If there is one thing I have learned, regarding any member of my family and medical professions, is that you can’t be afraid to do what feels right. Even if you think it’s the most ridiculous thing in the world, ask. Contact the doctor with your concerns, and if you think something is wrong, go see them! If you don’t like a doctor, find a new one. You have to feel comfortable and confident.
When finding doctors for your children, especially your medically complex one(s), it’s so important to assemble a knowledgeable team that makes you feel at ease, and treats your child the way a child deserves to be treated (some of you moms will know exactly what I am talking about). The kind of doctor that will talk to them, and not through them.
Before CJ was born we visited multiple doctors, based on recommendations that we got from family and friends. Most groups let us make an appointment with the doctor to go visit, ask questions, and hear how their practice runs. We were immediately sold on the most highly recommended. She seemed so sweet, and while there were many medical professionals to see within her practice, she said it would be no problem to request, and see, her if there was a serious issue. Having availability to see her if we wanted to was a huge factor.
Liesssssssss! CJ wasn’t the best baby. A few weeks after he was born he spent more hours crying than not crying, wouldn’t go to sleep, and was incredibly hard to comfort. Being a first time mom, I was a mess. I repeatedly told Steve that I thought he was broken. I brought him to the office right away, and was willing to see any doctor for an answer. He was diagnosed him with GERD, prescribed medicine, and we were sent home. Two more weeks went by and there was zero change.
I was convinced he had a dairy allergy. Based on all my extensive google research, I called the office to share with them my thoughts, and what I was a seeing at home. Based on that information, I was asked to bring in a stool sample. The results came back negative. The more sleepless night I got, the more determined I was to find out what was wrong. I called and asked for an appointment with the doctor we met with when we choose the practice. I was told there was a three week wait. I explained how the doctor personally told us that if we requested to see her, we could get in to see her. Still they told me it was a three week wait.
Instead of waiting, I asked for CJ’s stool to be tested one more time. Sleep deprivation makes people do crazy things, and I was convinced that first tiny piece of poop wasn’t enough of a sample to provide accurate information. The second time around i made sure there was more than enough. I brought it in, waited in the waiting room, and…boom! It was confirmed. CJ had a dairy allergy. Two weeks after we switched his formula he was smiling, laughing, and sleeping through the night. I swear to you all, he was a completely different child.
The entire experience turned us off completely to this particular practice, and off we went to find a new doctor. The new doctor we ended up picking met with us after work one day. I was sold the second he had me call the emergency line, right in front of him, to show me how it worked. The calls directly go to him, and there is no crazy answering service to hassle with. He doesn’t even have a nurse, or belong to a group. He’s a one man show.
We have been with him almost eight years and I adore the man. He always apologizes to my kids before he gives them a shot because he knows it’s going to hurt. He talks to Ella prior to any exam and won’t start until she is giggling and happy, which happens every time. The other day I brought Jack in because I thought he had an ear infection. He did almost the entire exam on a chair Jack had climbed on because that is where he was content and happy. He never blows off my crazy questions, and calls us back no matter what hour of day or night. There is never a time where he doesn’t squeeze us in if we need to be seen, and has even made a special trip to the office on a weekend to see my kids. In my opinion, that is top notch care.
While Ella’s neurologist practices out of Columbia, there is never a time she is not accessible via phone or email. When Ella was admitted to the hospital in May we immediately called her to let her know. She reached out to the neurologist treating Ella and they came up with a plan together. She also called daily to see how everyone was doing. Sunday night I emailed her with a question, and she responded within the hour. We have her cell phone number and have been told multiple times to call whenever we need her. She is amazing, and truly invested in Ella’s health. In the spirit of full disclosure, she is our third neurologist. To the other two, Ella was just another patient. We never left those other offices feeling like they cared enough to dig deeper than the surface for answers. Her neurologist now is open to doing anything that can potentially find us answers, or help Ella function easier on a daily basis.
I have shared before the incredible care we get from her chiropractor, Dr. Joe. If I called him at 4 am and told him Ella needed him, he would show up in his jammies to treat her. She is by far his favorite Zurlnick, and he misses her if they go too long between visits. She adores him. They always catch up when they see each other. Dr. Joe could chat with her for hours. He also shares in our quest for answers, and is constantly researching and reaching out to colleagues for suggestions or feedback regarding things he sees with Ella.
Ella’s current geneticist is in Delaware. We drove to DuPont to see her for a fresh pair of eyes. The doctor we had down at Westchester was providing us with very little answers and wasn’t willing to do further testing. They did do the testing we had hoped for at DuPont and for now, that’s all that can be done. Her genetic counselor checks in about every six months to see how Ella is doing and is always there to answer any questions I might have.
Our team is strong and we feel incredibly comfortable with the care and attention Ella is getting medically (CJ and Jack too). Some people think we are crazy because we have jumped around from doctor to doctor. Some even had the balls to say it’s because we didn’t like what we heard from the first ones. These are people who do not have medically complex children. Trust me when I tell you, we have heard many things regarding Ella we would hope to never hear, but at the end of the day honesty is not what makes or breaks a doctor for us. We appreciate honestly. Good or bad. What we want is proactive professionals who won’t stop searching for answers.
You don’t hit a homerun every time you are at bat. That doesn’t mean you stop trying. I encourage you all, find doctors who care. Don’t settle for less than you or your child deserves. I promise you, while they seem to be a rarer breed, they do exist!
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