Today was much better than yesterday. Baby J is feeling much better and he even slept in until 9:15. He woke just as Bean's OT was showing up for this morning's session.I had lots of news to share with the OT. I was excited that Bean has been eating much better - pretty much everything I've been offering him as long as it's a smooth puree and I alternate spoonfuls with his coconut milk yogurt. He also showed off his new talents with puffs, Pop Chips and diced, dehydrated fruit and his newest trick, drinking water from a Camelbak cup. He has refused any other cup we have tried but this one seems to be a winner. Now, if only I could get him to drink something other than water, you know, something with calories, but I digress...
Bean was having a good time and it was a successful feed but we needed to cut the session a bit short because Bean had an appointment with his GI, Dr. C, this morning too. So, we wrapped up with some soothing techniques to help calm him before his appointment and his therapist helped us get out of the house which is always a challenge with my two little boys.
The appointment went well. Bean's digestive issues are stable and he is up to 21 lbs!!! He's still not on the "typical" growth chart but that's ok because he IS growing and he is making developmental progress. Dr. C has played an instrumental role in getting Bean to this place. Long before we knew anything about Williams Syndrome, Bean's troubles all seemed to be related to his digestive health. And now, after trialing countless meds on various dosages and implementing dietary changes, all under Dr. C's direction, Bean is an incredibly happy and relatively healthy little boy.
But that wasn't always the case. As a young baby, Bean demonstrated signs of extreme "colic." I put "colic" in quotes because I don't believe it exists. "Colic" is often defined as sustained crying for no apparent reason. I believe that there's always a reason that a baby cries, especially a very young baby, and that doctors and parents need to do their job to figure out why a child is so unhappy. In Bean's case, it was clear that he was in pain. That cry was unmistakable.
His pediatrician, Dr. G, was exceptionally supportive from the beginning and insisted that there was something more going on. As a side note, Dr. G and all of the pediatricians at Kids Plus Pediatrics are amazing and I recommend them to any parent! So, he referred us to GI at Children's because it was clear to him that Bean had reflux and some dietary protein intolerances. We were assigned to a doctor that was new to GI. She had previously worked in the ER so one might think she would be competent, but... Well, we dubbed her, "DB," for "dump not-so-nice-expletive-that-starts-with-the-letter-b." And she really was that, a DB.
She prescribed inadequate dosages of medications (note that I am not at all interested in giving my kids unnecessary meds, but he really, really needed relief.) At two months of age, she said that he was just a fussy baby with a touch of reflux and colic and to let him cry - never mind the fact that colic is NOT a medical diagnosis, rather a behavioral description. He was beyond inconsolable for a minimum of a three-hour stretch at least twice a day and even screamed for 6 HOURS STRAIGHT once. The cry was like nothing I have ever heard. It sounded as if my poor child were being tortured over and over and over again - and in effect, that's exactly what uncontrolled reflux was doing to him. Sometimes adults mistake reflux for a heart attack but they are able to communicate what is wrong and get the relief they need. A baby can't do that.
DB ordered minimal testing which only confirmed that he had reflux. She wanted me to stop breastfeeding and start feeding him $40-a-can hypoallergenic formula. She felt that my elimination diet was extreme and that I couldn't possibly eliminate all dairy in my diet. Watch me, DB...
At four months old, the intolerances were controlled by my diet and she even admitted that to me, but she continued to stress that his fussiness was behavioral even though an upper GI showed reflux, a distended tummy and delayed gastric emptying. She continued to prescribe inadequate dosages of medication. I did a lot of research on other options but she was not willing to try any alternative (safe!) meds or order any other testing. She felt that I was overbearing and unreasonable. She thought that I was stressed and everyone would be much happier if I just let my child cry himself to sleep despite mounting evidence that he was in pain. Seriously, let a child in pain cry?
At seven months of age, she dismissed Bean as her patient because she felt that he really didn't have a problem, that he should have grown out of his reflux by that point and there was nothing else she could do to help. All along, Dr. G was suggesting that we try to get in to see Dr. C, a very well respected GI nearing retirement, because he didn't agree or support DB's approach. Being "dismissed" by DB worked out really well because Children's was giving us the run around about switching doctors. So, it was a fresh slate. We had to wait a couple of months to get in to see Dr. C but it did finally happen.
In the meantime, I got my hands on Bean's medical records. DB was very clear in her feelings about me. Her notes to Dr. G said that she did not feel that Bean really had any extensive medical issues, that I was "extreme" in my diet and refusal to let him cry when in pain and that I must be suffering from postpartum depression because I once cried on a phone call with her when I was pleading for more medication for my child. She didn't quite get that I was exhausted, overwhelmed and dealing with a child that cried non-stop and had to be held every second of the day or he would cry so hard he would make himself sick. Sure, I was down. I was down because I had a sick child and I could not get his doctor to help me. D flipping B.
Fortunately, Dr. G disagreed with everything DB wrote and managed Bean's care with adequate meds until he could get in to see Dr. C. We saw Dr. C for the first time when Bean was about 11 months old. He ordered several tests and found that Bean had some erosion and inflammation in his esophagus from the uncontrolled acid and a hiatal hernia. Dr. C confirmed my understanding that some babies outgrow reflux between 6-9 months but that is certainly not the rule. And Bean, to this day, has reflux issues but it's pretty well controlled now.
Dr. C and Dr. G encouraged us to continue looking for answers to explain Bean's health and developmental delays and fully supported my dietary changes to continue nursing Bean. I should note here that Kids Plus also owns The Breastfeeding Center of Western PA and most of the docs are also certified lactation consultants - you should really check them out! They took the time to explore various treatment options and are responsible for getting Bean to the point that he can finally eat without pain.
Because of the things that DB wrote about me, I had to work extra hard to gain the respect of Bean's various specialists. But I have earned their respect. They all get that Bean is not a "typical" child and has complex medical needs and they respect that I am his mother and am doing everything I can to ensure the best quality of care for my son.They accept and encourage me as an informed parent. I seek as much information as possible and am an active participant and member of Bean's care team.
I can thank DB for one thing. I learned how to be a true advocate for my child. I knew something was wrong and I refused to accept her opinions. I set aside my pride and pushed for Bean to get what he needed. I did not care what she thought of me. I just kept pushing. I can't imagine where we would have been if I would have accepted DB's advice. He would still be in pain today and we may not have pursued all of his treatments and therapies. We may not have even pursued a genetics evaluation.
I have learned of at least three other families that have had similar experiences with her. It's disgusting, really, that a doctor is so unwilling to do her job and listen and accept parents as experts on their children. I sincerely hope that no child is suffering because of her negligent care and parents that don't have the knowledge and/or confidence to fight back.
Obviously, I am still very angry with DB and often think about writing a "this is not acceptable" letter but I'm not sure that it would matter.
Still, I am grateful for what I learned from the experience and I am now confident in advocating for Bean to get all the resources he needs. And I am so very appreciative of Dr. G and Dr. C for recognizing that there was something more going on with Bean and encouraging me and helping me to find answers and set up necessary supports. Because of them, he was able to take a peaceful, pain-free nap this afternoon. See?
