Francine Blei, M.D.
John Ho, M.D.
I Like Myself
by Karen Beaumont and David Catrow
I’m Gonna Like Me: Letting Off A Little Self Esteem
by Jamie Lee Curtis
Spaghetti in a Hot Dog Bun
by Maria Dismondy and Kimberly Shaw Peterson
Happy to be Me!
By Christine Adams and Robert J. Butch
I Don’t Want to Be a Frog
by Mike Boldt
The Okay Book and It’s Okay to be Different
by Todd Parr
Buddy Booby’s Birthmark
by Donna and Evan Ducker
by Martha Griffin
by Don Freeman
by Julianne Moore
The Legend of Spookley the Square Pumpkin
by Joe Troiano
I Love You Because You’re You
by Liza Baker
ANESTHESIA FOR procedures
The anesthesiologist’s goal is to provide the safest possible care with attention to the psychological and emotional needs of the child and parents. All of our pediatric procedures are performed under the care of a board certified pediatric anesthesiologist. The exact method of anesthesia may vary from patient to patient and will be discussed prior to the procedure, when all questions will be answered. One parent may be present in the operating room as the child goes to sleep, and once the procedure is over, your child will be brought to the recovery room to allow you to be there as soon as possible.
DAILY ACTIVITIES/ ATHLETICS
We generally don’t believe in limiting your children’s activities due to the presence of a vascular malformation – we usually allow full activity, including athletics, “as tolerated.” The risk of causing bleeding or other damage during the normal range of activities is small.
After treatment, we often advise limiting activities for seven to ten days following the procedure, then resuming all activities “as tolerated.” Venous malformations which have been treated with sclerotherapy will generally require four to six weeks to resolve, however activity can be resumed well before that time.
Surgical procedures vary widely, but the recovery time from most of these procedures will be relatively short – prolonged recovery periods are rare. The attending surgeon will give specific postoperative instructions for each patient.
It is important to understand what your child is able to do and what activities should be avoided. Discuss this with your child’s physician or feel free to contact us directly for advice. When participating in sports, make certain your child wears protective gear (e.g. helmets, shin guards, etc.) and recognize their limits, if any. Encourage hydration with sports drinks (low sugar or sugar free, ideally) and taking time out if they feel tired. Swimming is an excellent sport, and many patients with vascular anomalies feel better when they swim. We have many young patients with AVMs who are not only active, but participate in competitive sports, dance, etc.
SCHOOL CLASSMATES/ PSYCHOLOGICAL ASPECTS OF AVM
Psychological aspects of having a vascular malformation can be challenging, due to physical differences and symptoms, which may cause children to become self conscious – e.g. body asymmetry, dental/teeth abnormalities, oozing of blood or lymph fluid, functional impairments (movement, speech, hearing), and/or pain.
Some of the goals of treatment are to improve function, aesthetics, and to ameliorate pain. Patients with vascular anomalies can face psychosocial challenges, which everyone handles differently. Understanding the condition is important, and will enable you to answer questions you may be asked, and prevent awkward interactions. Ageappropriate terminology and role‐playing scenarios (depicting situations where you/your child may be asked “what’s that”, etc.) can be empowering.
There are many “antibullying” programs in schools and communities. If you think your child is being bullied it is best to discuss this with your family, teachers and school counselor, rather than having the tension build.
When starting at a new school, make certain that the teachers are aware of and understand your child’s diagnosis. This will help “normalize” the situation and also define reasonable expectations.
While most patients can maintain a regular schedule, some patients require accommodations during all or part of the school year (e.g. after a procedure). It is important to know what your child can and cannot do. Discuss this with your child’s physician, and request a letter to document your needs. For example, a request for modified gym activities, an elevator pass, double set of books (to avoid carrying heavy books), extra time to move between classes, permission to keep the leg elevated during class, or other accommodations. In general, patients are encouraged to maintain a physically active program, as more problems may develop when sedentary.
For predictable periods of time when your child will not be able to attend classes (e.g. after surgery), arrange a home study program and for a home teacher. Some schools may enable you to “attend” class remotely (e.g. via Skype or other televised options).
If your child requires specific modifications and accommodations, there are laws, which mandate public schools to provide these services. This process requires documentation of medical conditions and specific evaluations. Speak to the school administration to identify how to access these provisions.
To further understand the relevant requirements for an Individualized Education Program (IEP) or Section 504 of the Rehabilitation Act of 1973, the resources below are informative: