Parent Connection is meant to offer you valuable information that you might find helpful in advocating for your child’s health.
This page will continue to evolve over time, so make sure to check back. If you have any questions or suggestions about what should be included on this page, please feel free to contact us.
What is Chiari malformation?
What is syringomyelia?
What is Ehlers-Danlos syndrome (EDS)?
What are some other related disorders?
The first and foremost concern for parents is just how much their child is suffering. It can always help for a child to have visuals in order to properly verbalize their pain. Please reference the Wong-Baker FACES(R) scale to help you make important decisions about your child’s treatment. And remember to always consult with your child’s physician before going through with any treatment plan.
For clarification of the pain scale, please visit The Wong-Baker FACES website.
If you are preparing for your child’s clinic appointment with a neurosurgeon and you’re feeling overwhelmed, take a look at this Clinic Prep Packet, courtesy of Dr. Laila Mohammad.
Many parents have questions about how Chiari malformation, syringomyelia, EDS and other related disorders might affect their child’s experience at school. Along with several partners, Bobby Jones CSF created Chiari@School to help parents navigate the educational system and ensure that their child never falls behind— all while having a more positive learning experience!
Chiari@School will provide information on IEP/504 plans, tips from other parents, and hand-outs for educators and classmates. All materials will be developed or curated by individuals qualified in relevant fields, including school nurses, educators, lawyers and medical professionals.
Chiari and syringomyelia are not fun– and they can be especially hard on kids who can’t always play with their friends or are having trouble keeping up at school between doctors appointments, recovery and more. Watch our friend Erin talk about what she went through, how she handled school after her big surgery and how she made some friends along the way:
It was once thought that Chiari malformation only presented with physical symptoms like headaches, nausea and more. But in the past decade or so, many thought leaders in this field have started collecting scientific evidence that Chiari may cause significant problems with cognition (“brain fog”, poor memory) and mood (irritability).
Dr. Petra Klinge gave a brief presentation on one of her Chiari patients success stories. Her patient had been having trouble focusing at school, and actually saw her reading and math skills improve after Chiari decompression surgery!
Sometimes, your child needs a little help to stay on top of their education or some more direction in their activities and schoolwork. But finding help should never be like pulling teeth! Below are some helpful resources to get you started on finding help with IEPs and 504s as well as “return to school” recommendations to talk about with your child’s doctor!
Return to School and Physical Education. Your child’s doctor may have some specific instructions after a surgery. If you’re feeling uneasy, print out this handy sheet from the American Academy of Pediatrics and talk through it with your child’s doctor to find out what they can or maybe can not do. Everyone is different and no two of these checklists will look the same!
Individuals with Disabilities Education Act (IDEA) Parent Guide. This is a super comprehensive guide that explains how the law works in most states, how to determine whether your child has a disability, what is new with the law since its update in 2004, what questions you need to ask to advocate for your child, and what other resources are available.
Guide to the Individualized Education Program (IEP). This is a great “IEP 101” for parents looking for guidance!
Building the Legacy: IDEA 2004 Update. This information from the U.S. Dept of Education has lots of content about updates in the law and best practices for IEPs.
Section 504: Protecting Students with Disabilities. The Dept of Education also has some materials and FAQ on Section 504 of the Rehabilitation Act of 1973 (since amended), which is meant to protect students with disabilities.
You are always welcome to join our online support community or participate in live (virtual and in-person) support meetings which are updated on our Events page throughout the year.
Sometimes you need more than information. If you are in need of specific resources that BJCSF cannot provide, we can try and connect you to local social services and organizations nearby who may be able to help. (Please note: BJCSF does not offer financial or social services assistance directly to individuals, per our IRS designation. But we are happy to direct you to other resources who may be able to help!)
Since Chiari, syringomyelia and related disorders may sometimes involve ongoing follow-up into adulthood, it is important for parents to consider whether or not their child can continue to be seen by their pediatric specialists. Some pediatric neurosurgeons, for example, operate at freestanding children’s hospitals and many are not allowed by hospital policy to see patients past a certain age. This can cause anxiety in patients and their parents as they get closer and closer to those age cutoffs!
To prepare for the eventual transition to adulthood and to help your child prepare to manage their own health care when they are adults, it is important to start thinking about transitioning care as early as 12-13 years old.
Visit GotTransition for details. GotTransition is a national resource established to help patients successfully transition their health care from pediatric to adult physicians, depending on that patient’s needs. You can review their resources here.
Talk to your child’s provider. Sometimes, your pediatric specialist will work directly within the same health system, and the transition to adult care can be more seamless. Some pediatric specialists are able to continue to see your child well into adulthood, too!
Ask about transition assessments. Your pediatric physician may have internal assessments that they can do to determine how prepared you and your child are to transition to adult care. Feel free to ask about them!
You can also take this quiz (for parents) or have your child take this quiz (for youths/young adults) from GotTransition to self-assess transition readiness and determine what steps you may want to take to prepare for the future.
*Please note, that these are external links that are not regularly checked by Bobby Jones CSF.
CHIARI & COLLEGE
PARENT SUPPORT
MEDICAL
Links Disclaimer: Links of interest to other websites from this location are provided as an added value by the Bobby Jones Chiari & Syringomyelia Foundation, Inc. By accessing the links from this site, you will be leaving Bobby Jones CFS’s web site. Although we have reviewed the information on these sites prior to creating the links, we are not responsible for the content of the sites. Information on these website pages may become dated or change without notice, and we do not represent or warrant the information contained on these linked pages as complete or accurate. Please be advised that you will no longer be subject to, or under the protection of, the privacy and security policies of Bobby Jones CSF’s website. We encourage you to read and evaluate the privacy and security policies on the site you are entering which may be different from those of Bobby Jones CSF.
