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Top Pediatric Doctors for EDS, Dysautonomia, and Mast Cell Disorders

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With my new series on Ehlers-Danlos and “The Trifecta” (Dysautonomia, POTS, Mast Cell Disorders), I have already been getting many questions about the pediatric doctors we see for these disorders. Since we are a military family, we have traveled to other states and seen other pediatric doctors that I would highly recommend. While most of the specialists I recommend are here in Colorado, I thought it might be helpful to add a few others we have seen as well.

Top Pediatric Doctors for EDS, Dysautonomia, and Mast Cell Disorders


Top Pediatric Doctors in Colorado

To help you out, I am going to give each doctor a brief review and an explanation of why my daughter sees that specialty.

  • Dr. Soden – Amazing doctor and the only pediatric GI in Colorado that listened and heard my concerns. My daughter sees him for her feeding tube and severe reflux.
  • Dr.  Pena or Bischoff – This is a husband and wife team that are world-renowned for their knowledge in Colorectal surgery. My daughter sees Dr. Pena for severe constipation requiring daily enemas.
  • Dr. Stig Stomme – He did my daughter’s Hiatal hernia repair surgery and repeat Nissen Fundoplication.
  • Nutritionist – We met Jessica when we were in the Aerodigestive clinic. She is the only nutritionist I will see and truly understands the nutritional needs around these disorders.
  • Physical Therapist – Wonderful, kind, pediatric therapist who is very versive in Ehlers-Danlos Syndrome and how to do Physical Therapy without damaging the joints.
  • Dr. Hamilton –  Very attentive and extremely well-versed in everything pediatric ENT. He knows a great deal about Ehlers-Danlos as well.
  • Dr. Cuevas – Well-known in the community as the top pediatric doctor for sleep issues. He is the only one I would trust with my daughter for these issues. He sees her for insomnia, periodic limb movement disorder, central apnea, and periodic limb movement disorder of sleep.
  • Dr. Collins – Very knowledgeable about Dysautonomia/POTS. She also knows a lot about Channelopathies and had a lot of secondary testing ideas for when other doctors hit a brick wall. My daughter sees her for her movement disorder.
  • Dr. Pearce – She was the first doctor to mention Ehlers-Danlos Syndrome. Very knowledgeable and the best in her specialty! My daughter sees her due to needing orthotics for hypotonic and hypermobile ankles.
  • Dr. Caplan – Great doctor knowledgeable in allergies and asthma. My daughter only saw him a few times, but I have another friend whose daughter sees him and he has really helped with some of her Mast Cell issues.
  • Dr. Tsai – Doctor who officially diagnosed my daughter with Ehlers-Danlos Type 3, POTS, and Mastocytosis. I’ll be honest, she’s a bit of an odd duck, but she’s extremely intelligent and knows what she’s doing. I wouldn’t see any other geneticist.
  • Dr. Santucci – Life-changing doctor! Dr. Santucci is part of the Special Care Clinic and helps oversee all of Elizabeth’s care. She makes sure the doctors are all talking to each other, gives us recommendations for specialists based on symptoms, and is amazingly knowledgeable in EDS, POTS, and Mast Cell Disorders.
  • Lonnie Williams – Also apart of the special care clinic, she is the only other doctor I will see if Dr. Santucci (above) is not available. She does the hospital rounds for the special care clinic and she is very kind and willing to listen.
  • Dr. Pia Hauk – I found her through researching pediatric doctors in Colorado who dealt with Mast Cell Disorders. She is very knowledgeable, knows how to correctly administer testing for MC Disorders, and has several contacts at NIH who deal with MC.
  • Dr. Deterding – We originally saw her through the Aerodigestive Clinic and are now seeing her for asthma. Fantastic pulmonologist with a great bedside manner!
  • Dr. Samuel Brescia – We were told that Dr. Brescia is the only doctor around that deals with pediatric POTS. He did not disappoint! He spent two hours with us at our first visit and is very knowledgeable about POTS.
  • Dr. Jaime Belkind-Gerson – He is a motility doctor that we originally saw in Boston and he happened to move here to Colorado. He is excellent at what he does and one of the top motility doctors in the nation.
  • Dr. Laura Bruckner – While we’ve only seen her once so far, she has helped with some of my daughter’s skin issues and is knowledgeable about Mast Cell Disorders and how they affect the skin.
  • Pediatric Gastroenterology
    Dr. Jason Soden
    Digestive Health Institute, Children’s Hospital Colorado
    13123 East 16th Ave.
    Aurora, CO 80045
    Phone: (720) 777-6669 Fax: (720) 777-7338
  • Pediatric Surgery 
    Dr. Stig Somme, MD
    Children’s Hospital Colorado
    13123 East 16th Ave,
    Aurora, CO 80045
    Phone: 720-777-6571 Fax: 720-777-7271
  • Orthopedics & Rehab
    Dr. Wendy Pierce, MD
    Children’s Hospital Colorado
    4125 Briargate Pkwy, B290
    Colorado Springs, CO 80920
    Phone: 719-305-9080 Fax: 719-305-9708
  • Genetics & Inherited Metabolic Diseases
    Dr. Anne Chun-Hui Tsai, MD MSc, FAAP, FACMG
    Children’s Hospital Colorado
    13123 East 16th Ave 300
    Aurora, CO 80045
    Phone: (303) 724-2363
    Dept Phone: (303) 724-2370
  • Pulmonology
    Dr. Robin Deterding, MD
    The Breathing Institute at Children’s Hospital Colorado
    3123 E 16th Ave
    Aurora, CO 80045
    Phone: 720-777-6181
  • Dermatology:
    Dr. Anna Bruckner, MD
    Children’s Hospital Colorado
    13123 East 16th Ave.
    Aurora, CO 80045
    Phone: (720) 777-8445
  • Nutritionist
    Jessica Youngberg
    Children’s Hospital Colorado
    13123 East 16th Ave.
    Aurora, CO 80045
    Phone: (720) 777-6689
  • Pediatric ENT
    Dr. Steven Hamilton, MD
    Children’s Hospital Colorado
    4125 Briargate Pkwy, B290
    Colorado Springs, CO 80920
    Phone: (720)-777-6895 Fax: (720)-305-7196
  • Allergist
    Dr. Eric Caplan, MD
    Children’s Hospital Colorado
    4125 Briargate Pkwy, B290
    Colorado Springs, CO 80920
    Phone: 719-305-9045
  • Hanger Clinic
    Prosthetics and Orthotics
    4105 Briargate Parkway, Suite 110
    Colorado Springs, CO 80920
    Phone: 719-282-0369 Fax: 719-282-0494

Top Pediatric Doctors in Georgia

While we saw many many doctors while stationed in Georgia, the ones listed below are the ones that stuck out to me the most as the best in their specialty and for going above and beyond in helping us find answers. I highly recommend any doctors affiliated with Children’s Healthcare of Atlanta and Scottish Rite Children’s Hospital of Atlanta.

  • Gastroenterology
    Dr. Jeffrey Blumenthal, MD
    GI Care for Kids
    993 D Johnson Ferry Rd. NE
    Atlanta, GA 30342
    Phone: 404-257-0799
  • Neurology
    Dr. Holly Hoenes, MD
    Georgia Pediatric Neurology
    164 N. Lee St. Suite 164
    Forsyth, GA 31029
    Phone: 478-994-6868 Fax: 478-994-6363

Top Pediatric Doctors Massachusetts

When my daughter was 6 months old, we took her to Boston to see a group of specialists. She was hospitalized at Mass General Children’s Hospital, one of the top pediatric hospitals in the country. This is the team we saw. Below that list is the recommendation of my friend who lives in Massachusetts. Her daughter has Ehlers-Danlos Syndrome and sees a rheumatologist.

Massachusetts Pediatric Doctors

Rheumatology
Dr. Mindy Lo, MD, PhD
Boston Children’s Hospital
300 Longwood Ave.
6th Floor, Boston, MA 02115
Phone: 617-355-6117

Top Pediatric Doctors From the EDS Conference

As I mentioned in my first post, An Introduction to Ehlers-Danlos Syndrome in Children, I had the opportunity to go to an amazing conference for families and parents of children with Ehlers-Danlos Syndrome. For a full day, we listened to some of the top specialists around the country talk about Ehlers-Danlos, POTS, and Mast Cell Disorders. Below are the doctors from this conference and where they practice medicine.

  • Dr. Ellen Elias, MD
    Professor | Pediatric Clinical Geneticist | Head of Special Care Clinic at Children’s Hospital Colorado
    Children’s Hospital Colorado
    3123 E 16th Ave.
    Aurora, CO 80045
  • Dr. Jeffrey R. Boris, MD, FACC, FAPP
    Clinical Professor of Pediatrics | Pediatric Cardiologist
    Children’s Hospital of Philadelphia
    3401 Civic Center Blvd.
    Philadelphia, PA 19104
  • Dr. Anne Maitland, MD, PhD
    Assistant Professor | Department of Medicine – Clinical Immunology Division Mount Sinai Hospital | The Mastocytosis Society
    Mount Sinai Hospital
    1 Gustov L. Levy Place
    New York, NY 10029-6574
  • Dr. Pradeep Chopra, MD
    Assistant Professor | Brown Medical School | Pain Medicine
    Pain Management Center of Rhode Island
    102 Smithfield Ave. 
    Pawtucket, RI 02860 
    Email: snapa102@gmail.com

What about YOU? What are some of the top pediatric doctors you would recommend for Ehlers-Danlos, POTS, or Mast Cell Disorder?

An Introduction to Ehlers-Danlos Syndrome in Children

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