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kirtyw

Wait for the Children's or try to go private?

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kirtyw

DS (13) has has digestive problems on and off for years which we have always put down to a family history of irritable bowl and Ankylosing Spondylitis. Both genetically related. HLAB27+. Learning from home and being together so much has really open DH and my eyes as to how often (every few days) and frequently (sometimes every hour) DS needs to urgently go the the toilet. 

 

Fast forward and blood results confirm : Anemia, High Inflammation Levels and NO coeliac.

 

He has been referred to the Children's in Melbourne for further tests. They rang today. Our referral has been received and paper work has been sent to us. Once they get that back there is a 3-5 month waiting list.

 

We have private health insurance. Would you wait or go private?

 

He has been a patient at the Children's as a baby (unrelated to this) and they were just AMAZING.

 

TIA

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Ruf~Feral~es

Is he happy to wait another 3-5 months, or is it really worrying him?  As it's been going on so long, if my DS was happy waiting, I would probably wait.  

Having said that, you might wait 3-5 months for this appointment, and then have to wait another month for ongoing treatment, or another waiting list for another specialist.   So it might be longer all up to get to the bottom of things.

 

Private health cover will only really cover you for in-hospital treatment, in most instances - if surgery is required - not more tests etc.  But in your situation, I would probably go on the  hospital waiting list, and get a private specialist appt as well.  Find out what the private Dr says the options are, and then decide whether to continue treatment privately or wait for the children's hospital.  

You can always cancel the appointment when it comes up - but get on the waiting list now so you at least have that option.

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rosie28

Private health insurance won’t pay for the consult with the specialist or most testing. It will contribute if he requires surgery. I’d go private in the first instance anyway, 3.5 months is a long time to wait, especially if he’s been in pain for years. 

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Meepy

We waited regarding a skeletal issue for an appointment, had the appointment and now are on the waiting list for three other departments.  If I could afford it, we would go private.

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PrincessPeach

I’d see what the waitlist is for private & go from there. Although as everyone has said, your private health insurance won’t help pay for the consultation, it might help out if you need to get diagnostic testing done or exploratory surgery done quicker.

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little lion

I’d go for a private gastro and be asking about inflammatory bowel disease. 

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BusbyWilkes

Most of the gastro paeds in our state work at the children’s hospital and privately. So the quality of doctor is generally the same. If you can afford the out of pocket expense for the initial apt, I would definitely go private. This way, he may be seen before Christmas.

In some states, due to the limited amount of gastro paeds, referrals need to be made by a paediatrician not a GP. Check whether that is the case where you live.

What does your son say about how he manages the frequent toileting when he’s at school? Or Has the frequency only increased since he’s been at home? As PP suggested, inflammatory bowel disease is a distinct possibility with the symptoms and family history of autoimmune diseases. Happy to discuss further via PM if you have other questions.

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SplashingRainbows

Private. But only if you can afford to be out of pocket $1-2k for the process. 

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TheGreenSheep

Both.

Let the public waiting list wait for you whilst heading private.
You’ll pay out of pocket for the consult with a small Medicare rebate. However you should be able to access services privately muuuuuuccchhh quicker. If you are happy with the level of care or investigations stay private. If financially it is quite a strain, ask the private specialist to refer you into the public system, most of them work publicly as well and you may get an appt quickly. 
 

Personally I wouldn’t wait, well my own worry wouldn’t let me wait as your DS is already experiencing debilitating symptoms. All the best with getting to the bottom of it, let us know how it all goes.

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Prancer is coming

I would go private, as long as I could afford it.  This is exactly why I have private health insurance - to avoid long waits.  I am sure I would get great care in the public system, but to get there quickly I would need to pretty urgent.  Whilst your so could probably wait, if he is uncomfortable and spending heaps of time in the toilet, it does not sound like fun for another few months.  And you never know, you may end up with a diagnosis where it made heaps of difference starting treatment earlier rather than later.

 

My child does have coeliacs disease and we had just under a month wait to see the gastro (we got sent to a gastro rather than a paed as no paed gastro available).  She was in pain and it felt like torture.  I could not have waited 3-5 months.

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kirtyw
On 07/10/2020 at 5:46 PM, little lion said:

I’d go for a private gastro and be asking about inflammatory bowel disease. 

Thank you everyone.

 

We have sent a GP referral to a private clinic - fingers crossed we can get seen. The GP suspects ulcerative colitis, so best to get moving.

 

He can hold on, but often spends much of recess and lunch at the toilet (he reports) when at school.  He is definitely there for a long time before he leaves home and the minute he walks in the door.

 

The iron supplements seem to be helping.

 

thank again everyone.

 

 

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little lion

Poor kid. I hope you don’t have to wait too long to see the doctor. Just keep in mind that iron supplements are usually stopped a week or so before a colonoscopy. But I’m sure the clinic will tell you their specific requirements. I’m just mentioning it in case you end up getting a spot on a cancellation list. :) 

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born.a.girl

I had Ulcerative Colitis for nearly 20 years.  (I theoretically no longer have it, but the gastroenterologist insists on calling it 'in remission', however I no longer need colonoscopies without symptoms.

If you are in a position to do so, I'd go private, because my understanding is it can only be confirmed by a colonoscopy (but that was what I was told decades ago).

It worth finding out sooner rather than later, because any treatments he might need for other conditions might have an impact.

In the meantime, the worst things for me were BOTH the hurryups and constipation. They're both worth avoiding if it's UC.

 

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Princessbuttercup

Has he had a stool test done for parasites etc?

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kirtyw
On 09/10/2020 at 10:18 PM, Princessbuttercup said:

Has he had a stool test done for parasites etc?

He has had 2 different round on stool tests. Both times no parasites, no blood. No abnormalities.

His bloods showed anaemia and high inflammatory markers. The test was negative for coeliac's. Though, we have a low gluten diet due to my A.S. being triggered by starch. (wheat and potato). 

 

He seems well in himself. He's definitely not falling asleep after school exhausted. He's still growing. He has thinned out a lot in the last 6 months, but he is 13 years old, just hit puberty, and grown about 7 cm talk in Iso#2 alone. (in an aside, school shoes are not worth buying this year!). 

He's exercising a lot but he's an active kid.  

Got a letter from the children's saying he is on the waiting list and they'll call us every 3 months.

Referral is into a private clinic, and we're waiting for an appointment there too.

 

Thanks again,

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SplashingRainbows

Kirtyw if your son isn’t eating sufficient gluten the blood test will suggest negative.  However that doesn’t mean he isn’t reacting to the small amount he is having. 
 

please ensure you bring this to the attention of the specialists. 

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