Down Syndrome: A Day to Day Guide: How to Find A Quality Physician

Finding physicians to properly treat your child will be one of the most important tasks you'll need to tackle. But where do you start? Traditionally, we've been brought up to trust and revere doctors. But the more I learn about Down syndrome and the more doctors I talk to about it, the more I realize that they are people, just like you and me -- both gifted and flawed. I save my trust and reverence for my husband, but not my neighbor, the mail carrier or the average doctor....

It's important to keep in mind that you are the consumer and your physician provides a service. If you didn't like your most recent hair cut, would you go back to that stylist? Would you give him or her a second chance to fail to listen to you, misunderstand you, or butcher your hair? Why would you act any different when dealing with a pediatrician?

We have a lot to contend with in our quest for a great physician. Unfortunately, most people in the medical industry have been taught that Down syndrome is pretty much a hopeless case. I say "Down syndrome" and a whole host of preconceived ideas, myths and half-truths fill their mind. Just try it, when you have an over the phone interview with your prospective doc, tell him or her some of your child's symptoms without revealing the DS diagnosis. Listen to their reaction. Then tell him/her that your child has DS. Listen to the difference. But, if s/he has all the other good qualities I list below and "just" a negative preconceived notion of DS, you may still be able to work with him or her.

What can you do?

Search for a physician that has an overall positive, integrative approach to treating any condition and is open minded; then educate him or her yourself! (Don't worry, this blog is full of information to help you.) A good physician -- or at least one worth your time and money, and trust -- will embrace the opportunity to learn how to help your child thrive. Don't you and your family deserve it?

What to look for

This is my criteria for a quality practitioner:

1) Understands and respects the avoidance of vaccines or supports an alternate schedule of vaccines.

2) Is willing to support you in your quest to treat the symptoms and root causes of T21, which includes reading research you might provide.

3) Understands and/or supports the use of TNI (Targeted Nutrition Intervention).

4) Supports/will prescribe neurodevelopment programs or other forms of quality therapy.

5) Is knowledgeable of or has suggestions for treatment (that you can research yourself and decide whether or not to follow through).

6) Has knowledge/ respect/ understanding of holistic/natural treatment in addition to or as opposed to Western medical practices.

7) Is proactive rather than reactive. Treats major issues such as thyroid, sleep, ear, GI and growth in a swift, possibly aggressive manner as opposed to a "wait and see" approach.

8) Can direct cardiologists, pulmonologists, neurologists, GI doctors, etc. to properly treat your loved one.

9) Uses the DS growth chart for informational purposes only, instead of using it as an excuse not to treat our children.

Bonus: Pleasant bedside manner, takes insurance/ Medicaid.

Where to start?

1) Make a list of what is important to you in a physician. You have my opinion, now go through my list and put it in the order that you feel is most important. Perhaps bedside manner is more important to you or insurance/Medicaid has to be first for practical reasons. Consider how far away you are willing to travel. For me, an hour is manageable, but I'd drive two hours or more for a great physician. (Most of Jett's physicians are 45 minutes away.) Perhaps you have a relative who you can stay with on appointment days -- that would expand the area you can search in.

2) Make a list of prospective physicians. If you have a list of 10-20 names, it's much easier to feel the confidence to be selective. Do ask your local DS group for suggestions but do not take their word for it. (Most suggestions I get locally come from moms who say such things as, "He always hugs my child." That's great, but I haven't heard of a hug treating hypothyroidism.) Add the names to your list, but make sure they fit your criteria before you choose them.

3) Visit these sites to help build your list:

http://www.medmaps.org/

This new organization called MAPS (Medical Academy of Pediatric Special Needs). They require certification for doctors. It is autism specific, but it’s all about biomed, so ultimately these doctors are not looking at labels, but rather at what is going on biomedically with all of our children.

To find a holistic practitioner:

http://ahha.org/ahhasearch.asp

http://www.holisticmedicine.org/index.asp

Check out Dr. Sears' list of vaccine-knowledgeable docs:

http://www.askdrsears.com/topics/vaccines/find-vaccine-friendly-doctor-near-you

Check out this list of craniosacral therapy providers www.upledger.com/

Notes to consider:

DAN doctors (Defeat Autism Now) is a label that has been overused/abused so the autistic community no longer recognizes and supports that term. I've heard horror stories as well as stories of triumph involving DAN treatment. Be wary.

Holistic health, according to wikipedia, is a concept in medical practice upholding that all aspects of people's needs, psychological, physical and social should be taken into account and seen as a whole. As defined above, the holistic view on treatment is widely accepted in medicine.^[1] A different definition, claiming that disease is a result of physical, emotional, spiritual, social and environmental imbalance, is used in alternative medicine.^[2]

Naturopathy, or Naturopathic Medicine, according to wikipedia, is a form of alternative medicine based on a belief that a vital energy force guides bodily processes such as metabolism, reproduction, growth, and adaptation.Naturopathic philosophy favors a holistic approach, and, like conventional medicine seeks to find the least invasive measures necessary for symptom improvement or resolution, thus encouraging minimal use of surgery and unnecessary drugs. According to the Association of Accredited Naturopathic Medical Colleges, "Naturopathic medicine is defined by principles rather than by methods or modalities. Above all, it honors the body’s innate wisdom to heal."^[2]

Naturopaths have varing degrees of education and experience, so again, be wary. I will be taking Jett to a naturopath for the first time tomorrow to do muscle testing and NAET to see what supplements will work best for him. I will let you know how it goes.

Alternative Medicine

Integrated Medicine (Jett's pediatrician practices integrated medicine.)

Traditional Chinese Medicine

3) Research the names on your list. Check out their websites. Gather their contact information. Are there any clues that qualify them to maintain a spot on your list? Are there any red flags that make you feel uncomfortable? Cross them off!

4) Call or email to schedule a FREE over-the-phone or in-person interview with each one. (You may need to ask about what insurance s/he takes first.) Set up at least three interviews at a time so that you'll be more likely to follow through checking out the whole list instead of just taking the first one that you like. Once you have only one interview left, schedule two more to keep the ball rolling. The more time you spend doing this now, the less time and money you'll waste on an inadequate physician. And the more you interview, the more knowledgeable you'll be in order to select among them.

5) Mentally prepare to interview the physicians.

Feeling intimidated? Feeling nervous? Explore why. Is this person better than you? Does this person care more about your child than you? Who is more qualified in choosing a doctor for your child than you? If there is someone else, then perhaps they would take on this task for you. Otherwise, wear your "I'm the best mother for my child" clothes and use your "I am an informed, intelligent parent" voice. Give your self all the reasons why you are perfectly qualified to choose the right doctor. You and your family deserve it.

6) Take your criteria and turn it into questions. When possible, ask "open ended" questions instead of just yes or no ones. For instance:

1) What is your view on vaccines? Do you support an alternate schedule of vaccines?

2) What do you recommend for constipation?

(For me, this tells A LOT about a physician. If they mention the word "Miralax," it's over for me. Jett's pediatrician immediately recommended fruit that start with "p" such as peaches, prunes, pears, pineapple and papayas. Other acceptable answers mention fluid, nutrition, accupressure, chiropractic practices, probiotics etc. Not many physicians have gotten past this question!)

3) What is your view on vitamins and supplements? (Shockingly, a lot of physicians say that vitamins are worthless and can even hurt your child!!!!)

4) What role does nutrition play in a child's health? (Should be vital!!)

5) Are you able to go over research with me that I may feel is important?

6) Have you ever prescribed therapy for a child who may be delayed?

7) Do you have any experience treating patients with Down syndrome?

7) Conduct your interviews and narrow down your list.

May the best physician win. Good luck!

As a separate note, I am privately collecting a list of physicians from around the world who "properly" treat children with Down syndrome... Ones who (mostly) fit my criteria. If (hopefully, when) you come across a physician who meets these guidelines, it would be great if you could share the name with me so I can add it to my list. You can contact me to see if I have someone near you to recommend.

3 comments:

Me ;-)November 11, 2011 at 1:47 PM
This is great post, especially since I'm in need of a new pediatrician. These questions will be accompanying me to interviews.
ElizabethSeptember 25, 2012 at 10:34 PM
Hello, I would love to get in contact with you to get that list!! I live in Ohio. Is there an email address I can reach you at? Thanks!
Andi DurkinSeptember 25, 2012 at 11:23 PM
Elizabeth,
You can email me by clicking "about me" on the right of your screen and then, under the picture of Jett and me, you'll see "email." If you pass your mouse over the word w/out clicking and just look at the bottom left of your screen, it will show you my email address. (It's say "mailto...") If that's too cryptic, let me know! I just don't want to write it out because of spammers.
Andi

Thanks so much for taking the time to comment!

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Thursday, November 10, 2011

How to Find A Quality Physician

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