It’s no secret I have a love/hate relationship with doctors. (See this, this, this, this and this for evidence.) I’d go so far as to say that if you are a doctor I have dealt directly with, there is only about a 5% chance that I have neutral feelings about you. The other 95% of you, I either love you (as in think you hung the moon, want to bear your children and give you big sloppy kisses) or hate you (as in hope you lose your license and maybe get an incurable case of crabs, oh, and frequent head lice).
I regret to inform you that this weekend I had yet another encounter with a doctor that made me so angry, so sick to my stomach, so disgusted, that my love/hate ratio has been skewed. Again.
And, as if I needed it, I was once again reminded that I – the college drop-out Flight Attendant – know far more than many doctors know about my children’s diseases.
Let’s back up a bit, shall we?
Last Thursday night, Jed had a horrible nights sleep. He woke Darrel up frequently throughout the night with whimpering, moaning, and incessant tossing and turning.
On Friday Jed was whiny, irritable, emotional and a total pain all day long. That night he woke up 6 times throughout the night with screaming, and when he was asleep, he cried in his sleep, talked and mumbled, and was flat-out miserable.
I began to suspect that he was reacting to fructose; he had eaten some kamut earlier in the day, and he had eaten some other questionable fructose foods over the previous two days. Night wakings have not been one of his symptoms, but I wondered if they had become a new symptom.
So during one of his wake-ups I asked him if his tummy hurt. He said “Yes”. (Although it was more like “Waaahh, sob, moan, Yeeeessssss, waaaahhh, sob, moan!”) I asked him to point to exactly where his “owie” was, and he looked at me with an expression on his face that usually means he doesn’t quite know how to answer the question.
So I asked him “Do you just hurt everywhere? From your head to your toes?” And once again, the answer was “Yes”.
I took his temperature, and it was normal. I didn’t know what else to do, so we all just tried to get as much sleep as we could.
Saturday morning he woke up very late, ran up to me and greeted me with the words “Mama! Mouth hurt!”
So I asked to look at the boo-boo in his mouth, and he refused. He giggled and grinned and ran away from me. Then he came running back, asking for a popsicle. So I gave him a popsicle and he ate it while playing on the porch. (Wait until I get the recipe posted – you’ll understand why I’m totally cool with my kiddo eating popsicles for breakfast!)
After eating two popsicles, he refused all food offers we made for most of the day. He instead ate about a box and a half of his safe crackers.
By this point, my fellow FructMal Mama’s had responded to my query that yes, night wakings/night terrors are a common “fructosed” symptom. So I assumed that his bad behavior the day before, his nighttime trauma, and his desire for plain, boring food was simply due to being fructosed. It stunk, but there wasn’t much that any of us could do except ride it out.
Several times throughout the day, he pointed to his mouth and said “Mouth hurt”. And every time I tried to peek into his mouth, he giggled and ran away. He also pointed at random spots on his body and said “Boo-boo”, at one point cajoling me into bandaging four invisible boo-boo’s on his legs! (What is it with kids and band-aids, anyway?)
Finally, at about 5:30 p.m. he – once again – said “Mouth hurt” and I said “OK, kiddo – I’m going to look at your mouth this time!” I pinned him back to the chair, forced his mouth open and used my finger to press down on his tongue, expecting I would see something fairly harmless…like a spot where he’d bitten his tongue or a place where he’d scratched the inside of his mouth or something.
Instead, I said to Darrel, “Oh my God, we need to get him to a doctor NOW!”
His poor little throat was COVERED in pustules, and his tonsils were bright red and swollen!
(And yes, I feel guilty that I’d missed this all day, especially with him telling me about it.)
Did you catch that it was 5:30 p.m.? On a SATURDAY??
We really didn’t want to compound our medical bills with an ER visit, but we didn’t know where any urgent care centers were. So I went to Google, found one, and learned they were open until 8 p.m. So off we went.
They were all SO nice! The nurse was excellent with Jed; got him to weigh himself without any struggle, and even coaxed him into letting her swab his throat right away without batting an eye! I was seriously impressed.
Just a few minutes later, the swab came back as a definite positive for Strep Throat. Happy, happy, joy, joy.
Then the doctor came in to see us. He seemed nice; checked out Jed’s ears and talked with us a bit, just your normal, idle chit-chat with a doctor while you’re being examined. Then it was “Okay, well, he has strep. So I’ll call in a prescription for you. Just the standard amoxicillin, he’ll take…”
Screech! Not so fast, doc!
While I was googled for an urgent care center, I took the time to ask my fellow FructMal Mama’s for suggestions about medicines that were safe for Fructose Malabsorption. I know I can get anything compounded, but the compounding pharmacy is closed over the weekend and I needed to know what the least offensive options were for Jed.
One lady suggested compounding, or getting antibiotic shots. The shots would mean 3 shots to equal a 10 day dosage. We were fine with that.
So here’s how it went:
“Well, actually,” we interrupted him, “that’s not so easy. He has food issues, so regular amoxicillin isn’t good for him.”
“OK, what are his issues?” the doctor asked.
“Egg IgE, MPI, and Fructose Malabsorption.” we responded.
“OK, so he has to avoid any medicines with dairy and sugar.” the doctor said with a grin.
Darrel and I exchanged a look, but said “Yeah, basically. And egg.”
Darrel pointed out that we’d be very happy with just the plain powdered amoxicillin in the capsules, so we could dump out the powder and mix it with water. Jed’s used to taking icky tasting medicine and would actually like that – then he’d get to take a powdered medicine from a syringe just like his brother!
I also made a suggestion. “If you don’t mind, I asked some other moms of kids with FructMal what they would suggest in a situation like this, and they recommended…” and told him about the shots and compounding.
The doctor said “…and the compounding pharmacies are closed on the weekend.” He paused, got a thoughtful look on his face, and said, “Wait right here, I’m going to make a quick call.”
So we all waited, chatting with the nurse until the doctor came back.
“OK, I called the pharmacy and spoke with the pharmacist. She went over the ingredients and says the antibiotic I’m recommending is fructose-free.” reported the doctor.
And here is where we made our mistake. We assumed he had called in plain, powdered amoxicillin for Jed. We assumed that he had been diligent – after all, he’d called the pharmacy!
So we thanked him, thanked the nurses, paid the bill and left.
We drove straight to the pharmacy. We had to wait a bit, but when it was ready, Darrel noticed that this wasn’t a bottle of pills – it was liquid.
So he started a Q & A session with the pharmacist.
They dug out the ingredients list for this particular antibiotic, and no, in fact, it was NOT safe for a Fructose Malabsorbative person! Darrel asked the pharmacist why she didn’t tell the doctor this over the phone, and she told him “I tried to, but I barely started down the list of ingredients before he interrupted me saying ‘That’s fine, that’s good, thank you, bye!’ so I couldn’t tell him all of it!”
Now, here it is: 8:30 p.m. The urgent care clinic is closed (meaning we can’t get the prescription changed). This is the only pharmacy that we know of in town that is still open at this hour – and they close at 10 p.m. We could go to the ER to try and get a new prescription, but if, for some reason, the hospital doesn’t have the drugs to give us, we will not have a pharmacy that can give us medicine for Jed (and we’ll be out an additional $250).
Basically, we’re screwed.
An arrogant man who refused to listen to a pharmacist or the parents put us in the disturbing position of having to give our son a necessary medicine that will simultaneously make him sick.
And there was really nothing we could do about it.
So we took the medicine. I’ll call our pediatrician this morning and see if she will write us a prescription for the compounding lab, so hopefully we’ll only have to give him 4 doses of this horrible medicine. Hopefully, that won’t be enough to make him react.
Beyond that, I read the ingredients in this medicine and have to say, thanks to FPIES Eyes, there’s NO WAY I would ever willingly give this to my children!
When I highlighted the ingredients that were problematic for Jed in the previous picture, I thought I would also make another picture that highlighted the ingredients I found concerning in general…then realized it would be easier for me to highlight the ingredients I didn’t have a problem with! See?
Food dyes. Natural flavorings. Methyl cellulose (corn). Artificial flavorings. Methylparaben. Are you freaking KIDDING ME?? They give this to CHILDREN??
SO. Lessons from this experience?
Even when my “gut instinct” alarm isn’t going off (the doctor was nice, comforting and didn’t set off any alarm bells – honest!) I need to push for total clarification of every single detail about my children’s medical issues to avoid ignorance becoming a danger.
No one knows how to take care of my children better than I do. No one. I am the expert in my children; I know what their issues are, I know how to find the information I need to know, and I know the places danger lies in our world.
No doctor, no matter how knowledgeable they may be, is as dedicated and well-versed in our particular issues as I am.
And I dropped the ball on this one. I’m supposed to be Mama-Bear, Medical Advocate Extraordinaire. I let down my guard for one medical encounter, and my son is now being hurt by the medicine that is supposed to help him.
Please say I’m not alone in this: tell us about an encounter you had with a well-meaning but uneducated doctor regarding your kids!