Hunting for a diagnosis is frustrating and all-consuming for parents who have children with medical conditions. Often parents “know” that there is something wrong with their child, but finding the right medical professional or specialist to listen can seem impossible. Thankfully this mom, a friend of mine, listened to her gut and kept searching for answers, even when her “trusted” pediatrician gave her false reassurance.The doctors in that practice completely failed us! A #Mother hunts for a #diagnosis! #MedicalMom Click To Tweet
Ten things other parents need to know about Minimal Change Disease & Hashimoto’s Hypothyroidism:
- In hindsight, my child’s symptoms were: pretty typical to the diseases she had. The pediatrician at the time chose to diagnose her based on the most common thing it could be rather than testing for the most serious and working backwards.
- I understand thyroid and kidney issues can be rare in young children but a simple thyroid blood test should have been done especially with my health history and the symptom of her hair falling out.
- Also with the facial swelling a very simple urine dip stick test should have been done and they would have immediately, within 10 seconds have seen her protein levels were off the chart.
- The specialist who helped us the most: our Nephrologist (kidney doctor) Dr. C. He was so sweet and calm and explained everything in detail. He would spend at least a 1/2 hour with us at each appointment so I could ask as many questions as I needed and didn’t feel rushed, he was always on call and only a phone call away and he’s truly passionate about his patients.
- When my daughter had the stomach bug and lost too much oxygen and fluids and needed to be taken by ambulance down to the hospital from urgent care, he stepped in immediately regardless that at the time the kidneys were testing ok. He had us pre-admitted and a room waiting for us and took her case on himself. He also was on top of keeping our pediatrician and endocrinologist in the loop and I never had to ask him to forward records over.
- Another huge thing, his staff is amazing! Always on top of everything from labs, appointments, me calling stressed out with a relapsing kid ~ to hear the compassion in the front desk guy’s voice assuring me “We got this mama, hold tight” It was amazing! I always got a call back within the hour. I wish I had this from my own doctors and their staff. And his bedside manner was wonderful. Very loving and sweet to my daughter.
- The specialist we didn’t expect to need: The allergist/immunologist. I really thought my daughter had these separate issues: thyroid and kidney. To discover a lot of it was caused due to auto-immune issues, and just weak immune system surprised me. It’s crazy to see how much can be learned from an immunologist lab work up.
- Thankfully he also diagnoses and treats allergies and asthma. Both of which we also discovered she has. Often allergies worsen asthma, and allergies lead to illnesses/colds/viruses, which leads to relapsing for the kidney disease.
- It took us this long to get a diagnosis: 1 1/2 years!!!! Her old pediatrician told us her hair was falling out because she was pulling it out, her mean outbursts were behavioral issues and told us to go to Child Find for testing. Words like oppositional defiant were being thrown around and implications of other behavioral issues.
- I knew this wasn’t what was going on though. I did take her to Child Find and she barely passed all the testing but the reality was she was a very sick little 2 year old girl. If you are 2 and sick, what do you do? You misbehave and act out because you feel like crap. She wasn’t able to communicate with her words how sick and awful she felt.
- When nephrotic syndrome set in and she had facial swelling, three times our pediatrician diagnosed her as the run of the mill of what was coming in saying an eye virus was going around. I begged and pleaded something wasn’t right.
- She next had issues of grabbing her privates. I was worried about a UTI so back to the crappy pediatrician we went and they tested her pee and said she had a little protein in her urine but was fine, no UTI. This I thought was weird.
- I googled facial swelling and protein in urine and up came kidney disease. I couldn’t believe with her charts clearly showing a history of facial swelling and now protein in the urine why then and there they didn’t check her kidneys.
- I took her to a holistic lady the following week that did a test on her and she said get kidneys and thyroid checked immediately. I called a new pediatrician went in and told them all this info and immediately he jumped, tested her urine which by now was off the charts with protein and he ran labs immediately. We were called the next day to come in and they recommended we go straight to the ER.
- Due to the initial pediatrician misdiagnosing her for over a year and a half, not only was her thyroid way off, her kidneys too but now also her liver. The initial pediatricians were so negligent in the practice. Over-booked, rushing appointments and obviously not reading charts or prior history before entering the exam room. I hold them to a higher level of accountability because they are peds! They are the voice of our children and the investigators as to what is wrong. I blindly trusted them and I shouldn’t have. An adult can tell a doctor their symptoms, pains and issues, a child sometimes can’t. The doctors in that practice completely failed us.
- The biggest financial expense because of this medical condition is: Initially all the specialist. At $60 an appointment and her being sick all the time bouncing from one doctor to the next that $60 an appointment adds up quickly. Especially if you see two a month plus a few $35 visits to pediatrician & lab work costs.
- The time she went to urgent care for the stomach bug and they couldn’t get it under control. She was sent by ambulance and admitted to the hospital for 2 days. Our portion of the bill was over $3,000. Insane!!!
- She lost oxygen around her heart and needed some medicine to help with that and that one medicine only was $1,200.
- The stress of a sick child is enough to turn a family upside down, then you throw in the financial cost and bills piling up and it just seems unfair.
- The organizations that helped us: I found a lot of support and information through online Facebook pages for American Kidney Fund, and use certain autoimmune & thyroid group pages.
- I wish my friends and relatives knew: not to say “Oh she’ll be fine.” It’s come off as very insensitive. I understand most do not know what to say but that is definitely not something a worried mother wants to hear.
- An ear to listen would have been wonderful, or offering to drop off meals would have helped. Or just offer love and prayers.
- Also offering to take us on a trip to Disney while my child is hospitalized is not going to make my daughter better. Yes, someone actually offered that to us, as my child lay in a hospital bed with infectious disease doctors in there trying to test and figure out what made her so sick. And yes she knew my daughter was taken by ambulance to the hospital and admitted. It was so offensive and umm no a trip to Disney wouldn’t fix our sick child or make all her health issues go away.
- Our ray of hope: Our ray of hope actually came after our darkest time. When our daughter was sick from the stomach bug and was hospitalized, her kidneys started dumping protein. She was just so sick that we knew this virus would cause her kidneys to relapse and we’d be on oral steroids again for months trying to get everything under control.
- To our surprise though at her one week follow up after hospitalization to check her kidneys & to decide if oral steroids should be started, there was no protein in her urine and she looked ok. The doctor called it a spontaneous remission. This was such a ray of hope for us because it showed us that even after being so sick and leaning towards relapse, her body fought back and her kidneys were able to on their own go back to functioning properly.
- We knew at that moment that there was hope that our daughter would out grow this disease and would get stronger. Sometimes through the darkest storms there is a rainbow at the end.
- Our biggest cheerleaders and supporters: My sister probably because she’s a nurse so she was a wealth of information and because she’s my best friend. Also a few close friends.
- I lost a few friends by having a sick child. Some people are surface friends. I am new to that. I thought if you are friends you are friends through good and bad. That’s what friends are for but I sadly found that some don’t like stuff when it gets real. They don’t want to feel things, or acknowledge worry and they are too selfish to support others. I am so thankful for the true friends during that tough time and am thankful the bad ones showed their true colors and are gone from my life.
- Also the Warrior Moms has been a wonderful support group. They are the bravest women I know and our hearts all beat the same. We know what it’s like to face health issues with our children and just one look and you know they get everything you are going through.
- I also want to say my husband. He always said “we got this, it will be ok and we will get our daughter better”. His faith in me to care for her and his drive to work so we could take her to any specialist she needed to see got us through so much. I can’t imagine where we’d be if we weren’t on the same page and loving and supporting each other.
- I wish I had known: to listen to my mommy intuition sooner, in my heart I knew she was very sick, I just didn’t know with what. I got bullied into thinking my child was possibly on the spectrum or had behavioral issues. I’ve worked with children for years and taught autistic kids to swim when I was in high school. I don’t know why I even went to Child Find. I should have listened to my gut and switched pediatricians at that time.
- I also wish I knew what a roller coaster ride it would be. And not in a fun way. Having a sick child takes you on this ride you are not ready for and you haven’t even buckled your seat belt yet and it’s off throwing you and your life into complete chaos and worry. When you are scared to death and reach the top and make your way back down and are ready to get off the crazy ride you are so happy and over joyed thinking you have things under control and your child is better. Only to face the sad reality that the roller coaster is coming for you again to take you on another ride.
- You cringe when people ask “How is she doing?” Because even though she may be fine you know not to say those words. You’ve said them before only to jinx yourself by having your child become sick the following week and around you go again on that crazy highs and lows of the roller coaster.
- Life stops and goes with that ride and so does your sanity a little. You live in the bliss of healthiness only to have it taken away from you and back on the rushing ride you go. Heart pounding and unable to breath until the ride once more comes to an end.
- My prayer is that this ride slows down and it’s reconstructed. The crazy turns and up and downs are gone and replaced with one slow steady peaceful ride and that one day it’s so slow it doesn’t go any more and we walk away from that ride but we walk away more alive, more appreciative for every blessing we have in this world and with more compassion in our hearts to help and love others around us.
… and with those words I am going to thank this mom for sharing so openly. Please do me a favor and share this with someone you know who may be going through the same: whether the symptoms are the same, or the situation of being “bullied” into believing something ELSE is wrong with your child.
As always, remember that these posts are NOT meant to diagnose or treat anything, not even a hang nail! These posts should never take the place of a visit with a medical professional. They ARE however, meant to offer support – and lots of it!
Don’t miss any of the other articles in this series. We address a multitude of medical conditions.