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Medical Update #5 – More Results, No Answers

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Thursday, 18 September 2014: One Year, One Hundred and Seventy Days Old

It’s been a nervous wait the past few days, wondering what today would hold.

I didn’t have high hopes for an answer to Ayla’s problems, but I was dreading an complete absence of possible next steps that would leave me back at square one with only google and peopel’s theories to get me by.

But, the doctor was wonderful, again. Clear, precise, caring and to the point. Here’s what he said;

RE: Failure to Thrive

The procedure on Friday proved that Ayla’s Failure to Thrive is NOT a result of digestive issues, although he definitely concedes there is something wrong with her growth (Ayla’s only grown two centimetres in the last 9 months and she weighs even less now than she did back then. FYI – she’s now 17.5 months old). According to the doctor Ayla’s digestive system is working correctly and shows no sign of damage, meaning that her Failure To Thrive is not due to an inabilty to absorb nutrients from food. This supports his comments around Ayla not actually looking like she’s malnourished; Ayla is perfectly proportioned, just miniature in size and not growing. These findings have also confirmed that the Paediatric Endocrinologist we’re booked in to see in mid-October is the best next step for us because apparently she will be able to conduct tests that look specifically at Ayla’s size and growth as a primary concern.

RE: Lack of Appetite

The procedure on Friday did show some irritiation to Ayla’s upper digestive system, suggesting that she may be suffering a small amount of reflux. While Ayla’s reflux is far from severe and virtually insignificant, the doctor has prescribed some anti-reflux medication for us to try over the next month. He hopes that by addressing even the slightest discomfort brought on by food, Ayla may regain confidence in eating and thus rediscover her appetitite. He said it’s an unlikely long shot but something we should try anyway.

In the meantime, the doctor has also given us some gluten-free-dairy-free-anti-alergen baby formula to try. The formula tastes pretty bad apparently so he’s asked us to try Ayla on it first. If she accepts it he’ll write out a prescription for more (at $40 a tin!) so we’ll at least know she’s getting the calories she needs regardless of how much, or little, she actually eats.

RE: Constipation

We have been instructed to maintain the daily laxatives Ayla is taking, which remains at the same levels recommended for a six year old. The Doctor was concious of the trauma Ayla’s constipation could cause long-term if we stop, and he feels that the issue will resolve if Ayla’s diet improves ie; the small amounts of food Ayla actually eats at the moment are probably not providing her body with the full range of things it needs to create normal bowel motions. He also believes that we should address the growth issue as the number one concern and hopefully in identifying/rectifying that, the rest will be easier to treat.

So that’s it for now. We’re trying to get a plane ticket home as soon as possible so that we can return to normal life for at least a few weeks before heading back here again for our mid-October appointment and subsequent tests. I’ll keep you posted….

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Medical Update#2

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Saturday, 6 September 2014: One Year, One Hundred and Fifty Nine Days Old.

My Mum (who Ayla and I are staying with) and I had to take Ayla to the Emergency Department last night (Friday) suffering another episode severe impaction.

While this situation was not unusual for Ayla and something Hubby and I have witnessed many times over the past four months, this was the first time we have actually had a team of doctors recognise that what we are dealing with is by no means “normal”, and understand that no amount of probiotics, prune juice, dietary changes or laxatives are going to fix it.

I won’t go into the gory details of what happened, but essentially the doctors at the ED will write a report to our Gastro Paed explaining what they witnessed and suggest he conducted some additional testing when Ayla has her procedure on Friday.

Ayla list of diagnoses is increasing by the day, but unfortunately there’s still no one answer to link them all together. But we’re getting closer.

I am overwhelmed by the level of care we have been receiving here, interstate. The doctors and nurses are proactive, caring, diligent and committed to their patients, or at least to poor Baby Ayla. I am astonished by the huge variation between the hostpials here and the hospitals in our home city, and I am so very glad we came down here, I only wish we’d done it sooner.

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Getting there…

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Tuesday, 2 September 2014; One Year, One Hundred and Fifty Five Days Old.

Ayla and I had a number of appointments today that, I think, have turned out to be promising.

We met with a gastroenterological paediatrician who has booked Ayla in for an endoscopy, some kind of colonoscopy and bowel biopsies next Friday. He’s also requested new stool samples to test for a greater range of parasites, and will conduct some further blood tests while Ayla is under anaesthetic.

He doesn’t necessarily feel they will provide us with a cause, but it will certainly rule out any ongoing medical conditions that are causing Ayla’s problems. He is also referring us to an endocrinologist who can investigate Ayla’s growth concerns.

We also met with an Integrated Medicine doctor who’s prescribed a number of supplements to increase Ayla’s appetite, encourage better bowel function and replace essential microflora that’s missing from her gut. This activity will accompany the already prescribed baby biotics, bile salts and enzyme replacements by our dietician, and we’ll be able to get started on them almost straight away.

Thirdly, Ayla underwent some “third generation tens” treatment today to try and increase the function of her nervous system and remove any blockages that could be impacting her bowel. I’d never heard of it before and I’m not 100% convinced in the science but I figured it couldn’t hurt so we did it anyway.

We’ve also been seeing a children’s chirpractor who said Ayla’s pelvis was extremely inflamed, and he’s been treating her L4 vertabrae that incidently pushes on the nerves that go to the bowel. Don’t know if it’s working or will have an impact but it makes sense that we’d do what we can to address this as an easy fix.

So, we still don’t have answers but I feel like we’re finally getting some relevant care and suitable attention. The gastro paed was especially exciting as he was able to categorically rule out a couple of my concerns and he was the first doctor who I actually feel wanted to do something, at least to put our mind at ease.

We still have a decent road ahead but I’m finally starting to feel like we’re on the right path.

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One Way Ticket

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Wednesday, 27 August 2014: One Year, One Hundred and Forty Nine Days Old.

Today was Hubby’s birthday and while we had a lovely morning together as a family opening presents and eating pancakes, the afternoon was marred with pre-emptive loneliness.

Ayla and I flew out today, on a one way ticket. Her stomach problems, slow growth and a number of other concerns are still undiagnosed, and our local doctors and specialists are either as confused as we are, or so far under the pump that they care little about finding a solution.

The treatments we’ve so far been prescribed attend to the symptoms, but not the cause, and the stress of the unknowing and the fear of the what-ifs are taking thier toll on our little family.

So, Hubby and I made the decision to take matters into our own hands and travel interstate to where specialist care is more accessible and attentive.

Hubby will join us later, if need be, otherwise Ayla and I will return in a week or so, hopefully with a diagnosis and a cure.

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All clear

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Thursday, 1 May 2014; Thirteen Months Old.

Ayla was given the all clear for measles today.

I wasn’t surprised because Ayla’s hardly seemed sick at all, apart from the rash and it’s itchiness.

Ayla was diagnosed with, wait for it, a “virus” and my theory is that it is actually Hand Foot and Mouth, which is going around at her day care centre, but for some reason it’s presenting strangely on Ayla.

Gosh, all this sickness has been stressful; not just because I hate seeing Ayla sick, and not just because my grand plan of returning to work with gusto has been shattered, but all the not knowing and speculation about what could be wrong is really taking it out of me.

As an anxious person it takes every fibre in my body to stay calm and keep on top of the what if’s.

I try my best to stay away from google… but it’s hard. And it seems as though everyone I speak to has a new suggestion I hadn’t yet considered and I find myself returning to the drawing board again and again.

Ultimately, I have to just focus on Ayla’s level of sickness and fortunately in this case it’s low.

Sure the rash is itchy and unsightly but Ayla is still happy and playful, chatty and curious, so I guess on the scale of things we’re good.

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Diagnosis

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Saturday, 29 March 2014; Three Hundred and Sixty Two Days Old.

Ayla had a restless night last night and although she hasn’t had a fever since yesterday, this morning Ayla’s stomach was still upset and she was miserable.

Considering this is Ayla’s eighth day of being sick Hubby and I decided more need to be done than simply sitting around waiting for ‘it’ to ‘pass’.

So at lunchtime we demanded to speak to a paediatric supervisor to try and get some answers.

When the paediatrician came to see us she said that Ayla’s urine results had “only just literally come in that second” (conveniently) and that it was riddled with bugs.

I’d had a sneaking suspicion for a few days now that Ayla might have been suffering a UTI but the doctors kept telling me “not to worry” about catching a sample because it was probably only gastro.

Lucky I persisted.

Apparently Ayla’s UTI has stemmed from having had gastro in Thailand, which created the perfect environment for the e-coli bacteria to spread.

Ayla was immediately given the first dose in a seven day course of antibiotics and we waited at the hospital to see how her body would cope.

Ayla took the antibiotics like a champ and managed to keep it all down, so after a second dose at 7pm this evening we were sent home on ward leave.

Ward leave isn’t exactly discharged though… It means we are still awaiting final urine results tomorrow that will confirm if the generic antibiotics Ayla’s been prescribed will kill the particular bug she has.

It also means that if anything happens overnight we can go straight back to hospital and bypass the emergency room.

It was SO good to get Ayla out of the hospital, and out of that damn isolation room!!

Ayla seemed excited to be home too, crawling straight over to Cat Cat for a pat then off into her room to reacquaint herself.

I decided to treat Ayla to a special homecoming supper to celebrate so I put her in her high chair and presented her with a fresh strawberry and some chocolate custard.

Ayla was a sticky chocolatey mess in minutes and it felt good to have my little girl back!

If all goes well tonight Ayla could be back to her normal self by as early as tomorrow and if not well, lets not worry about that just yet.

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F.O.M.O.

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Wednesday, 2 October 2013: One Hundred and Eighty Four Days Old.

A friend diagnosed Ayla with a FOMO today.

FOMO = Fear Of Missing Out.

The diagnosis came today during a working bee at our unit.

Ayla had been late to bed the night before, and up early with us to get started on reno’s.

So understandably she was tired.

But when nap time came I put her in her cocoon, fed her, and put her to sleep in her bassinet in the bedroom, complete with a mummy-smelling blanket, just like always.

But uh-ah, Ayla refused. She could hear all the activity and excitement going on in the house and she wanted to be a part of it.

Even when I tried to rock her to sleep in my arms Ayla lifted her neck and fixed her eyes on something, anything, to keep her eyes open and sleep at bay.

Ayla was happiest in her bouncer, playing with her toys and joining in the conversation.

But if we accidentally changed rooms without taking her, even if only for a moment, she’d let us know!

The poor darling must have been so tired but Baby Ayla didn’t complain.

To her, it seemed tiredness was a small price to pay for a fun and interesting day.