HI Achievers

Dr. Jason Goldberg, UTMB

/ Renee B / Leave a comment

Dr. Goldberg is a “HI Achiever” that was thrown into the HI world by chance – A perfect storm that brought he and Jackson together. Perhaps some sort of divine intervention.

As you know, Texas Children’s Hospital has been instrumental in the diagnosis and treatment of Jackson’s Hyperinsulinism but our journey started before we landed on their doorstep. With me sitting in Dr. Goldberg’s office, scared, and desperate for help. Not knowing that the new doctor we had to see by default, would become the one to help save his life.

When Jackson had his first seizure and starting acting abnormal, we went to our local emergency room. There, the attending doctor dismissed us.  I now know this happens all of the time with these kids. No one looks at a baby and thinks “I wonder if they are hypoglycemic?”. This doctor made me question my own judgement and made me feel like I was overreacting.  He told me “babies do this all of the time when they’re teething, it’s completely normal”. He even laughed off our concerns. We had such a large age gap between kids it was understandable that we’d be quick to jump the gun. I regret taking his words to heart because Jackson continued to suffer. I became too unsure of myself to get an immediate second opinion. Each day, nothing changed. His temperature was cold, he would zone out, I couldn’t get his attention, he had no energy, and he stopped crying for food. After three more days of this, enough was enough. I needed another opinion.

I called to make a same day appointment with our pediatrician. She was out of the office so we took the first available with Dr. Jason Goldberg, he’s with University of Texas Medical Branch (UTMB). I’ll be honest, I was a little disappointed to have to go to someone we’d never been to before but in that moment, I had to take what we could get. I trusted the pediatrician’s office, I just wasn’t in the mood to deal with someone new. As I was headed to the appointment, I knew I wouldn’t be able to leave without answers. I couldn’t have another doctor dismiss me. I needed someone to listen. We needed help. I had never met Dr. Goldberg before but I went in feeling like I was ready for a battle. Hopefully, I didn’t scare him. In our talks since then, I know I made an impression. He’ll tell you, I was in momma bear mode.

Dr. Goldberg walked in our exam room and introduced himself. Without missing a beat and not giving him time to get another word out, I pounced. Looked him dead in his eyes, more desperate than I have ever been, and said “Something is wrong with my son. Don’t tell me I’m overreacting, I have common sense and I am not going to be dismissed. My son needs help”. As straight forward and slightly rude as I was, he said “Ok. You know him better than anyone. You tell me something’s wrong, then something must be wrong. Start from the beginning”. So I did. I could see it in his eyes, he too knew something wasn’t right. This wasn’t normal. He and I both suspected something neurological may be happening. He told me to get in my car and head straight to Texas Children’s. He said “If they won’t see him, call me, if I have to keep this office open late and get a specialist here, I will do it. Whatever we have to do, we’ll do it. We’ll figure this out”. I took Jackson and we headed straight to TCH, and you know how that story goes. We arrived with his blood sugar at 21, likely moments away from brain damage or possibly death. We arrived just in time.

Dr. Goldberg continued to follow Jackson through a shared system UTMB and Texas Children’s have. He even called us a few times during our three week stay, just to see how we were, if there was anything that he could do to help. See, he’s not just a good doctor, he’s a good person.

Once we were ready for our discharge at TCH, we were told to make thing simpler, we should switch Jackson’s primary care to a TCH doctor. Keep all of his healthcare within one system. That may have made things more transparent but Dr. Goldberg helped save his life. We weren’t going anywhere. We were staying with UTMB, we were staying with Dr. Goldberg. He is the best pediatrician to treat Jackson.

Dr. Goldberg has gone on to research hyperinsulinism, diazoxide, and be as prepared as possible to help keep Jackson healthy and to make educated decisions. He’s done everything he can to make the transition between both systems seamless and no matter how busy he is, he never rushes us. He always looks at the whole picture. He researches. He asks questions. He cares about my son. He cares about my family. I really couldn’t ask for anything more.

There aren’t many doctors like him and we could never repay him for all he’s done to keep Jackson safe and healthy or the sanity he’s given me on my rough days, when I show up in his office stressed, scared, tired, overwhelmed, or even in tears. Dr. Goldberg is who you’d want in charge of your child’s health. My rare kid, has a rare doctor. We’re pretty lucky.

Dr. David Paul, endocrinologist, TCH

/ Renee B / Leave a comment

Dr. David Paul is my next HI Achiever.Hyperinsulinism Dr Paul TCH

Dr. Paul is Jackson’s endocrinologist at Texas Children’s Hospital (TCH). We met him on day three of our hospital stay. I remember when he came into the room for the first time. He took the lead in the conversation and I stopped him. What is your name and what is your role?  Everything was a whirlwind. Doctors and nurses were in and out like a revolving door. Everything was running together and I couldn’t make sense of all of the possibilities. So when he walked in for rounds that morning, I was ready. I had a pen and paper in my hands and I wrote down everything he said. I wanted to know it all. So many things were new. So many things were unknown. I was overwhelmed and I was scared. My son was sick and I didn’t know why. I refused to Google anything. Told family and friends if they did internet searches to please keep us out of the loop. I couldn’t go down a rabbit hole. I needed facts. Dr. Paul was my main source of information. He was going to figure this out, I trusted that.

The second morning, when Dr. Paul did rounds, this is what he walked into (picture below). I realized the wall could act as a whiteboard. Our PCU nurse, Renee White, gave me a marker, and I was on a mission. You can’t see the other 5+ feet of wall to the left. I wanted to figure this out. I needed to see everything drawn out.

Hyperinsulinism Dr Paul TCH 2

Some doctors would walk in and see my board and chuckle and say it looked like I was cramming for an exam,  some would be impressed, and some didn’t notice. Dr. Paul walked in the room, saw my notes, and went through each line item, one by one, every day. He never rushed me. There were times he’d stop by after his rounds were done and sit with us another hour or more. Answer questions. Discussing research papers / case studies that I read. A doctor that doesn’t rush you? A doctor that cares what you think? A doctor who is willing to engage a mother’s Google doctorate?

I liked Dr. Paul right off the bat. You can see the wheels turning when he’s faced with complex issues. There’s no mistaking his candor or his intelligence. I tried finding information about him online and in the Hyperinsulinism world, but my search came up empty. Not that I need a doctor to have a shelf full of awards in order to be “experienced” enough to treat my kid but I was surprised that he wasn’t more highly decorated online for his achievements. Dr. Paul has been treating HI since the 90’s. He has seen and treated more kids with HI than most endocrinologist in their entire careers. So while you may not see his name in big fancy lights, he’s an unsung hero in the HI world. Certainly a hero in our world.

In the months following our initial hospital stay, Dr. Paul has continued to be a great doctor. He’s visited Jackson during other hospitalizations which weren’t endo related, humored me in answering far too many questions and emails on random thoughts that I have, introduced us to other wonderful doctors, did everything he could and made himself available when we were ambulanced to a hospital that was scared to treat Jackson (they had never had an HI kid), answered text messages when I’ve been scared over the weekend, far more than any doctor in any other capacity would have ever done.

I really can’t imagine having to go through this journey with another doctor. Trust me, we’ve meet a bunch of them. Even other experts. They were all great, fantastic even, but they’re not him. Not only has he been great to Jackson, he pushes me to be a critical thinker and honestly makes me wish that I would have pursued a career in the medical field.

Since August 2016, our lives have been unpredictable. It often feels like we’re all caught up in a tornado, twisting and turning, at an unpredictable pace and the one thing anchoring us down is him. He keeps my anxiety and fears in check, because I know my son is in the best hands possible. I can ask anything that I want, no matter how silly it may seem to me, and he’s right there to answer. Dr. Paul will do whatever he has to do to keep Jackson safe and healthy. I trust him with Jackson’s life. No better feeling in the world than that.

HI Achiever – Angelica

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Introducing: Angelica

When Jackson first starting showing symptoms and the ER doctor told us he was fine and there was nothing wrong with him. She and I both knew better. What is so odd, is before Jackson’s diagnosis, he stopped crying for food. Looking back, I think he stopped crying because his blood sugar would drop so low, he didn’t have the energy to “communicate”. I kept pushing him at home to eat and she did the same when he was with her. I told her the doctor said he was fine. In my heart, I knew something was wrong, but I seriously second guessed myself. In her heart, she too knew something was wrong. So unknown to both of us for a few days, we both were pushing Jackson to eat on a strict schedule. I really think most people would just assume, he’s not crying, no need to wake him and make him eat. Or think, he’ll cry when he gets hungry. But, not her. She’d push him to eat every three hours, giving him carbs – fueling his body and his brain, she did this day in and day out, every three hours, like clockwork. Once I got to the point where I was convinced something was truly wrong, despite what I was being told, I talked to her about it. I’ll never forget the look of relief on her face when I told her I was moving on and getting another opinion.  The look on her face was what I needed to know that I wasn’t losing my mind. Something was wrong and she agreed.

Angelicia is Jackson’s daycare teacher. I have thanked her and cried with her more times than I can count but it never feels sufficient. How do you thank someone for helping to preventing brain damage in your child? How do you thank someone for keeping your child alive? You can’t. No amount of thank you’s or tears, is ever enough. We owe so much to her.

I dread the day when Jackson outgrows her classroom. I feel queasy just thinking about it. She continues to take such great care of him. She checks his blood sugar, feeds him, is helping me to push him to meet milestones, and provides a safe place for him to learn and grow every day. I want to keep the two of them together forever. I trust her as much as I trust myself, and that says a lot.

Angelicia, thank you. Thank you for being kind, loving, intelligent, and for trusting your instincts. We’re very blessed to know you and I’m honored to be able to share my son with you.

There are plenty of great things to say about his daycare too, but I’ll save that for another day or post. This one belongs to Angelica only.

HI Achievers

/ Renee B / Leave a comment

I’d like to highlight all of the people and medical professionals that help guide us on our journey. There are already so many! We live in Houston, TX, with access to the Houston Medical Center. We’ve met fabulous doctors, organizations that raise money and awareness, and many unlikely heros.