The Sick Child vs Modern Medicine

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To a parent, there is nothing worse than having a sick child. The normal colds and childhood diseases are stressful enough, but a chronically ill child is more than many people can handle.

In hindsight, I can explain all the little incidences that cropped up during Cordelia’s childhood. But at the time, I depended on modern medicine to tell me what was wrong, and modern medicine failed. Let’s see if you can figure it out before you get to the end of our story:

I think Cordelia was about 4 when the first notable incident occurred. Hubby and I were both working that day, and Cordelia was cared for by her grandparents. When I arrived that evening, Grandma greeted me by saying, “Let me tell you what we did.” I assumed she was going to tell me they went to the movies, or shopping, or some such – imagine how shocked I was when told that Grandpa had realized his heart medication was running low and needed a refill, so he emptied the bottle into an ordinary drinking glass, which he then put into the kitchen cupboard. Cordelia asked Grandma for some milk. Grandma grabbed the first available glass. Yes, you guessed it – Cordelia ingested Grandpa’s heart medication.

Fortunately, this happened not too long before my arrival, because no one had thought to call a doctor. I called Poison Control, which resulted in Grandpa driving around to several local pharmacies looking for ipecac – wouldn’t you think that would be kept in stock? The ipecac was administered, and the vomiting began. All normal thus far – except that Cordelia could not stop vomiting. We sat her in the tub with a bowl. I called Poison Control, who advised to just give it time. It took hours, but eventually the vomiting stopped.

I don’t know if that incident was the cause of all that followed, or whether it was merely an indication that there was an underlying condition that should have been attended to.

When Cordelia was 8, she got the flu. She could not stop vomiting. Being a stupid young mother, I let it go on for days and finally realized she was sleeping a lot. I thought that was good – she wasn’t vomiting while sleeping, right? I was too inexperienced to know that excessive sleeping after a bout of sickness could mean severe dehydration. When she slept through the evening and into the next morning and then woke up vomiting AGAIN, I called the doctor. This resulted in Cordelia’s first hospitalization. She was put on IV fluids and kept overnight.

After that, every time she became ill, she would experience uncontrolled vomiting, and each time she had to be admitted to the hospital. A normal case of chicken pox resulted in her being quarantined in a hospital room for several days. I’ll never forget the poor father who saw me step out of the doorway marked “QUARANTINE” and grabbed his child away from me for fear she would contract some horrible incurable disease. I tried to explain it was just chickenpox but he didn’t believe me.

The hospitalizations became more frequent and lasted longer. She was getting sick every couple of weeks. I kept an overnight bag packed at all times. At one point, Cordelia got sick and I called the doctor, apologizing. I said I didn’t want him to think I was an overly protective mother who called every time her kid got a little bug. His response was, “In her case, I think you should call.”

It was so bad that when Cordelia started vomiting, her younger sister started crying – because she knew Mom would be going away with Cordelia for a couple of days.
And the absolute worst was the day I had Cordelia in the tub, washing her prior to taking her to the hospital. She looked like a starving child from Biafra, and her skin was so hot that when I touched her, I felt repelled – immediately followed by “This is my child, my baby – how could I feel that way? What kind of mother am I?”

As the course of Cordelia’s illness continued, I began to doubt my abilities as a mother. How could a child become ill so often? What was I doing wrong? It didn’t help that one of the pediatric nurses accused me of Munchhausen by Proxy Syndrome. I had to look it up, at which point I began to doubt my own sanity. Was it possible that I was somehow deliberately making my own child sick just to get attention from medical personnel? Could I be doing something so horrible without knowing it?

Tests were done – xrays, ultrasounds, MRIs and an EEG (I insisted on being in the room for the EEG – Cordelia slept through it, but the strobe lights nearly made me throw up). A psych consult was ordered (for Cordelia, not me, and it came out normal.)

Cordelia’s vomit began to show flecks of blood. The doctors said not to worry.
During her 11th hospitalization (Cordelia was 10), she suddenly started vomiting fresh blood. The floor resident had to lavage her – twice (pump water into her stomach and wait for it to come back up clear – I can’t imagine what that must have felt like).

The next morning, our regular pediatrician arrived for rounds, and I totally lost it. The poor man stood silently for at least 10 minutes while I ranted about the inadequacy of Cordelia’s care, ending with, “That blood has to be coming from somewhere!” The pediatrician put his head down, and then responded, “You’re right, and we’re going to get to the bottom of this.”

Finally, a GI consult was ordered. The GI doctor arrived with an attitude – he couldn’t believe he had been called in simply because a kid was throwing up. As he entered the room, Cordelia held up both hands, with the fingers flexed backwards. I sighed and said, “She swears she’s not doing that.” The GI doctor’s attitude did a 360 degree turn, as he replied, “She’s not, she’s throwing potassium.”

An endoscopy was performed, and afterwards, the GI doctor had me escorted right into the procedure room, where Cordelia was still lying unconscious on the table. The doctor was at a computer, and had pictures to show me. Cordelia had several ulcers in her esophagus, which in the doctor’s opinion were “very, very bad.” Aggressive treatment was to start immediately, consisting of Zantac, Reglan and Prilosec.

Later that evening, Cordelia began to hallucinate, and I called the nurse in. It turned out that the floor resident had miscalculated the dosage of one of Cordelia’s medications, and had prescribed 10 times the amount she was supposed to get! Fortunately, there was no apparent damage caused by the error.

Cordelia began to heal, and that GI doctor became my favorite person in the whole world.

Was the ordeal over? Not quite yet. There were a couple of subsequent hospitalizations, but essentially she continued to improve. The school nurse was a saint who managed to keep the medication schedule (each drug was to be given at a different time).

So, what was the final diagnosis? Have you guessed it?

Gastroesophageal reflux disease (GERD)

These days, we all know what it is, if only from all those TV ads for Zantac and Prilosec. Back then, I’m not sure that Prilosec was even recommended for pediatric use.

Why did I not see the signs? Too many of Cordelia’s vomiting episodes seemed to start after her favorite meal of spaghetti, juice and chocolate cake. Or, did it all start way back when she accidentally drank Grandpa’s heart medicine? We’ll never know for sure.

I’m just glad that the nightmare ended. God bless those parents with an ill child for whom the nightmare never ends. No one should have to go through that.
_________

This was a guest post by Cordelia’s Mom. If you have not checked out her bog at Cordelia’s Mom, Still please do! She is one of the bloggers I have looked up to since I started blogging. I am honored she took the time to share this post over here.

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116 thoughts on “The Sick Child vs Modern Medicine

      • I would have guessed ulcer but at that tiny age I would have thought I was totally wrong and after doctors told you over and over that there was nothing really wrong with all that vomiting, it’s no wonder you doubted yourself! And the nurse who accused you of what I’m about to spell wrong….Munchhausen’s by proxy….close enough…..she should be slapped around a little. I highly respect nurses but that was ridiculous. My little girl’s chronic condition is asthma. She had a very scary round at the hospital last winter because she had gotten a virus and her lungs filled up with goo. Then her airways functionally slammed shut and we had her at her primary care office three days in a row to say…no….guys, her nebulizer doesn’t work. She can’t even lie down. She coughs so hard she vomits. And she can’t stop. And she can’t stay awake. She’s limp. She’s hot. She’s starting to almost pant. “It’s just a virus, Mom,” they kept reminding me. Really? You don’t say. Of course she has a virus, you ding dongs. I brought her one last time into the extended hours of her family practice and got a doc we hadn’t seen before, who said “she’s too sick to be here” and put her on oxygen and an ambulance. If anything, I felt neglectful for not just ditching primary care and taking her to the hospital two days earlier when I thought of it. I think we all just do the best we can. We need doctors but I think they need us too.

        Liked by 1 person

      • Ah, I’ve been there, too, with my youngest. At the tender age of 2, she kept getting “croup” (according to her doctors). Until the day my husband took her to the doctor’s office, and the pediatrician told him, “Why did you wait so long – we don’t like to see them in respiratory distress!” She had asthma and couldn’t breathe – she was immediately put on albuterol through a nebulizer. I was furious with myself for not trusting my instincts that it wasn’t just “croup.” And I was furious with her doctor.

        I hope your daughter’s asthma is under control. It’s terrifying when they have those asthma attacks.

        Liked by 1 person

      • That’s exactly it! One of the doctors declared that she had “croup”…which was ridiculous. He kept looking in her chart and saying he saw no record of her ever having a steroid for that. So he was bad at reading the record…maybe. And then the front desk woman sassed my husband over the phone about how they did not have time to have someone look at the chart for a minute….and I almost came unglued. But whatever. One thing I did learn is that I am more assertive with the physicians than my husband. He goes in there and they say something ridiculous like “croup” and he just nods “okay” and goes and picks up the cough suppressant someone recommended. Then I blow my stack when he tells me what they said. She’s mostly under control. Right now she has a cold, so her treatments are frequent until it passes, and then she’ll get a break again. Good heavens. There are several providers in that office and they’re all great in different ways but for anything related to her breathing, we just work with one of the physicians that appears to have a good handle on her case. Plus, he has a child of his own with asthma so I do believe that gives him a useful perspective. Sometimes, I have started to wonder if they think “Oh it’s them again….” and just think we’re overreacting and bringing her in. That is, until that last episode ending in hospital time. I’d rather tolerate some eye rolling (which I have never seen them do, to be fair) than kick myself later for not doing what I thought was best.

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      • I’ll bet they actually respect you. I’ll never forget the day I called our pediatrician about Cordelia, and as he picked up the phone he said, “Oh, not Mrs. [Cordelia’s Mom] again!” Then he sort of chuckled, because he knew if I was calling and asking to speak to one of the doctors, there really was something wrong.

        Stick to your guns, Mom – you know your kid better than anyone else does.

        Liked by 1 person

  1. There are times when the doctor misses something, but the mother’s gut instinct usually tells her when
    there is something wrong with her child. I am surprised that Cordelia was not ordered to be examined
    by a gastroenterologist way back when. Thank goodness she is better. Great post.

    Liked by 3 people

  2. Why do we, I admit that I have done this on occasion, blame the patient or the parent when we don’t know what is wrong with them? When I start to think that way then I go back to the beginning and ask all the same questions again and forget the working diagnosis which is obviously wrong. As a consultant, I ask my own questions before I read another doctor’s opinion so I don’t perpetuate their biases. I’m sure you do this too Victo.

    Liked by 4 people

    • Absolutely! You don’t want to be the doctor who misses an eating disorder or a case of abuse…. we have all heard or seen those horror stories. Sometimes we jump there before we should, forgetting those cases are really quite rare in the grand scheme of things.

      Liked by 4 people

    • Thanks. In defense of the doctors, however, never once did one of them blame me – it was just that one nurse. Some doctors did suspect a psychological component on Cordelia’s part, and so the psych consult was ordered – if only to help her learn to deal with a chronic condition. The psychologist let me stay in the room, and asked her if anything had upset her lately. She replied that she didn’t like it that all her friends were going to Disney and she wasn’t. (Say what?) I loved that psychologist – he said, “So, your teacher asked who was going to Disney over vacation and everyone but you raised their hands?” Yep, that was it, and it had absolutely nothing to do with why she was getting sick all the time. We moved on to more medical tests.

      Liked by 2 people

    • Having read your work, I presume you get better results with that system than most. My son had learning and motor skill problems. He was assessed by the school psychologist in Grade Two, and a file with his problems and recommended solutions was included with his record. Each year as he graduated up, we would go to parent/teacher nights late in September, to find a complaining, accusing, blaming teacher. We would ask, “Have you read his psych file?” Time and again, the answer was, “Well no, I like to make my own assessments.” So there’s problems, but you didn’t read the file?? When were you going to get around to that, just after he failed?? 😦

      Liked by 1 person

  3. Oh my God, that made me want to cry! What a horrible and frightening experience for a child and a parent. I think that doctors really need to listen when a parent KNOWS that something is wrong. Doctors are busy people, so we need to be forceful advocates for our children, parents, and for ourselves, even when it’s hard. The squeaky wheel can save a life. I’m so glad Cordelia got the care she needed. Thanks for sharing an important story.

    Liked by 4 people

  4. Oh, CM, that must have been so upsetting and frustrating. I’m glad that you lost it on the doctor – that seemed to have driven the eventual solution. It sometimes takes a crowbar to rock them out of their emotionless state. I’ve told doctors about symptoms and because they were unlikely symptoms, I was told I was incorrect in my observations. I actually gave a urine sample once and the doctor told me I must have done it wrong because it showed something he wasn’t expecting.

    Anyway, I’m glad Cordelia eventually found some relief. Dehydration is a bitch. I get it fairly often as a dialysis patient – but when you recognize it early and get some saline IV, it is not so dangerous. It can be deadly if it drags on – but you know that.

    Liked by 3 people

    • Thanks, Paul. In that doctor’s defense, I think he was as frustrated as I was. He was the only one from that pediatric group who made a point of coming to the ER when he heard Cordelia had arrived, so that he could personally evaluate her and talk to the ER doctors. Maybe that’s why I felt safe unloading on him – I knew he was doing his best and would listen to me.

      Liked by 3 people

      • Doctors who actually seek out their patients are rare gems. I have one in dialysis – Dr. Brown – and no matter where I end up in the hospital he comes to visit – ER, inpatient, DIObs, etc. It is great that you actually had a doctor who cared that much CM. I’m so glad that Cordelia got the help she needed.

        Great post . Thanks for sharing what must have been an extremely emotional memory for you.

        Liked by 1 person

      • When I was having unexplained stomach problems (turned out my stomach had been pushed up into my chest cavity after a car accident – ouch), my family doctor came right into the room where I was about to have a diagnostic test done. He happened to be in the hospital visiting other patients and somehow found out about my test. Totally shocked me.

        I’ve had some wonderful doctors. Unfortunately, they all seem to burn out and leave private practice for the VA, or just retire completely.

        Liked by 3 people

      • Yeah, well, in all fairness what they were looking at most likely would not be seen by any doctor in a lifetime of practice. But instead of going WTF? , he went – :You did that wrong. Dipshit. You see, unbeknowst to me radiation treatment had opened a fistula between my rectal stub (disconnected from the colon by cancer operations) and my bladder. It was a small fistula so there was little fluid transfer. However, my colorectal surgeon had done a colonoscopy and had scoped the colon first and then the rectum – checking for cancer recurrence. They use air pressure to move the scope through the folds and turns and when he pressurized the rectal stub he transferred fecal bacteria left on the scope from the colon, into the bladder. We didn’t know that. of course, until about 10 days later I was in ER with a huge fever that would come in waves – 104 F then back down to 98,then up to 105 and back down to 98. They asked for a urine sample and it came out smelling of fecal matter – naturally as it was fecal bacteria. That was when the doctor said that I must have given the urine sample wrong. How he thought I got fecal matter into a urine sample is beyond me. Ha! But if you don’t understand it, it must be the patient’s fault.

        Liked by 4 people

  5. Oh Lord, what a frightening story. I’m so glad that they finally figured out the problem and that it was resolved.

    I have rarely been on the caretaker’s side of an illness, but I have found that I would always rather be the patient than the one who is watching someone they love get sicker and sicker. This was brought home to me just yesterday, when I met a fellow Crohn’s patient. He is 20 and had had it for two years. He described his mother as his “crusader” — finding him the best doctor and figuring out how he could leave home, coordinate healthcare between two cities, and not let his life get off track (e.g. let him go off to college).

    I’m sure Cordelia thinks of you the same way, NCM.

    Liked by 3 people

  6. These sorts of issues are just nightmares for a parent. But you have to be persistent if YOU know something is wrong. I once took my son to the pediatrician three times until I got the one who understood his ADHD and knew that when he was operating at normal speed, he was sick. How terrible to be accused of Munchausen’s by Proxy!

    Liked by 3 people

    • I wondered how many people would remember the pictures of the children from Biafra. I remembered my mother showing them to me when I was a young woman, and telling me how sad it made her feel, and how it made her realize that no matter how tough things were for financially, at least she was able to keep her kids fed. That image stuck with me – and yes, that’s exactly what Cordelia looked like on that day. I hated myself for not being able to do anything about it.

      Liked by 2 people

      • That was very sick indeed! Thank goodness for Cordelia’s life.

        For a long time, pictures of Biafran children were hidden, we didn’t talk about it especially for people that are not from that part. I am from SW. Technology has helped us enormously, lots of them have been posted online now, it has helped many like me realised how terrible it was for children at the time.

        Liked by 2 people

  7. There is nothing worse than not knowing, as you said. It is beyond good news to have a definitive answer at some point. My wife has chronic Lyme disease, which is a dx that is not recognized by the establishment medical community. On top of all that, test for LD are subjective, give varying results and the CDC-recognized dx seems to be arbitrary (must have 5 specific bands on the Western Blot test… If you have 4, no Lyme; 5 including a protein excluded by the CDC in anticipation of the antibodies generated by a proposed vaccine, and no LD).
    LD is debilitating and very difficult to find treatment.
    So sorry for the rant.
    Very happy that your daughter is ok!
    J

    Liked by 3 people

  8. Pingback: Catching up | Daily Echo

  9. wow, what a process you went through. You are a strong mother. Sometimes you have to advocate when the apparent situation does seem to have a simple solution. Health care is not a perfect science. thank goodness for docs like Victo and others.

    Liked by 1 person

  10. Reblogged this on Cordelia's Mom, Still and commented:
    Victo Dolore was kind enough to ask me to guest post for her. Since our readership overlaps quite a bit, you might have already seen this post, but if not, I think you’ll find it interesting. I am a little surprised that so many people have commented – I guess there are a lot of nervous parents out there.

    Liked by 1 person

  11. Wow, so much good stuff in this piece. As you point out, parenting is not for the weak of heart; it is the scariest adventure.imaginable. I am so pleased I waited until I was ancient to invite Kidlet to join us.
    Nurses, well, n the cold days there always seemed to be a judgmental one in the bunch. Thankfully they are receiving a bit more recognition for the work demanding life-saving work they do. They have a great responsibility and rarely do make a difference in health care.
    Why do mothers always get the blame? Mothers with jobs are considered selfish or neglectful of tpheir children; mothers who do not are viewed to be overly enmeshed in the lives of their children. Yet a man, even in a two-father family, would never face such open warfare on what such be a personal or family decision. Being a mom is tough stuff CordeliasMom.
    Thank you for being a role model. I am pleased Cordelia received such good medical care. She surely had a great mom. Can you imagine what would happen these days if the heart medicne calamity occurred?

    Liked by 3 people

    • Thanks for joining us, Candy. I can only be grateful that Cordelia’s condition wasn’t something even more serious, like a heart condition. Never once did I have a fear that she might actually die – some days that was the only thing that kept me going.

      Liked by 3 people

  12. So sorry for Cordelia and mom and what you all went through…it was hard not to turn my comment into a post. My son had chronic digestive pain from age 13. By age 17, we had seen many Dr.’s with no real resolution. He had every possible test, tried many Rx’s, some to treat depression, which was suspected but never diagnosed. A prominent GI specialist finally suggested, off the record, that there are clinics in Mexico that have had some luck with live worms that eat their way through your digestive tract and have been known to provide relief. We walked away. He has modified his diet and found some relief over the years, but at 29, it is still an issue. It is the most frustrating experience to be the parent without answers.

    Liked by 1 person

  13. Live worms? Yuck. I’m glad no one suggested that when Cordelia was having her problems!

    Your son is about the same age as Cordelia. Maybe he had the same, undiagnosed problem. Back then, no one knew what to do about reflux in pediatric patients. Does he have a GI specialist now that can help him?

    Liked by 1 person

  14. So glad that Cordelia is fine now. As moms we all go through this in some form or the other. My son was hospitalized for 2 weeks when he was two, as he was vomiting continuously and had a very bad stomach. So many doctors looked at him and couldn’t diagnose. It was harrowing to have a 2 year old hooked to saline and not knowing what was wrong….

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    • Watching was hard enough, but thinking that I might have somehow had something to do with it was the worst thing I’ve ever gone through. I didn’t know whether I should give her more attention or less, whether I should take her to the doctor or just let her get over it, and I got to a point where I was very carefully monitoring every word I said to her doctors and nurses for fear they would read something into my sentences that wasn’t there. Yes, in the end I was right, but being right definitely wasn’t worth the stress we all went through.

      Liked by 2 people

  15. Pingback: Left Over Articles (9-29-2015) | My Daily Musing

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