test type: Diagnostic Lab Test (PCR)

Location

16201 HARBOR BLVD
Fountain Valley, CA 92708
Northwest corner OF HARBOR & EDINGER

Result:

Order Number 79012741
Results Summary
COVID-19: Negative
Your results do not detect SARS-CoV-2. A negative test means that the virus was not present in the sample you
provided.
Your results suggest you were negative at the time of testing.*
*Although the possibility is low, a false negative result should be considered if you have had recent exposure to
the virus along with symptoms consistent with COVID-19. COVID-19
This test checks for SARS-CoV-2, the virus that causes coronavirus disease (also called COVID-19), a respiratory
illness.
The Thermo Fisher Scientific, Inc. TaqPath COVID-19 Combo Kit used to perform this test has been authorized by FDA under an Emergency Use Authorization for use by authorized laboratories. The test has not been otherwise FDA cleared or approved. This test is authorized only for the detection
of nucleic acid from SARS-CoV-2, not for any other viruses or pathogens. This test is only authorized for the duration of the declaration that circumstances exist justifying the authorization of the emergency use of in vitro diagnostic tests for detection and/or diagnosis of COVID-19 under section 564(b)(1) of the Act, 21 U.S.C. 360bbb-3(b)(1), unless the authorization is terminated or revoked. NEXT STEPS
Although your test results did not detect the virus, you should continue to monitor for symptoms for up to
14 days after your last possible exposure. Seek medical attention immediately if you develop severe
symptoms, especially if you experience severe trouble breathing, continuous pain or pressure in your chest, feeling confused or having difficulty waking up, blue-colored lips or face, or any other emergency signs or
symptoms.
It’s important to follow isolation or quarantine precautions as recommended.
If you believe you have symptoms of COVID-19 or that you have been exposed to the virus, you should
consult your place of work for specific guidance about whether to stay home or continue working. You
should adhere to recommendations set forth by your employer or the department of health, as they may
differ from the CDC’s guidelines.
If you have questions about this test or your results, you can contact the PWNHealth Care Coordination
Team at 315-401-7865, Monday-Sunday, 8 a.m. to 11 p.m. Eastern Time, or email covid19@pwnhealth.com. You can also leave a message after hours and a PWNHealth team member will call you back as soon as
possible. For additional information on how you can prevent, treat, or help fight COVID-19, visit
https://combatcovid.hhs.gov.

 

2nd Time on Medication for ADHD

Posted on by MICHELLE N

Tuesday 6/22/2021, I gave William the new medicine (Amphetamine) that Ms. Elyse prescribed before going to school.  I broke the capsule and pour the medicine on a spoon of Nutella; he took it with no problem because he loves Nutella so much!

Then I drove him to school, I asked him occasionally if he had tummy aches or headaches, he said No.  When I handed him to Ms. Vanessa at school, I told him about the medicine and asked her to observe if he’s ok.

Noon time I picked him up. He ran out from the gate, kicked the sign on the way and even used his hands trying to push the sign down.  Wow, he was even more aggressive than when he had the other medicine.  When we got into the car, he repeatedly push the power button so many times!

When he got home, he seemed to be calmer.  I got him pizza and hash brown but he only ate some hash brown.  When Thomas (TasKids supervisor) and Marilou (ABA) came, he seemed to be fine.   I told Marilou about his temper when I picked him up; Marilou asked William what was wrong, “The teacher asked me to clean up which I did not like!”.

So I’m not sure he was angry because of the chores that the teacher asked him to do or it’s the side effect of the medicine.  We’ll have to try at least for a week more to be sure.

4th Meeting with Ms. Elyse

Posted on by MICHELLE N

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.

First Time on Medication for ADHD

Posted on by MICHELLE N

As Ms. Elyse, the Nurse Practitioner from Center of Autism, suggested to try the medicine (Methylphenidate HCL 5mg) on weekend because the side effects might be tummy aches, headaches, and lost of appetite for the first few days, I decided to let him have it on Saturday.

He was ok when I told him that he needed to take this medicine to help him focus.  He took the medicine with no problem.  After 10 minutes, he complained about the tummy aches, so I rubbed his belly, but that went away after 10 minutes.  Other than that, he did not have headaches or loss of appetite at all.

After 1 week of medicine, I noticed he had more aggressive behaviors like slamming doors, kicking things he saw when he was upset.  So I stopped giving him the medicine.   His aggressive behaviors went away after we stopped the medicine so it’s definitely this medicine is not good for him.

Tooth Hurts!

Posted on by MICHELLE N

Late Thursday afternoon, William complained that his tooth hurt.   I asked him to open his mouth and point to where he felt hurt, he pointed on the bottom right.  I saw swollen gum so I thought that’s where it hurt.

I told him rinsing his mouth with salt water would help to sooth the swollen gum; and to my surprise, he was willing to try.  I asked him to keep the salt water in his mouth until I counted to 20; and we needed to do it 3 times.  I did it without any problem.

Later he seemed to feel hurt more, so I gave him some Motrin; that helped him to sleep easier.  He woke up around mid night and complained about his tooth; it was more than 6 hours since I gave him Motrin so I gave him another 5ml; and 5ml Benadryl to help with his running nose.  He felt asleep about 1 hour later.

Friday morning, he was still sleepy so I texted Mr. Castenada about his tooth and asked for excuse from class.  “Toothache is no fun, let him rest” – replied Mr. C.

The whole Friday I’d give him Motrin every 6 hrs and had him rinse his mouth with salt water several times.  I texted my good friend Nhi at the All Children Dental for appointment, we got one at 9:00 AM on Saturday.  Knowing how he was so terrified on his first visit to the dentist about a year back, I primed him that we needed to see the dentist to check on his pain.  “No pulling tooth?” – He asked.  “No, the dentist will just check to see why your tooth is hurt” – I assured him.  I also primed him that they’d need to take the X-ray so that he needs to sit still while doing the X-ray.

Saturday morning, he woke up early around 7:30 AM.  I gave him some milk and cereal for breakfast before we headed to the dental office.  We arrived around 8:30 AM, he did not seem to be scared at all, I’m glad.

After filling out the forms and waiting for 10 minutes, they called his name.  They asked me to wait in the waiting area but I told the dental assistant that she would need my help because he would not sit still; so she let me in with him

She took him to the x-ray machine; to my surprise, he sit still and listened and did what the lady told him to do.  Two year ago I had to sit on the X-ray chair and hold him!  My little boy is growing up and starting to understand things.

After the X-ray, he was asked to sit on the chair and wait for the dentist.  He jumped on it with some enthusiasm.  I primed him that the doctor would need to see his teeth so he need to lie down still and open his mouth.  He nodded.  The assistant came to clean his teeth.  As soon as he saw she picked up the cleaning tool, he jumped off the chair so quickly and stood next to the wall!  Finally I had to hold him and lie down on the chair for the lady to clean his tooth.  It was a quick clean for about 2 minutes.

We were told to wait for the doctor; so I got off the chair and let him sit there by himself.  I reminded him again that the dentist will need to check his teeth so he needs to lie down still and do not move his head.  But then when he saw the doctor  apply some cream on his teeth, he jumped off the chair again and spit out on the floor!  One more time I had to hold him lying down so that the doctor could exam his teeth.

“We need to pull out this tooth!” – the doctor said.  Later when we got home, I realized that it’s the tooth that had the root canal 2 years back!  Why he has pain on the root canal tooth and that we have to pull it out?  Does that mean the root canal failed?  I felt so sad that William has to go thru this for the tooth that is NOT supposed to hurt if the doctor did a good job on the root canal.  The root canal procedure was supposed to save the tooth, but it did not!  He went thru that traumatized experience 2 years ago for nothing!

Doctor Vo said to make appointment for pulling the tooth.  I told her we’d call to make the appointment, so for now please prescribe him some antibiotics to help with the infection. So she did! ( She was not gonna prescribe anything until I asked).

William left the office feeling happy I think (no teeth was pulling out as I promised him).  We stopped by the SaiGon pharmacy to get his antibiotics medicine right after leaving the dental office.

We got him, gave him some lunch and we started the antibiotics and continue with Motrin because he still felt hurt.    He said the pink medicine does not taste good at all and that he hated it.  He said last time we had white medicine which tasted better.  I do not remember what was the color of the antibiotics last time but he kept saying it was white!

After 3 days with antibiotics, we finished 1 bottle, his pain is gone, so I stopped giving him antibiotics.

I was debating if I should make dental appointment for him for next Saturday or not; it’d be Memorial holiday weekend;  We need to have him start on the ADHD medicine that Ms. Elyse prescribed for him; she said that would give him headache and tummy ache for about 3 days so we should start on the weekend, which means this Memorial weekend is perfect to start.  If we don’t, then we’d have to wait till the next weekend.  This is the 2nd weekend after her prescription so I don’t think we should not delay further.  Thus, I decided not to make that dental appointment; and that we’d start on the ADHD medicine instead.

He’s no longer feel pain on his bad teeth, last time I checked.  “My tooth feels better now!” – He said.

Meet The Nurse Practitioner (2nd time)

Posted on by MICHELLE N

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.

 

 

Our Journey To Get In To The Center for Autism & Neurodevelopmental Disorders

Posted on by MICHELLE N

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

 

 

Typical ABA Session

Posted on by MICHELLE N

Currently, we have ABA sessions on M, W, F, from 5:30 PM – 7:30 PM. Mondays & Fridays we have Thomas as William’s BT. He’s been with us for about a year now. On Fridays we have Brenda; which is our new BT for about few months. Brenda is also responsible for Social Groups on Saturdays from 9:00 AM – 12:00 PM.

A typical ABA session at home would be Thomas/Brenda asking William what he wants to do or what game he wants to play. Most of the time I’d be cooking our dinner while listening to their conversations. Some times I sit down and watch them. We’re so lucky to have BTs who are patient and dedicated to their job.

ABA session with Thomas

Now it’s summer so some times we go out to the back yard and William plays in the trampoline. We also walk around the neighborhood to practice our goals of “Asking permission/Elopement”. William tends to run off to whatever he wants so the goal is for him to ask permission before he goes and to stay next to mom & dad when going out.

I Want to Sleep At Home

Posted on by MICHELLE N

1:00 PM

Picked William up at Martin Elementary School and dropped him off at Children’s World Preschool. While I was unbuckling, I said “Go in and sleep ok?”

“No!”, he said.

“Why Not?” – I was surprised.

“I want to sleep at home!” – I was a bit shocked because he’s never said that before.

It shows that he’s now trying to use words to express what he wants. Second, it means he’s actually thinking, he feels the difference between home and daycare.

“Mama has to go to work, so William sleeps at the daycare, ok?”

He did not say anything, looked like he was ok with that.

I’m happy and sad at the same time. Sad because we have no-one at home to watch him so that he can stay home; it’s only a 4 hours before we’re off work. Happy because my boy is growing up fast and his language skill is improved a lot. He observes more and talks more.

All the hard works actually pay off.

William has had ABA sessions since he was 2 years old: spend at least 3 hours a day with a therapist every day. While other children his age can learn simple things easily and naturally; he has to learn it over and over again so many times in order for him to get it. Lots of frustrations, tears and tantrums along the way, but I’m happy with the progress he has made.

There’s still lots of things William needs to improve and learn but regardless, I’m so proud of him!

Love you, Son!

ABA Hours Cut, Again!

Posted on by MICHELLE N

Monday 5:30 pm. ABA session as usual with BT Thomas and PC Jody. Huy also came to go over the report that they will submit to the director. At the end Huy concluded that William has mastered most of the goals so he wanted to cut 6 hours more which means ABA sessions will be reduced to 3 days instead of 5 days per week. So we will only have 9 hours for ABA and 8 hours for PC, effective Mar 2019.

On July, 2018 Huy cut ABA hours from 24 hours / week to 17 hours/week , and then on Nov decided to not send BT to the day care; now 6 months later he reduced further to 9 hours/week. So that’s a total of 15 hours that he took away from us within a year. At this rate he will soon declare that William will no longer need ABA!

I understand that as William is mastering some goals and we would not need that many hours as before but cutting that many hours within less than 1 year is outrageous. I hope his decision is based on what is best for William, not because his ambition to graduate his client as soon as possible. William’s tolerance to No is no where near master but he marked it as Mastered! I’m just too tired to fight; mostly because I know for sure that I’d loose in this fight. He’s the supervisor and he has the final word.

As the supervisor, wouldn’t he know to add more goals to the list: he marked “Discontinue” for 20 goals but only adding 5 more safety goals, which I raised concern about. Other than that he doesn’t suggest any other goals, there must be some other goals that an autistic child need that we;re not aware of, as this is our first time being a parent.

I felt sad and helpless and speechless!

I’m trying to look at the bright side so that I’d not feel so down: maybe now that William will have some available time to take gymnastics or martial arts classes which are not offered on the weekends.