01-22-2010

So you just found out your Child has Aicardi’s Syndrome?

Although you love your child, this may be a shocker for you and may or may not be unexpected. Things are going to seem, or even be, overwhelming for awhile. You are going to grieve. With all the new and sudden changes in your life (doctor’s appointment’s ect) there isn’t even a moment to let you breathe. There seems so much to do and you are not only unsure what is needed or what to ask for, you don’t even know where to start.

The consensus is that the first year is the hardest. In one year, you will get a crash course in epilepsy, seizure medications, developmental delay programs, and more. The first year may be adrenaline-charged and/or a blur for your family. We have compiled this form for new parents of Aicardi’s children, to help you on in the process. There is no right or wrong way to go about it. Nor is there a right or wrong way in how soon you start the process.

There are many processes and steps, and they are all different depending on the state you are in. Again, this is only a guideline of things you can look into:

Applications
This often (along with doctor’s appointments) can be the most overwhelming of all. It is all state or program dependant.

Infant and toddler early programs –Many children with special needs get services and therapies they need through the school system, but if your child is younger than school-age, you can still find assistance. Most states offer some form of "early intervention" program that offers therapy -- sometimes in groups, sometimes individually in your home -- at little or no cost. And even day care programs can sometimes be configured to meet your child's special needs. in Washington it is called ITEP (Infant Toddler Early intervention program). I recommend doing this first and foremost.

Medicaid – Pays for medical insurance. Most states have waiver programs, but they vary a lot state to state. Not only that, but year to year programs change. One mother stated “ The Washington Medicaid program looks very different from ours, and ours looks a bit different today than it looked 8 years ago when we started down this road.” Each state different on rules and regulations. Often income dependant, but some states offer a Medicaid waiver depending on physical disabilities.

Social Security – monthly income. Each state different on rules and regulations. Income dependant, do not know of a waiver.

Exceptional Family Members Program (EFMP - Military specific) – The Exceptional Family Member Program (EFMP) is based on Public Law 94-142 which entitles handicapped children to free education and all medically related services in pursuit of education. The EFMP includes all family members with special medical and educational needs.

Soldiers enroll through their local Army medical treatment facility. The military sponsor and the attending medical or educational specialist complete enrollment forms. The completed forms are forwarded to the regional EFMP team to review and forward this information to PERSCOM. Exceptional Family Member enrollment needs to be reviewed at least every three years.

Extended Care Health Options (ECHO - Military specific) - This new program will continue to deliver financial assistance to active duty family members who have a qualifying condition as defined by law. It will also continue to offer an integrated set of services and supplies that supplement the basic TRICARE program options

Therapies
You may fight to get your child therapy in school, drive endless miles to reach therapists' offices, perform therapeutic activities at home, or research the latest cutting-edge techniques – One thing is for sure, therapies are often one element you can provide to your child that could make the difference in their development. In most cases, therapies are set up by the Infant Toddler program, see your case worker to see what may be the best program for your child. Many families do not just one, but as many therapies as they can for their child.

Physical Therapy (PT) - is a health care profession that provides treatment to individuals to develop, maintain and restore maximum movement and function throughout life. (learning to crawl, walk, ect.)

Occupational Therapy (OT) - uses meaningful and purposeful occupations to promote health. These can be work related activities to leisure activities. (learning to grasp a spoon and feed oneself)

Vision Therapy (VT) -. Vision therapy is like physical therapy for the entire visual system, including the eyes and the parts of the brain that control vision. Vision therapy is a customized program of visual activities designed to correct certain vision problems and/or improve visual skills (Unlike eyeglasses and contact lenses, which simply compensate for vision problems, or eye surgery that alters the anatomy of the eye or surrounding muscles, vision therapy aims to "teach" the visual system to correct itself.)

Speech Therapy - Speech-language therapy is the treatment with speech and/or language disorders. A speech disorder refers to a problem with the actual production of sounds (and in some case will help with language such as sign language or learning the mouth by putting object in the mouth to encourage the use of the tongue). If your child is eating well, chances are these doctor is not necessary until your baby starts to communicate.

Additional Therapies
often not covered by insurance (always check your insurance first, and sometimes it all depends on how your doctor writes the script to get insurance to pay it.) These therapies are often set up by the parent.

Anat Baniel/Feldenkrais - is a supportive therapy that accentuates personal awareness of your body's mobility patterns and its fixed purpose is to assist you to re-learn / supplant old habits with more proficient ones.

Cranial sacral and alignment work - Cranial Sacral Therapy seeks to restore the natural rhythmic movement found between the bones of the skull. It does the same for the movements of the sacrum. The purpose of this is to aid the circulation of the cerebrospinal fluid throughout the central nervous system.

Hippotherapy - therapeutic horseback riding program for physically disabled children

Music Therapy – Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.

Swim Therapy - A pool is a great place to work on strengthening muscles in a free and weightless environment. (some physical and Occupational therapists utilize swim therapy)

Tests:

Some initial tests you can look into for your child or ask the doctor about.

MRI – Magnetic resonance imaging (MRI), or nuclear magnetic resonance imaging (NMRI), is primarily a medical imaging technique most commonly used in radiology to visualize detailed internal structure and limited function of the body. MRI provides much greater contrast between the different soft tissues of the body than computed tomography (CT) does, making it especially useful in neurological (brain) imaging. This test is often done before the Aicardi’s diagnosis is given, and repeated every 3-6 months for the first year to see if there is any changes (often to see if cysts are enlarging).

Blood Tests – Blood tests are used to determine and biochemical states, such as disease, mineral content, drug effectiveness, and organ function. Aicardi’s children are most often tested when starting a new drug and the amount of blood test is determined by the drug.
EEG - Electroencephalography (EEG) is the recording of electrical activity along the scalp produced by the firing of neurons within the brain.[1] In clinical contexts, EEG refers to the recording of the brain's spontaneous electrical activity over a short period of time, usually 20–40 minutes, as recorded from multiple electrodes placed on the scalp. This test is often done before the Aicardi’s diagnosis is given, and repeated every 3-6 months for the first year to see if there is any changes (often to see if cysts medications are assisting in controlling the seizures or to see if seizures have changed). EEGs also help in identifying specific seizures a child is experiencing.

ERG - Electroretinography is an eye test used to detect abnormal function of the retina (the light-detecting portion of the eye). Specifically, in this test, the light-sensitive cells of the eye, the rods and cones, and their connecting ganglion cells in the retina are examined. During the test, an electrode is placed on the cornea (at the front of the eye) to measure the electrical responses to light of the cells that sense light in the retina at the back of the eye. These cells are called the rods and cones. A test for vision loss after starting Vigabitrin – Please note, not all doctors will opt for this test.
X-Ray – To check for any Spina bifida (Latin: "split spine") is a developmental birth defect caused by the incomplete closure of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain infused and open. If the opening is large enough, this allows a portion of the spinal cord to stick out through the opening in the bones. There may or may not be a fluid filled sac surrounding the spinal cord. And spinal X-ray will help determine if you are in need of an Orthopedist by checking for vertebral malformations or early signs of scoliosis.

Doctors you may visit with your Child’s diagnosis:

Neurologist – Usually given to you before you leave the hospital, and most often the one delivering the diagnosis. The Neurologist is who specializes is brain and brain activity. You will see once every 3 months to start, and it will eventually go down to once every 6 months to one year after 2 years of age. (Neurologist dependant- may be more or less)

Ophthalmologist - The term ophthalmologist is an eye specialist for medical and surgical problems. Since ophthalmologists perform operations on eyes, they are considered to be both a surgical and medical specialty. Usually seen once or twice a year, unless a child is taking Vigabitrin (Sabril, which could up it to once every three months) . There are many vision centers, such as Casey Eye Institute or Lekotek – Look for one in your local area.

Endocrinologist - Endocrinology is concerned with the study of the biosynthesis, storage, chemistry, and physiological function of hormones and with the cells of the endocrine glands and tissues that secrete them. You may see this doctor if your child is missing their pituitary gland for instance.
Gastroenterologist - A gastroenterologist has a particular interest in diseases digestive tract. To become proficient in the treatment and management of these conditions, a gastroenterologist must undergo training in both internal medicine and advanced training in problems of the digestive tract. Usually only seen in instances of blockage or back-up.
Gastrointestinal Reflux Specialist - Gastroesophageal reflux disease, commonly referred to as GERD or acid reflux, is a condition in which the liquid content of the stomach regurgitates (backs up or refluxes) into the esophagus. Seen if your Child has issues with GERD. If your child is eating well, chances are these doctor is not necessary at the moment.
Orthopedist: An orthopedic surgeon, orthopaedics being the branch of surgery broadly concerned with the skeletal system (bones). This doctor assists with scoliosis and curvature of the spine.
Some random Questions I have seen asked:
What will my child be like? How far will my child develop? Will my child regress?

The most important thing to note is that the brain is an amazing thing. EVERY child with Aicardi’s will be unique. Although they may have some similarities, each child will have different experiences and stories. There are some children who are more medically intense, with severe scoliosis, serious hip issues, feeding tubes, tracheotomies, as well as respiratory problems. Some have few medical issues but are burdened with mild to intense behavioral issues. Some Children with Aicardi’s can even walk and talk and are considered to be higher functioning.

One medical issue in common among these children is seizures and constipation. Depending how much the seizures are able to be controlled, sometimes depends on the severity. However, this is not always the case. Aicardi’s syndrome affects your child’s health and development uniquely, so it’s hard to help you form a prognosis of what end of the spectrum your child will be on when it comes to developing. Only time will tell.

How did you find the right doctor to deal with your child's special needs?

This can be done several ways, but usually it is through the hospital, your child’s pediatrician or even eventually through word of mouth from other parents with special-needs at your child’s school or even sitting in waiting rooms at therapy/hospitals/doctors' offices.

Do you raise your child any differently than you do your other kids?

This is subjective. Raise your child the way you think is best. While some may have somewhat different expectations for their special needs kid, others may treat a child as they do any of their children. You will find what's right and what works best for your family.

As a parent, how do you cope day to day?

Again, another subjective questions. I will say myself I needed counseling. I am very lucky to have a great spouse. My husband and I rely on each other tremendously. We read a book when we first found out about our daughter’s diagnosis; Married with Special-needs Children. This book taught us many things, but mostly to be kind to one another. We never blame each other or take out our frustrations on each other.

This book helped, but there are so many resources out there; counseling, medications, sleep aides, friends, family, and more. Find a support group, Grief comes as small ripples in a pond and sometimes like a tidal wave, bringing an ocean of grief. You may beat yourself up, blame yourself, feel helpless, among other feelings on the emotional spectrum. The most important thing is to find what works best for you, and do not be afraid to ask for help.

Also - Find out if there is a parent-to-parent program in your community. Local parent-to-parent programs provide support to parents of children with special needs.

What are your recommendations for doctor’s appointments?

As one parent stated ‘The problem is that when you're overloaded with a diagnosis, seizures, and a new baby, even the most proactive parents are going to miss some stuff.”

It is important to start a notebook or what some may term as a 'child rap sheet' is when you're visiting new doctors for the first time. When the child is first diagnosed, write everything down, you’d be surprised at how hard it is to remember what the doctor said during such a life-altering discussion. Writing down all your questions before, during, and in-between doctor’s visits, so you won’t wonder what it was you meant to ask. Track seizures times and what they look like. Don’t hesitate or be afraid to take video, so you can show (instead of trying to put it into words) how the seizures have changed.

My daughter’s book is broken down into chapters to include Seizures, Doctor’s notes, Medications, and Contact numbers of all her doctors, therapists, and government agencies I am working applications with.

Will I need special Equipment?

Special equipment will vary child by child. Some children need little to no equipment, while others need extensive equipment.

Some examples of equipment you may need:
A Special Stroller
A Safer Bed
A Special high-chair
A Special bath-chair
A Special Carseat

Here is a basic example of a letter for your doctor or therapist provided by Erin Lindermuth:

A Basic Outline for a Letter of Necessity
1. Introduce the patient and how long she or he has been in the care of the doctor or facility. Describe his or her condition and detail the special needs that are a consequence of the condition (i.e. lack of control; no recognition of danger in rolling or falling out of bed; entanglement in side rails if a "hospital/institutional" bed is currently in use and the potential or documented injury as a result; potential of entrapment or suffocation due to the gaps around the mattress on either side or at the ends—especially the corners.)
2. Explain how the bed or crib currently being used fails to protect the patient and the consequence of falling will result in bodily harm. Include, if applicable, how the patient has the capacity to climb.
3. Perhaps address the psychological issues regarding the importance to see out and be seen/acknowledged, and/or not be trapped in a bed with an enclosure over the top.
4. Recommend the bed model that addresses each of the concerns—with specific requirements such as full safety rails, or specific height required for safety (where the double safety rail and mattress height adjustability of the SleepSafer model would accommodate the needs), or the necessity of articulation to raise the head or feet of the patient in order to feed, medicate, or provide mobility.
5. The imperative that the specific needs be addressed and prescribe the appropriate model (SleepSafe, Sleep Safe Plus, Sleep Safe HiLo, Sleep Safe 2, Sleep Safe 2 Plus, Sleep Safe 2 Hi Lo, SleepSafer, SleepSafer Plus, Sleep Safer Hi Lo, SleepSafe 2 Youth Bed or Sleep Safer Youth).
We appreciate the opportunity to work with you and help find a way to work through the process. Please feel free to call us if we can be of further assistance, toll-free, at 866-852-2337 from 8 a.m. to 5 p.m. EST.
*Visit the web to view “Hospital Bed System Dimensional & Assessment Guidance to Reduce Entrapment - Guidance for Industry and FDA Staff” @ http://www.fda. gov/cdrh/ beds/guidance/ 1537.html (published March 2006)
**Sleep Safe Beds patented design exceed these new safety guidelines, virtually eliminating entrapment issues**

Helpful Websites:

1. A somewhat outdated (2001), Survey on Health Care Services for Children with Special Health CareNeeds provided by Pam Drake:
http://www.cdc. gov/nchs/ data/slaits/ Comparing_ States_CSHCNA. pdf

2. www.seizuretracker.com - Lisa Moss, Co-founder of SeizureTracker.com received an award for her website. It tracks seizures, doctor’s appointments, and more. A very neat site. I downloaded my contacts, medicines, and seizure tracker documents from this website.

3. General Waiver information can be found here. It is out of date. Provided by Ande Glasmacher http://www.geocities.com/HotSprings/Villa/1029/medicaid.html

4. Equipment Links:

http://www.patemm. com/product. html - compact diaper changing pads/diaper bag all in one.

http://stores. ebay.com/ SPECIAL-NEEDS- BOUTIQUE- AND-MORE

I tried to attach the word file, but it will not let me unless it is a different file. If you would like this emailed to you, please email me at Pegasusrdr@gmail.com or maryaliciaverdecchia@yahoo.com

Thanks to all the AS familes who helped me compile this document. Hope it benefits the newly diagnosed families on your new journey.