Stomach problems… Wait, what?

Posted by Karen - July 16th, 2017

A few years ago, I started hearing about belly issues in the FOP community. Random things, so it seemed – this person digested food too slowly, that person had frequent nausea, the other person had acid reflux… I wondered whether this might just be coincidental – surely this stuff had nothing to do with fibrodysplasia ossificans progressiva? FOP is all about soft tissue swellings, bones, and progressive limitations. Additionally, stomach issues aren’t really documented anywhere in the literature (at least, not that I had seen). Well, I thought, whatever the reason, luckily this wasn’t something we were dealing with – Miranda had a “good stomach” and was rarely ever sick.

However, although I didn’t realize it at the time, things started to change – ever so slowly – about a year or so ago. Once every 3 or 4 months in 2016, Miranda would wake up very early in the morning and start gagging. She couldn’t eat anything, and would spend the whole day in bed gagging up saliva/mucus and stomach bile (no actual vomit, since there was no food in her stomach). Then, she would inevitably be better the next day… I always chalked these episodes up to gastrointestinal viruses which were making the rounds – hey, lots of kids in her class were out mid-winter with “24 hour stomach flu”, so surely that’s what it was. Anyway, when it only happened 3 or 4x per year, it wasn’t a big deal and wasn’t something to be concerned about. Also, I mentioned it to her paediatrician, and he scheduled a GI study with barium swallow – it turned out to be negative for any intestinal blockages, so all good.

Then in January of this year, Miranda’s left leg started to flare. A rotten, evil, and extremely painful FOP flare-up started in her knee, and over the course of the next several months, that flare-up travelled up and down her leg from location to location. Finally by April-ish, it reached her hip. She started having lots of pain in the hip and upper thigh region, and that’s also when the stomach stuff started to increase in frequency. In April and May, the stomach episodes increased to a little over 1 per month. Still, the belly component wasn’t too big a deal.

It was in June that things started going haywire. Miranda started having one of these episodes about every 10 days. Now this was starting to worry us. We sought some medical advice, and got a prescription for Ondansetron, an anti-nausea medication given to people getting chemotherapy. It had ZERO beneficial effect, as far as we could tell. Next up, a friend recommended Domperidone, which is available in Canada but not the US. It too is known to have “anti-emetic” (ie, anti-vomiting) properties. I think it slightly increased the intervals between gagging episodes over the course of the day – or maybe that’s just wishful thinking; I don’t know – anyway, it certainly didn’t solve the problem. Since the sickness was still only once every ten days at that point, we then “crossed our fingers” and travelled in late June to the Canadian FOP Network family conference in Ontario. Sure enough, Miranda had a sick day on the last day when we were supposed to leave. This delayed us a day from flying home.

The last week of June was really bad. Miranda ended up missing school every day that week, because she got sick on the Monday, was feeling better on Tuesday but needed to recover from eating no food the day before, then sick again on Wednesday, and sick again Thursday morning – she didn’t get substantially better until the Friday of that week. Gah… This was extremely worrisome, and culminated in a fruitless trip to BC Children’s Hospital on Thursday (fruitless because the good doctors in Emergency didn’t know what to do or recommend, and besides, M had stopped gagging by the time we got there so didn’t look too bad). That week we tried a couple of things – on the advice of one FOP doctor, we started Miranda on an antacid medication, and we also got a prescription from our paediatrician for Gastrocrom, a medication which is supposed to calm down inflammatory substances in the stomach. Finally, we got medical permission to give Miranda Ativan in case there is an anxiety component to all of this.

Things started looking up… Maybe the meds were working! Miranda did well the first weekend in July and the whole first week, with no problems. But, then it all started again that Sunday. This past week, Miranda was only well enough to attend her summer art camp 2 out of 5 days. SIGH… And she’s sick again today, after being good for 2 days.

Starting in June, I’ve been seeking advice from FOP experts and the FOP community. Since then, I’ve learned that a sizeable minority of people with FOP do seem to have gastric problems, and further, that it seems (at least anecdotally) to be worse in the teen years. Is this because of puberty hormones getting in the mix? Or is it because the teen years is when many people start having the heavy-duty leg flares – acknowledged to be the worst and longest lived flares, probably with the most widespread inflammation? Is all of this also worsened by stress, which has definitely occurred as we moved to a new home in June? I think it’s probably “a little from column A, a little from column B, a little from column C”.

So what’s next? Is the stomach stuff going to carry on with this weird and seemingly random on-again-off-again pattern through the summer? What about into the fall? Will it end when the leg flares start calming down? What are we going to do about school this fall, if this carries on? Unfortunately, there seem to be no clear answer to these questions. We just have to fumble our way through.

Do you have FOP, or a child with FOP, and have gone through something like this? If so, and if you have any wisdom to share, PLEASE get in touch with me. Thanks ever so much.

Miranda and her dad on one of the "good" days recently.

Miranda and her dad on one of the “good” days recently.

PS – Despite all of this, we are still planning to do the Walk for FOP on August 6, 2017 in Calgary. Please donate to our cause. To do so, go to www.walkforfop.com and click on “General Donations”. Or, contact me and I’ll advise as to how to send a cheque. Thanks. 

 

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