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10-12-2013, 04:37 AM   #31
Dexky
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Kerry successfully completed her 2.5 km swim with a 5 min pd.
What does this mean? What was her total time? I couldn't imagine swimming that far!!
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10-12-2013, 05:54 AM   #32
Catherine
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She swum to 2.5 km in 58 mins, 5 mins faster than last year. The course was quite windy this year and weather quite warm at 25C, and water 23C. The water is used to cool the powder station.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
10-13-2013, 08:51 PM   #33
crohnsinct
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O says "OMG!!!!!!!" Open water, windy and no flip turns! That is amazing! Congrats to her!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
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Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
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Calcium
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Previously used: Mtx injections
10-13-2013, 09:25 PM   #34
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Yeah second that ^^^^^
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10-18-2013, 11:13 PM   #35
Catherine
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Kerry has developed a cold sore? under and in left nosal passage and there also appears to be one on the right side on the top of nose.
10-21-2013, 04:55 PM   #36
Catherine
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Sarah's GI response was yes paediatric gi the way to go. Need to rule out Coeliac disease etc.

I wondering whether I should take her back to the GP and get inflammatory markers and faecal calprotectin done prior to the appointment with GI.

The need as much information as possible prior to the appointment due to cost issues with visits to the paediatric gi.
10-21-2013, 05:10 PM   #37
my little penguin
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Can you just call the GP and ask for a script for the tests?
10-21-2013, 06:04 PM   #38
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No but the out pocket amount with the GP is $30, where as the Specialist will out pocket will be approx. $180.
10-22-2013, 08:22 AM   #39
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If it's possible to get the tests done prior to the apptmt, I would do that! The more info you have going into the GI apptmt, the quicker you can move along.
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10-22-2013, 10:07 AM   #40
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I agree if you can get some tests before the appt then that would be a good idea. Less waiting around.
10-23-2013, 01:24 PM   #41
crohnsinct
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I vote test before appointment. Save time and money!
10-23-2013, 03:27 PM   #42
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Catherine why do you pay to see the GP isn't the visit covered under Medicare?
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10-23-2013, 05:18 PM   #43
Catherine
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Due to the poor treatment we received from the bulk billing practice we were using prior to Sarah's dx we moved to a non bulking practice where we have an out pocket amount of approx. $30.

Our old practice ordered an ultrasound for Sarah prior to dx which show thickening of bowel, and gave instructions on what tests should be performed if their was clinical signs that IBD was possibility. The doctor told us the test was clear, and Sarah illness was due to stress and ibs. They wouldn't give us copies of any results. Because we took the doctor at their word no further action was taken until she become very sick.

Sarah's GI boss told us that it was she had clear that she had visuable inflammation on the ultrasound. We waste 6 months while she got sicker and sicker.

We now only used the bulking practice when certificates are needed for missing school, when we know it was nothing more the cold.

As you can see I have major trust issues with doctors.

Last edited by Catherine; 10-24-2013 at 12:35 AM.
11-02-2013, 06:45 PM   #44
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Have you managed to get the bloods yet Catherine?

Dusty. xxx
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11-03-2013, 01:10 AM   #45
Catherine
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Actually haven't found time to get her to the gp. It seems silly to miss a day school when she not sick.

Gots of swimming and dance classes happening at the moment.

Cold sores I mentioned in a early post have gone away but she developed a new one yesterday on the lip.
11-03-2013, 01:23 AM   #46
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That’s understandable Catherine.

Has she previously been prone to cold sores, before these latest ones?

Dusty. xxx
11-03-2013, 02:27 AM   #47
Catherine
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She seems get them in groups. These two lots are very close together,
12-08-2013, 10:43 PM   #48
Catherine
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Saw the pedi GI today, he believes there is no reason for concern.

All bloods pretty much normal. Iron (ferritin) although out of range is still what you could reasonably expect for a her age development and there is no anemia. Vitamin d is low but is at level you could expect comming out of winter. Folate there is no upper limit and nothing to worry about in a otherwise healthy child.

Height she is is just under 50 percentile and weight just over 50.

She is relating all stomach ache to swimming and they are not bad enough for her to stop activity.

So not reason for any testing.
12-09-2013, 02:55 AM   #49
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Good news! Hopefully things will just sort of work themselves out for her then.
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12-09-2013, 03:15 AM   #50
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Sounds like good news Catherine, must be difficult worrying about the worst case scenario! Good luck I hope she stays well.
12-09-2013, 03:56 AM   #51
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Reasonably good news. Hopefully she is right about the swimming causing the sore tummy.
12-09-2013, 04:46 AM   #52
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Thanks for the update Catherine.

Sounds like all is pretty stable with Sarah which is fab!

Do you feel the same as the GI…that there are no grounds for concern with anything?

Dusty. xxx
12-09-2013, 05:27 AM   #53
Catherine
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I actually don't know what to think. She has zero GI symptoms. She will complete current course of vitamin d

Then probably see the gp for retesting of full bloods, b12, folate, iron, and d.

Half me thinks I am worrying about nothing but we didn't push hard enough with Sarah.
12-09-2013, 06:28 AM   #54
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What were Sarah’s last Vit D levels and how much are supplementing with?
12-09-2013, 06:52 AM   #55
Catherine
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Sarah vitamin d level have alway been low normal.

Sarah issues started with abnormal iron results.

I don't think Kerry has Crohn's but GI did mention that high folate levels can be caused by bacteria making folate. But as she healthy he is not concerned about this.
12-09-2013, 03:20 PM   #56
DustyKat
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Ugh, I think I am getting confused! Sorry!

Sarah: Have you considered supplementing Vit D?

Kerry: I hope more than anything she doesn’t have Crohn’s but I think for your own peace of mind I would keep a general eye out for any symptoms and even without any apparent anomalies I would have bloods run every 6 months just in case things are in the early stages. Again, hoping not though!

Dusty. xxx
12-09-2013, 04:48 PM   #57
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Sarah takes calrate which is calcium and vitamin d.

With Kerry I think it maybe SIBO.

Last edited by Catherine; 12-10-2013 at 02:41 AM.
12-10-2013, 02:43 AM   #58
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For future reference:

Kerry is 160cm and 47kgs.
12-10-2013, 05:25 AM   #59
DustyKat
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How much Vit D is Sarah taking and what was her last level?
12-10-2013, 06:00 AM   #60
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Sarah takes 500mg per day of vitamin d. Last result I have is for 3/3/12 60 which is considered in range.
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