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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 #4 – Procedure Day

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Friday, 12 September 2014: One Year, One Hundred and Sixty Four Days Old.

Ayla had her investigative procedure today, to check out her entire digestive system.

The procedure required Ayla to fast from 7.30am, so by the time Ayla went to get ready for theatre at 3.00pm she was hungry, thirsty and tired.

I went in with her, suited up in a white robe and a fancy blue hair net, and held her little hand and brushed her hair while she breathed in the gas and drifted off to sleep.

Ayla was under anesthetic for 40 minutes, while her gastroenterological paediatrician conducted a “gastroscopy” and a “sigmoidoscopy” which included a couple of biopsies and another full set of bloods.

Ayla woke up an hour later, groggy and a little upset with a bit of a cough and a husky voice from the oxygen tube. There was a few tears, but as soon as we met her in Recovery, gave her a bottle and sat with her in a rocking chair, Ayla quickly drifted back to sleep.

We were discharged at 5.30pm with test results due back next Thursday. The procedure went well but the doc seemed a little surprised he found evidence of digestive irritation, apart from that there was no kinks, twists or damage to Ayla’s insides.

We now also have to wait for our next specialist appointment, with a paediatric endocrinologist (ie: growth expert), scheduled for 15 October, and for Ayla’s chromosomal blood tests to come back in the next couple of weeks

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Medical Update #3

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Monday, 8 September 2014; One Year and Twenty Three Weeks Old.

We spent another night at the hospital last night.

On Saturday night Ayla developed a medium-high temperature which wouldn’t go below 38 degrees even with Panadol and Nurofen.

Then all day yesterday, Sunday, Ayla’s temperature continued to climb and as it got higher Ayla got weaker, floppier and scarily lethargic.

With no other symptoms apart from having eaten literally NOTHING for three days, my Mum and I made the call to take her back to the ER. While the logicial answer was that Ayla had caught a virus during our Friday night hospital visit, with her lack of eating, aneamia and other digestive concerns we knew we didn’t really have an option but to be safe.

By the time we got to the hospital, Ayla’s eyes were rolling back in her head and her temperature hit 40.5 degrees. When we saw the doctors thier first reaction was also a virus, but without any other symptoms they needed to rule out urinary tract and bowel infections.

I was freaking out. I was so worried that poor Ayla had contracted a bowel infection during her Friday night proceedures and/or I was terrified that the temperature was simply a consequence of Ayla having eaten less than 1000 calories over an entire week, causing her body to shut down through lack of energy.

The hospital was, again, amazing. Unlike the hospital care we’ve recieved previously in our home town, the doctors here were proactive, thorough and vigilant. They asked us to catch a urine sample (which is always fun, luckily I’ve become a seasoned pro at catching baby wee over the past 9 months) and while we were waiting for that they conducted a nose swab to confirm categorically it was a virus.

SIDENOTE: Never before did I know that a nose swab could identify a virus! In all the times I’ve visited doctors and hospitals back home with Ayla, or myself for that matter, no one has EVER suggested a nose swab; prefering instead to wave their hand non-commitally and proclaim “ahhh, some sort of virus”.

Anyway, while Ayla was sitting on my lap naked from the waist down, my mum sitting with a urine sample cup ready in her hand in the chair across from us, we heard a stange noise come from Ayla’s tummy. Then out from her little bottom shot a horrid, watery projectile that scattered for about a metre.

The doctors seemed pleased. To them it looked like confirmation of their virus theory but to be safe and sure they proactively took a sample of the smelly mess. I was mortified, secretly panicking that this new development was a sign of damage from Friday night or that all the stress and impaction over the last four months had finally reached a peak.

I was also worrying about how all this would impact Ayla’s proceedure on Friday. But, after 5.5 hours at the ER we were told we could go home. Ayla had narrowly missed having a catheter inserted thanks to her finally passing urine as the nurse was setting up, and within a few minutes of sending off the sample we had a positive result; no UTI.

While the swab and stool samples will take a few days to come back, Ayla’s temperature had come back down to a managable level after some Panadol and there was nothing more the ER staff could do for us.

It was a sleepless night, and today Ayla is still unwell although no where near as bad as she was yesterday. She’s still has some signs of a gastro bug and is still refusing to eat but the colour is coming back into her face and her smile is returning. I know better than to count my chickens, but thank goodness.

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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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Questions and answers

Monday, 11 August 2014; xx Weeks Old

When I picked Ayla up from day care this afternoon, the Day Care Mum was in tears.

She was crying because she’d just seen Ayla in pain, crying, struggling to do something all other kids take for granted.

She’d just witnessed the reason for the ongoing food diary, the gluten free dairy free diet, the appointments, the tests, the band-aids on her elbows, and she was horrified.

As awful as I felt for her, I was glad that the day care centre finally got to witness what Hubby and I have been experiencing on the weeknights and weekends; our beautiful baby girl in crying pain.

After a bit of investigation I found out that what had caused the Day Care Mum to cry was simply a tiny, tiny part of Ayla at her worst.

What the Day Care Mum saw today did not include Ayla’s cheeks being stained from hours of tears. She didn’t see the vomiting, the eyes rolling back in Ayla’s head or the moments of unconsciousness, all brought on by pain.

But still, the Day Care Mum was crying because what she had seen was enough and she couldn’t stand it. She stared at me in awe and asked me how I do it and I simply couldn’t answer.

It made me look at Ayla’s situation a little differently because I didn’t realise that my strength might be diluting the severity of Ayla’s illness…. Because I am strong and logical, systematic and controlled, maybe I haven’t allowed myself to panic, which in turn drives outcry and action.

So of course, the guilt crept back in and the worry amplified and I found myself back at square one; questioning the doctors and their dismissive solutions for Ayla’s symptoms, but not the cause, and querying the dieticians and their long drawn-out processes of elimination.

I need answers. And I need them now.