Friday, July 31, 2009

Stabbed in the heart

I got a call back from my behavioral pediatrician who just happens to be the wife of Joey's neurologist (she referred me to him). She said that I need to get in to see her husband; that the EEG is showing that Joey is having complex partial seizures and will need an MRI and possibly meds. She said that children that have these also have a high chance of having attention problems in school. When I asked her about the issue with an EKG, she said that while monitoring his heart during the EEG, they showed an arythmia. She said it is common and could be nothing or could be the sign of something serious. He will definitely need another EKG (one with 12 leads) and possibly an Echocardiogram.

Holy Crap!!!

I have a lot of health issues and can deal with anything thrown at me. I just can't deal with anything happening to my son. I'm sure a lot of moms feel that way. I can't live in a bubble but I just feel like he has been through enough. My poor Joey. I just love him so much.

Thursday, July 30, 2009

EEG results

I should have posted the day of Joey's EEG but I was just so exhaused to do so.

I was supposed to sleep deprive him for 2 nights before the EEG. The first night, Sunday, he fell asleep early. Of course he did! He also had diarrhea in his sleep so I figured that he was not feeling good. The next day, he fell asleep early around 7pm. I figured I would let him sleep for a while and that he would probably get up in the middle of the night and I would just keep him up from then. He woke up at 10pm! By 2am, when he started rubbing his eyes, I figured it was too late to let him sleep so I kept him up. Guess what...I never slept.

We got to the hospital and did not have to wait long to be seen. Joey had just fallen asleep in the car but was up once we entered the building. I was impressed by Phoenix Children's Hospital's neurology department. The people were so kind to Joey. They realized that he wouldn't lay down so they had my husband lay down next to him and restrain his arms and legs. I ended up
leaving the room because Joey got upset every time he saw me. I went out to answer some medical history questions and then waited in the private waiting room. When it was over, Joey got to pick a stuffed animal after they were done washing his hair. He wanted to keep the sticky tape on his chest. As a matter of fact, he wanted to leave his head wrapped with all the electrodes hanging off. Yet another example of him not doing well with transitions.

I spoke to the medical assistant at Joey's primary pediatrician and was told this: the EEG was abnormal and the EKG, that was only done with 2 leads, needs to be redone with 12 leads.

After hours of crying, all I can do now is wait to see the neurologist. I know that an abnormal EEG can mean many things and that I shouldn't get ahead of myself but it's hard not to overreact. I can't even think straight right now.

Tuesday, July 21, 2009

The National Autism Conference in PA ~ see it free in AZ!

Thank you, Katie Wride, for this information!

The National Autism Conference in Pennsylvania , a premier conference on evidence-based practices for students with autism will be webcasting a number of sessions this year that can be viewed from your computer from August 3-7. (Note: There is a 3 hour time difference!) The webcasts are free and require no preregistration, unless you are interested in continuing education credits. Credits are available from ASHA and for BCBAs for $300. More information and all handouts are available at http://www.outreach .psu.edu/ programs/ Autism/.

The Arizona De partment of Education, Exceptional Student Services will offer a group viewing of 2 sessions of the conference at our Phoenix office at 1535 W. Jeff erson on Tuesday, August 4, and Thursday, August 6 from 10:00-2:00 . Each session includes the webcast presentation followed by 30 minutes for discussion/networki ng. Pre-registration is required through the ADE Calendar of Events by August 1, 2009 : http://www.ade. az.gov/onlinereg istration/ calendar/ RenderCalendar. asp. Handouts will not be available at the event. They must be downloaded by each participant prior to the session at http://www.outreach .psu.edu/ programs/ Autism/.




Tuesday
August 4
10:00 AM- 2:00 PM

Autism/ Evidence-Based Strategies for Effective Early Intervention Programs
Jim Ball

Session to be webcast from the National Autism Conference in Pennsylvania followed by an opportunity for discussion and networking. This presentation will discuss systematic techniques for working with children with autism, focusing on teaching specific skills, enhancing motivation, and generalization training.
Participants must download and print handouts for session # 26 prior to the session at http://www.outreach .psu.edu/ programs/ Autism/



Thursday
August 6
10:00 AM- 2:00 PM
Autism/Preventing and Managing Behavioral Crisis
David Lennox

Session to be webcast from the National Autism Conference in Pennsylvania followed by an opportunity for discussion and networking. This session will review traditional crisis management approaches, as well as contributions from behavior-analytical research and practices for preventing and managing crises.
Participants must download and print handouts for session # 65 prior to the session at http://www.outreach .psu.edu/ programs/ Autism/

Two great websites to find service providers

http://providersear ch.com/Default. aspx helps you find local providers in your area.

www.findingservices .org was created by local families in AZ.

I hope this info helps!

Monday, July 20, 2009

Gluten Free on the go

Discovered a great website today: www.glutenfreeonthego.com.

It has long been a concern for me to start the diet for my son knowing that we do enjoy eating out a lot. This website will help you out anywhere in the world!

Sunday, July 19, 2009

Inspiring Story

It's nice to read an inspiring story and it's also nice when it brings Autism awareness to the world, especially those who don't live with it daily.



Here's the link:
http://www.aolhealth.com/health/caregiver-support/autism-horse-boy

WOW...it's almost been a year

11 months ago, I posted my 1st entry on this blog. I knew it was approaching but didn't realize how soon. We've been on this journery almost a year now; it's hard to remember what life was like before we started.

Music Therapy

Sometimes, things just have a way of working out. I received a flyer on a yahoo group that I am a part of and it made my day. It was advertising music therapy sessions specifically for children with PDD-NOS and Asperger's, who generally don't get services through the state. Trying to cash pay for these services elsewhere usually lands you on a waiting list because those who receive help through DDD get it first. Crazy, huh? The cost is only $15 per session!

Here's the info:

Valley Music Therapy
Tuesdays at 4pm
Scottsdale Bible Church
7601 E Shea Blvd Room E102
Call 480.332.1651
www.valleymusictherapy.com

What is Asperger's Syndrome?

Taken from Wikipedia:

Asperger syndrome is an autism spectrum disorder (ASD), and people with it therefore show significant difficulties in social interaction, along with stereotypies and other restricted and repetitive patterns of behavior and interests. It differs from other ASDs by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported. It is named after the Austrian pediatrician Hans Asperger who, in 1944, described children in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy. Fifty years later, AS was standardized as a diagnosis but questions about many aspects remain. For example, there is lingering doubt about the distinction between AS and high-functioning autism (HFA); partly because of this, the prevalence of AS is not firmly established. The exact cause is unknown, although research supports the likelihood of a genetic basis; brain imaging techniques have not identified a clear common pathology.
There is no single treatment for Asperger syndrome, and the effectiveness of particular interventions is supported by only limited data. Intervention is aimed at improving symptoms and function. The mainstay of management is behavioral therapy, focusing on specific deficits to address poor communication skills, obsessive or repetitive routines, and physical clumsiness. Most individuals with AS improve over time, but difficulties with communication, social adjustment and independent living continue into adulthood. Some researchers and people with AS have advocated a shift in attitudes toward the view that AS is a difference, rather than a disability that must be treated or cured.

Taken from WebMD.com:

Although there are many possible symptoms of Asperger’s syndrome, the main symptom is severe trouble with social situations. Your child may have mild to severe symptoms or have a few or many of these symptoms. Because of the wide variety of symptoms, no two children with Asperger's are alike.

Symptoms during childhood:
Parents often first notice the symptoms of Asperger's syndrome when their child starts preschool and begins to interact with other children. Children with Asperger's syndrome may:
~Not pick up on social cues and may lack inborn social skills, such as being able to read others' body language, start or maintain a conversation, and take turns talking.
~Dislike any changes in routines.
~Appear to lack empathy.
~Be unable to recognize subtle differences in speech tone, pitch, and accent that alter the meaning of others’ speech. Thus, your child may not understand a joke or may take a sarcastic comment literally. Likewise, his or her speech may be flat and difficult to understand because it lacks tone, pitch, and accent.
~Have a formal style of speaking that is advanced for his or her age. For example, the child may use the word "beckon" instead of "call" or the word "return" instead of "come back."
~Avoid eye contact or stare at others.
~Have unusual facial expressions or postures.
~Be preoccupied with only one or few interests, which he or she may be very knowledgeable about. Many children with Asperger's syndrome are overly interested in parts of a whole or in unusual activities, such as designing houses, drawing highly detailed scenes, or studying astronomy. They may show an unusual interest in certain topics such as snakes, names of stars, or dinosaurs.
~Talk a lot, usually about a favorite subject. One-sided conversations are common. Internal thoughts are often verbalized. ~Have delayed motor development. Your child may be late in learning to use a fork or spoon, ride a bike, or catch a ball. He or she may have an awkward walk. Handwriting is often poor.
~Have heightened sensitivity and become overstimulated by loud noises, lights, or strong tastes or textures. For more information about these symptoms, see sensory integration dysfunction.

A child with one or two of these symptoms does not necessarily have Asperger’s syndrome. To be diagnosed with Asperger’s syndrome, a child must have a combination of these symptoms and severe trouble with social situations.

Although the condition is in some ways similar to autism, a child with Asperger's syndrome typically has normal language and intellectual development. Also, those with Asperger's syndrome typically make more of an effort than those with autism to make friends and engage in activities with others.


Ok...after reading this, I can see why the doc at Melmed would say that his diagnosis may change to this. Some people have told me that he can't has Asperger's because he had a speech delay. But he only had that because he couldn't hear. He started speaking right away after his tubes were put in.

1st gluten free dinner

Wrote this last night but never posted it....

I just finished cooking my 1st gluten free dinner. Joey is a picky eater but at least he ate some of it so there's hope! I cooked up Trader's Joe's mac & cheese and Whole Foods chicken tenders. It's a start!

I was told that until I have Joey evaluated by a gastro doc that I should wait to go completely GFCF. Until then, I am slowly substituting his favorite things so that I can load up my arsenal for when we are ready to go full throttle!

Thursday, July 16, 2009

SARRC's Jump Start Program ~ Day 1 (7/15)

Yesterday was our 1st day at SARRC's Jump Start Program. I was on the waitlist for this since January and had to pay the full $500 tuition for it 6 weeks before the start date. Do you think we were excited? You bet we were!

What made it bittersweet was that my ex-husband just happened to be in town for a few days so he was able to make it to the 1st day. I really didn't think he would go but he did and it seemed like he wanted to be there. Well, he showed as much enthusiasm as he's capable, which is not much, but it was good for him.

The 1st part of the 3 hour session is always a lecture and the 2nd part is either observation or one on one training with your child. Yesterday's lecture was basically an introduction to the program and to Autism; basic descriptions of the Spectrum and treatments for it.

I really think that my ex finally understood that yes, there is something going on with his son and that it's a good thing Mommy hasn't buried her head in the sand the way Daddy has for the past year.

I am looking forward to the next few weeks and am already putting some of the DTT techniques they briefly touched upon yesterday.

The Frustrating EEG

Tuesday was our 2nd attempt at getting an EEG done. The first was last Wednesday. I sleep deprived him and myself and he wouldn't get near the table. This time, I had the neurologist prescribe a mild sedative that I would give him beforehand to calm him down. 1 1/2 doses later, he would still not get near the table. He was so scared that he was fighting sleep and when he did fall asleep, the slightest crinkle of the paper on the table woke him up. It's so hard to see your child crying and begging you to go home when you're trying to take care of him. I hate those times but I guess it comes with the territory.

I am in the process of getting it done at Phoenix Children's Hospital. Even though they won't sedate him, they are better equipped to work with him and get it done. I'll keep you all posted.

Bad Mommy

Wednesday, July 8, 2009

Upcoming Events at SARRC

These are just two that I am hoping to attend. There are many more on SARRC's website at http://www.autismcenter.org/.

Sleep Issues

The Southwest Autism Research & Resource Center (SARRC) Education and Training Program offers topic-based training activities for parents, educators, therapists, psychologists, administrators, paraprofessionals, habilitators, social workers, and others that live or work with individuals with autism spectrum disorders (ASD). Trainings are led by local and national speakers in the field of autism spectrum disorders. This program provides opportunities for advancing the abilities of individuals with ASDs, increasing their level of quality care and instruction, and raising awareness of ASDs. Equally important, it promotes understanding and acceptance from the home, classroom and playground to the workplace and community at-large.
Training activities are recommended for parents, educators, therapists, habilitators, and others working or living with an individual with autism spectrum disorders (ASD).

When: Monday, July 13, 2009
Time: 1 p.m. - 3 p.m.
Where: SARRC Main Campus for Exceptional Children 300 N. 18th Street, Phx, AZ 85006
Cost: Please call SARRC at (480) 603-3283

Toilet Training

The Southwest Autism Research & Resource Center (SARRC) Education and Training Program offers topic-based training activities for parents, educators, therapists, psychologists, administrators, paraprofessionals, habilitators, social workers, and others that live or work with individuals with autism spectrum disorders (ASD). Trainings are led by local and national speakers in the field of autism spectrum disorders. This program provides opportunities for advancing the abilities of individuals with ASDs, increasing their level of quality care and instruction, and raising awareness of ASDs. Equally important, it promotes understanding and acceptance from the home, classroom and playground to the workplace and community at-large.
Training activities are recommended for parents, educators, therapists, habilitators, and others working or living with an individual with autism spectrum disorders (ASD).

When: Monday, August 10, 2009
Time: 9 a.m. - 12 p.m.
Where: SARRC Main Campus for Exceptional Children 300 N. 18th Street, Phx, AZ 85006
Cost: Please call SARRC at (480) 603-3283

SARRC needs participants for upcoming research

SARRC (Southwest Autism Research & Resouce Center) is in need of participants for their new research study. I have taken part in a research project there before so I can tell you firsthand that they are great to work with and are sensitive with their subject matter.

Here's the info:

Your child must be 6-12 years of age. The program is called ConnectMe and it is a clinical research trial of an investigational medication.

Please call 602-218-8225 or go to www.autismcenter.org if you are interested in taking part of this study. With the help of participants, we get closer to finding the cause of Autism and possibly, a cure.

Tuesday, July 7, 2009

I love to take baths but never thought about a clay one

In reading up on chelation, I stumbled upon clay baths. It's sort of a home remedy instead of spending a lot of money on chelation, the process of detoxifying the body of heavy metals.

Here is the website:
http://www.newspiritservices.com/claybath.html

It seems like a simple process; one that I would try on myself before I attempt to try it on my son. I will keep you posted.

He needs a what...?

Last Wednesday, something happened twice within a half an hour that has happened before. Joey blanks out. It's the only way I can explain it. He's had them before but I never noticed him having them twice in one day. I did some research later that night and found out that they are called absence seizures. I called his behavioral pediatrician and she said that all though it wasnt' life or death circumstances, she wanted him to be seen right away for a sleep-deprived EEG. Coincidentally, her hubby is a neuro. I called my insurance company today and he was listed as a contracted doc (I later found out that they don't take my plan so it's cash pay). My appointment is set for this Wednesday.

Thursday, July 2, 2009

I made the Type-A Mom homepage once again!

Check out www.typeamom.net under Mom Topics and you will find my new article; "When a Child on the Autism Spectrum is Part of the Wedding."

I took a previous blog post and made it into an article. It marks the 1st time I've written in 10 months and the 1st time I've written about Joey's diagnosis in an article. It makes sense that I stopped writing 10 months ago. That's when Joey was diagnosed and I couldn't find the words to put into article form but started blogging instead. Free flowing writing is what I needed at the time.

I hope you enjoy the article.