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06-12-2014, 06:40 AM   #631
Catherine
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Sarah has completed her first semester of university.

She remains in remission and is working as a swimming teacher.

I have added at new Album for semester 1.
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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)
06-12-2014, 08:02 AM   #632
Tesscorm
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So great to hear she's doing so well!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-12-2014, 06:46 PM   #633
DustyKat
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Fab update Catherine! And long may it last!

Dusty. xxx
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Mum of 2 kids with Crohn's.
06-13-2014, 05:27 AM   #634
AZMOM
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∑ Stelara
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
06-14-2014, 10:20 PM   #635
kimmidwife
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Glad to hear she is doing so well!!!!!!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
08-14-2014, 08:41 AM   #636
Catherine
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Just a quick update here of my diary.

Sarah is out of remission. Her calprotectin level is now 398 (up from 84 in late feb) GI is doing further blood tests to work out plan.

At this time she has no clear symptoms of active Crohn's
08-16-2014, 05:25 PM   #637
DustyKat
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I am so very sorry to hear this Catherine.

I hope whatever is going on can be nipped in the bud quickly. Good luck!

Dusty. xxx
08-16-2014, 06:14 PM   #638
Catherine
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Sarah has spoken to her course co-ordinator. She must be getting concerned. The maximum extension on any assignment is one week. Then it has to go higher. Something about it won't be fail and not a pass either. Just keep her formed.

The 29 August is last day to defer without financial penalty.
09-18-2014, 07:29 AM   #639
Catherine
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Quick update on Sarah.

We have up her azathriophrine to 200mg and added Mesalazine. She has been fighting cold for last five weeks.

She has been granted two extensions on university assignments.

There has been some concern with her job as the pool in under new management and they all had to reapply for there jobs.

The GI agreed she could stop taking all supplements and would retest levels in two months.

We got the bill for the azathriophrine levels blood test. Sarah handed me the bill with comment your still paying medical costs? I almost fall of my chair, $250. I trying to get the bill reduced. Will be getting quote next time.
10-30-2014, 09:07 PM   #640
Catherine
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Another quick update.

The university year has finished. The cold is gone.

Managed to get the Azathriphrine test bill reduced to $100. Have found a new lab who will sent the test to Brisbane and will try and bulk bill for me.

Sarah hopes to do a lot of swim teacher shifts as she is planning her first trip overseas.

We currently looking for a weaving machine as she plans to major in weaving.

I don't think the current treatment plan is working but there are no clear signs of a Crohn's flare. She is sleeping a lot. At times she looks very unwell.

She has decide to start a low sugar diet.

Last edited by Catherine; 10-31-2014 at 07:18 AM.
10-31-2014, 05:20 AM   #641
DustyKat
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Thanks for the update Catherine.

Many good things happening but I am sorry to hear that all is still not quite well with your lass. I so hope things soon turn around for her and the no signs of a flare stay that way!

Where is she planning to go overseas?
Just a tip: My Sarah has had no issues getting travel insurance through CoverMore.

Dsuty. xxx
10-31-2014, 06:04 AM   #642
Catherine
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She is planning a 14 day package trip to Europe.

I write CoverMore policies, they don't seem have a problem covering Crohn's so long as you have not a surgery in the last two years.

Sarah is collecting longer list of foods that she can no longer eat. Chocolate milk, fish & chips and nachos.
12-04-2014, 06:38 PM   #643
Catherine
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Blood results

Hemoglobin 11.7 ( 11.5-16.5)
PVC 34.3 (37-47)
RCC 3.75 (3.80 -5.00)
RDW 16.1 ( 11-16)
Comment:essentially within normal limits

Total Protein 64 (65-85)

Ferritin. 16 ( 15- 165)

these results are not normal they heading in the wrong direction
12-04-2014, 11:14 PM   #644
Maree.
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Tell your daughter that if she's going to Europe she needs to come and visit us. Happy to negotiate about putting some cash towards difference in flight costs.
12-05-2014, 08:38 AM   #645
crohnsinct
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What an awesome Auntie!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-06-2014, 12:52 AM   #646
Catherine
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Maree. there is a boy involved!! He has asked her to go travelling for 6 months!! She did look up the travel information. None of her clothes are suitable!!
12-06-2014, 01:20 AM   #647
Maree.
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Any sensible 6 months overseas trip plan should included max number of relatives and family friends who you can hit up for free accomodation.

How does this work with university? Is it on the cards or unlikely to happen?
12-06-2014, 02:58 AM   #648
Catherine
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we are on holiday at Numurkah, internet in patch at best.

Only found out this morning she was considering going for 6 months. She would to defer for at least 6 months.
12-25-2014, 04:58 AM   #649
Catherine
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Christmas 2014, we have a quite family day with another family.

Sarah didn't eat much. She has had stomach pain off and on for the last few weeks. She being saying it not Crohn's pain!! Today after lunch she admit for the first time that today pain is "Crohn's pain"

She put a faecal calprotectin sample in for testing last week.

I have had an appointment with her GI for 21 January to discuss the overseas trip.

Merry Christmas everyone.
12-25-2014, 04:02 PM   #650
DustyKat
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I am so sorry to hear this Catherine, sending much love and hugs your way!

Thinking of you and your girl.

Dusty. xxx
01-16-2015, 06:25 AM   #651
Catherine
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Sarah's fc is 190. It better but GI would like it lower.

We have appointment with GI to discuss overseas trip on 21 January. Current thinking is that they will go in March and be back in time for the start of the 2016 university year.

There few solid plans for this trip. At this stage she has applied for a passport but not received it. You need passport to applies for a UK working visa. The visa takes approximately 3 months.

GI have advised that she needs to start the process of arranging treatment in UK before leaving Australia. At this stage I have been advised that a UK GP unlikely to be able to write scripts for aza without her being under a UK GI. It maybe difficult to get a GP to order the necessary blood test for aza.
01-16-2015, 06:55 AM   #652
DustyKat
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That sorta rules out March then.

Was the GI help in how you go about sorting a GI in the UK?

Dusty. xxx
01-16-2015, 07:06 AM   #653
Catherine
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Had 5 minute phone call to discuss the fc and give a head up about the overseas trip.

GI did mention trying to get her into a large GI clinic where a lot of Australian doctors go to complete further GI training.

Boyfriend has a friend who is a UK GP. Boyfriend has been set the job of providing name and where in London he works.
01-16-2015, 07:11 AM   #654
DustyKat
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Goodo, sounds like things should pan out well then.
01-16-2015, 08:10 AM   #655
crohnsinct
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Boyfriend has been set the job of providing name and where in London he works.
Nothing says love like finding a doctor!
01-22-2015, 04:14 PM   #656
Catherine
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GI appointment.

Slight anemia. Faecal calprotectin 198. Weight 58kg (GI is happy with weight, Sarah is not)

GI tried hard to have Sarah understand the importantance of staying on her meds. Most people flare when going overseas.

Boyfriend did not provide name of doctor.

Sarah is already saying she can't afford to stay on her meds while in England I can't say this surprises me.

She doesn't have enough funds available for the trip she is planning. She believes they will be able to find work in England to support themselves.

We are in the hard position now of needing to step back from medical care to prepare her for overseas. But at the same time needing to have her as healthy as possible before she leaves. We have to make sure had bloods done before close to departure.

So that my update

Last edited by Catherine; 01-23-2015 at 03:43 PM.
01-23-2015, 01:01 AM   #657
Maree.
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Watching kids make their own mistakes is one of the parts of having young adults I'm not looking forward to.

I'd suggest getting her to do a budget. Good to encourage her to look at job adds and see what sorts of work she thinks she could pick up and what it would pay (she might be in for a rude awakening minimum wage in UK isn't good) then have at where she thinks she'll live and cost out accomodation and transport.
01-23-2015, 09:21 AM   #658
kimmidwife
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Ugh! It is so tough letting them grow up! But I guess we have no choice!
01-25-2015, 04:14 AM   #659
DustyKat
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There is a reciprocal health agreement between Australia and the UK Catherine so it would be worth throughly examining what you can and canít access:

How to Access Reciprocal Agreement NHS Care in UK.

On an extended visit to the UK in 2011 to research family history I ran out of the essential medications brought to UK & so began journey & learning about the entitlements of Australians to NHS treatment whilst visiting the UK.

Many Australians travellers who are covered by Medicare in Australia, may be unaware that they are entitled to reciprical health care from a GP in the UK on the NHS. You are entitled to be treated by a doctor as an NHS patient & the cost of the consultation & prescription medicine prescribed by the doctor will be covered by the NHS the same as if you are a UK Resident. After contacting Medicare in Australia several times whilst I was having problems finding a UK doctor who was aware of & would honour this agreement, the Australian Medicare website now confirms this reciprical health care agreement information very clearly.

Unfortunately the NHS in the UK does not provide clear, precise information about the reciprical health care agreement it has with Australia & the result of this lack of clear information is that every doctor I consulted in the UK - 5 in all over a period of a week was stubbornly of the opinion that they could only treat Australian travellers under the NHS if it was an emergency - defined by them as a life or death situation or an accident. Needing medication for chromic long term health problems were not covered according to them.

Any attempt at reasoning with them or showing them the information was met with rudeness, arrogance & anger. It was extremely upsetting, time wasting & frustrating especially as lack of medication was making pain & other symptoms much worse.

Why persevere? Medications & a consultation for Arthritis, Rheumatism & Chronic Fatigue - normally subsidised by Medicare were going to cost over 400 pounds for a month's supply if not covered by NHS. This figure is far higher than even the non subsidised cost in Australia.

Problem was solved in the end by visiting the head office of the NHS in Glasgow who confirmed that the GP's were wrong in their understanding of the agreement & should have given treatment under the NHS. Their advise was to go to the local hospital accident & emergency centre for treatment.

As soon as I went to the local hospital accident & emergency centre, the treatment & care I received was amazing. All the staff were well aware of the reciprical health agreements the UK has with other countries & I was treated quickly, compassionately & efficiently by their staff who then referred to their 24 After Hours Clinic who treated & supplied prescriptions on the NHS.

Hope this information helps other Australian travellers who find themselves in a similar situation.

http://www.tripadvisor.com.au/Travel...stralians.html
02-01-2015, 09:30 AM   #660
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That's rough, Catherine. I think I'd be freaking out.
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*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
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