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06-21-2012, 09:51 PM   #61
crohnsinct
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Our GI insists that O get the flu shot and that the whole family also get it as her immune system is suppressed due to Remicade. There is a live and non live (I am sure there is a more medical term that is escaping me) version of the shot...Remi patients get the non live.

Sorry about the stomach ache. I hope it was just due to the food.

O swims Saturday...she is 2 seconds away from a state championship time and trying for it Saturday...100 back...we are anxious to see how she does...hasn't swam a meets in weeks.
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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
06-21-2012, 10:55 PM   #62
Catherine
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Hope O goes well. When are the State Championships?

Our short championship start on the 31 August so Sarah need to make 17 year old times.

She has times for the ACT Championships which our club attends, but still have heard back whether they are planning to go by bus or fly. Really late notice as the Championships start 22 July.

I don't think her body could cope with the bus trip.

Going to make appointment for flu shots, Sarah also needs to non live one.
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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)
06-22-2012, 07:19 AM   #63
DustyKat
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My two have flu shots.

All flu vaccines in Australia are all non activated so they are suitable for those that are taking immunosuppressive and biologic medication.

The live vaccines are those that are available in nasal spray form and these should not be used when using immunosuppressants and/or biologics. This type is not available in Australia as yet.

Dusty. xxx
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Mum of 2 kids with Crohn's.
06-22-2012, 07:25 AM   #64
crohnsinct
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I just knew Dusty would know the official term...show off
06-22-2012, 07:35 AM   #65
Suzysu
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- for the swimming! xx
06-22-2012, 10:27 AM   #66
Tesscorm
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Good luck to both girls at their swim meets!!
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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
06-22-2012, 03:36 PM   #67
DustyKat
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I just knew Dusty would know the official term...show off
Now you know what I am going to say to that crohnsinct and I reckon you do it because you just like looking at my butt!

Dusty.
06-23-2012, 12:48 PM   #68
crohnsinct
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^^^Oh no you di int! LMAO Dusty!!!
06-23-2012, 12:51 PM   #69
crohnsinct
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So last night O went to bed super tired and complaining of a stomach ache after dinner...Catherine we are living parallel lives!

O didn't get her time in the 100 back...swam a second slow. Swam 2 slow in the 200 IM BUT swam 4 seconds faster in the 100 breast and is now 2 seconds from state qualilfying for that event. The realistic me feels great about this but the paranoid me says stomach ache and two slow swims hmmm But really only 1 and 2 slow is nothing to worry about. Especially with the one fantastic swim.
07-02-2012, 03:31 AM   #70
Catherine
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Sarah has been tired this last week and pale and also,has back pain. I have had bloods tests done. Now waiting results. I am concerned and trying not to worry.
07-02-2012, 03:37 AM   #71
Sascot
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Sorry to hear Sarah isn't feeling too good. I also hope it is nothing to worry about! Hope the bloods don't show anything major, maybe it's just a bit of a virus.
07-02-2012, 03:41 AM   #72
Catherine
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We had our flu a week ago. Maybe that the reason.
07-02-2012, 06:48 AM   #73
crohnsinct
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Oh Catherine I so hope it is a virus! Keep us posted. When is her big travel meet?
07-02-2012, 06:03 PM   #74
Catherine
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Canberra meet is on the weekend of 21-22 July. Awaiting blood test results before making a final decision. It a 8 hour bus trip to Canberra, followed by two days of competition and 8 hour bus trip home on the evening of the last day of competition.

Not sure whether her body can under up to the travelling.
07-02-2012, 08:01 PM   #75
crohnsinct
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Oh man! O and I are crossing our fingers and toes and everything else that those blood results come back A.O.K.! That weekend is the weekend of O's Regional Championships also. Busy swim mom weekend. Will you be going with Sarah or sending her alone?
07-02-2012, 10:49 PM   #76
Catherine
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Too expensive to go this year and the club wants swimmers only. Just found out one to the dad's is going as driver which means there will be two older adults which will be great. The females supervisers are older swimmers 19 and 20.

I was thinking of having her fly but it very expensive.
07-03-2012, 12:43 AM   #77
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fingers crossed for the blood results xx
07-03-2012, 06:36 AM   #78
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Any blood results yet Catherine?

Dusty. xxx
07-03-2012, 07:55 AM   #79
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Hope results are good! And that she's feeling better!
07-03-2012, 05:57 PM   #80
Catherine
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Hope to have blood results at lunchtime today.
07-04-2012, 01:48 AM   #81
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Blood results in, Sarah has mild anemia.

Hemoglobin 10.5 g/dL (11.5-16.5)
Comment: There is a mild anaemia

Ferritin 31 ug/L (15-165)
Iron 5 umol/L (7-270)
Transferrin 2.2 g/L (2.5-3.8)
Transferrin Sat: 9% (13-47)

Comment: Inflammation may be associated with decreased transferrin saturation and increased serum ferritin.

ESR (Westergren): 31 mm/hr (<20)

Comment :The ESR is mildly elevated.

Can't get into the GP until Friday of next week.

Should I push to GI appointment.

Only symptoms currently, pale skin and tireness.
07-04-2012, 04:06 AM   #82
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Have you got an IBD nurse you can phone and ask? We have a helpline to the hospital that the IBD nurses check and then phone back to answer any questions. So that would be a first port of call - to ask whether they think it is necessary to push for a GI appt.
I couldn't remember if she was on any iron supplements? If you are not too worried, you could wait till the GP appt and ask for a supplement. My son is always pale and anaemic - not managed to get his ferratin up to a good level yet (would help if I remembered to give his supplement ). However they never seemed unduly worried about it.
07-04-2012, 04:43 AM   #83
Catherine
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I don't think gi nurses are part of the plan in Australia. I have to make a decision about the swim trip in the next couple of days.

Sarah anemia corrected with in 3 months if starting pred,is back again only 3 months later. What we don't know is whether has been a gradual drop or a sudden drop.

I really concerned about making her coach responisble for medical decisions. When she is getting more unwell. It no like we could get here quickly if anything when wrong, Canberra is a 8 hour drive.
07-04-2012, 06:33 AM   #84
crohnsinct
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So sorry the results aren't better. FWIW, our GI is always concerned when the anemia appears as she wasn't typically anemic before Crohns and they mention mild inflammation. Given the travel meet I would call to get the appointment with the GI. If you wait until after next Friday's appointment with the GP, who knows when you will get the appointment with the GI and the meet is creeping up. If you don't see the GI, she is tired and pale and she won't do well anyway and she will be too far for you to have control over the situation.

Good catch you for asking for blood tests!
07-04-2012, 07:18 AM   #85
Suzysu
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I think crohnsinct has a point - maybe push for the GI appointment given everything else - like you say you don't want to send her all the way to canberra if things are nt right - good luck - thinking of you guys xxxx
07-04-2012, 08:08 AM   #86
Tesscorm
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These decisions are tough to make!! I would also try to speak to the GI, if not an apptment, at least a phone conversation to get his thoughts on the trip, etc.

How do her test results compare with previous results? Since Stephen's diagnosis last year, his CRP and ESR go up and down each test, never extreme but not a defined 'downward' trend. Also, he sometimes has 'off' days which will last 3-5 days where he says he just feel's 'off', he'll be tired, pale, BMs may be looser or sometimes a bit constipated, sometimes a low fever... I used to worry each time that it was the beginning of a flare but, it's always cleared up pretty much on its own, so now I just 'watch' for a few days...

Have you noticed something similar with Sarah? If her results have been fairly consistent, perhaps, it's something that will pass???

Thinking of you
07-04-2012, 11:29 AM   #87
my little penguin
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Never easy- but I would at least give the GI a call to update and see ......
07-04-2012, 04:59 PM   #88
Catherine
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Previous test 17 March

Hb 11.5
Iron 2
transferrin 2.7
transferrin 3
ferritin 56

Only 2 of iron studies number were out of range, now have 3 out of range
Esr 24
07-04-2012, 08:58 PM   #89
crohnsinct
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I am not well versed on tests so I don't know what to say but I rather like Tesscorm's experience and calm...when I grow up I want to be just like her!

I am beginning to think we really are living parallel lives. Today O was like a wet dishrag and started complaining of back pain. She laid in our friend's guest room a lot of the day. She kept coming out trying to enjoy the party but slouched in her chair and went back up...I am hoping it was the heat, long car ride, and return from the trip catching up with her. Infusion is next week so here is hoping but last chance meet this weekend so not looking good right now.
07-04-2012, 09:11 PM   #90
Tesscorm
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Not that experienced Tend to forget the appropriate levels (thank god for our wiki!) but I do look at the comparisons from test to test...

I hope both girls start to feel better soon!
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