Friday, October 13, 2006

Emily

Below you will find what has taken up a big chunk of my time over the past couple of days. We have finally been in contact with a neuro-psych recommended by Emily's neurologist who asked me to write a complete profile of Emily, including medical history and a description of our concerns etc.


Birth History:

Emily was 8 lbs 5 oz at birth. My pregnancy with Emily was un-complicated and delivery was vaginal at Jordan Hospital in Plymouth, MA. Apgar scores were 9 at one minute and 10 at five minutes. Emily was admitted to the normal newborn nursery and discharged with me.

Past Medical History:

Emily receives her primary medical care from Dr. Neal Bornstein in Lakeville, MA. Emily has met and/or exceeded all expected developmental milestones. Emily was diagnosed with Epilepsy in July of 2004 and is followed by neurologist Dr. David Coulter at Children's Hospital in Boston. Emily experiences generalized tonic clonic seizures, although she has been seizure free for two years. An EEG was conducted in July of 2004 which was abnormal and showed seizure activity in many areas of her brain. An MRI was also done and the results of the scan were abnormal showing what Dr. Coulter described as a “Neuron Migration Disorder.” The results looked similar to a child with Tuberous Sclerosis so genetic testing was conducted. Analysis of Emily's TSC I and TSC II genes showed one or more DNA sequences that were of unknown clinical significance. As a result of her abnormal test results, Dr. Coulter has diagnosed her with a ”Tuberous Sclerosis-like” condition. Emily takes 125 mgs of Lamictal for seizure control and mood stabilization. Emily was also diagnosed with ADHD-inattentive type in March of 2005 by Dr. Coulter. Emily is also seen by Asthma and Allergy Specialist Dr. Donald Accetta in taunton, MA. She is allergic to Birch and Oak trees, grass, ragweed, mites, cats and dogs. She had a very small reaction to peanuts and soy when skin testing was done. Emily also has an allergy to the antibiotic, ”Rocephin.”

Family History of Note:

Emily has two younger sisters, Katherine, age 6 and in first grade and Julia, age 27 months.

Katherine is an asthmatic and is treated with a QVAR inhaler. She also has an Albuterol inhaler for emergency use only. Katherine was diagnosed at the age of three with Ketotic Hypoglycemia and is treated for this by having three meals and three snacks per day. She appears to be outgrowing this condition. Presently, Katherine has no other medical, educational or other concerns. Katherine recieves primary medical care form Dr. Neal Bornstein in Lakeville, MA and is followed by Dr. Donald Accetta for treatment of Ashtma. In the past, she has been followed by endocrinolgist Dr. Stuart Brink for consultation regarding Ketotic Hypoglycemia.

Julia has been receiving both Early Intervention and supplemental outside services for Physical , Speech and Occupational Therapy for about 15 months. At present, Julia' s gross motor delay is about 7-8 months, speech is at about 3-4 months and continued Occupational Therapy is helping her overcome sensory issues regarding food textures. Due to Emily's history, genetic testing for Tuberous Sclerosis as well as an MRI and EEG were conducted for Julia. Genetic and MRI testing came back negative for abnormalities. Julia's EEG (which was sleep deprived and lasted for about 20 minutes) came back abnormal, showing a single mid-line parietal spike. Julia was admitted to Children's Hospital for a two day, overnight EEG, the results of which were normal. However, she will be having an ambulatory EEG beginning on October 23rd. Julia's only diagnosis currently is Hypotonia (low muscle tone). Julia receives her primary medical care from Dr. Neil Bornstein in Lakeville, MA and is followed by developmental pediatrician Dr, Joann Bier at Children's Hospital in Boston.

Emily's Education History:

Emily does well academically however, due to poor time management and organizational skills, as well as some difficulties with short term memory and impulsivity, she has been on a “504 plan” since March of 2005. Her 504 Plan calls for preferential seating, frequent verbal ques when transitioning from one activity to the next, reminders to stay focused and on task, and reminders to bring important books/homework/papers home.

Social and Sensory:

Emily is a very caring and considerate child. She is sensitive to the needs of her peers and in most cases, has appropriate behavior in social situations. She does need to be reminded once in a while about “personal space boundaries” as she is occasionally overly “touchy feely” with others. Emily is very in tune with her surroundings. She is highly aware of changes in lighting, temperature etc. If these things displease her, she may react negatively.

Other Concerns:

Emily has some concerns with organizational and attentional issues, as noted in the education portion of this report. She has poor organizational and planning skills, difficultly with sustained attention and concentration, and has trouble breaking large tasks in to manageable chunks. Emily also displays on occasion inability to think before she acts. She shows emotion without restraint most of the time. Emily has a difficult time waiting for things and is usually looking for the immediate but small payoff in some situations. Emily has poor short term memory and forgets routine things like homework, after school activities and other daily responsibilities. Emily reacts intensely in either a positive or negative display of emotion in most situations. In fits of rage she has destroyed property, lied, and hurt others (hit her sister etc).

Strengths:

Emily has the ability to detect essential details in situations. She has an extensive vocabulary and is an avid reader. She has a very creative imagination and can create stories and express them verbally with no problem. Emily appreciates obviously silly and absurd humor and is quite humorous herself at times. Emily is very caring about family, friends and even strangers. Emily is a very helpful child and thrives on the positive feedback she gets when she has done well.

Future Hopes:

We hope that Emily will keep her enthusiasm for learning and discovering new things. We hope that through testing and perhaps continued behavioral therapy at home or otherwise, Emily will be provided with the opportunity to improve on her areas of need, and continue to enhance and employ her many strengths and positive attributes.


Whew.

You know as much as I have said that I don't understand how Emily operates, I have to say, I sure do "know" her.

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