Medical professionals – Healing Complex Kids

July 18, 2022July 10, 2022

12 Questions to Ask When Selecting a Doctor for Your Child

When interviewing doctors to find the one who can provide the best care for your child, ask the following list of twelve initial questions on your first visit: (Note: Some of this information may be available online, or you may be able to ask a few of these questions when making your appointment.)

Are you board certified? If so, what is your specialty and where did you go to medical school? Ideally, you want a board-certified physician that went to an accredited medical school. Early in our search for a pediatrician, we visited a pediatrician that was recommended by several families. During our initial meeting she attempted to offer our son a corn syrup filled sucker. When I said, “No, our son has allergies”, she responded, “Oh, you’re one of THOSE moms.” Yup, I was one of those moms that had an ADHD little guy that didn’t need extra sugar and had a host of allergies. I later found out that she had her medical degree but had not received it in the United States.
Do you encourage parents to ask questions and express opinions? Do you encourage participation in care and encourage the patient and parents to be part of the medical team? Our all-time favorite medical doctor, a neurologist, made a point of beginning his relationship with his patients by telling the parents that he expected and encouraged questions. If the parents were researching information on their child, or seeing something, he wanted to know. He was adamant in his opinion that parents were part of the team and he wanted and needed to hear from them.
Am I able to call you directly in case of an emergency? Our son was an extremely medically complex child and I’m convinced that asking this question and having the cell phone of his Chicago based specialist saved his life when he was eight years old. Our medical specialist took our call, listened to the situation and immediately phoned our local team of doctors and told them how to proceed.
How long is the wait to see you for non-emergency appointments? If there is an emergency what is your response time and how does the office handle an emergency if I’m unable to get in touch with you? These two questions piggy back on each other and are extremely important. Some specialists will have a 4 to 5 month wait, some longer for an initial appointment. Because of the complexity of our son’s issues, I always requested information on what to do in case of emergency, and ask who was on call. Once we became a patient, we would get into the rotation, and have the ability to see the specialist more frequently.
Is this a group-practice? Will we see you each time we visit or will it be a rotation? If you are unavailable, who can I expect to see?
Can I phone or email you with questions regarding a non-urgent situation, and is there a charge for short questions? If so, what is the charge?
If I need to see a specialist for my child, will you work with me to find the right specialist? This will help relieve a lot of angst if you know your doctor is part of the team and willing to work with a team of specialists.
If it becomes necessary, are you comfortable in working together with our family and a team of specialists? This question becomes especially important once you have a diagnosis. At times, we were working with two different neurologists, and one neurologist with admitting privileges oversaw our son’s monthly hospital procedures, based on direction and input from his out of state medical specialists.
Are you comfortable with me bringing a friend or family member with me to the appointment? Is it possible to record our visit so I can best participate and share with my spouse when I leave the appointment? This is important, as it can be difficult to ask all the questions you need and understand what is going on when your child is sick. The ability to bring a friend or record can help you tremendously.
Do you work with a certain hospital? This important question can be a deal breaker. For example, if Hospital A is the BEST hospital in your area and close to where you live, but the doctor only works at Hospital Z, which is a hospital that is far away and not as highly regarded, you have a decision to make. Is it worth the risk of seeing this doctor should your child need to be directly admitted to the hospital, and your doctor does not have admitting privileges?
Do you keep paper or electronic records? Do you provide post-visit reports that summarize the treatment plan and what we discussed? This can be very important for continuity of care. Having copies of the post-visit reports ensure you are on the same page, and doctor’s notes can be important as well.
Do you take my insurance plan? If not, do you offer any discounts for cash payments or do you have any other payment options? Probably the most important thing I can tell you is to not dismiss a doctor because they do not take your insurance or accept insurance. We have found through our years of seeing medical specialists, that often the BEST doctors, the medical providers that have a solid history of getting their patients to a good healthy place, do NOT accept medical insurance. We’re so used to it, that if we find a doctor or medical provider that takes insurance it is more the exception than the rule and we do a happy dance.

This list might seem daunting, but I know you’ve got this. Heading to the doctor with this list in hand will guide and encourage you as you ask the important questions to find the right physician, medical plan and team to help your medically complex child.

These four steps are an excerpt from the Pathway to HOPE Resource Guide. To purchase your copy (Oakland County, MI residents pay only S&H thanks to a grant from United Way of Southeast Michigan and from Oakland County government), visit https://healingcomplexkids.org/product/2021-pathway-to-hope-resource-guide/.

July 10, 2022July 10, 2022

4 Steps to Take If You Suspect Your Child Has a Developmental Delay

What do you do if you suspect there is a medical issue going on with your child?

First, begin by making an exhaustive list of your child’s symptoms. Be as specific as possible. Examples include: my child has an extreme amount of energy and only sleeps 2 to 3 hours per night, my child appears to be exhausted ALL the time, my child sleeps twelve hours a night and still has dark circles under their eyes. Be specific about what you are seeing, including behaviors and illnesses. Write down your child’s symptoms and any observations, as well as any supplements or medications that your child is taking. Have this information, as well as any questions you have, ready to discuss with your doctor.
Second, phone your primary care physician and request an appointment. Tell the office your concerns and, if possible, ask if there are any tests that can be completed prior to your appointment. This will give you a more productive appointment and more data for your doctor to begin helping you. Your goal is to obtain as many data points as possible, as quickly as possible, so you can get to the root cause of your child’s issue.
Third, if you need to find a primary care doctor take these four initial steps:
1. Contact your insurance company and find out which doctors accept your insurance plan and are in network.
1. Compare this list of doctors in network with reviews you will find online.
1. Reach out to various mom or parent groups and ask parents for their opinions. Moms will be quick to tell you what they liked and didn’t like about a doctor.
1. Seek word of mouth recommendations from family, friends or previous doctors to aid in your research and help you narrow your list. Don’t forget the information you are gathering is based on other people’s opinions. Your child is unique and you need to work with someone that you are comfortable with, who will listen to you and is willing to help you.
Fourth, do not end your doctor search until you have met with your new doctor. You need to be sure you are comfortable and able to communicate easily with your new doctor.

November 23, 2020November 23, 2020

I’m a Warrior Mom – not a saint!

A couple months ago, my son and I traveled to a university hospital to complete some testing and meet with some doctors from one of the medical specialty clinics. The day started off pretty uneventfully, until the head doctor walked into our room with her entourage of doctors-in-training. The doctor began by smiling at me and my son, than she said something that had my eyes instantly fill with tears.

She told me she had been to Eastern Europe and toured some of the orphanages and that my husband and I were saints. By adopting our son, we had likely saved his life and she wanted to commend us. If we had not adopted him he would probably have died.

The mere thought of my son dying, alone and scared in an orphanage instantly invoked two emotions. The first was extreme sadness at the thought of losing my precious son and secondly, anger at the insensitivity of this doctor. Seriously – she was going to commend me for being a saint – lift herself up in front of her students, like she was some expert when it came to medical care in Eastern Europe and she’d admitted to only visiting a couple orphanages on ONE visit.

My son was sitting across from her. And he was suddenly extremely anxious, pale, scared, and very concerned – because all he heard was he would’ve died if he had not been adopted. He heard that his parents saved his life and suddenly he was preoccupied with the thought of death. “I would’ve DIED”… was what he heard. It didn’t take much to go to the next step – mom, does that mean I’m going to die?

And it was a difficult position for me to be in. What should I say to the doctor? I was battling sadness, anger, and sheer incredibility that she would say this in front of him. Then to add insult to injury, when I told tell her that we really shouldn’t continue in this vein, she indicated that he didn’t understand what we were talking about. WHAT!!! Can you hear my Warrior Mom roar?

I was flabbergasted and furious! Our son has been tested at other facilities and previously shown an above average IQ and a photographic memory. And she tried to tell me that in their testing they had not found the same thing and she did not believe he understood what she was saying. Therefore the testing since the age of 3 at various other highly regarded institutions must be incorrect. Furthermore, the testers at this university hospital repeatedly stated that our son was ill on the day they tested him and they did not feel they got the best out of him. Aghhhh!

So how do you prevent something like this from happening to you and your child? We’ve learned the hard way that people understand things better when there is a story to tell. So feel free to tell this story, our story- about a doctor that insisted on talking negatively about a child and scaring him so much that he talked incessantly about dying and for more than three weeks after the meeting and kept asking, “What did the doctor mean by you saved my life?”

Here are three things that I believe you can say to a doctor, prior to meeting, that are in the best interest of your child.

Doctor, please, try to review in advance any information I’ve painstakingly written down for you. And doctor, when we sit down to discuss the information, please make it possible for me to meet with you alone and then with my child. It’s really important that you DO NOT review behavioral issues in front of my child. This is not a good practice as it can lead to further regressions and issues. Please review the information I’ve spent hours working on and then sit down with me, the parent, privately.
I’m not a saint. I’m a parent that has a sick child. I’m here for help and answers. Please don’t grand-stand in front of your medical students and try to pretend that you are empathetic and understand what I’m going through. Unless you have a complex (special needs) child and have been living with that child, dealing with numerous issues day and night for more than 11 years, you don’t know what it’s like to be me. Visiting an orphanage in Eastern Europe and seeing the quality of care does not give you the right to judge me or my child and to make grandiose statements. Instead, PLEASE tell me that you’re aware of issues/problems with medical care and you are happy to see HOW our family is helping our child and you are here to be part of the solution. Please don’t become part of the problem by going on about what a saint we are for adopting our child. We’re not saints. We’re tired parents that have spent a ton of money and traveled to 17 states to get our kid better. I want to listen to you and get good information from you. When you start out in the way you did, dear doctor, you lose credibility and reinforce why I have trouble finding good doctors to help us.
Don’t disparage what my team of doctors are doing or have told me to do to help my child. If you disagree, think of a better way to say you disagree other than tell me there are unscrupulous doctors/therapists that see you coming and want your money. Yes there are. But give me some credit. JUST because another institution is not doing something that is cutting edge and done by only three locations in the USA, do not tell me that what they are doing is not worth it. Consider that the parent sitting in front of you has not only spent a ton of money to get their child to this point, but they’ve also spend hour upon hour doing research. And yes, if I were a few years younger I would DEFINITELY be going to school to get my official M.D.

And finally, when I come into your office -look at my entire child. He is smart, funny, curious, imaginative, and one of the fastest runners in the 6th grade. Look at him, see his sweet smile, his cocky grin. Be present!

Our family has been to hell and back and we’re still going down that road as we work to recover our child. We’re not done, but until we are done, we will be researching and interviewing a lot of doctors. If you’re good enough to make the team, then you’ve earned our respect and we will expect you to play nice with others. Meaning, do some research and don’t get lazy and just sit back on what you learned last year or the year before. I’m a mom. I got my doctorate from Google. I spend countless hours every day, week, month and year learning EVERYTHING there is to know about my son’s illness. When you ask who his primary care provider is, you’re looking at her – me – his mom (and dad too). We know more than you do about our son and his day-to-day needs and issues. If you’re good enough to make the team, you are someone that we trust and someone that we want to listen to.

So please listen with your ears and your heart. When I bring my son to see you, I’m bringing my precious child. We’re on a schedule. We have to squeeze out as much joy and fun as we can, but we also have to accomplish as much as we can during the next 5-6 years to get him as well as possible. So help us – work with us, let’s make sure we’re on the same team.