What should schools be on the look out for when a student with Marfan's Syndrome enrolls in kinergarten?
Person's Gender: Female
I am a special educator preparing to receive a female child with Marfan's Syndrome to our campus; an elementary public school. We have a LVN school nurse. Most recent medical info (4-24-12) indicates eye surgery in '08, congenital heart disease & murmur, chronic serous otitis media, scoliosis (unknown degree), however; obj. exam. during well child visit everything was normal. What questions should we ask the family & what are the educational implications of which we should be aware?
Hi, thanks for this interesting question and for using Just Answer. I'm a pediatric cardiologist and have a number of patients with Marfan Syndrome. Although the degree of problems related to Marfans can vary from mild to more severe between children, most do very well. There is no acute problem typically, and she shouldn't be at risk for sudden cardiac arrest or any issue you'll have to deal with her at school.
Do you know if she's on a medication such as Losartan or Atenolol (beta blockers)?
If she is, then side effects from those medications (ie low blood pressure, dizziness, fainting) are possible but again, not that common. She'll always need to stay well hydrated, especially for gym class and field trips.
So besides asking her family about her medications, ask them what her doctors planned for her care. I suspect she'll just have annual or semi-annual cardiology and ophthalmology checkups. If her scoliosis is more severe, she'll be seeing the orthopedist more frequently and that doctor may have more specific instructions and restrictions for her sports and gym participation than the other doctors.
She should have no intellectual limitations. Marfan's does not affect the brain.
Bigger issues might be how her classmates interact with her. She'll be taller than all of them, likely, and have longer fingers/toes/arms and probably be wearing thicker glasses. Hopefully there are no bullies at her school!
I hope I answered your questions. When you check back, please let me know if you have other questions or need clarification of what I said. If you are satisfied, please click "Accept" and rate my response to you. Thank you for using Just Answer! Dr. Rich B
Thanks so much. Of course we at school, especially in special education, are concerned with brain function or malfunction, and we are delighted to know that we can expect there is no affect of the brain and expectations for intellectual development can be at the same level as all nondisabled children. This has been a big help & my staff will appreciate that it came from a pediatric cardiologist who has and is treating patients with Marfan Syndrome.
Pamala K, Special Education Administrator
Pediatrician and pediatric cardiologist for almost 20 years.