Learned something new

As an evaluator, I have seen hundreds and hundreds of children through the years and encountered innumerable diagnosis. What makes my job more and more interesting to me is when I learn something new. I have never heard of achalasia up until last week. It is a disorder of the esophagus that affects the esophagus' ability to move food toward the stomach. It was the child’s mom who was diagnosed with this. Mom had a high-risk pregnancy; she was hospitalized about 15 to 20 times due to frequent regurgitation of food, difficulty taking in food and keeping it down. She lost 40 lbs. Mom was in so much distress, that an elective C-section was requested and scheduled on her 36th week.

On my next case, I was introduced to Noonan Syndrome by the parents of a premature child that I was evaluating. Mom and dad alternately explained that it was a genetic disorder, that afflicted children have cardiac problems, hearing loss, failure to thrive, developmental disorders, mental retardation, and so on. The extent and/or severity of the disorder vary greatly.

I got many hits when I did an online search for Noonan Syndrome, but I’ll share with you the information that I got from MayoClinic.com.

Noonan syndrome is a genetic disorder that prevents normal development in various parts of the body. A child may be affected by Noonan syndrome in various ways: unusual facial characteristics, short stature, heart defects, other physical abnormalities and problems, and mental retardation.

The cause of Noonan syndrome is a mutation in one of two genes (PTPN11 and KRAS) responsible for making a specific type of protein that plays an important role in the development of the heart, blood cells, bones and other tissues. Noonan syndrome is acquired when a child inherits a copy of an affected gene from a parent. It can also occur as a spontaneous mutation in a child, meaning there's no family history of the disease.

It is estimated that Noonan Syndrome occurs in one of 1,000 to 2,500 births. There's no cure, and treatment focuses on managing the disease's symptoms and complications. Growth hormone has been used successfully to treat short stature in some people who have Noonan syndrome. It used to be called Turner-like syndrome because certain symptoms (webbing of neck and abnormally shaped chest) resembled those seen in Turner syndrome. Other names for Noonan syndrome are:

· familial Turner syndrome
· Female Pseudo-Turner Syndrome
· Male Turner Syndrome
· Noonan-Ehmke syndrome
· pseudo-Ullrich-Turner syndrome
· Turner's phenotype, karyotype normal
· Turner syndrome in female with X chromosome
· Ullrich-Noonan syndrome

If you want to know more, this booklet and this site will be helpful.

While obtaining the child’s birth and medical history, another new term (to me, at least) came up. Hydrops. When mom went in for a regular doctor’s check-up on her 31st week, it was found that the baby had hydrops, a serious fetal condition defined as abnormal accumulation of fluid in 2 or more fetal compartments, including abdomen, subcutaneous tissue, pleura, or pericardium (heart) tissues. Mom had to undergo an emergency Caesarian-section delivery. The baby was born weighing 6 lbs. 7 oz., but the amount of fluid drained from her was 3 lbs 6 oz. Technically, the baby’s weight was 3 lbs 1 oz.

Achalasia. Noonan Syndrome. Hydrops. Off you go to my medical terminology memory bank.

Do you want to work in Early Intervention?

First things first. In New York, you will need an approval letter from the Department of Health to provide Early Intervention services. Download the application form here. Once approved, you may contract with the different early intervention agencies to do evaluations or service provision.

It is stated in the application that you must have a minimum of two years experience providing services to infants and toddlers with, or at risk of, developmental delay or disability. You are also to indicate your attendance in educational programs (e.g. continuing education courses, in-service trainings) that focus on early intervention for infants, toddlers and their families during the previous three years. Try to be as detailed as possible in discussing your pediatric experience to provide the reviewer as much information regarding your qualifications. You may use additional sheets as necessary to specifically outline your job description (especially the part pertaining to your work with the 0-3 population) or enclose a resume with sufficient informational data (e.g. age range of children you have worked with, types of diagnoses handled, treatment approaches used, etc.).

Occupational therapy assistants (certified or not) may or may not have a DOH approval letter and still work for EI agencies and provide services. This is possible because COTAs/OTAs need to be employed by the agency; they also require supervision.

For other FAQs, you may check out the NYS Department of Health website.

DOH Re-approval process

Attention all Early Intervention providers:

The New York State Department of Health, Bureau of Early Intervention is in the process of updating its approved provider database. Early this year, it has started mailing out letters with an enclosed postcard for you to verify your continued interest to remain an approved EI individual provider. I got mine yesterday. I noticed that I got assigned an EI ID # as well. It is important to address this correspondence in a timely manner to ensure that your information in the DOH database remains current. It has been affirmed that a new re-approval process is imminent.

If you have changed address and have not notified the Department of Health, chances are you may miss receiving this letter.

If you have any questions, the contact person designated by EI for this purpose is:
Diana Plunkett
518-473-7016, press 1, then 4

Open Houses

The agency that I work for, Personal Touch Early Intervention Program, will have a series of Open Houses and training session on Effective Early Intervention Documentation. There is no cost to attend the training, which will arm clinicians with knowledge of mandates, proactive strategies, and appropriate ways to complete progress reports, session notes, and evaluations. In addition, gift certificates will also be given to therapists who bring other therapists. On-site interview will be done by the Human Resources department -- if you are interested to apply, bring your resume.

Open House kicks off in Queens (71-02 Park Avenue, Fresh Meadows, NY 11365), on May 7, 2008 5pm to 9pm.

May 14, 2008 5pm to 9pm
Bronx Office
2100 Bartow Avenue Ste 307
Bronx, NY 10475
RSVP to Jacqueline @ 718-994-9278 ext 223

May 21, 2008 5pm to 9pm
Brooklyn Office
2701 Emmons Avenue
Brooklyn, NY 11235
RSVP to Gaudy @ 718-368-6291 ext 377

Focus on Autism

More and more children are now referred early to EI and diagnosed with PDD or Autism. The increasing prevalence of this disorder has been alarming that it's considered an epidemic. It is the fastest-growing serious developmental disability in the world. We tackle this problem daily in our work.

April 2, Wednesday, is World Autism Awareness Day (WAAS) as designated by the United Nations General Assembly. Let's do our share by passing on this information to family, friends, relatives, colleagues, and to everyone we know. Yes, to everyone.

There numerous walks around the country that have been organized by Toys R Us, this year's (and last year's) national walk sponsor. The flyers in all of their stores not only generate funds for Autism Speaks, but also raise public awareness in an enormous kind of way. Imagine the number of people who go in and out of this store every single day, and who start to ask about or find out what Autism is. That's a big deal! As a person who gets to work with children afflicted with this disorder, I am immensely pleased that we are getting this support.

Can't join the walk? Do a virtual walk instead. Or pass this brochure around. Or join the US Autism and Asperger Association or Autism Today. Just do something.

Putting Early Intervention on the Spot

Welcome to this blog! EI (or Early Intervention) On The S.P.O.T. will not only reflect what I do for a living but also promOTe, educate, and highlight the occupation that I so love -- Occupational Therapy. It's been more than 10 years now since I started working as an Occupational Therapist (OT), and to this day, I can say that I am still learning and I am still growing professionally. I continue to love what I do, and I am grateful to be in a helping, health profession.

There are a myriad of topics about early intervention (and related services) that will be discussed and posted in this blog. 'will tackle issues regarding professional isolation, new gadgets for clinicians out in the field, FAP (family as partners), documentation, engaging difficult families, amazing stories about children that we service, our daily grunts and woes about the job, job hunting, and so on. Feel free to chime in, share or compare notes, or email me about events (and/or courses) that are related to EI . Or link up your blog.

See you around...