photo courtesy of Stuart Miles at http://freedigitalphotos.net
Yeah. We didn’t go on an airplane.
Today we are supposed to be in Atlanta, having follow up appointments with our GI and Allergist.
We are not in Atlanta. We cancelled the appointments.
It was REALLY hard to make this decision. Darrel and I spend our lives trying to make sure our kiddos have the very best of everything: food, education, health, love. So cancelling follow up appointments with our highly sought out specialists seems contrary to all our daily efforts.
Last week, though, after the reaction to the Alimentum, I felt very discouraged. In my dismay, I lamented to Darrel “What are they even going to DO at these appointments?”
See, this time around, we aren’t staying with relatives. So a hotel room was in order. And a car rental. Because we travel on space available flights, we planned to fly to Atlanta on Saturday to ensure we were there on Monday. (In case we couldn’t get on flights Saturday, we still had Sunday to try.)
Add it all up, and the bare minimum cost to us for this medical trip would have been between $660-700, and that’s not counting food for Darrel and Jed (I would have to bring all my own food, of course). In the end, I’m sure it would have edged closer to the $1,000 mark for us to bring the boys to their doctors.
Which, even with me out of work and not likely to be able to return to work in February, we would gladly pay – IF we knew there was some tangible benefit to seeing the doctors.
Darrel agreed with me; we sent an email to both doctors on Tuesday morning outlined the situation and asking them if there was any hope whatsoever of a medical benefit to us beyond “take the vitals, ask some questions, do some blood and stool tests and keep doing what you’re doing”.
Now, I know the doctors can’t absolutely predict what they might do at the appointments; much will depend on the test results, the status of the boys health, etc. In January, however, the GI stated that he preferred to NOT do any invasive procedures unless absolutely necessary.
I was just trying to get an idea of whether our doctors thought a 16 month old with NO safe foods, who hasn’t gained any weight since March, might possibly be categorized as “absolutely necessary”.
Because if there is to be no scoping, no hydrogen breath tests, no testing at all beyond standard stool and blood testing…well, we can get all those tests done here at home and have the results sent to the doctors in Atlanta, right?
It was an awkward position to put the doctors in, of course. However, our finances dictate we exercise prudence in all matters right now; even medical care for our boys.
Wednesday we received a response email from our Allergist (the Rock Star). He agreed we are in a difficult position, but maintained that it is very hard to “tele-diagnose”. He offered a compromise we could live with: get our local doctors to take the vitals, order tests, and confer with him regarding continued treatments/testing/care.
Sounded good to us!
Unfortunately, I had to cancel the hotel room before Thursday night or pay a cancellation fee equal to half the cost of the room. So we waited to hear from the GI.
We’re still waiting; he never emailed back.
So Thursday night, our hotel cancellation deadline looming, Darrel decided that we were not going to go.
Even though we KNOW there are no excellent tests for FPIES, even though we know that many FPIES families have no specialists working for them, even though we know that these appointments would likely have yielded little benefit for us, I feel like a horrible Mother right now.
This decision is hugely guilt inducing for me; but once again, FPIES has placed us between a rock and a hard spot.
We had to weigh the risks and benefits of going to Atlanta; the risk is that we can’t make a mortgage payment if we go, and that we miss out on some vital medical help if we don’t go. The benefit is that we get some vital medical help if we go, and that we have another month of a roof over our heads if we don’t go.
Since it seemed likely we wouldn’t actually get any vital medical help, the decision is eminently logical.
Mommy Guilt doesn’t work on logic.
So, I’m feeling pretty crappy right now.
However, today WILL see us visiting a doctor. Zac’s cold is not clearing up, and I felt a steady wheeze in his chest all day yesterday. So we will be visiting his pediatrician today to see what’s going on with him.
I’m certain he will be labeled Failure to Thrive.
I wish FPIES would go away.
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Please say I’m not the only Mama who’s had to make these kinds of impossible decisions regarding their kids medical care! What tough calls have you had to make?
I about had a nervous breakdown trying to find specialists within driving distance that also took our insurance, but luckily the ladies on the FB support groups pointed me in the right direction. I was about to have to do the travel thing to CHOP if not, and the expense would have been prohibitive for us too. I really don’t think you should feel guilty. You are doing your best. That’s all you can do. It’s not going to help any of you to get behind on your mortgage, either. Hang in there!
I love the ladies on the FB groups! They’re amazing! So glad they were able to steer you in the right direction; traveling for medical care is lousy. You’re right; we need a roof over our heads just as much as we need medical care. I hate the rock/hard place FPIES dance, don’t you? Hugs!
Thank goodness I haven’t had to do this with the kids. Just myself.
I’m sorry you’ve had to do this for yourself, but I wish so much that I could do this for me and not my kids. 🙁 It’s just hard, isn’t it? How are you doing?
We’ve been through it! We still don’t have a diagnosis for our 29mth old daughter. We’ve been through dozens of doctors with no success. Her GI is great at managing her care but he keeps referring us to allergists who blow us off. We aren’t in a position financially to travel to country for them to either do nothing, or redo all of the tests we’ve had done multiple times times over. I feel badly that you have guilt but as you said, guilt doesn’t follow logic. If it gives you any bit of relief, I think you did the right thing.
Thanks, Angela. 🙂 I’m sorry you’re struggling so much with your doctors. I hope you can find someone to take you seriously soon, though I know you’re doing a great job for your daughter without an allergist! Hugs!
I think what you did totally makes sense. I would say you are a smart mom and this doesn’t mean you have given up by any means, it means you are saving your money for someone who will actually do something more to get to the bottom of all of this. And if your doc’s really care about your son and all their patients and families, they can communicate and give orders by telecommunication these days and work through your pediatrian. We are currently doing this with my mom. She has a very rare type of cancer, and she went for a specialized tx that they offer over in Switzerland, not yet approved in US. We have 3 hospitals communicating with each other, 2 in the US, and one if another country. Yes, it does take some work on our end, to make sure information gets passed along, but it is definitely a doable thing.
Oh, wow, Deborah! I’m sorry to hear about your Mom. How is she doing?
Yes, I’m hoping our GI gets on board with trying to do as much for us long-distance as possible. If the test results warrant it, we’ll gladly fly out there. Until then, though…here’s hoping. :-/
Thanks for the encouragement. I’ll pray for your Mom!
Sometimes just the fact that you are feeling the mommy guilt is THE sign that you don’t deserve to be guilt-tripping yourself. You have researched so much and are making a tough decision — but it is a very informed tough decision. And I hate the phrase “failure to thrive” because it scares me. I’m sorry you may have to hear that phrase. Hugs from Texas.
Thanks again, Rebecca. You’re always a good reminder to take it easy on ourselves as Moms. 🙂 I had some good news at the doctors office, though – turns out, Zac is NOT failure to thrive! So, that’s great for us! Now to work on that mommy guilt that keeps sneaking up on me…LOL
Hi Carrie,
I found your blog today through Money Saving Mom. I read about your son with Fructose Malabsorption and my ears instantly perked up! I have a 9 year old who is the size of a 5 year old. I nursed her for 18 months and she was 75-95th percentile. From 18 months – 3 years she dropped completely off the charts (well around 3rd percentile) and has been there ever since. She has grown approximately 4 inches in the last 5 years, and gained 10 lbs in the last 6 years. She has been tested for everything under the sun by GI, Endocrinologist, Allergist, Geneticist, etc. Full DNA karyotype and microarray analysis (I can sympathize with the pain of repeated dr visits where you learn nothing!), thyroid, and even things like cystic fibrosis. All with a normal result. She has a low GI motility, and has struggled with constipation (she takes 1 tsp Miralax daily, not that I like it, but its necessary) since she was a tiny baby. She has gas, bloating and stomach pain – she still has that “baby” belly and it makes her very self-conscious. She had severe reflux as an infant and we were on multiple meds plus an apnea machine. She has been diagnosed with Failure to Thrive, but her body is in proportion to her height and skin, hair, muscle tone are good and don’t indicate severe nutritional deficiencies. She has pneumonia and we are currently having pneumonia at least twice per year. Anyway, not to bore you with my issues, but does this sound anything like FructMal? Any advice? Think I should ask for a test? It hurts my heart for her to feel bad about her small stature….
Thanks!
Ashley
Oh, Ashley…what a story! I’m so sorry for you and your poor daughter! Well, I’m glad you found me; it definitely sounds like something is ‘up’ with your daughter and I wouldn’t say FructMal is a likely contender.
If I were you, I’d ask my GI for a Hydrogen Breath Test – and ask him if they do the Methane Breath Test as well. Some people, for whatever reason, blow methane when fructosed instead of hydrogen; the combo test will check for both.
If it’s too hard to get a doctor to help, you can always put her on a fructose elimination diet and see what happens. If it IS FructMal, she’ll start to show improvements right away. Though, with her age and possible poor health, it might take a few weeks to see drastic improvement. After that, just reintroduce foods a few days at a time and see what happens.
Obviously, I would recommend a food and symptom journal to help track down what her food is doing to her body. If it isn’t FructMal, the journal will help suss out the true cause.
I’m so sorry your sweet girl is suffering like this; hopefully you can find some good answers soon! Feel free to email me if you want to chat further. Mama (at) cradlerockingmama (dot) com.
Hugs, Ashley!!