Tag Archives: Delayed Gastric Emptying

Finding A Magic Pill.

Good news! Our daughter has mild gastroparesis or delayed gastric emptying and no signs of coeliac disease or diabetes…phew! She has been prescribed periactin, which as far as I can see through a quick Google search, can stimulate the appetite in underweight people. I am also looking at her diet to boost her intake and she’s also having a food replacement drink.

So it’s looking like I’ve got all the bases covered…including having to grind up the tablets at the moment. She had a really good try at swallowing it but she just couldn’t even swallow half or quarter of a tablet. I was like this as a kid myself and I remember my poor mother grinding up tablets and mixing them with honey. It seems what goes around comes around.

I don’t think we could have had a better outcome from yesterday’s appointment. I was stoked, relieved, so very thankful and would have been doing the Happy Dance if I wasn’t feeling physically and emotionally drained. I still feel like I’ve been runover by a steamroller or squashed by that very heavy, metaphorical elephant. It was a long day and I did the 1.5 hour drive home admittedly via the deli in Wahroonga where I procured some top shelf gourmet mental health food: Double Choc Brownies and a gooey cinnamon bun. Cinnamon scrolls are a rare breed in Australia or at least gooey ones like this are. Wow, it was good!

Driving home, in some ways, the whole scenario felt like a huge non-event. Oh! It’s just mild gastroparesis and we were told there was essentially nothing they could do to treat it but we have this pill. Yet, this doesn’t negate that she’s underweight, a picky eater and was once again feeling sick after breakfast this morning. It doesn’t cancel out the extreme stress we’ve had with a child who can’t or won’t eat and ends up with low-blood sugar and gets cranky. I’m sure this isn’t going to magically go away by just clinking my fingers, either and it hasn’t!!

My kind of journey: time traveling back to the 1970s with Qantas flying over the Sydney Harbour Bridge.

My kind of journey: time traveling back to the 1970s with Qantas flying over the Sydney Harbour Bridge.

All of this is what people call “a journey”. However, when I think of going on a journey, doctor’s surgeries, hospitals, waiting rooms are certainly NOT on my itinerary. No! That’s not a journey. It might have its moments of sunshine but it’s still a perplexing quagmire and “journey” just doesn’t convey the intensity of those moments when bad luck, despair, pain and sorrow converge and attack. The bullets are flying. You’re madly scuttling for cover…any kind of cover just as a bomb goes off. Although you emerge from the battlefield unscathed without a scratch on the outside, you’re certainly NOT at the Teddy Bear’s Picnic either!!

If only life could be a continuous Teddy Bear's Picnic!

If only life could be a continuous Teddy Bear’s Picnic!

Here’s The Teddy Bear’s Picnic performed by Bing Crosby: https://www.youtube.com/watch?v=IrvkHAxnjzI

Don’t get me wrong. I’m as positive and the next person but it is what it is. Even when you come through the battle unscathed, there are still those invisible scars on the inside because you know what might have been. It didn’t happen but you went there in your mind and you knew. You saw. You anticipated but somehow found a U-turn.

So getting back to the elephant in the room…

It’s still with us and hasn’t gone away but it has very much shrunk and I hope become more manageable. As we left the doctor’s surgery, I picked the much deflated elephant off the doctor’s desk and brought it back home and it’s now sitting in my china cabinet alongside my vintage teacups. The elephant in the room is no longer looming overhead and intimidating me like a stand over man. It’s shrunk back down to size and I’m so relieved.

My next challenge after all these tests and appointments, is to convince our daughter that the elephant’s under control or at least will be in time. She is very much in the early stages of coming to terms things and this process is intensified through lack of food. As much as we might want things to go back to “normal”, she needs to be given the the time and space, understanding, compassion and acceptance to deal with this in her own way and I’m pretty sure that once she does that, she will start getting better too!

After this afternoon, I say: “Bring it on!!”

Thanks once again for your concern, encouragement and support. It means the world to me!!
xx Rowena

PS: Bex Powders used to be known as “Mummy’s Little Helper”

Evicting the Elephant from the Room!!

An elephant has been living in my room. It’s never had a name and it’s never shared its story but some time ago, it simply moved in and it hasn’t moved out, rudely bailing me up in my own home.

Ever since, I’ve been feeling like a teeny, weenie, terrified mouse scrunched up hiding in the corner too afraid to come out.

After all, how could a tiny, little mouse ever take on such a monstrous elephant? It wouldn’t even need weapons of mouse destruction. It could just sit on me and I’d be flatter than a pancake. I doubt you’d even find my shadow.

Obviously, confronting an elephant is a serious consideration and not something I’d file as an “irrational fear”.

However, costs are mounting and I simply can’t afford to indulge its freeloading consumption any longer. That elephant has to go and I will do whatever it takes to get it out!!

For many years now, the elephant in the room has been my auto-immune disease, which is inconveniently known as dermatomyositis. That elephant moved on now that I’m back in remission. However, as we all know, elephants are very sociable and have fantastic memories. So once you’ve entertained one elephant, word gets around and another one quickly takes its place. You don’t even need to serve peanuts.

While having your own elephant might seem amazing, they’re actually very hard work. It might be fun riding an elephant to work or using it to clean the car, water the garden and even to do a bit of heavy lifting. However, take a serious reality check. Elephants are actually seriously high maintenance!

After all, elephants not only eat and eat and eat and eat. What goes in, must come out.

Talking about what goes in, a handful of lawn mower clippings is hardly going to feed this insatiable beast. Elephants eat 250-300 pounds of food per day on average and in a zoo, a typical adult elephant eats 4-5 bales of hay and 10 – 18 pounds, or 4.5 to 8 kg, of grain. Annually, that’s more than 29,000 kg of hay and 2700 kg of feed per animal. Naturally, buying all this food puts a serious dent in your household budget.

An elephant also needs to be bathed and thery don't exactly fit inside your tub!

An elephant also needs to be bathed and thery don’t exactly fit inside your tub!

Elephants also need to drink and in a drought-ravaged country like Australia, an elephant places an enormous drain on your resources. Their daily water consumption is 25 – 50 gallons per animal, or 100 – 200 litres. Let’s hope you’re not depending on a rainwater tank! I wouldn’t like to run into a thirsty elephant on the rampage!

Obviously, just satisfying the consumption requirements of an elephant, even a metaphorical one, takes an enormous amount of effort.

However, that’s only half the story and to be perfectly honest with you, that’s the better end of the story too!

Elephant Poo.

Elephant Poo.

As I said, what goes in must come out and in the case of a herbivorous elephant…out and out and out!!!!!
An elephant defecates from 12 to 15 times a day, a daily quantity of 220 – 250 pounds. This adds up to a yearly quantity of over 85,000 pounds of manure, more than 40 tons per adult elephant. That’s a huge pile of dung in your room and can become something of a Tower of Babel rising right up to your ceiling and you really wouldn’t want to fall in!!

Yet, that’s not all that comes out either!

Elephants also produce huge amounts of methane gas. Properly equipped, a car could travel 20 miles on the amount of methane produced by one elephant in a single day. That also makes having an elephant in the room, a rather stinky proposition, well beyond the scope of even the strongest air freshners. Urgh!

So after exploring the barest minimum survival, “nothing fancy” requirements of that elephant living in your room, perhaps you, like me, can appreciate that it’s time to send that elephant packing.

No more being nice!!

Miss in hospital waiting for her endoscopy. So brave but she also loved having her own remote control TV!!

Miss in hospital waiting for her endoscopy. So brave but she also loved having her own remote control TV!!

The current elephant in our room is our daughter’s health. She is struggling to eat and is seriously under weight. She’s 9 years old and eats less than 500 calories most days when she should be eating upwards of 1,800. Most of the time, she can only eat very small amounts and then feels sick. She also complains about bread and potato getting stuck in her throat and troubles with reflux.

You can just imagine the stress that we’ve been through having a child who doesn’t eat. She’s now 9 and this has almost been going on almost since birth. Well-intentioned multitudes have told me that they’ve never seen a child starve themselves to death but our daughter has certainly pushed the boundaries. It might just be the gastro bug that’s been going round or our increased awareness, but she seems worse over the last couple of weeks and is arriving home from school looking weak and off-colour but perks up with food and will eat something. At the same time, she’s a pretty active kid so it’s hard to understand where she is getting that energy. It’s been very perplexing.

Late last year, we took matters in hand and over the last couple of weeks she’s had a barium meal test, an endoscopy and a tube into her nose to check her throat. She’s been so brave and gone through this with courage and strength but even though I’ve had these tests myself, it’s awful to watch her suffer. My heart aches for her and I just wish I could simply kiss her and make her better! Yet, I can’t and rather than being the strong rock I’m portraying, I want to cry and cry and cry. Crumble apart like sandcastle being swept away by a sea of tears. A bit melodramatic, I know, but she’s my little girl…our princess!

So for us, dealing with the elephant in the room has meant documenting what she eats and after realising how close she is to running on empty, I’ve bought her some medical food replacement drinks to at least try to bridge the gap while we seek answers.

I know I probably should’ve been looking into her calorie intake before, but I’ve been trying to keep this low key. I don’t want this thing to evolve into an eating disorder and I wasn’t sure that teaching a child who doesn’t eat about calories was a good thing. The same goes with getting on the scales. I also don’t want her feeling bad about herself or thinking that she’s faulty in some way. I would love to be thin but the more I look into how she is, the more I’m noticing that she’s becoming like a car running out of fuel. Moreover, I’m also realising that whatever the elephant in the room might be, identification, classification and treatment are beyond my capabilities.

I don’t know whether my awareness has just increased but she’s seemed worse this last week. She’s come home from school really tired and lethargic a few times. Feeling completely confused, stressed and perplexed; I didn’t even know which doctor to call or whether I should go to emergency or what. I’m trying to limit her doctor’s appointments and so I needed to pick the right doctor out of the hat. After flapping around all week and getting some good advice from the pharmacist and some food replacement drinks, I finally rang her paediatrician yesterday. I was trying to get my story out and convey some sense of urgency but didn’t need to. She gave me an appointment this very Monday. The only thing worse than having to beg and plead for an emergency appointment is being offered one. Then, you know that your worries are really something to worry about.

At the same time, I am so relieved!! Whatever we’re dealing with, we are no longer alone. Our concerns are being taken seriously and help is on its way. Our paediatrician really is excellent and I know he’ll help us navigate whatever this is and find a clear path. We are also fortunate to know two people with delayed gastric emptying, who have been very helpful and supportive. I also expect we’ll be seeing a dietician and other health professionals who’ll enlighten us.

I’m sure that now we’re starting to expose the elephant in the room and reveal it’s true identity, it’ll either take off straight away or deflate from a 4,500 kilo elephant into a mouse-sized ornament.
I sure hope so!!

Thank you to all those of you who are supporting and encouraging me through this journey with our daughter. It is much appreciated and reflects so positively on the bonds of friendship forged through blogging and even though we have never met face-to-face, that we are connected, if not becoming good friends.

Love and blessings,

Rowena xx

Sources

http://www.elephantconservation.org/stay-informed/just-for-kids/