Planning Your Fragile X Clinic Visit
By Jayne Dixon Weber
Why should you visit a Fragile X clinic?
Because you won’t hear, “Fragile what?”
If you’ve visited a clinic before but it’s been a while, you should consider a return visit. Following an initial visit, we recommend yearly follow-ups. Or, if you’re having issues with behavior, school, or therapies, or you want to get involved in clinical trials, we suggest you visit one in the near future.
If you’ve never visited a clinic, it will give you the opportunity to meet with a team of people who understand Fragile X and can provide guidance in many areas of raising your child (or children, family member, or other ward).
Visiting a clinic also keeps you involved and hands-on with what‘s going on in the Fragile X world, while at the same time keeping abreast of your child’s health needs.
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It’s still very important that you also have a family physician who can handle the everyday ailments of your child, but once you establish a relationship with a Fragile X doctor, they will become a resource for each other. It’s crucial that you, your child, your family doctor, and Fragile X doctor work together on specific issues regarding Fragile X.
Before You Call for an Appointment
Locate a Fragile X clinic↗
You will be happier with your visit and get more out of it if you take an active role in the process ahead of time. Before you call the clinic coordinator, think about the concerns you have for your child, what you would like to know more about, and what you hope to get out of the visit, and from there prepare a list of questions.
You’ll want to also ask about available evaluations and specialists. While every Fragile X clinic is set up a little differently, they all offer similar services. For example, some clinics conduct evaluations over two days, which requires at least an overnight visit. Others may require only several hours. Example evaluations may include:
- Genetic counseling
- Speech therapy
- Occupational therapy
- Physical therapy
- Behavioral therapies
Specialists may include:
- Social workers
If you’ll need to stay over one or more nights (or you want to turn it into a mini vacation) you’ll want to ask questions about lodging, transportation, and other resources and accommodations as needed. For example, if staying in the waiting room is difficult for your child, perhaps the staff can call you on your cell phone when they’re ready to see you so you can wait nearby.
Additionally, if you don’t have insurance, you’ll want to ask about alternative payment plans or opportunities to participate in research trials.
If you need help funding your travel, ask about the Fly With Me Fund and any other available grants to help with expenses related to my visit.
Questions to Ask Before Your Visit
With all this in mind, here are some questions to get you started:
- What does a typical schedule involve?
- In addition to seeing a medical doctor, what evaluations are offered and by whom?
- What other specialists are available?
- Can referrals be made to local providers in my area?
- After the evaluation, will the medical doctor be available to review and discuss the results that same day?
- Will each specialist be available or will the medical doctor review the findings of each specialist with me?
- When will a written evaluation/report be available, and will it consist of separate reports by each clinic specialist or one report?
- Can I request that the report be sent to my providers, teachers, therapists, etc.?
- Who will be available to interact with my local providers to make sure treatment recommendations are clarified, discussed, and implemented?
- What written or online materials are or will be available?
- Can you provide me with a list of state and local resources?
- Can you provide me with handouts or articles on Fragile X that I can take back to school personnel, doctors, and other providers?
- Will there be a possibility to participate in research?
- What kind of insurance does the clinic accept?
- Do you have recommendations for lodging facilities to meet my needs regarding price, proximity to the clinic, dining opportunities, etc., and do any of them offer discounts for those making hospital visits?
- What restaurants, grocery stores and other attractions are in the area?
- Is there an NFXF Community Support Network chapter or parent support group nearby, or other local families you could talk to about the area and about your visit to the clinic?
And before ending the call, ask the clinic coordinator one last question: Can you think of anything I haven’t thought of?
Before You Travel
Once you’ve made your appointment, be sure to think about the big picture and plan your visit accordingly, which most certainly includes preparing your child emotionally. This will be a huge change in routine, including:
- The clinic visit.
- A possible overnight stay and a second day at the clinic.
- The trip home.
- Readjusting back to your normal family routine.
For most families, this represents a major undertaking. See if you can build in some downtime during what can be a highly scheduled visit. If at all possible, find some time to visit a park, zoo, or museum, attend a sporting event, go swimming, or anything else your family likes to do.
During Your Visit
Your clinic visit is but one step in your family’s long-term education about Fragile X. Please know — and continue to remind yourself — that no question is silly or strange or unwelcome. If you’re wondering about something, it’s virtually certain that the very same question has occurred to many other people — and Fragile X professionals have probably heard it. Clinic staff are well-informed, trained, and compassionate, ready to answer (or find the answer to) any question you have. So please do ask! Questions to ask during the visit:
- Why does my child __________?
- What can or should I do in these situations?
- What can I expect from this type of therapy or medication?
- Is it wrong to _________?
What to Bring
The wait to be seen at a clinic varies, but in some instances it can be as long as three to six months, so you’ll want to be prepared.
Each clinic has an intake form for which you will likely need to be prepared with the following:
- Information about your immediate and extended family, including diagnoses of any — living or deceased — with developmental delays, behavioral disorders, neurological disorders (including late onset conditions), fertility issues, and any genetic testing that has been done.
- Photos of any family members who may have FXS.
- Information from baby books, scrapbooks, and journals that would note ages of developmental milestones, illnesses, medication (including any reactions), therapeutic interventions, etc.
- If your visit is for FXS: Bring genetic test results, medical or psychiatric records, psychological, speech and occupational therapy evaluations, and any other records from school or teachers.
- If your visit is for FXTAS: Bring MRI reports, neurological and/or psychiatric records, and any journal of symptoms and their progression.
- If your visit is for FXPOI: Bring records of medications, medical and menstrual/pregnancy histories, and any questions related to medical management or reproductive issues/options.
And for you and your child — unrelated to forms — think about also bringing:
- For you child: Favorite toys, puzzles, blankets, foods and other comfort items.
- For you: Books, music, laptop computers, tablet devices, and other enjoyable items for yourself. (Headphones in waiting rooms can come in very handy.)
After Your Visit
After your visit, most clinics will provide you with a written summary of all evaluations that took place, along with recommendations you can take back to your local doctor or school district.
Your visit should answer a lot of questions for you, and help you understand what your child needs as you transition through various stages and events.
We hear from families all the time about their clinic visits. Here’s some of what we typically hear from families following a clinic visit:
- It’s so comforting to talk with someone who understands my child.
- It’s so nice not to have to explain everything — again.
- I don’t have to make excuses or try to explain my child’s behavior.
- We are like family to [the doctors].
- With report in hand, my school takes me more seriously.
- I came home feeling re-energized.
If you have questions about planning your visit, please contact us, we’d be happy to provide further help. If you’d like a printable copy of this information, visit Info Series: Your In-Person Visit to a Fragile X Clinic.