Resources for Dysautonomia (autonomic disorders)
National Resources
One of the best national resources is www.dysautonomiainternational.org
If you would like to purchase a product listed below just click on the picture and it will take you to Amazon.
Wisconsin Resources
Froedert & The Medical College of WI (For Adults)
Dr. Thomas Chelimsky Neurologist 414-805-6196
Children’s Hospital of Wisconsin (For Children & Teens)
Dr. Gisela Chelimsky (Gastrologist) & Dr. Tom Chelimsky (Neurologist)
414-266-3690
*Please note they are very specialized doctors and therefore there may be a wait to get your first appointment. You will find this to be true of many doctors who know about or specialize in EDS or autonomic disorders since it’s so rare. I know it’s difficult to be patient but it’s worth it.
If you would like to purchase a product listed below just click on the picture and you will be taken to Amazon.
Book Recommendations
POTS Together We Stand: Riding the Waves of Dysautonomia by Jodi Epstein Ruhm
A fantastic resource for anyone who is or believes they are suffering from dysautonomia.
Resources for Hypermobility Ehlers-Danlos syndrome (hEDS)
National Resouces
One of the best national resources is www.ednf.org
Under the tab ‘Patient Support’ you will find a helpline, support group information and most importantly our on-line community which is under the tab ‘Message Board’. It is a safe place to share and get support on a whole host of topics.
Wisconsin Resources
Children’s Hospital of Wisconsin (they may not able to diagnose and work with Adults like they once did)
Marfan Syndrome Program and Connective Tissue Clinic
414-607-5280
*Lindsey Katzmark is the clinic’s nurse practitioner and she is a fantastic person to meet with and a great resource
Genetics
Dr. Ronald Basal 877-607-5280
*Please note these are very specialized doctors and there is a wait to get your first appointment. You will find this to be true of many doctors who know about or specialize in EDS since it’s so rare. I know it’s difficult to be patient but it’s worth it.
If you would like to purchase a product listed below just click on the picture and you will be taken to Amazon.
Book Recommendations
Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type by Brad Tinkle
I have read this book at least 3 times for different reasons, one of them being reading from the perspective of my son. This book also comes with me to new doctor appointments – as if Dr. Brad is there with me!
A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type): Bending without Breaking by Isobel Knight
I learned quite a bit reading this book written by Isobel, a fellow EDSer. She went above & beyond in her research.
Managing Ehlers-Danlos (Type III) – Hypermobility Syndrome by Isobel Knight
I bought copies of this book to give to my Pilates Instructor and my Physical Therapist to help them learn about EDS and how to treat me.
More recommendations to come! I have a few more to read thru! Stay tuned!
Resources for Sensory Processing Disorder
National Resources
One of the best national resources is http://www.spdfoundation.net
If you have a child who is under three years old and you think they have SPD it may be worth reaching out to your state or county’s birth-to-3 program.
Parents can make a referral to birth-to-3 programs!
If your child is older than three years old, the best profession to diagnose SPD is Occupational Therapists. One recommendation is to contact your health insurance to see who is in your network in your area. Another option is to work with your child’s school or school district.
Wisconsin Resources
Waukesha County Birth-to-3 Program
http://www.waukeshacounty.gov/BirthToThree
For Waukesha County Residents, a referral can be made via phone or fax. Please call the Department of Health and Human Services at 262-548-7212 from 8:00 a.m. to 4:30 p.m. Monday through Friday, excluding holidays For Waukesha County Residents, a referral can be made via phone or fax. Please call the Department of Health and Human Services at 262-548-7212 from 8:00 a.m. to 4:30 p.m. Monday through Friday, excluding holidays.
Milwaukee County Birth-to-3 Program
http://county.milwaukee.gov/DSD/Children-Services/Early-Intervention-B.htm
Referrals can be made from 8:00A.M. to 4:30P.M., Monday through Friday via:
Phone: (414) 289-6799 (English & Spanish)
Voicemail is available 24 hours per day, 7 days per week
Children’s Hospital of Wisconsin
Multiple locations Occupational Therapy 414-607-5280
http://www.chw.org/medical-care/physical-and-occupational-therapy/
New Berlin Therapies 2815 S. Mooreland Rd. New Berlin, WI 53151 262-782-9015
If you would like to purchase a product listed below just click on the image and it will take you to Amazon.
Book Recommendations
Sensational Kids: Hope and Help with Children with Sensory Processing Disorder by Lucy Jane Miller, Ph.D., OTR
I recommend starting with this one first if you have not read anything about SPD.
The Out-of-Sync Child Has Fun by Carol Stock Kranowitz, MA
Our Birth-To-Lead Team Lead/Educator highly recommends this book to families!
The Out-of-Sync Child by Carol Stock Kranowitz, MA
Another great book and resource written by Carol who is one of the experts on SPD!
Growing an In-Sync Child by Carol Kranowitz and Joye Newman
Yes, you guess it, another great resource by Carol!
Resources for Lymphedema & Chronic Swelling
With proper treatment, lymphedema may be prevented or controlled. Depending on severity and cause, a treatment plan is developed for each person’s specific needs. Research shows that appropriate care delivered by an expert with specialty training in lymphedema therapy can dramatically decrease symptoms so one can return to enjoying everyday activities. Treatment includes a combination of skin care, manual lymphatic drainage (gentle massage), light exercises, compression therapy and perhaps a pneumatic compression pump, all of which help to stimulate the lymphatic system and prevent additional fluid accumulation in the tissues. Medications can help reduce inflammation, prevent blood clots and treat infection.
National Resources
A great website to get good information is at
http://www.lymphedemablog.com/
Wisconsin Resources
Advancing the Zenith of Healthcare (AZH)
Vicki Magnan, OTR, CKTP, CLT (specializes in treatment of lymphedema and chronic swelling)
2500 West Layton Ave, Suite 30
Milwaukee, WI 53221
262-577-0250
The unique setting of AZH provides a collaborative approach in treating lymphedema. The specialists in wound and vascular diagnostics and treatment work together with the lymphedema therapist to obtain optimal results for each person. AZH offers lymphedema therapy to compliment the patient-centric delivery of comprehensive care.