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08-27-2006, 06:12 PM | #1 | ||
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Hydrocephalus: All You Ever Wanted or Needed to Know, for the Beginner to the Seasoned Veteran
I. Hydrocephalus 101: Types, Causes, and Other Classic Questions Answered A. Communicating? Non-Communicating? What’s the Diff? 1. Types of Communicating Hydrocephalus 2. Types of Non-Communicating Hydrocephalus 3. The “Diff” and Why it Matters B. How’d I Get This Thing? What Does It Mean For Me or My Child? 1. Causes of Various Types of Communicating Hydrocephalus a. Infections b. Too Much CSF? c. Everything Else 2. Causes of Various Types of Non-Communicating Hydrocephalus a. Congenital causes 1. Malformations of the brain 2. Congenital cysts and tumors b. Acquired causes 1. Injuries 2. Stroke 3. Intraventricular Hemorrhage 4. Infections II. This Thing Inside My Head: All About Shunts, from A to Z A. Pressure valves and what they mean B. Programmable? Non-Programmable? How to Know? C. What’s in a name: Knowing the brand name of your shunt and why it matters III. Do I Have to Have a Shunt? A. Third Ven-somethingorother: Third Ventriculostomy for the selected few B. Isn’t There a Pill? (Well…Sorta) C. Other Alternative Treatments IV. The First 20 Questions to ask the Neurosurgeon V. Shunt Surgery: Everything You Should Know as a Parent or Patient A. Getting Ready B. The Big Day C. Recovery VI. Shunt Revisions: All You Need to Know: “Treatment” vs. “Cure” A. “You Mean I’ll Need to Do This Again? Shunt Revisions: Signs and Symptoms B. Moving Forward—Again C. Complications 1. Infection 2. Catheter Migration 3. Pseudocyst VII. Preemies with Hydrocephalus VIII. Prenatal Diagnosis IX. Seizures, Migraines, and Other Annoyances That Can Accompany Hydrocephalus A. Seizures 1. Absence seizures 2. Simple Partial seizures 3. Complex Partial seizures 4. Grand Mal seizures 5. Other seizure types B. Migraines C. Ataxia and Balance Issues D. Fine and Gross Motor Deficits E. Cerebral Palsy F. Slit/Non-compliant Ventricles X. Vision Issues Associated with Hydrocephalus XI. What Can I Do? What Can I Not Do? A. The importance of taking care of yourself B. Know your limits, ‘cause we’re all different in our own way C. To live in fear is not living! XII. Talking to Friends and Family About Hydrocephalus A. So many questions, so little time: A crash course for loved ones B. Where to turn when they “don’t get it” C. What family and friends can do to help XIII. When People Around You “Don’t Get It” XIV. IFSPs, EIPs, IEPs, 504s, and other keys to education and services A. Neuropsychological tests and other ways to determine weak areas in children with hydrocephalus B. Common learning issues associated with pediatric hydrocephalus C. What type of educational help does my child need? D. 504 Plans: When you just need that extra bit of help XV. Adult Onset Hydrocephalus A. I’m 35 years old! How could I have this now? All About SHYMA (Discuss “Idiopathic”) B. My dad was just diagnosed with this. I thought only babies had it! NPH 101 XVI. Growing Up with Hydrocephalus A. Can I drive? B. I want to go to college, but… 1. Finding the right school 2. The ADA, scholarships, and other help XVII. Grownups with Hydrocephalus: Making Your Way in the World A. Facing the Real World: Employment B. Insurance C. Dating, Intimacy, and Marriage XVIII. Making a Family A. Q + A on Pregnancy with Hydrocephalus B. Labor and Delivery: What every mom with hydrocephalus should know C. Being Mom or Dad with Hydrocephalus 1. Surgery, Seizures, or Migraines when you have a little one 2. When your child has a medical problem 3. Taking care of yourself and why you must put yourself first D. Telling Your Kids About Your Hydrocephalus 1. Preschoolers 2. School-aged children 3. Junior high and high school children E. Your Spouse and Your Hydrocephalus XIX: “But You Don’t Look Sick…” A. Educating society about hydrocephalus as a chronic health condition B. Dispelling the Invalid Mentality and Striking a Balance XX: When a Sibling Has Hydrocephalus XXI: “We Were Told Hydrocephalus Wasn’t Genetic, But…”: X-linked Hydrocephalus XXII. What We Still Don‘t Know XXIII: Tying It All Together |
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