# My swimming girl



## Catherine

Just starting a new tread for Sarah in this section.

Sarah is doing very well.  She has gain 10kg since dx.  She has managed to taper her pred down to 8mg per day.

She has very slight stomach pains.  We are sure whether these are crohn's related or stress.  Her year 11 exams started yesterday.

She is managing to swim four 2 hours sessions per week.  Her times are improving.

:ybiggrin:


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## Farmwife

:thumright:Great to hear.:thumleft:
You must be one proud momma! :ybiggrin:


:soledance:Farmwife


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## Crohn's Mom

Great news !

I hope it gets better and better for Sarah!


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## izzi'smom

Wonderful to hear the good news...and hoping for continuing improvement!


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## my little penguin

:dance: wonderful to hear


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## Suzysu

:cheers:
YAY!! - so glad she is doing better!! you must be very proud of her (and yourself!) - good luck with those exams! xx


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## DustyKat

Woohoo Catherine, so fab to hear that Sarah is doing so well! anda:anda:anda: 

Hope the exams go well, when do they finish? 

Dusty. xxx


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## Catherine

11 year exams finish next friday, then year 12 biology on 12 & GAT on 14.  Squeezed in middle follow up appointment with gi on the 13.


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## Suzysu

Oh my goodness - you guys are gonna be busy!!!! - good luck with it all xxxx


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## crohnsinct

I was just wondering how she was doing and fixing to send you a note.  So glad things continue to improve...including her times. :dance: 

Good luck on the exams and hoping the pains are nothing and go away with the end of the school year! 

Our swimmers in the state have a saying...a little play on words so they don't say a naughty word.  They would say " Go Sarah!  Kick splash on those exams!"  Hope that makes sense to you all:smile:

Tell her she is O's inspiration and role model now!


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## Catherine

Thanks for your nice thoughts, these are our mid year exams.  There is a two week break in July.  Our school year ends November.

  Is O swimming this weekend?  We have small club meet this week end.  This will Sarah first comp of any kind since December.


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## crohnsinct

Oops sorry...you mean the world doesn't revolve around the U.S. schedule:rof:

Well then, I hope the two week break brings much relief. 

Yikes her first meet?!!!  We will be pulling for her all the way over here.  GOOOOO:cheers:!!!  Make em eat your bubbles girl! 

What events is she swimming? So when you say her times are improving those are time trial times at practice?  You must be so nervous to watch her but incredibly thankful and proud...gosh even I have tears in my eyes just thinking about it.  

O does have a meet this weekend...three day meet starts tonight.  We aren't expecting much as she is due for her Remicade on Monday and has been out of the water for a week.  400 Free tonight...gulp!  Saturday and Sunday should be easier but three day meets are a killer by the third day.


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## Suzysu

Catherine and chronsinct - you guys are just amazing mothers and both your children are a true inspiration to us all - being so so ill and having to go through so many tests and still managing to go to swim meets and do exams - I honestly am in awe - I just felt the need to say that after reading your posts!!


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## Farmwife

I agree with Suzysu.
Great job to you both!

Farmwife


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## Sascot

Fantastic that she is doing well.  Hope her exams and swimming go well :ybiggrin:


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## crohnsinct

Suzysu and Farmwife:  You are an answer to prayer.  I was just feeling like a bit of a failure and wanting to cry praying that God send me a sign that I am doing O.K..  YOU MADE MY DAY!!!!!! :rosette1:


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## Suzysu

crohnsinct - you are not doing 'ok' you are doing ,AMAZING'!!!! xx


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## Catherine

This is a club meet and she will swim 4 four events in just under 2 hours.  Time will go quick as have 3 children swimming. Times are from training, when Sarah made her come back to swmming she was asked to make the times for a lower group and first she was the slowest in this group.  She is now back swimming the times of her group.


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## DustyKat

WTG Sarah! :thumleft:

Dusty.


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## crohnsinct

Wow that is awesome and not even a full practice schedule.  Look out when she is back full force! 

O's meet tonight was yucky.  63 degrees, windy and overcast and the pool is outdoor.  Poor little thing was freezing to death.  I kept saying that even healthy I can't imagine throwing my already cold body into a cold pool.  SHe had a bad day with the bathroom and had an attack right before her swim.  Oh well...Remicade on Monday will hopefully put her back on track.  

Suzy:  Thanks you are so sweet!


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## Catherine

I just convert that temperature to 17C, is that a summer day. It a nice sunny winter day of 13C or 44F. The meeting is in the training pool and indoors.  The pool is heated.

Sarah swum a 5 km, in October two year ago at the Victorian Open Swimming Championships.  It was purposely the worse day in the race 20 years history.  Temperature got to a lovely 14-15 with cold rain. The kids come out of the water blue from cold and complaining how much rain hurts.  We have the beautiful pictures of Sarah's sunburn.  That's right my child managed to get sunburn.

But it was an improvement to the previous year when she tested the emergency procedures by having an asthma attack in the middle of event.  She got a ride to shore with the lifesaver.

Last year she to sick to swim.


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## crohnsinct

Well technically not summer yet but yes unseasonably cold.  Our pool has a bubble but they remove it the weekend before Memorial Day (last Monday in May).  The kids train outside in the cold and rain...no matter how hard it is raining...backstroke in the pouring rain is real fun.   

5K open water?  That is incredible!  And under those conditions?!  She really rocks.  

How did she do at the dual meet?


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## Catherine

Winter started yesterday on 1 June.  The meet starts at 3.30pm.  We are about to leave.

My girls train to indoor in the morning between 5 - 7 am. The afternoon sessions are outdoors 4.30-6.30pm.  The afternoon sessions get the way of homework.


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## Suzysu

Catherine and Crohnsinct - I would be impressed if a non ill child did all that training let alone one with a chronic and serious condition - I really am so impressed! way to go you guys!!!!


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## Catherine

Sarah time were well off. 100 free 4 second, 100 BR 15 seconds, 100Bk 9 sec, 100 Im 4sec.

I hate see what she will swim the 400IM, in next week.

Still a very long way back.


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## crohnsinct

Ouch...How did she look?  Was she struggling?  Was she O.K. with her times? 

The 400 free is grueling to watch.  O swam it last night in the cold and rain and swam 8 seconds slow...not bad considering but you can really see her die mid way through even her technique gets horrible and she is just fighting to stay afloat (especially hard for her considering she has no body fat to help her afloat).   

Like Suzysu says they really should be so proud of themselves because half the kids their age who are healthy would never put up with what they do and they are fighting chronic illness!  I swear if I were O last night I would have packed it in and opted for my nice warm bed!


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## DustyKat

Good heavens! I would be lucky to swim one lap! :yfaint: 

These girls truly are amazing young women...

	
	
		
		
	


	





Dusty.


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## Catherine

She exactly looks good in the water.  The times was what she was expecting.  The swims hurt.  She also said she needs to do a cool down which was not possible.

looks I felt she has more progress that she had.

The program for next week is a problem.  The 400IM was to be last event of the morning session and 200IM second event of the afternoon.  But they move the 400IM to the afternoon.

But she back swimming and she loves it.


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## DustyKat

> But she back swimming and she loves it.


It doesn't get any better than that! 

:mademyday:
Dusty. xxx


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## crohnsinct

Glad she looks good.  The strength and speed will follow. :thumleft: 

O loves the water and her team so not being on deck kills her.  I am so happy Sarah is getting back into the swing of things! 

400IM!!!!!!!!!  THAT is an awful event healthy.  My 18 year old swimmer has only swam it once!  Avoids it like the plague.  Now Sarah is truly amazing me even doing that healthy!


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## my little penguin

:ywow: 400 IM. very impressed- my LO is too young to swim that yet. He is only 8. Normally he swims 25 free and back. 
The coach signed him up for 100 IM once early last year - he took so long everyone cheered when he got out since no one was sure he was even going to make it.

Glad to hear she was able to swim again that is a good feeling.
FWIW our GI tracks DS progress on how well he is doing at meets or swim practice:sole dance:

If he can't swim more than a lap without a break or his meet time go up- doc know the current med is not working no matter what the blood tests say.


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## Catherine

I remember days when they would do a pb everytime they swum.  Sarah not making time she did 2 years.  She has improved so much in training.  

I am home sick today, so I will look at posting some before and after shots.


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## kimmidwife

I am glad to hear she is doing well. Swimming is such a good exercise and good especially for kids with Crohns who have joint issues.


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## Catherine

I have tried to add two pictures of Sarah to this posting but have only managed to get them into albums.

The first one shows Sarah at dx, weighting about 44 kg (97lb) BMI 15

Second one was taking last week, and she is wearing the dress she made for year 11 textiles. In this photo she weight about 54 kg (119lb) BMI 17.1

Still can't believe how thin was at dx, and how far she has come in the last four months.

http://www.crohnsforum.com/album.php?albumid=411


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## Suzysu

She is a beautiful and amazing girl - and as you say she has come so far in just 4 months. Also I think she may have a future career as a dress designer!! xxxxxxxxxxxx


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## crohnsinct

MLP: Awww those 8/U swimmers are so darned adorable!  Our doc also uses times as part of the equation.  This weekend she was all over the board so who knows.  Blood being pulled today so we will see. 

Catherine:  She is so beautiful!  And you can totally tell in the pictures how much progress she has made.  I think we were all living in sunny dream world prior to dx.


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## Catherine

Sarah swum well today, only 8 sec over her 400IM time and back up 10 mins later with a time only 5 sec off her best 200 IM and finish with 100 back only 1,sec off her offical best time.

Rachel swum next to  Linley Frame in  the 100 breast,  Linley did 1.12. Rachel just looked Linley up the net to find out why the parents thought  this was exciting.  Linley was world champion in this event in 1991.

Both my older girl can now say they have raced against  world champion.


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## Sascot

That's great that her swimming times are getting better.  Glad she is feeling better - lovely pictures!!


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## crohnsinct

Wow!  Only 8 slow on the 400 IM?!!!  And 5 on the 200 with little rest and 1 on the 100 back?!!!  Sounds to me like the Sarah is in a groove.  I hope she was please. 

What an incredible experience for Rachel!  Was it circle seeding?  Neither of my girls would ever be in the same heat as a world champion.  We do have some Olympic trial qualifiers on our team and O treats them like they are celebs but that is as good as it gets...so far


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## Farmwife

:dance:Congratulation:dance: on your girl doing a well as she did.
Way to go mom. You must be so proud!

Farmwife


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## DustyKat

Woohoo! Fab update Catherine! You have made my day! 

:mademyday:
Dusty. xxx


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## Catherine

Rachel,was in slowest heat of the 14 and over 100 br.  Linley swims for the club hosting  the meet and was not on the program for the event.  So her club has entered her on day where there was a spot. Linley come out of retirement in 2010, and is now 42.


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## Catherine

Back from GI review today.

Hemoglobin levels are now normal.  Sarah weight is 58kg, this is the most she has ever weighted.  Will be increasing aza to 100mg per day, pred 3mg per day.

The only reason the GI is not saying remission is that Sarah is still taking pred.  She has not symptoms.   The slight stomach pains, which Sarah describes as different to her crohn's pains are most like due to exam stress.

Follow up in 4 months my only concern to the distance between blood tests.  We have a blood test order to be done before the next appointment or if Sarah feels unwell.


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## Suzysu

Im so glad she is doing well - realy wonderful news! - I don't really know about blood tests on aza can you call the GI's office and just check? or check with your GP? xx


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## Catherine

Suzysu, it just everyone here seems to saying blood tests every 2-3 months, and our GI does not to do any blood test, even with the increase in aza.  Maybe a trip to the GP for me to discuss my concerns.  I just worry about the possible side effects and I know the old ones of unlikely.

I know Dusty, kids have blood test every two months.


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## DustyKat

Hey Catherine,

What a wonderful update! 

GI's will differ on what they think is an acceptable interval between blood tests. I personally would prefer when a dose is being established to have blood tests at least fortnightly and certainly no more than 4 weeks apart. Once established some GI's will eventually pan tests out to 6 monthly but my own personal opinion is that I wouldn't want any over three monthly. As you have obviously seen my preference is every two months :wink: and all these are done via the GP. 

Dusty. xxx


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## Catherine

Sarah hates the blood tests, so she quite happy to wait as long possible.  Are side effects of aza rare?  What are dr looking for when they do the bloodtests? 

Sorry all the questions.  Our gi said the most troubling side effect for most prople is the risk of sun burn.


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## DustyKat

The most serious side effects are rare. Have you seen this article?...

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

When you have blood tests done ensure they do a FBC and LFT's. The LFT's are looking to see that the liver is not being damaged by the drug and the Full Blood Count is looking to see, particularly via the white cells, that you aren't too immunosuppressed. 

Dusty. xxx


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## Tesscorm

Wonderful to hear of Sarah's update!  And she is such a pretty girl!  :queen: Thanks for posting!

I hope you can sort out the blood tests.  Perhaps as Dusty does, you can have them done through the GP. :ghug:


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## crohnsinct

What awesome news!  I literally got chills.  When will she be totally off Prednisone? Has he OK's her to return to her full training schedule? 

Sorry I can't be of any assistance re: blood tests but I know I would want them more frequently...just my paranoid personality.


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## Catherine

Dusty, I think I have to make Sarah concern enough about the risks of aza to make her least understand the need for extra testing but not to the point of paranoid? (spelling).  Sarah will be 17 in August, she needs some responsibility for her own health.

Option 1 take Sarah to GP to discuss risks and further tests.

Option 2, go to GP myself (without Sarah) and discuss risks and my concerns.  This way maybe I findout whether he is in favour of further testing before taking Sarah.

Crohnsinct, Sarah can swim as much as she likes.  She is planning to swim 6 morning sessions, she doesn't want to go back to swimming afternoons.  The water is too cold, and she like having the time after school to do things.  She has a lot of homework, and is doing two folio subjects, and one subject a year above.  In her words she does want her life to be all about swimming.

One last question, for everyone opinion.  How long should I wait for she period to come back before being concerned?  Note she has only every had 4 or 5 in total but none 14 months.  Maybe I need to bring this up with the GP.

Any advice appreciated.


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## my little penguin

I would also let your Gi know.
I know the Ibd clinic where DS is seen has a question about periods on the form seems the Gi tracks that as well not sure what it says specifically since 8 year old males don't have that issue.


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## crohnsinct

MLP: ha but believe it or not my 8 year old daughter did!  8!  They call it precocius puberty.  I have one that wont mature and one that is too early...but that is another forum...

Catherine: I would also ask GP...did she just get to the goal weight they set out for her?  Even with the extra weight, some athletes still don't get it that often.  ugh...just one more thing to wonder about...does it ever end?


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## DustyKat

Hey Catherine,

I understand your concerns about what to say about the blood tests. Both of my kids do know the rare and more side effects but I have not dwelt on them. Sarah takes care of her own health now but when Matt grumbles about the tests I just remind him that we have to check that the tablest aren't being too effecient and suppressing his immune system too much. I don't go into the other stuff, I think simpler is better at this point. 

As for the periods, I am not surprised that she hasn't had any. When the body is under stress, as your Sarah's has been, the body will try to conserve itself and periods are one of the things that will shut down. The same as growth and deveopment are affected in younger children. Once in remission as she is or at least appears to be approaching they will return but it may take some months. Certainly something to discuss with your GP/GI. 

My Sarah was diagnosed at 14 and her growth and development were delayed. She did not even look like going through puberty. Surgery put her straight into remission but she was in very poor physical condition and it took her at least 6-8 months of being in remission before everything took off with a vengeance. 

Dusty. xxx


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## Catherine

Still trying to work out what to do about the blood tests, will talk to my gp when l get my test results later in the week.

Just back from a weekend away with girls, day 1 spent get photos are Sarah assignment of native birds and animals.

Day 2 swim meeting, Sarah requalified for her squad by going under 12 minutes for the 800 free, she had already the 400IM from last week.


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## crohnsinct

That girl is on fire! :medal1:

Good for her and good for you for helping her with her project, calling a swim meeting a vacation and for being an all around great mom!


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## Catherine

Sarah had finished pred taper as of today.:rosette1::rosette1:


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## izzi'smom

so glad to hear she is feeling well...hoping it continues now that she is off of the pred (and woohoo!!! finishing a pred taper was always a relief for us!!)


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## Catherine

Sarah has had her first post pred stomach ache.  Thankfully it has passed quickly.

We now think she may have a problem with fry food but only if a battered or crumbed.   First step in her realising that diet plays a part in stomach issues.

Now question.  Do your children have flu shots?


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## Tesscorm

Yes, Stephen had his flu shot.  Cleared it with his GI who encouraged it so as to minimize Stephen's chances of catching the flu.


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## crohnsinct

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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## Catherine

Hope O goes well.  When are the State Championships?:lol:

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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## DustyKat

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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## crohnsinct

I just knew Dusty would know the official term...show off


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## Suzysu

:goodluck: - for the swimming! xx


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## Tesscorm

Good luck to both girls at their swim meets!!


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## DustyKat

crohnsinct said:


> 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! :kissgrits:

Dusty. :ybiggrin:


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## crohnsinct

^^^Oh no you di int! LMAO Dusty!!!:rof::rof::rof::rof:


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## crohnsinct

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:shifty: But really only 1 and 2 slow is nothing to worry about.  Especially with the one fantastic swim.


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## Catherine

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.


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## Sascot

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.


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## Catherine

We had our flu a week ago.  Maybe that the reason.


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## crohnsinct

Oh Catherine I so hope it is a virus!  Keep us posted.  When is her big travel meet?


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## Catherine

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.


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## crohnsinct

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?


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## Catherine

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.


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## Suzysu

fingers crossed for the blood results xx


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## DustyKat

Any blood results yet Catherine? 

Dusty. xxx


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## Tesscorm

Hope results are good!  And that she's feeling better! :ghug:


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## Catherine

Hope to have blood results at lunchtime today.


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## Catherine

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.


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## Sascot

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 :blush.  However they never seemed unduly worried about it.


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## Catherine

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.


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## crohnsinct

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!


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## Suzysu

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


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## Tesscorm

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 :ghug:


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## my little penguin

:hug: Never easy- but I would at least give the GI a call to update and see ......


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## Catherine

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


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## crohnsinct

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.


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## Tesscorm

Not that experienced :blush:  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! :ghug:


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## Catherine

I done some research and found anemia can cause increase in ESR.

When I get to see the GP who I will be ringing Monday morning I will be requesting the following.

Methylmalonic Acid (check B12 def)
CRP
LTF 

Any other suggests

Thanks


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## DustyKat

I can't think of anything else on the blood test front. I was going to suggest faecal occult blood but since oral iron is being taken it may produce a false positive result. Perhaps a way around that would be faecal calprotection? What I would interested to know is if there is inflammation present and is that inflammation contributing to the indicators of anaemia ebbing and flowing from normal to dipping outside of it. In other words is there a slow insidious bleeding occurring, much like a dripping tap, that might explain some of what is going on. 

Good luck hun! 

Dusty. xxx


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## StarGirrrrl

Complement markers C3 and C4 are a good measure of inflammation.

My CRP goes up/down slightly around a certain set of numbers (see signature), but my C3/C4 both increased the second time they were tested, and I will get the results of times 3 and 4 (pre&post Pred trial) soon. ESR is always normal

Edited to add: The c3/c4 increases were huge, much bigger than a few single numbers with CRP.


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## Catherine

I am still concerned about allowing Sarah to travel so far when she is unwell.  But have decided it is important that she makes the trip as support person for a team mate.  This week has reminded there are worse things in life than crohn's.

I have tell my children that there dear friends father is dying, after after the said children aged 10 and 14 are told tonight.


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## crohnsinct

Oh Catherine!  I was just thinking of you this a.m. and remembering him in our prayer time.  I was so hoping the results of his last appointment would be encouraging. I am so sorry they are not. 

You are an amazing friend, letting your daughter go on the trip even though you are nervous and what an example you have been as to how to be a friend that Sarah will want to be with her friends as a support (swimming really does make our friends like our family doesn't it)!!  Good job mamma!


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## Catherine

Thanks for your reply, I am going to take a leaf out of his 10 year old book who told my youngest at swimming this morning.  Her father has a mass that  eaten the bone in his arm and the doctor is going in and will put in a nail fix it.

Now going to think positively.  Was feeling very down last night.


----------



## Tesscorm

Very sad, Catherine, about your friend   I lost a close friend to cancer a couple of years ago, certainly a difficult time.  

Just a suggestion but, perhaps send Sarah a few nutritional shakes to keep with her...  if she's not feeling well one day or doesn't have much appetite, at least she can drink some shakes and you'll know she's getting some nutrition while being easy on her system to digest.

:ghug:


----------



## Suzysu

I am so sorry to hear about your friend - a very difficult time for all of you - sending you big hugs xxxx


----------



## Catherine

Finally back from long awaited GP appointment.

GP believes there is an absorption problem with iron, iron levels may actually be closer to zero.

Spoke about vitamin B12, levels are not considered low and some people feel better taking vitamin B12, happy for Sarah to take it.

He can't see a reason to test liver function as moment, did look up the aza on the computer.

All got script for asthma medication, and explain how she has been taking much lower doses to keep peek flow at 500.  Doctor said he would be interested to see how long the pred effect lasts.

New Supplements:-
Vitamin B12 100mcg
Iron 310mg

Now planning to do some internet research for Australia studies support the need for liver function tests with aza.


----------



## DustyKat

Hey Catherine, 

I am so very sorry to hear about your children's friends Father, what a difficult and heartbreaking time for all that know him. :hug: So sad. 

Good to hear the GP is happy to go with the B12 and stay on top of the iron issues.  

I personally don't agree with not testing LFT's routinely simply because of the potential effect Aza can have on the liver. Recommendation or no recommendation the fact that your child is taking it and you are concerned should well be enough reason to do it. 

Dusty. xxx


----------



## Catherine

Maybe I didnot push harder enough.

GP felt the GI would be testing if necessary.

The anemia was main concern as Sarah leaves for Canberra on Friday.

Sarah looks so heathy now, and it doesnot help that this almost 17 will only answer direct questions from Gp.

Also think I had too many different issue in the appointment.

We discussed asthma, anemia, iron levels, b12, sore back.  Due to our change gp practice there had been previous dicussion of asthma.


----------



## DustyKat

Oh Catherine, you have done a wonderful job!  

It will be fine hun. Just get them done next time she has bloods drawn. Just tell the GP you want them done...:wink: 

So fab to hear that Sarah is looking well! 

Dusty. xxx


----------



## crohnsinct

We will be busy here tomorrow getting my older daughter off on her mission trip and heading out to O's swim championships so I wanted to make double sure I popped in here and wished Sarah lots of luck this weekend...her friend also...must be hard swimming with a heavy heart


----------



## Catherine

Thankyou, sleep in, now running later for morning trainig.  Bus departs in 4 hours at 9.

Friend was operated on yesterday, and broken arm has been fixed and is in much less pain.  His daughter was able to see him in the afternoon before the trip.  Her dad is now looking at being able be modile.  Big improve for him and his family.


----------



## DustyKat

I hope all went with the departure Catherine! 

Wishing all well this weekend and my thoughts are with your daughter's friend, bless her. 

Dusty. xxx


----------



## Catherine

Gosh my typing on my telephone was worse than normal this morning.

The girls got away happily at 8.30am this morning.  Sarah's friend is happy her dad appears to be in far less pain.  The operation was only yesterday morning. He seems more postitive which is great for his two daughters.:rosette1:


----------



## Tesscorm

Great news!   I hope all goes well on her trip and she has a great time!  

And happy to hear that your friend is beginning to feel better after surgery!


----------



## jmckinley

Glad that your friend is feeling better. 

I am glad that she is looking better. I think it's wonderful that you let her go to support her friend. I hope they have a great time and that you have a moment to rest up! I know this is all exhausting.


----------



## Catherine

Sarah sms that she has done a 50 FLY time of 2.5 sec better than her entry time from 8 July 2011.  She also has done a PB of 0.01 on her best time from 29 May 2011.

This is Sarah's first PB in 364 days in any event or distance.:ylol::ylol::ylol:


----------



## DustyKat

Wow! Go Sarah!!! What a fabulous update. I am so happy for you both! 

:award2::award2::award2: 

:mademyday: 
Dusty. xxx


----------



## crohnsinct

That is so awesome! :applause: Totally know how that dry spell feels!!!  Go Sarah! We are at the pool now (yes 5:45 a.m. for 6:00 a.m. warm up ugh!)  Hoping for some good swims!


----------



## Catherine

Thanks, 3 swims today.  The 50s were both within 1 sec but the 200 back was 7 sec slow.  Two more tomarrow.

Sarah got silver in the immediate 50 fly which has a difference entry process you have to be slower than one time and faster than another.

What O swimming today? Sarah has 200BR and 50BR tomorrow.


----------



## crohnsinct

Congrats on the medal!  She must be so excited.  Did she say if she was still feeling well?  How is her friend doing? 

For Olivia we find over a three day meet she may have one, possibly two really great swims (and mind you we define great by our new Crohns standards) and then tank one and the rest are close but no pb...just the way she is.  It is like she puts everything she has into that one race and is spent.  So if we walk away with one good race these days we are ecstatic!  

Today is 50 breast, 200IM and 100 back.  Her 100 Back best time is from summer 2010! The best she has been able to do is come within a second.   At the last meet she bested her 50 free time that was from summer 2009!  

Tomorrow is 50 back, 50 fly and 100 breast.  

She doesn't typically do well in 50's because she is not a sprinter.  She is more a mid distance swimmer (200's) but she turns 13 in the fall and becomes a senior and after that the only 50 they get to do is 50 free.  So her coach figures with her not being at peak and getting tired at distance and the fact that she won't have another chance at 50's keep her in the short distances.  

Here is hoping.  I left O at meet with dad.  Sometimes my worried energy isn't good plus I have to get my older girl off to her mission trip.


----------



## crohnsinct

P.S. oh and since this is championships they are allowed to where their "fast" suits.  For her it is the aquablade but she left it at home and is freaking out that she won't shave time...like at 12 and at her level the suit makes a difference...well maybe psychologically it does...


----------



## Tesscorm

Congrats on the Silver!!!  Don't understand all the swim talk but it sounds like she's have a really good meet!!!  YAY!!!!!!! :banana:  Hope tomorrow goes just as well!




Good luck O !!!


----------



## Suzysu

:congratualtions::cheers::congratualtions::cheers::sheep:
WHOOP! WHOOP!- glad she is doing so well!! xxxx


----------



## Catherine

Thanks everyone, I think she happy.  Where talking by those short phone typed messages.

Sarah get to where her fast suit at all meets, she has a cheap chinese one which is getting to tight in the legs.

Get this Sarah asked me whether she could buy a AIS jacket with money I gave her. It would pretty hard to stop her from 8 hours away.  But it felt so good to be asked.


----------



## crohnsinct

That is so cute.  What a good girl you raised!


----------



## Catherine

How did O go?  What time is it?   It's 9.40 in the morning here.


----------



## crohnsinct

8 p.m. here....just sent her to bed...she has to be up and on the road by 5:30.  

She did same old...one fantastic swim...200IM 4.5 seconds off a time from October.  50 breast just shy of her time from last year this time and 100 back (supposedly her stroke) 2.5slow off her 2010 time!  

Oh well at least she got one good swim in.  Tomorrow is another day but our experience is day three she is tired.


----------



## Farmwife

Good for both you girls.
 You both should be proud moms!!!


----------



## Catherine

Hi Guy, Sarah is in the middle of her first viral illness on aza.

She had slight cold on Thurday didn't swim Friday or Saturday was feeling better on Sunday.  So swum yesterday morning seemed ok.  Went to school and I received on a call from the school nurse to pick her up.

She had headache and breathing issues, asthma medicine worked was much better went I got there.  Nurse said she need to go home even with Sarah saying she wanted to go back to class.

Took she straight to the the doctor, because of the headache and sore neck to touch the doctor mentioned the concern of brain infection(can't remember to name) she used asked about rash.  Sarah confirmed she had no rash.  Given certificate for two off school.

Sarah is fine.  Does anyone know about increase risk of brain infection? with aza.

Thanks


----------



## Patricia56

Hi there -

I'm new to the forum. It's so great your daughter is doing well overall.

Would you mind starting a new thread about the AZA question?

These really long threads that cover several topics are making me a little loony. I don't always have time to read several pages so I can figure out how folks got to where they are at the end.

I think that made sense.

Anyway, thanks. :ybiggrin:


----------



## Tesscorm

Hope Sarah's still feeling fine!  And, do we parents NEVER get a break?!?!?  Now a brain infection?  Don't you love when doctors mention something and then not give you any more info?!?!:ymad:

Anyway, hope it was just a 'cold' and all is well now!


----------



## Sascot

Hope Sarah is fine now and recovered from her virus!  
Tess - I know these docs just love to throw these things out there then send us home with more stress.  My poor sister-in-law took my nephew (2) for his asthma/chest check up and the nurse randomly mentions cystic fybrosis with nothing to back it up.  Poor thing was so worried.


----------



## DustyKat

Hey Catherine, 

I hope Sarah continues to do well, bless her. :hug: 

I think the infection/disease they would have been referring to is Meningococcal. The fact that she is on Aza would have been a consideration but her age would have been a concern too. 

I don't think there is an increased risk of a brain infection as such but more the fact that she is at greater risk of contracting an infection fulistop because she is  immunosuppressed. I know there have been a number of threads on the forum that have broached this same question and it would seem that many members feel that rather than contracting more infections whilst on Aza they in actual fact contract fewer but it would no doubt be a highly individual thing. My own children haven't appeared to have been more prone to illness than anyone else in the family. 

Dusty. xxx


----------



## Catherine

Dusty

I think your right.  Looking back on it Sarah, did have flu like symptoms and she had a sore neck and all the doctor really did was warn Sarah and myself to look out for fever and rash.

All in Sarah has had less colds since starting aza.  Even her constant running nose has cleared up.

She went back to school yesterday, and took this morning off swimming just to be sure that she beats this virus.


----------



## Catherine

Sarah is back to her best since dx.

Little Miss Sarah is 17 today.


----------



## DustyKat

Wow! Fab update Catherine and what a wonderful present! 


A Great BIG Happy 17th Birthday to Sarah!...







I hope she has a fab day filled with fun and surprises!


Dusty. :wub:


----------



## Catherine

Thank you Dusty, year 12 biology mid year results come out today.


----------



## DustyKat

Sending loads and loads and loads of good wishes that she does well, bless her...:hug: 

Dusty. xxx


----------



## Suzysu

:bdayparty: Happy birthday Sarah! xx


----------



## crohnsinct

HAPPY BIRTHDAY AND GOOD LUCK SARAH!!! 

:bdayparty:


----------



## izzi'smom

happy birthday to sarah and so glad to hear that she is doing well!!


----------



## Farmwife

Happy Birthday Sarah!!!


----------



## Tesscorm

Wonderful news and a great way to celebrate her birthday!!!

 :banana:  :banana:  HAPPY, HAPPY BIRTHDAY SARAH !!! :banana:  :banana:


----------



## NMMom

I'm new here and have just read through all of your messages.  You and Sarah and so inspiring!  I have so much hope from both of you!  Happy Birthday Sarah!


----------



## Catherine

*grammer*

Just a quick update.

Sarah home today with a bad cold.   When to the GP yesterday and got a certificate for two days.

She has mild anemia and mild lymphopenia, we are not overly concerned. Looking back over her previous blood tests her lymphocytes have pretty much stay at 0.7.  Just going to ask at her next appointment why it now mild lymphopenia when it wasn't before.

Anyway accordingly to my daughter I am a bad mother.  Yesterday she told me after the  doctor's appointment she was going to school today.

So I went her room this said morning Sarah, no action, so I left her.

On my way to work I woke told her to have her medicine and got into trouble because I should have awoken her for school.

That life.  She home is a nice warm house.  Mother knows best.


----------



## crohnsinct

Awww I admire her dedication but you are right Mother knows best!  Hope she feels better real soon!


----------



## Tesscorm

Hoping she feels better soon!  Yep, I've been a bad mother LOTS of times! :lol:


----------



## DustyKat

Awww, I hope Sarah soon feels better hun. :hug: 

Oh yes, I well know the feeling of over riding decisions! :lol: 

Thinking of you, :heart:
Dusty. xxx


----------



## Sascot

Sorry to hear Sarah's not been well again.  Shocking - you bad mom letting her sleep in when she's not been feeling great!!
 Have to say I don't think I would have been that upset if my mom had let me sleep in instead of going to school :biggrin:


----------



## kimmidwife

Hope she feels better quick and gets back to school!


----------



## Catherine

Sarah is getting better and went back to school.

She doesn't like the fact and she now has to catch up, two days of missed school work and the homework and study.

She is purpose to be doing 3 hours study and homework a night.


----------



## Farmwife

Sorry for the catch up she has to do but happy she got to go back!


----------



## Tesscorm

Glad she's feeling better!   Hope she can catch up quickly!


----------



## upsetmom

Catherine do they have laptops at school so the kids can do all there homework in? . My daughters school has given each student a laptop and they do all their work and homework in. So if she has days off sick she tries to catch up as much as she can before she goes back


----------



## Tesscorm

Catharine, just a thought...  before Stephen was diagnosed, he missed tons of school and he was worried about not being able to catch up, etc.  Our compromise was that he was allowed to go to the one or two classes he 'absolutely' couldn't miss (i.e. math).  Of course, it all depended on how sick he was and what his symptoms were...


----------



## Catherine

No we don't have a laptop program.

Sarah is doing VCE,  the only subject that is really important this year is year 12 biology.
The other subjects just require a pass.

Just need to get on top of thing before year 12 due the uni enter scores.

The teachers will email work if required.

This year Sarah has missing more school days than in the previous 12 years combined.


----------



## DustyKat

Have you met with all her teachers Catherine? 

My kids went to a central school, so K-12 and only about 400 students all up. I thought I had things pretty much in hand, always kept the school informed and so on. Anyway my Sarah went a tad off the rails in Year 12 and I ended up getting all the teachers, including the Principal and Deputy, in one meeting. The school had always been on board and very accommodating and I assumed they knew what she was going through, that was until the meeting. When I spoke about how this disease impacts on every single aspect of her life and how, even in remission, most of the teachers had no idea and were quite gobsmacked. I think it finally all fell into place for them. 

Dusty. xxx


----------



## Catherine

In my Sarah case, I don't  think pressure is comming from school, it comming from Sarah herself.

She just doesnot want to miss school and doesnot want this disease to stop her doing what she wants.  She pushes herself very hard.

The school appears to be very understanding.  She is one of 150 year 11 students.

I think with her looking so unwell at the start of year has helped with school understanding how serious the illness can be.


----------



## DustyKat

I certainly know where you are coming Catherine, my two are very driven as well and it is a worry to me that they push themselves beyond what I think is necessary much of the time. 

My Sarah changed after her emergency surgery. I liken it to when people that have a near death experience say it changes what is important to them. I mean is still driven but nowhere near compared to what she was, she now seems to channel it more. 

Matt was diagnosed at the end of Year 11 and remained determined to do his Year 12, he only had two subjects to complete, and his university studies. He only went from bad to worse after his diagnosis and in the March he made the decision to drop 2 of 3 units he was enrolled in at uni. It was a hard decision for him to make but his physical condition was very poor and he had surgery looming. It surprised me at the time but he said he would not be able to complete the units to his satisfaction so did not wish to continue but rather pick them up again this year, which he did. It was the best decision he could have made and maintained that level of study into his second semester of university as well. 

It's so hard for them to find that balance at times but I think when the time is critical they know what they are capable of. It is just such a shame that this bloody disease often strikes at this very crucial time in their lives. :ymad:

Dusty. xxx


----------



## Catherine

End up calling gi office on Friday to confirm LFT had been done.  They were normal in March.  Also discussed low white cell, gi seem concern how quickly they have droppednot actual level.  Received order is the mail today for FBE, LFT's, U&E's.

Sarah cold is still hanging on, she hopes to swim in the morning, first time in over a week.


----------



## Catherine

Sarah still slightly off.

Full Bloods and Serum Biochemistry back.

They are showing mild lymphopenia and mild aneamia.

White cell is up to 7.1 (4.0 - 11.0) from 4.0
Lymphocytes up to 0.9 (1.0 -4.0) from 0.7

Anaemia steady at 10.7 g/dL (11.5-16.5).

Protein slightly low.

Maybe it just normal winter illness.


----------



## Suzysu

I hope it is a normal winter bug and that she starts to feel better soon xx


----------



## DustyKat

How is Sarah going Catherine? 

Thinking of you guys, :heart:
Dusty. xxx


----------



## Catherine

She says she well but has night cold which sounds nasty.  Had the cold for 16 days now.  She doing her normal activities.  She got a funning grey mark right up spine And sore back but she think thats from falling on the high jump bar.  I think there should have been another blood test result or are lft one of one I listed.


----------



## DustyKat

Thanks for the update Catherine.  

I know Queensland has had flu like viruses particularly bad this year and NSW hasn't been a lot better. My Hubby has had his cold for nigh on 6 weeks now and that isn't uncommon around these parts. I hope your Sarah is able to clear it from her system soon hun, poor love. :hug: 

Dusty. xxx


----------



## Catherine

Off to the GI for check up tomarrow, and of course she has a sac at the same.

Planning to discuss anemia and mild lymphopenia.

Also testing schedule.  Going to try for every two months and maybe settle for every 3 months.

Maybe risks of 5 km swim in the pondage.  Water temp 23C. Heated by the powerstation.


----------



## Tesscorm

Good luck tomorrow! :ghug:


----------



## upsetmom

Good luck i hope everything goes well


----------



## DustyKat

How did things go at the GP's Catherine? 

Dusty. xxx


----------



## Catherine

Saw gi today, have clinical remission, no symptoms.  Amenia and lymphopenia most likely side effects of aza.

This is what they use to aim for but now they what m? healing.  Will do stool testing in next couple of weeks.

6 month review, testing when I want for liver function etc.

Colonscopy and stool test the after review make sure they match for Sarah.

She needs to watch for symptoms over the few months, as it a danger time.

The so called gasto attacks in the 2 years leading up to dx were crohn and any further attacks are treat as such.  Must remember gasto does not present with only severe stomach pain.  These attacks only lasted 24 hours.

Yearly scope done 10 years of inflammation not years after dx.


----------



## DustyKat

Thanks for the update Catherine.  

It is so fab to hear that Sarah is in clinical remission and what they are aiming for now is mucosal healing. 

I hope everything just keeps getting better and better! 

Onwards and Upwards! 
Dusty. xxx


----------



## Catherine

School out for two week and swimming on a 10 day break.

But this Sarah has a practice biology exam on the second Monday of the holidays in full school uniform:voodoo::voodoo:

She got 98% for the biology sac that she was late for due to gi appointment.


----------



## Sascot

That's great that she did so well in the biology test, she must have been pleased!  Hopefully this break from school and swimming will give her body a chance to totally get rid of any lingering symptoms from her cold.


----------



## crohnsinct

Wow Smarty Pants Sarah!  Congrats. 

Now why in the world do they have to drag those kids in, in the middle of their holiday to take a test AND in full school uniform?!  Ridiculous...suppose you were going away?


----------



## DustyKat

Oh wow! Well done Sarah! :award2: 

Okay, I can understand a practice exam but in full school uniform when it's during the  holidays, that's just...:ybatty:!!!

@crohnsinct. The teachers at my kids school use to put on extra study/practice exam sessions in the holidays when the kids reached year 11 & 12, it wasn't compulsory. It was in the teachers own time so they really were dedicated in helping the kids through the stressful last two years.  

Dusty. xxx


----------



## Catherine

Understand the reasoning, she major exam is on 3 Nov. The reason for unform is make feel real.  There just not enough class time to do it school time 

It great that teachers go to the trouble of holding these exams.


----------



## Catherine

Started back at swimming this morning.  Cold seems to be gone.  She looking happy and healthy.

The biology exam was really hard.

She is getting an award at school presentation night, received notification by mail.  Now  question is what for.


----------



## Tesscorm

So glad to hear she's looking and feeling well!!!

And, congratulations on the award!!! :medal1:  Woohoo!! :applause:


----------



## DustyKat

Woohoo! Fab update Catherine! 

So fab to hear she is feeling great and what an achievement to be receiving an award! You must be one very proud Mum! and rightly so! 

Onwards and Upwards!
Dusty. xxx


----------



## crohnsinct

Awesome news all around.  How wonderful about the award.  I love surprises!  You will have to let us know what it is for.


----------



## Catherine

As per my other thread.

Sarah stomach ache has returned but she is a little better tonight.

She had to get up on stage to night at presentation night to receive her award for Most Outstanding Student in the Arts and Technology area. Very happy for her with the year she had, its a great achievement.:hug:


----------



## Farmwife

WOW, great to hear!!!!:hug:
Good job Sara and Great job MOM!!!!


----------



## Clash

Way to go Sarah!! I know you are a proud Mom!!


----------



## Tesscorm

Great job Sarah!!! :medal1:  You must have been so proud! 

Glad her tummy ache is a bit better, hope it completely goes away quickly!!!


----------



## Sascot

Congratulations to Sarah - all those health issues and she is still doing so well.  Enjoy!


----------



## upsetmom

Well done Sarah...:congratualtions:


----------



## my little penguin

Way to go Sarah!!!!


----------



## jmckinley

Congrats Sarah!


----------



## DustyKat

SQUEAL!!! Well done Sarah!!! 







You must be so proud Mum and rightly so! 

Dusty. :rosette1:


----------



## Catherine

Going to put the anemia concerns on my other thread into context here.  

This weekend 12 months ago, I wouldnot let Sarah swim at the Victorian Open Water Championships, her hemogloblin level was 9.3.

All three girls, swum today in 2.5 km and finished.  My youngest was the last swimmer to complete the distance and a little unsteady after she acrossed the line. The referee was asking me later was she alright and then went to say there was another very pale, anemia, skinny looking girl who was the worse.  That was Sarah, she recovered her balance quickly.

Sarah placed 3rd in age group, just 30 seconds off second.

The water was a lovely 22c and the air 16c, with light rain and periods of sun.


----------



## crohnsinct

Wow! Wow! Wow! 2.5 km?!  That is hard in a pool but open water?!  Those girls are my idols!  Good for them!  The ref's comments about Sarah concern me a bit but glad she did so well!


----------



## Catherine

Sarah has another condition dx two years ago called postural hypotension.  The neurologist who dx it did other testing including echocardiography and ultrasound of heart to rule out more serious conditions.

In factor the neurologist was able to trigger the condition in his rooms.  Sarah also has low blood pressure 85/45 but her blood pressure drops from that to 60/40 when taken after going from lying to quickly standing.

This is what happened after the swim and the first aid people and trained to look out for the condition.  She was made to sit down and her blood pressure adjusted to normal.


----------



## Sascot

Glad all ok, thats great that she did well!!


----------



## DustyKat

Well done to your girls Catherine! :medal1:

Sarah must never cease to amaze you hun. She surely is an amazing young lady!  

Dusty. xxx


----------



## Catherine

I haven't update this thread in while.

Sarah is still fine, swimming 6 session per week, going to school.

As per my our thread still awaiting plan of action due to MRI results

Life is good, when i don't over think everything.

Year 11 exam, start to today with a 3 hour English exam.:rof:


----------



## DustyKat

Thanks for the update Catherine.  

It's so good to hear all continues to go well and I hope the MRI action plan keeps it that way! 

How did Sarah find the exam? 

Dusty. xxx


----------



## Sascot

Glad she is doing well.  Hope she does well in her exams!  My mom never thought I did enough revision for exams :lol:.  Have to say I am very glad I don't have to do any more!!!


----------



## Catherine

Exams have finnished.  Sarah has started fast start for year 12.  School finnishes on Friday for almost two months.  She has taped pred to 20mg.  She is very tired.  We are seeing the surgeon tomorrow.

Its almost 12 months today from when Sarah miss dx with ibs.  In last year she lost 12kg then gained back 16kg.  We have managed to rise her hemglobin to 10.5.

But somehow it feels like she is moving in the wrong direction.


----------



## Catherine

Sarah was too sick to swim this morning (sore stomach) for the second time in 3 days. She went off to school.

Surgeon visit is tomorrow, as got the date wrong.


----------



## Farmwife

So sorry to hear that.
I'm sure for her not to go has to be hard on her but twice I'm sure your both waiting for tomorrow.


:hug:


----------



## Crohn's Mom

I hope she feels better quickly 

Best of luck with the surgeon tomorrow!


----------



## my little penguin

Good luck in the am . Sorry she is not feeling well.


----------



## crohnsinct

That's awful.  O would rather cut off her arm than miss swimming.  Sending you good vibes for tomorrow...or is it today already there....anyway hoping for some good news and clear answers.


----------



## Catherine

Lunchtime, Sarah 's has finished school and is home.  She has two study periods today, not much studying to do when school finishes for the year on Friday.  She is feeling better recording to her sms message


----------



## kimmidwife

Good luck tomorrow! Glad she is feeling a little better.


----------



## upsetmom

I hope she enjoys her holidays....my daughter still has another week to go ..she can't wait.


----------



## Suzysu

Good luck - hope the appointment goes well xxxx


----------



## Tesscorm

Good luck at the apptmt!!  :ghug:


----------



## Clash

Good luck at the appt!!! Hope all goes well.


----------



## izzi'smom

Wishing you luck today!!!


----------



## Catherine

School holidays begin today, Sarah seems tired but maybe it end of school year.

Going recap the options we were given at last gi appointment, our sort plan of moving forward.

1. Remcide - Sarah does not qualify.  Children index 7.5 in bad week, need score 30 plus, CDAI about 32 need to be over 210

2. Increasing aza - still awaiting blood results to confirm levels

3.  IV steriods - the imflammation is much reduced as confirmed by mri.  But she probably has fistual.  Don't think this would help.

4. Surgeon - would like to wait and see.  Happy with this advise.  He can see why the radiologist thinks it could be a fistula.  He never actually said it was a fistula but when I asked could it be the bowel healing he said no it could a fistula Review in 3 months when of pred.

5. Iron influsion? - rang gi and lefted a message I would like to go ahead with this.  The receptionist asked whether we had private health insurance.  Waiting call back.

6.  Also going to push b12 injections - thank you David

I going to do everything I can to get this anemia corrected, the surgeon did say that this small 30 cm section of bowel could be reason for the anemia and the anemia may be a reason to consider surgery in the future.

We have a plan of sorts.

Any ideas or advice welcome.


----------



## Sascot

No extra ideas - your list seems pretty thorough!  Hope it gets going soon, so she doesn't feel so tired.  I'm starting to have to write lists everywhere these days :lol:, between my mom, Amy and Andrew I never know which appt is which.  Never mind about fitting myself in!


----------



## DustyKat

Hey Catherine...:hug: 

Ugh, end of year is always a tiring time but I imagine the anaemia may also be feeding into the fatigue.

My Sarah's GI always said that anaemia can be an insidious ongoing problem even without taking menstruation into account. Although blood often can't be seen, when disease is higher up, while ever inflammation is present you tend to have a dripping tap scenario. Of course then there is the issues associated with malabsorption. 
I hope you able to get on top if it again soon. Good luck! 

Has Sarah ever had Flagyl as a part of her treatment regime? 

Dusty. xxx


----------



## Catherine

No we used pred and aza.  Gp put on something not long after dx for an infection but I 'm not sure what it was.


----------



## DustyKat

I just wonder if some Flagyl might help settle things further??

Dusty. xxx


----------



## Catherine

Sarah told the surgeon, the stomach pain she has this week is not crohn pain..  She just felt gassy and sick.

Gi is starting think Sarah has more symptoms than we believe, that it almost like she doesnot know what it like to feel well.


----------



## DustyKat

Oh bless her...:hug: 

That well be the case Catherine. When disease is chronic and insidious like Crohn's you have tendency to 'absorb' symptoms over time and they become normal to you. You do forget what it is like to be 'normal'. 

I wonder too if these are new symptoms she is experiencing and that is why she doesn't relate them to being a part of her Crohn's? 

Dusty. xxx


----------



## Catherine

Dusty you are already good at making me think.  Why did w havee the bloods and faecal calprotectin done early.  She had gassy stomach pains, the bloods come back normal.  She stopped having milk again and the stomach pains went away.  We then had the trip to emergency with severe stomach pain (crohn pain) a couple week later, they started pred.

We saw gi week later due emergency visit but gi through we were there to discuss the higher faecal calprotection.

I don't think she ever mentioned this gassy pain prior to dx but doesnot mean she didn't have them.


----------



## DustyKat

You are doing such a fab job Catherine...:hug: 

It's so hard to remember all that happens when everyday life still goes on. 

I think too that these kids develop such a tolerance to pain, hardship and inconvenience that the symptoms that don't have them doubled over or annoy the hell out of them don't rate a mention. Your Sarah said it best...



> She *just *felt gassy and sick.


...it speaks volumes ay? 

Dusty. :heart:


----------



## Catherine

Sarah fine.  Now down to 10mg pred.  Has swum 6 session already this week.  She doesn't seem to be as pale.

Made another call to the gi.

Just heard that Sarah's aunt has had a hip replacement, she only 54.  Grandma also two hips done before 60.

Of to research pred and bones.


----------



## izzi'smom

Glad she is seemingly better...but hate that feeling poorly becomes normal...


----------



## DustyKat

Good to hear that Sarah is swimming so well.  I am sorry to hear about your Aunt though. I hope she recovers well and speedily! 

Dusty. xxx


----------



## Catherine

Update on Sarah

She is down 5mg of pred today.

Sarah has decide to increase swimming over the school holidays, to await for 9 x 2 hours sessions per week.:ybatty::ybatty:

The only session she has decide that she doesnot want to do is dry land, she doesnot like running.

Still discussing iron infusion with GI.


----------



## Sascot

Wow, that's alot of swimming!  Glad she is feeling up to doing that.  Makes me feel very lazy! :lol:


----------



## my little penguin

Wow!!!
My kids are lucky to make it to the three recommended sessions a week only 45 minutes each.

Glad she is feeling better


----------



## Tesscorm

Wow!!  I'm with Sascot...  feeling very lazy right about now! :redface:


----------



## crohnsinct

Wow!  O is entering her first experience with doubles next week.  Everyday except Christmas Eve and Christmas day.  

O LOVES dryland though.  Running is her other sport but oddly likes the squats, planks, and push ups...that apple defimitely fell way far from the tree...perhaps a differnt orchard! 

I am so glad Sarah is feeling well enough to do all those practices!


----------



## Catherine

Update

The mri has been reviewed by the professor at the Alfred.  His opinion is Sarah has one small fistula.  It also his opinion that remicade would not help at this time.

My request for an iron infusion is not going well.  Her latest ferritin level is considered good and because she can swim 8-9 sessions a week her health is not being affected by the anemia.

The lab appears to have losted the test for aza levels so she is having that repeated.


----------



## crohnsinct

That is total crap about your iron infusion request not going well!  O was going to school everyday all day and doing 2 hours of parctice a night...swam a three day meet and was admitted two days later and got three infusions.  You can't judge these kids on what they are doing.  They are ridiculously strong and can fool the best of us. God bless them!


----------



## Catherine

Actually maybe i'm confused about where by request for iron is actually at.  Gi actual words were it not urgent.  She also said she could not have it done local hospital because she is under 18.  We could have it privately but she doesn't have admitting rights and gi who does is away.  Privately before 1 January would be no excess after  than I have a $400 excess.

She could arrange for Monash or The Children these are public hospitals with awaiting lists but free.

As you can see I am confused about where by request is.  

My language was wrong is my previous post, what mean is my request is no moving as fast as I hoped.


----------



## crohnsinct

Well I feel a little better about that...and I made a mistake in my post.  It should have said transfusions not infusions.  

Good luck with moving things along.


----------



## Clash

I hope they can get the fistula healed up and I hope things get moving along with the transfusion.


----------



## my little penguin

Speedy healing vibes your way....

:voodoo::voodoo::voodoo: on the iron infusion


----------



## DustyKat

Do they have any plans for the fistula or is it watch and wait? 

I hope you can get the Iron infusions hun. :hug: 

Dusty. xxx


----------



## Catherine

The plan is to wait for the aza blood results to come in, and hopefully increase aza.

Gi was posting us a new blood form on Friday, as it looks like test has gone missing.

They all using word think there is fistula.  Surgeon wants to see sarah in 3 months and off pred.  He said we could make appointment early if necessary.

His opinion if they need to go in look at the area the piece bowel needs to be removed there then.  He thinks this piece of bowel maybe causing the anemia.

I get feeling that surgery is in Sarah's future what we don't is whether it will be in the next 6 months, or 2 years or 10.

I have told the gi I would like the iron infusion done in January before start of year 12.

I am hoping if we get her hemoglobin levels up she will recover better if she need surgury


----------



## Catherine

Dusty, now that saying they think it a fistula.  I am right a fistula has two openning ,that means she has mostly likely got a tunnel between two pieces of bowel.


----------



## DustyKat

That is right Catherine. It is a tunnel, and from what you are describing it does go from one bowel loop to another. 

Dusty. xxx


----------



## Tesscorm

Sorry if I've missing something here, have misunderstood or am just plan naive :redface:... but aren't fistulas treated by remicade?  And, if yes, now that they are saying it is, in fact, a fistula - doesn't that mean insurance MUST cover the remicade in this case?

Or are they hoping the aza will fix it?

Didn't realize that just one area of inflammation could impact iron levels to her extent!   I hope you can arrange for the infusion!!!

And, I'm so sorry you're facing the prospect of surgery...  I do hope the meds will help and you/Sarah don't have to deal with surgery! :ghug: :ghug:


----------



## Catherine

Sarah a PDCAI score of 7.5, score needs to be above 30.  She doesnot qualify for remicade:voodoo:

They hope that  if they can increase aza that will fix the fistula.

This why I made comment your on thread that remicade use would a easy decision me for me to make I would use it  but we won't get approval.  So really easy for me to say I would use remicade when don.t actually have to make that decision.

Sarah iron levels have been low for years.  It not that they getting lower it mainly there not moving up much.


----------



## DustyKat

Not wanting to throw a spanner in the works but fistula's that originate in the ileum are notoriously difficult to heal with medication, including the biologics. That is not to say that they won't work, I just want you to be aware that they may have a higher chance of not working when compared with with other aspects or areas of Crohn's. 

Dusty. xxx


----------



## Catherine

Dusty I do remember you saying that.  It one of reason why I have totally accepted that we just monitor situation well almost.   The other thing about this area of active disease is that it has been active for a very long time it could seem on ultrasound 18 months ago as thickening.

In any case I am thinking of starting asking what the options are for treating a small bowel fistula in Australia.


----------



## DustyKat

Yikes! Did I! don't tell T! :yfaint: 

Thinking of you and Sarah, :heart: 
Dusty. xxx


----------



## Catherine

Sarah not completed two sessions of swimming this week.  She has told me that she awake each morning feeling sick in the stomach, it get better as the day go on.

She stopped swimming both times due to stomach aches.  Sessions at the moment are very hard.  They have been told they will repeat the set to they PB.

For crohnscit, the session is:
1500 fr
4 x 50 IMO (IM order)
100 IM
800 fr
4 x 100 IMO
200IM
4 x 200 IMO
400 IM
400fr

The only break is that each is a dive start, except backstroke which is a in water start.

Thinking about ringing GI and asking for faecal calprotectin  test.

Sarah has also said she not interested in doing EN.


----------



## Jmrogers4

Catherine, just thinking out loud - Do you have a lot of smoke from the fires where you are at?  I think it really affected Jack this summer or at least that's what it seemed like, as soon as the smoke finally cleared out, he started feeling better


----------



## crohnsinct

Mercy!  Those are hard workouts! Must be that time of year. Are they swimming long course because if so that makes it even worse...no turns!  

O just completed what her team calls "Hell Week"  Doubles every day over vacation and hard workouts.  She skipped a bunch also.  

Maybe jm has something with the smoke theory?  Yeah I would be getting that fecal cal also.  Poor pumpkin..I know how driven she is!


----------



## Catherine

Jm -no smoke from fires, only fires in our state are hundreds kilometres away.

This feeling sick on te mornings is not a new things.  It just I found it when questioned the stopping due to stomach aches.

Maybe it heat thing, they use a indoor pool for morning training, the kids are always saying the water is too hot.  On one days she stopped it was already in the 25c+ at 5 in morning.

Our swimmers do hard training now we are still in LC course but State Championship have already been completed in last week in December and kids are not back at school til start of Feb.


----------



## Catherine

Sarah done all the morning sessions but has skipped the afternoons due to sun burn.


----------



## crohnsinct

Catherine...I just remembered something.  Remember over the summer O was complaining about stomach aches and said she thought it was because she didn't drink enough.  said she always gets that pain when she is dehydrated.  

Maybe given the heat and the intense workouts she needs to up her water intake.


----------



## Sascot

Sorry to hear about the stomach aches!  I hope it is just the extra training and the heat.  I never feel well when it is too hot.  Must be frustrating for her when she wants to train.  Hope it resolves on it's own.  No harm doing the faecal calprotectin.


----------



## Catherine

Some of Sarah's blood results are back.

She is no longer anaemia, hemeglobin is 11.7 g/dL (11.5 - 16.5)

They have even written the comment, essentially within normal limits.

MCHC 31.2 g/dL (32.0 - 36.0)
Lymphocytes 0.9 (1.0-4.0) - this has not changed in months

Serum Folate 27.2 nmol/L (>7.6) - look like they have changed the folate test

Ferritin has increase to 30 ug/L  (15-165)
Iron is up 5 umol/L ( 7-27)
Transferrin Sat up to 8 % (13-47)

Maybe things are finally moving in the right direction:ghug::ghug:


----------



## DustyKat

As I started reading your previous update Catherine I was thinking the same as Crohnsinct, do you think dehydration may be playing a part in some of this? 
I think your thoughts on getting a calprotectin done is a good idea. I always like having that extra bit of reassurance one way or the other...whether it reassures me things a good or whether it reassures me that I have done the thing in pursuing things...win/win.  

Sooooooo good to see bloods that are heading in the right direction! Woohoo! Long may it continue that way! :thumleft: 

Dusty. xxx


----------



## Catherine

Sarah completed the hard set this morning, only 84 seconds over her PB from before dx.  The coach  said it was the best she had swum the set in ages.


----------



## DustyKat

Well done Sarah!  And mega happy for you Mum! 

Dusty. xxx


----------



## crohnsinct

YAY SARAH!  

I feel so silly watching O's times like a complete psycho swim mom but I know how you feel!


----------



## Catherine

Took my youngest daughter to the doctors today for unusual pimples and cold sores.

Dr said that sores were actually school sores. I asked how do you get school sores when she had not been in contact with any children, and my other girls don't them and they look just what Sarah gets with a crohn's flate. He then asked she was stressed, 13 year old girl who has been on holiday four weeks stessed.

After going though Sarah's history end up with blood tests.  At least now I will have baseline levels.

It amazing how you get what you want when bring up Sarah's history with the doctor who didn't order a colonscopy because in was too invasive for a 16 year old and dx ibs.:hug::kiss:


----------



## Sascot

I know the feeling, our paediatrician was a bit more careful with Amy after misdiagnosing Andrew for a year and a half! :lol:
Hope the sores go away on their own!


----------



## Catherine

We have doxycycline for the pimples and Bactroban for the school sores.

They do seem to take my concern more serious now.  

He also said Crohn's runs in families, so he would do bloods.


----------



## DustyKat

I hope your daughter is soon on top of things Catherine. :hug: 

BTDT too with the docs! Sarah undiagnosed for 18 months and nearly dead, Matt diagnosed within 2 weeks. What a difference a guilty conscience makes! :eek2: 

Dusty. xxx


----------



## Catherine

Thanks Dusty

I don't think this one has crohn's but  I do have a problem with doctor saying stress without any testing.

We first found out  4 years ago that had Sarah low iron when our then gp tried to say that her being tired all the time was due to stress.


----------



## upsetmom

Catherine did they do a swab test to see if they are cold sores?

I hope they're nothing to worry about....:hug:


----------



## Catherine

No swab done, doctor said he could they weren't were cold sores by looking at them.

There are two on lips, one under her nose, another on the line between nose and corner of lips.  She had these previously and then gp dx cold sores.


----------



## upsetmom

My son use to get sores under his nose all the time. The DR told us it was impetago.
He would give him cream and antibiotics till one day he did a swab and said no they're cold sores just use some cold sore cream. So all those years he was taking antibiotics for nothing

Get him to do a swab


----------



## Catherine

The cold sore cream is not working.  If he right the new cream should work in a couple of days.

The other medication for is for acne on her hairline which is not healing and starting to scar.


----------



## Catherine

Sarah get cold sore under her nose and they response to cold sore cream.


----------



## upsetmom

I hope the creams work


----------



## DustyKat

@upsetmom - was the impetigo bad? Usually antibiotics aren't prescribed unless it is severe. 

I hope the cream does the trick Catherine. 

Dusty. xxx


----------



## upsetmom

Dusty that's what they always thought he had till they did the swabs and said no its only a cold sore. It use to cover an area of about a 20 cent  piece


----------



## DustyKat

No offence to the doc but even if it was impetigo oral antibiotics seems like overkill, even worse since it wasn't. Ugh! 

Dusty. xxx


----------



## Catherine

The GI office has managed to locate Sarah's aza levels results.  She had trouble finding because the testing lab did not keep a record of where it was sent.

Hopefully the will lose the bill as well.  This test is purpose to cost $140.

Won't get the results until Friday when the GI is in next but what's another week when the first missing test was done 2 months ago.


----------



## DustyKat

Well hallelujah! and I second losing the bill! :biggrin: 

Roll on Friday! :goodluck: 

Dusty. xxx


----------



## upsetmom

Have your daughters sores started to clear up ?


----------



## Catherine

The sores have started to clear, but the one under nose looks like it going to scar.  The big pimples are also starting to clear but she has developed lots of little ones but she is happy her face is looking better.

Her bloods test have come in normal range but due to my trust issues with doctors I am going to have get copies and see for myself.


----------



## Catherine

Sarah results are back, her levels are not in range.  We are going to start gradual step up.  Moving to aza 125mg tomorrow.

She level is 180 range should be 235-450. 

This is a good thing we can move up the dose and hopefully stop the fistula.  

No bill as yet.


----------



## Catherine

Sarah was in pain this morning, rated pain at 4, didnot go to training.  When she got up 8 it was only 2.

This afternoon she completed a two hour swimming session, pain is gone.

She has been eating watermelon I have asked her not to eat the seeds.

We received a copy of the thiopurine metabolite testing results in today mail.

6-TGN 169 (235-450 pmol/8x10^8RBCs)
6-MMP 298 (<5,700 pmol/8x10^8RBCs)
6-MMP:6-TGN ratio 2 (<20 (11-20 bordline)

Back to monthly FBE and every second month LFT.


----------



## Dexky

So the numbers are trending in the wrong direction?  I hope she remains stable until the next tests.


----------



## Catherine

She only had test done once.  I must have got the number wrong when given over the phone.  But her numbers seem low.  She says she has not missed any doses.


----------



## Catherine

Sarah is in pain again. She is rating her pain at 6 is waking up in pain.  She doesnot want to go emergency, saying they will only do want they did last time.  She wants to ring her specialist in the morning.

I don't think aza is working, maybe just because the dose has never been high enough.


----------



## jmckinley

I hate to hear that she is in pain. I hope that the increase in the AZA will eventually get it under control. It bites that they "lost the results" and she has been taking too low a dose all this time!


----------



## Tesscorm

I'm sorry that she's having pain regularly!   I hope the increase can get it under control! :ghug:


----------



## Catherine

First available with GI 1 feb.

Went to gp for check up and new referral.  GP Rang GI back on 30mg pred

Had x-ray to rule out bowel obstruction.  Had blood drawn, she looked so bad they keep asking whether she need to lie down.  She end lying down for draw.

Then she threw up all over herself and the car.

Sarah now sleeping while we watch tennis.

I rang and spoke to the GI.  She said has quite severe disease with few symptoms:frown:

New plan if she in severe pain in the next couple of days we are to go emergency and have them ring her for treatment plan, which will be to start IV steroids.  This will either get her into proper remission or result in failure of steroid treatment, which is the first step for getting approval for remicade.

Does anyone know what the dose required to be considered failure of steroid treatment, the GI said 50-60mg but sure I read somewhere in was 40mg.  (This question relates to the Australian Medicare system approval process for remicade).

Sarah has severe disease 
Dusty i know you told me the fistula meant severe disease but it sounds much worse when GI says it.


----------



## my little penguin

So sorry to here
Hope the pred works and she gets to remission soon


----------



## Dexky

Catherine, she's had 3 pred tapers in a year.  What is the criteria to prove "steroid failure"?  Who gets to make that call??  Doctors or ???


----------



## crohnsinct

Oh Catherine!  I am so sorry to hear this.  Sending big chlorine hugs your way!


----------



## Catherine

Sarah will do 50mg pred for 2 weeks from today then taper.

This will either put her in remission or will help with qualifying for remicade.

She feels fine today.

We have a evening swimming comp, where she will swim 4 50 and hope to qualify for Victorian State sprints.

Tomorrow she is still planning to swim Brighton open water swim, starting with 5km and back up with a 1.4 km.:yfrown::yfrown:

@dexky, a course pred of 40mg with taper for least 6 weeks is needed as part of the qualifying process for remicade.  She previous courses were only 30mg.  This course will tick that box :shifty-t::shifty-t: So has to be done.

If happens again we will look at doing EN, I do not want her on pred:mad2::mad2: but boxes have to ticked.


----------



## my little penguin

Hugs I hear you on boxes ticked _ 
Same issue here 
But we got it .
Hope she is swimming in remicade soon


----------



## Catherine

Sarah missed her 50 back by 0.22.  She usually tired after meet but not tonight.


----------



## Tesscorm

So sorry to hear...  both about how Sarah's feeling and also that treatment must be decided according to insurance's check boxes! :ymad:  It's so unfair that this must be a factor in the treatment for our kids! :voodoo: :voodoo:

But I do hope it gets her into remission and feeling great!!!

Thinking of you! :ghug:


----------



## Catherine

Sarah is fine , she has no pain.

She completed her 5km ocrean swim and then back up a little over hour for the 1.4km swim with her younger sisters.

I am having trouble giving 50mg pred to this seeming healthy and fit girl.

The tears are very close to surface at the moment.  Sarah was dx a year ago yesterday.


----------



## DustyKat

I'm so sorry I am late to this Catherine. Had to work an extra day this week so have fallen way behind.  

Ugh! I wonder why in heaven's name they started her Pred at 30mg??? 

I don't recall if I have asked you this before but do you use the brand Imuran or the generic Azathioprine?

Anniversary's surely dredge up the raw emotions ay Mum...Sending loads and loads of love, luck and healing thoughts your way. :heart: 

Dusty. xxx


----------



## Catherine

We use imuran.

When Sarah dx there was miss match between level disease and symptoms.  My understanding is her disease was mild but the inflammation had already become chronic.

She is now the other way her disease severe but symptoms have gone almost completely.

30mg of pred worked well for her.

The first course of 30 I understand but second course needed to be higher so that could be used to met the first part of qualifying for remicade.

The main problem here is the maintence med is not working.


----------



## crohnsinct

Dear Lord!  Over an hour of swimming in open water?!  That girl is my idol!  O's too!  

I despise how confusing this disease can be and hope that soon you all get the answers and treatment that makes sense and that she totally kicks that 50 back...is the season done now?  Does she have to wait for next season?  In the US 13 and over swimmers no longer swim the 50's except for the 50 free.  O swam the 400 IM, 200 breast, 200 back and 200 free with a sprinkling of 100's last weekend.  7 swims and only 3 best times!  Not a fun weekend.


----------



## Dexky

crohnsinct said:


> 7 swims and only 3 best times!  Not a fun weekend.


Having no experience with swim comp., what is the expectation there^^?
7 seems like a lot for a 2 day meet and to have 3 personal bests in those 7 sounds incredible!  Is that what that even means??


----------



## crohnsinct

LMAO!  Yep you guessed it...7 events and 3 best personal bests.  The jury is out on how good that actually is.  Our team only competes once a month so the expectation is that they would do a lot better.  Doc also uses times as a barometer of how she is doing so the slip down to less than half best times was potentially sucky on both fronts.  However, coach says they are training hard and a bit broken down and I scanned everyone else's times on the results and she wasn't the only one so I am guessing it is a training issue...doc agreed to let her keep swimming...yay!  

Now she wants to run a marathon in October.  Rules are she can't till 16 but she can run a half...which means she needs a training buddy...any volunteers?


----------



## Jmrogers4

I'm with Dexky, pretty impressed here.  1/2 marathon is that like over 13 miles?


----------



## crohnsinct

Yep!  Even at my best pace that is 4 hours of running...there better be a fireman with a bottle of Cabernet at the finish line!


----------



## Sascot

Glad she is feeling better.  Sorry she is having to take the Pred.  Drives me nuts the things our kids have to do so they "tick the boxes".  Andrew's test was borderline that he would tolerate Aza, but they cannot prescribe the 6mp without failing Aza first - madness.  Hope this course of Pred kicks her into remission.


----------



## Catherine

We are still in LC season but she has no further chances to qualify.  Sarah has not PB anything.  She has times under the qualify times all 4 50 but they are to old.

The 5km took her under 1 hour and half.  1.4 km took 24 mins.

She had a blood nose in the 5km and keep swimming.  (She got a kick to the face).


----------



## Catherine

Pick up the girls' results

Kerry are normal, although there one result David wouldn't like

S 250 vit D 88 nmol/L (75-250)

I'm going to watch:

Her lymphocytes are slightly low
Ferritin is 31 ng/mL (20-200)

I was told Sarah were normal, these were taken before starting pred again.
Below are the results out of range

ESR 72 mm/hr (<20)
Total protein 60 g/L (65-85)
Albumin 37g/L (38-50)
CRP 13mg/L
Lymphocytes 0.7 (1.0-4.0)
Comment: there is a mild lymphopenia.  Essentially within normal limits

Good results
Hemoglobin 12.2 g/dL (11.5-16.5)
B12 638 pmol/L (150-700)

We have a mix bag of results.


----------



## Catherine

Been to the GI today.

Going to stay on ped 50mg for another 3 weeks, as her stomach is tender and test inflammation makers again before tapering.   This course will either work or it will a clear fail of steroid treatment.

Her inflammation makers are high for her.

Her b12 is in the middle of range now will continue to supplement.  Her iron is still far too low.

We will reduce iron back to one tablet per day of it can causes constipation

The x-ray was clear as there was no obstruction, but it showed constipation involving the whole colon.   So we now have constipation but normal bowel movements.

Treatment are constipation.

- Metamucil 2 tsp daily or psyllium husks (on going treatment)
- Movicol (per week)
- Dulcolax (short term), starting with one tablet tomorrow night, need to be home for at least 24 hours

Diet increase - fibre
- prune juice
- pear juice
- prunes
- kiwi fruit
- oranges (not juice)
- dried fruit


----------



## Catherine

We now have the gi mobile number.

Being given this number makes me nervious.  That the gi thinks we are going to have an emergency and to contact her urgently.


----------



## Dexky

Nah, Catherine!  He/she just finds you fascinating and wants to get to know you better!


----------



## CarolinAlaska

Catherine said:


> We now have the gi mobile number.
> 
> Being given this number makes me nervious.  That the gi thinks we are going to have an emergency and to contact her urgently.


Don't we all do this - think the worst of our news?  Hugs! :kiss:


----------



## Catherine

Sarah swum five events today, 100 fly, 100 br, 100 bk, 100fr & 200 Im

She did a long course PB in her 4th event the 100fr of just over 2 seconds. :soledance::soledance:

Sarah's GI is female, I don't think she many teenager patients, and Sarah would be one of a handful if that she has had from dx.

The mobile phone number was mentioned when were discussing what action to take in the event of severe  pain and weather we should go to the er. She said we could call her.


----------



## Dexky

Geez!  This is a properly named thread!!


----------



## Maree.

I think it's good that your GI gave you her phone number and may just reflect that she has a soft spot for Sarah and knows your not the sort of patient/patient family who are going to abuse having it.

Liam's GI gave us his mobile number at Liam's first appointment, I suspect he doesn't have any other child patients either.


----------



## crohnsinct

GOOOOOO SARAH!  A PB of over 2 seconds in a 100 LONG COURSE?!  That is fantastic and so well deserved! 

I agree..I would take receiving the cell number as a compliment...that you are a parent that will not abuse it and who can access a situation properly and knows when an emergency is indeed an emergency.  

Now here's hoping you never ever have to use it!


----------



## Catherine

Sarah saw the date for her next colonscopy in my diary.

She says she is over 16, so it her choice whether she has it and she not having it.  I said no it my decision she not 18 yet.  I still have control for another 6 months.


----------



## upsetmom

When is she supposed to have a colonoscopy?

I agree with you she's not 18 yet so it's your decision.
It's hard when our kids grow up.....and think they know everything.


----------



## Catherine

It booked for the 17th April which is why i hadn't hold her yet.  GI wants her off pred first.


----------



## Sascot

Oh dear, that's a tough one!  Don't blame her for not wanting the colonoscopy, but then who would really ever want to go through that.  I don't think kids (yes, 17 still sounds like a kid to me ) ever really understand the full extent of "what might happen" if they don't do/do something. At least if she has to have this one, you know there will be a clear picture of what's happening inside before she takes her medical care into her own hands!


----------



## Maree.

What's her issue with going?


----------



## Jmrogers4

Maree, spoken like a true Auntie.  I have a 17 year old niece myself and would probably say the same thing.


----------



## Tesscorm

Sending you lots of patience and hugs! :ghug:


----------



## Clash

Sending hugs and support!!!:hug:


----------



## Catherine

To my sister.

1. She 17 year old and knows everything.

2.  It was discussed at GI appointment waiting to after year 12. ( GI changed her mind.). GI not allow to change her mind

3.  She not sick.  Currently taking 50mg pred but that wasn't her choice.

4.  This will mean time of school and maybe SAC being rescheduled.

After making her point she changed topic to schoolie, and how I'm lucky she only want to go to Rosebud.


----------



## crohnsinct

Stinks when your kid is so smart and so able to make their educated point doesn't it?  Is she going to study law or politics...she would be good at it!


----------



## Maree.

I can remember year 11 & 12 and how obsessed everyone was about all those assessment items.  Schools have a way of making it feel like year 12 is the most important thing you'll ever do.   So I can understand why she's stressing about the SAT dates.

But your totally right that the medical check ups are a priority.  Realistically though how much time is she going to miss for this?  If its only a couple of days and she and her teachers know about it well in advances surely they can work that into the schedule.

I'm surprised she's only asking to go to Rosebud.  lol


----------



## Catherine

Rosebud that a interesting topic in it. self.  Two of her friends who will be 18 as well are not allowed to go to Queensland.  So it out.:ybiggrin::ybiggrin:

I have been told I can't stop her going to Rosebud but she has asked for a loan to paid for it.

Year 11 you only have to get a S on every Sac, the score doesnot count.

Year 12, the score on every sac counts its part of the end subject score.  This Enter score decide if you get into the course you want.


----------



## Maree.

I dread to think what sort of trip demands I'll get when Owen finishes school, which I'm sure will be made worse by the fact he'll have a 6 months gap between High School and Uni.


----------



## Catherine

Sarah has been on pred 50mg four weeks.  We had the blood test yesterday and hoping the inflammatory markers have gone down and she can start tapering.

The side effects are starting to kick in.  Mainly she is very short with everyone.  

Ringing the GP at lunchtime to see whether the results are in.  Will then try and contact GI office, is she not in i think i will send a sms to the mobile number instead of calling to give her the chance to look at the results before calling me back.

Hoping not to spend the weekend at 50mg pred.


----------



## Sascot

Hope they do phone with good news.  It's a shame Pred causes such bad side effects since it seem to work well for so many kids.


----------



## Clash

I hope the results are in and the news is good!!!


----------



## my little penguin

Fingers crossed!!!


----------



## CarolinAlaska

I hope you get some good results soon too.  Nothing like moving forward when your current location isn't ideal...


----------



## Catherine

Received SMS back to start taper,  she will look at blood tests and call me with results on Monday.


----------



## CarolinAlaska

What is SMS?


----------



## Catherine

SMS - a message that you type and sent by mobile phone.

I have our GI private mobile number.

I send her an SMS, saying blood tests result back can you call me to discuss.  Also can we start taper.

She replied by SMS, working at Austin absolutely start taper now will called office for results and call you later.

Got second SMS that she got tired up sorry she didnot get to the rooms in time but will call me Monday with the result.


----------



## Dexky

We call those texts Catherine.  It's great that you have that relationship with her!!


----------



## Catherine

Dexky, we call them texts as well.  I think I'm showing my age but I asked my 13 year old whether they are called still called SMS, she said yes but she didn't know what it stood for.


----------



## Catherine

Yes we are very lucky to have such easy access to our GI.


----------



## Catherine

The side effects of pred are starting to kick in, her face is swollen and she more acne on back and face.  Her face is slightly red.


----------



## my little penguin

Hugs .
Glad you spoke to the Gi
Hope you get good results monday


----------



## Farmwife

Catherine said:


> The side effects of pred are starting to kick in, her face is swollen and she more acne on back and face.  Her face is slightly red.


Poor girl. It's hard enough being a teenager. HUGS:heart:


----------



## Catherine

It's the one good things about her not being overly interested as she has noticed these are side effects yet and I am not going to tell her.

She is very happy to be taping pred.


----------



## upsetmom

Good idea.


----------



## Catherine

Sarah blood test results are all excellent according to her GI.

Esr 72 mm/hr (<20) no change

CRP  <1 mg/L dropped from 13

Hemoglobin 12.4 g/dL (11.5 -16.5)

MCHC 31.8 g/dL (32.0-36.0)

Has anyone else had high ESR with CRP below the bottom level for measurement.


----------



## Sascot

Not really sure why they would be so different.  My mom always says ESR is more reliable that CRP, maybe it's a more sensitive test.  Hope the Pred taper goes alright!


----------



## my little penguin

Crp is short term inflammation so it changes quickly.
Esr is more of a long term picture so it takes much longer to raise or lower the rate .


----------



## Catherine

Just looked at the blood test results again the gi sent me by sms + photo.  The csr result is there but there is no fsr result.

Look at the copy I received from the gp, the fsr is attached to back of the full blood results.  It not from the same lot of results, it actually dated last month that why there no change.

The results without it look really good. :rosette1:


----------



## Tesscorm

Stephen's ESR has also been high (above normal) when his CRP has been in the normal range.  I have also seen a bit of a trend when his CRP is lowering quickly but his ESR has only slightly lowered or has even gone up slightly.

I'm glad her results were good!!!  :thumright:


----------



## CarolinAlaska

Not uncommon for ESR and CRP to be different.  That is why the docs order both.  I hadn't heard that about the long and short term picture, but that makes sense.


----------



## Catherine

The swimming coach has noticed the change in her manner.  I was saying how short she is with everyone a home.  He said she just gives him the look.

She seems very tired but she is also training very hard.  She face is really puffy and her skin is getting worse by the day.

Has been at 45mg pred for 5 days now.  Going down to 40mg Saturday.


----------



## Catherine

Sarah had a great day at swim comp today.  She has taken five seconds of both her 200fly and 200fr times.  Her previous pd were from March & June 2011.  Her free for long course is now faster than short course pd.

Pred down to 40mcg today, all going well she will off pred in 7 weeks.


----------



## Dexky

Five seconds!!  That's a huge leap, isn't it?  WTG Sarah!


----------



## DustyKat

Whoa Catherine, I am so sorry to hear that Sarah is dealing with all this. :hug: Swim times are fab though! Well done Sarah! :medal1: 

CRP will respond to inflammation very quickly and that is why it is preferred as the test to indicate the response the treatment. ESR response is much slower so it has a corresponding delay in showing changes in the blood. 

Thinking of you hun, :heart:
Dusty. xxx


----------



## Catherine

Dekxy they are great improvement in times.  

What I don't get about the crp level it is that low after 4 weeks of pred it is unmeasureable.  I know this is a good thing.


----------



## Jmrogers4

Way to go Sarah!


----------



## Catherine

Sarah is fine.

She has developed a red patch of skin on her back about two cm across. She can't see it and she said it feel like a large pimple.  It not a pimple, it more like a rash of some kind.  It has three little bumps which would feel pimples.

It seems to gettting bigger slowly.

Currently just watching it.


----------



## my little penguin

Take photos from your phone - to show doc later
Add a ruler or coin to the photo as a point of reference 
Also mark edge with an ink circle


----------



## Catherine

Will take photo tonight.  She wouldn't let mark it as would show when  in bathers.

Thanks


----------



## CarolinAlaska

Does the rash itch or burn?  Are any more bumps forming?


----------



## Catherine

The rash is itchy but not sore, it is overally less red.  There are two spots in the rash that like red sores.  It 5cm long by 2 wide.  It is bigger.

Will take another photo in the morning.


----------



## Sascot

Is there a chance it might be bug bites that she is reacting too?  If she is allowed an antihistamine, it might be worth trying and see if it helps the itchiness and spreading.


----------



## Catherine

Could be but I don't think so but the weather is warm.  It our 10th day over 30C.


----------



## CarolinAlaska

Im actually wondering about shingles.  Does it look like a bunch of blisters all together in a cluster?


----------



## Catherine

Been to chemist felt it was maybe shingles or infection.

Went to the walk in doctors.

Who said it was a contact allergy and only the top layer of skin.  Said while its right to concerned about shingles, as Sarah says it doesnot hurt and she has had it for a week it would have been more by now spread more now.  What I only known about it for 3 days.

I have a script for hydrocortisone cream, but it not feel like a contact allergy and cream should not be used on broken skin or shingles.

At this stage I will try another chemist, and try see our regular doctors next week.


----------



## Catherine

Been to chemist who advise was go to another doctor.  He couldn't see how a steroid cream would help when she already taking 35mg pred and the shin is broken.

It doesn't quite look like shingles.  Treated with teatree.

Public holiday on Monday will try and see doctor early in the week.


----------



## CarolinAlaska

Shingles usually stays localized in healthy people.  I don't know what one would expect on pred - at least an outbreak of shingles is possible as the immune system is suppressed that is holding back her varicella virus (assuming she has had it).  Tea tree oil is a good choice - it is antiviral, antibacterial and antifungal.


----------



## Catherine

High dose pred and aza are both listed a risk factors for shingles.  Another risk factor listed for shingles is a family history of shingles. She has a first cousin on her father side who has had chickenpox 3 times?? and my mother has also had shingles.

Pred is also sometimes used as treatment for the pain caused by shingles, maybe this why if this is shingles she doesn't have any pain.  Shingles is also normally milder in children and teenagers.

My main concern here is not for Sarah but for a family friend who has been in contact with her who is having treatment for terminal cancer.


----------



## Catherine

I am now 90% sure Sarah has shingles.  The three little sores have now formed a crust.  

Sarah is fine, she is just annoy with me as I am checking the rash everyday.

I have told the family friend this morning that I believe it is shingles, he will tell his doctors.  His daughter may have touch the rash while applying sunscreen to Sarah but she has had the needle for chickpox.

I think we have lucky to have a mild case of shingles.


----------



## my little penguin

AS far as shingles-
only those who have not had the chicken pox or the vaccine for chicken pox are at risk  except for kids on immunosuppressants like IBD kids  )
DH had them last year - which cause DS to have titers drawn for varicella - just as precaution since he was on 6-mp at the time.

If i remember correctly they were going to give Ds an iummoglobin shot or something similar- so please make sure her GI/GP are ware since the sooner the better.
shingles and pred +aza are not a good combo at all 
hugs


----------



## Catherine

It a public holiday.  Sadly my daughter has decided to have opinion on her healthcare  and as the walk in doctor said it a contact allergy and couldn't be shingles as she was not in pain. (Thank you daughter as I know you told other people how much it hurt).:ybatty::ybatty:

I will try and contact the GI


----------



## Catherine

I spoken to the GI by text message.  Her response is as follows:-

"Well if shingles, usually very painful, and although pred not ideal for shingles, we can't wean much faster.  All other rash will be helped by pred as a rule.  Keep me posted."

Sarah is fine.


----------



## Catherine

One week on since I first saw the rash the redness has gone and I would no longer say it looks like a rash.  Sarah has been lefted with seven large dry brown spots.  The area now hurts but not enough to use pain killers.

The tiredness of the weeks leading up of the appearance of the rash are gone.


----------



## DustyKat

Did Sarah have chicken pox or the vaccine? 

Dusty.


----------



## Catherine

Sarah had chickenpox at round 2 year of age.


----------



## CarolinAlaska

I still think it was shingles...  if the pain persists, there are meds that can help.  I hope she doesn't need them though


----------



## Catherine

We have a cream called so zostrix which contains capsaicin.  I believe it is shingles too.


----------



## CarolinAlaska

Hugs


----------



## DustyKat

It sounds like shingles to me too Catherine, even down to the type of marking it is leaving. 

I surely hope she is over the worst of it! :hug: 

Dusty. xxx


----------



## Catherine

We now have a dx of shingles and viral illness.  Pred use is considered a risk factor.  There is a treatment for shingles but it has to be started in the first 72 hours.  This dr said there is no doubt it shingles.

Sarah has been home today with a cold.


----------



## CarolinAlaska

If the shingles is still active, and she is still on steroids, there may be a case for using the antiviral treatment of shingles anyway...


----------



## Catherine

Still has seven shingles spots seems to be on mend.

Sarah and I are off to Perth friday week, so she better be on the mend.


----------



## Maree.

Is Perth for swimming?


----------



## Catherine

Two days of swimming and four days holiday


----------



## Maree.

Fantastic, lovely place, we are hoping to get there over the Summer (in the Aus winter)


----------



## Dexky

I hope everything has improved by then Catherine!


----------



## Catherine

Where going to the 2013 Indian Ocean All Stars Challenge.

She has swum in this competition once before and got swim for the Aussie All-stars team.


----------



## Jmrogers4

I'll be cheering her on state side.  Go Sarah! Wooohooo!!


----------



## DustyKat

Wow that is fab Catherine! Well done Sarah. :thumleft: 

I hope the shingles is on the mend and you have a wonderful in Perth.  

Dusty. xxx


----------



## CarolinAlaska

I hope the shingles are all healed over and scabbed up or they may not let her swim.  Have fun with your holiday.


----------



## Catherine

Sarah's shingles were only offical dx after they had healed over.  She swum before they had healed over because we were told they were not shingles but a contact allergy.  One of the young members of her swim team now has chickenpox.

Also because the area with shingles is only 2 X 5cm it can be covered with a waterproof dressing.  The dr who dx the shingles want the area covered while swimming, only due to the risk of infection.


----------



## CarolinAlaska

I'm sorry to hear that about the swim teammember, but maybe it is for the best for them to get the disease.  I hope he/she doesn't get too sick with it.  That is a good idea about the waterproof dressing.


----------



## Catherine

We got Sarah's latest blood test results today.

The results are great, although her white cell count is 8.1, maybe higher count is due to the cold last week and the shingles.

Hemoglobin is 13.0 g/dL (11.5 - 16.5) highest ever tested.

The iron level have finally started to move.

   ........                     28/12/12         ....          25/03/13
Ferritin           ......    30.                 ....        32               Ug/L            (15-165)
Iron.              ......     5.                  .....       12.             Umol/L.        (7-27)
Transferrin.     ......    2.5.               .....       2.8.             g/L.              (2.5-2.8)
Transfer sat.   .......    8.                  .....        17.              %.               (13-47)

This is first time iron levels have moved, and I think it is due to higher b12 levels.

Pred currently 25mg.

I also thank everyone who has mentioned pred masking results.  I rang lefted a message for the GI asking whether we should re schedule the colonscopy as Sarah would have still be taking pred.

Colonscopy now planned for 22 May.


----------



## Dexky

Results sound great!!  When is she finished pred?


----------



## Catherine

The team member is quite young only 6 or 7.  This child had been immunised against chickenpox and the case is mild.


----------



## Catherine

She has another 4 weeks on pred, goes down to 20mg on Saturday.


----------



## Tesscorm

Glad the results are good!


----------



## DustyKat

It is sooooooo good to read these results Catherine!  

Onwards and Upwards Sarah! 

Dusty. :heart:


----------



## Catherine

We just got back from Perth last night, still on Perth time.

Sarah had a good comp. with a couple PBs and is feeling maybe a little sleepy.

I have posted a couple of pictures.


----------



## Maree.

Thanks for the photos it's lovely to see Sarah looking so healthy.


----------



## Catherine

Even the upside down one.  Yes she does look good, she would like lose 2 kgs.


----------



## CarolinAlaska

Where can I see the pics?


----------



## Maree.

I was able to see albums when I went to her Catherine's profile.


----------



## CarolinAlaska

I can only see her 2012 pics.


----------



## Catherine

I have sent you a friend request.  Used a private album.


----------



## DustyKat

Wow! Fab pics Catherine!  

Well done Sarah! :thumleft: 

Dusty. xxx


----------



## Catherine

Sarah's young teammate gave chickenpox to her brother and sister.  Her sister aged 13 end up in hospital with severe chickenpox. 

Sarah is well in herself and down to 10mg pred.

Sarah was telling how she would be off some of meds soon.  I replied yes your finish pred soon.  No she said the aza as well.

I tried to explained that most likely she would stay on aza until she decide to have a family.  If she had been a long stable remission she would have to consider coming of aza then, because it best not to be on it in pregency but being on aza is better than a crohn flare during pregency.  It a matter of weighing the risks.


----------



## DustyKat

Good to hear that Sarah is continuing to do well Catherine.  Long may it stay that way! 

Dusty. xxx


----------



## Catherine

Sarah had a stomach ache for last two days she says it not Crohn's pain.  Bad enough not to swim.

They found the bill for the aza blood test which was $100

I am thinking of asking for her aza levels to be retested.


----------



## Maree.

What does Sarah think of the idea of more tests?


----------



## Catherine

I only have to get it added to the regular blood test.   So it doesnot count as an extra test!!

They have to be done before the end of the month.


----------



## Maree.

Sounds good, given your going in anyway and you don't have to battle your teen to get her there, I'd just get it done.


----------



## DustyKat

Sounds like a plan Catherine.  

Where is Sarah up to with the Pred taper? 

Do you have any ideas bouncing around regarding the pain? 

Dusty. xxx


----------



## Catherine

She taped down to 5mg, due to have last dose on Friday.

She says it more a feeling of being sick in stomach not Crohn's pain.

I came home from work today with dizziness and stomach issues, so maybe it viral


----------



## DustyKat

Maybe Pred??? 

I don't want her to have issues but hoping it is viral if she does and it soon passes...:ghug:

Dusty. :heart:


----------



## Maree.

Glad to hear your feeling unwell :redface: 
(Evil but true :devil

Hoping it's just a virus and you both get better quickly.


----------



## DustyKat

^^^^:eek2:...Can you feel the love tonight...No! :lol:


----------



## Maree.

I admit it on hearing that my sister has stomach ache and dizzyness my first reaction was -- is ooh good that's reassuring :ybatty:!


----------



## DustyKat

Nothing batty about that Maree!


----------



## Catherine

Sadly I have a stomach most of the time.  And the reflex has come back.

Maree your concern is touching.


----------



## Clash

I'm hoping it is viral for Sarah! Love Maree's post!! But I do hope that Sarah gets to feeling better and this is a one off of some kind or another!


----------



## Dexky

Haha, I thought I was going to have to retract my former statement about how great sisters you were!  Glad there is a rational explanation Maree!!


----------



## my little penguin

Hugs
Hope it is just a virus and a mild one at that


----------



## upsetmom

I hope you and Sarah are feeling better today.


----------



## Sascot

Hope Sarah (and you) are feeling better.  Have to say relief does run through me if I know something is a "normal bug" instead of the Crohn's!


----------



## Catherine

Sarah now has a mild cold.

No 2 child, who says she  is fine, had one vomiting esposide tonight.  I have decided in light of this Sarah has a stomach flu.

Holding of blood tests for a week.


----------



## Maree.

Good news, thanks for the update.


----------



## Dexky

I'm sorry to be so happy that you and your other daughter are vomiting!…but I am!


----------



## Catherine

:ghug::ghug:Sarah finnished pred on Saturday.


----------



## DustyKat

Woohoo! The Pred is dead! :voodoo: And sending loads of luck that it stays that way! :goodluck: 

Dusty. xxx


----------



## Tesscorm

So glad!!!!!! :banana:


----------



## Catherine

Sarah feeling fine.

Starting first  day of colonscopy diet today and doing one drink of prep tonight.

Last blood tests good.


----------



## my little penguin

Good luck with the scope


----------



## CarolinAlaska

Glad she's feeling good.  Blessings for the scope and the cleanout!


----------



## upsetmom

Good luck!!


----------



## Catherine

This day 1, scope is not until noon wednesday


----------



## Dexky

Eek, a 3 day cleanout!!  I hope it's gentle on her.  Good luck!


----------



## Maree.

After our last scope experience I was thinking this sounded like a really good idea.  This first dose of meds a few days earlier to deal with any pre existing constipation and then careful diet for a couple of days, to try and make sure your starting from a good point sounds really sensible.

(Catherine sent me a copy of the instructions, will definitely show to our GI if Liam's having scopes in the furture).


----------



## Catherine

Dexky, the prep tonight was to clear any constipation.

There are was also a special diet for today and tomarrow. (Monday).  Lots of food to choice from just avoiding cereals, grains,nuts, seeds and fibre.  You just eat from the list.

Monday you also have a durolax tablet at night.

Tuesday - breast fast 2 slices white bread with honey or vegemite.

Light lunch - scrambled eggs with bread.  Then clear fluids.  No further solids just clear fluids.  Real prep starts at 5pm.

Scope 12pm Wednesday.


----------



## Catherine

We have a school close day tomarrow.  I spoke to the year 12 head and Sarah is not expected at school all week.

She wants to go school on Thursday but she has a sac starting on Thursday, and the only way to delay the sac is not to attend school.


----------



## Maree.

SAC - "School assessed coursework" (SACs) are the primary avenue of internal assessment, in Yr 11 & 12 program in Victoria. SACs are tasks that are written by the school and must be done primarily in class time; they can include essays, reports, tests, and case studies

I had to look it up, the terminology has changed since I was at school, so I thought I'd share what I found.


----------



## Sascot

Good luck for the scopes!


----------



## Catherine

Colonscopy results

Anus: normal

Rectum & colon: normal

Ileum: some possible mild inflammation.

The GI saw pin size red spots and scarring in ileum.  If this turns out to be active disease we will probably do a MRI.

Much improved results.:ghug::ghug:


----------



## Maree.

Fantastic news.  Hopefully the biopsies come back looking good too.


----------



## crohnsinct

Awesome news Catherine.  Keeping my fingers crossed for the biopsy results.  I can't remember...did Sarah have small bowel disease as well?  Are there any plans to check there as well?  

Maree: thanks for the explanation...you knew we would be asked Going to look up vegemite now...have heard of it in a song but never bothered to look it up.


----------



## ChampsMom

Yeah Catherine!  Great news!!  Praying the biopsies come back with out issue!

@Crohnsinct - I thought the same thing about the vegemite sandwich song, laughs..


----------



## Tesscorm

That's great news Catharine!!!  So glad for her!

Dexky - re the scope prep, Stephen had a horrible, horrible time with his first one (although this was while he was having his first flare and in hospital before diagnosis).   For his recent scope, I'd hoped to avoid the pain, etc. so I put him on a low residue diet for a couple of days, then the day before the prep I put him on 90% liquid only, hoping most would be already 'cleared out' before he even started the prep and he didn't have any difficulty with this recent prep (from what Catharine described, I did similar but with no meds until the last day) But, again, not sure how much of the problems with the first prep were due to being actively flaring???


----------



## upsetmom

Great news Catherine!!


----------



## Catherine

Sarah has small bowel disease, at MRI in October showed the colon as clear. And a problem 10cm above where a colonoscopy can reach with a fistula.

If these spots are not active disease we will most likely wait before doing further imaging.


----------



## Dexky

So..you are waiting on biopsy results??


----------



## Catherine

Yes, we waiting the biopsy results. 

This is a big improvement on the last colonscopy,  where we were told it was crohn's straight after the procedure.


----------



## Catherine

Dear daughter has lost 3 kgs in a week.  She thinks it the colonscopy prep.  Maybe it the almost 3 weeks break from swimming.

She coming home and getting straight into bed, she says is cold.:ybatty:

Do we all jump at shadows.


----------



## Tesscorm

I hope it's nothing!!!  And, yes...  I think it's become habit to jump at shadows for me too!


----------



## Maree.

Interesting you mention the break from swimming.  Liam lost all his weight when he hurt his foot and had three weeks off football.  As soon as the foot healed enough that he could play again his weight stabilised and he looked much much better.

I've been thinking that in his case at least exercise seems to play a critical role in keeping him healthy.


----------



## Farmwife

Yup, a shadow jumper for many years.

I hope she feels better soon.


----------



## Catherine

Interestly Rachel has stopped swimming completely and has also losted a couple kgs since.

The weight loss with Sarah not a concern as long as it doesnot continue.  She is currently 62 kgs.


----------



## ChampsMom

Muscle weighs more than fat - so maybe it is lack of activity?? 

Shell (aka - Shadow Jumper)...


----------



## CarolinAlaska

Hi Catherine.  Thanks for the update after the colonoscopy.  As for her feeling badly now, I think the cleanout/prep does cause inflammation for some.  Jaedyn was one of those too.  It took her about a month for it to all settle down after 2 cleanouts in 9 days.  What was the colonoscopy for?  Just to see if she was getting better, or has there been some problems lately?  Will she be back to swimming again soon?


----------



## Catherine

The colonscopy was to check disease level. But she has also complete 3 courses of pred in the 16 months since dx

Swimming start back last Tuesday but she only managed two sessions due to the colonscopy.  This week she is back in full training which will be 6 2 hours sessions.

She is glad she has lost some weight as her formal dress will fit better.

Also maybe her weight was a little higher due to the last pred course.


----------



## Catherine

Sarah's biopsies are not clear they show very mild ongoing inflammation in the ileum (1/3 biopsies).

Before doing everything drastic will test

6-methylmercotpurine
6-thioguanine
FBE
LFT

GI is hoping to sneak imuran up a bit.

Microscopic description

Specimen 1 three biopsies of ileal mucosa.  Two are near normal.  The third biopsy includes a focus of crypt distortion, active inflammation and granulomatous reaction.

Specimens 2 & 3 large intestinal mucosa. The appearances do not suggest a form of
Miscroscopic colitis.

Specimen 4: small quiescent inflammatory polyp.

Conclusion
Terminal ileum
Patchy active chronic granulomatous ileitis involving one out of three biopsy.  The appearances are in keeping  with Crohn's disease.

Transverse colon 
Normal

Right colon
Normal

Left colon
Small quiescent inflammatory polyp in a background of otherwise normal large intestinal muscoa.


----------



## DustyKat

How do you feel about the results Catherine? 

Dusty. xxx


----------



## Catherine

Feeling a bit sad.

Sarah has had mild stomach aches for the last few days.  She says it not Crohn's pain, it feels different.   There is gasto going round but she has no symptoms other than stomach pain.

She has been off steroid for 6 weeks, time before she lasted 4 weeks.

I think she is failing aza.  I think the improvement is due to steroids.

We have a follow up with the GI tomarrow.


----------



## DustyKat

Good luck with the appointment Catherine. :hug: You are both in my thoughts. :heart: 

Dusty. xxx


----------



## Catherine

Update after GI visit.  I don't think Sarah is as well as she appears:

-  very small area of inflammation in the TI.
-  anaemia is back 11.1 g/dL
-  mild lymphopenia is back

Blood test done to check aza levels.

- if levels of aza still low will increase aza
- will try remicade (but she doesnot qualify and her index score is lower the last time), will refer to clinic, said there are ways.
- asked about LDN (it is a possible choice).

She took at picture of shingles scars,  looked at the positioning etc.  Pretty sure this was shingles but should have healed more.  Going start applying vitamin e.

What is clear Sarah responds really well to pred.  Not so sure about aza.


----------



## DustyKat

I am so sorry to hear this Catherine. :hug: 

It sounds like your GI is well on top of things. I hope you get a clear direction to take soon and Sarah is soon on top of things both physically and clinically. :heart: 

Dusty. xxx


----------



## Sascot

Sorry to hear things are as good as you hoped.  Hope the increase in Aza does the trick for her. Sounds like the GI was thorough.  Fingers crossed things improve soon!


----------



## Dexky

How long has she been on 125 mg aza?  Is it common to go higher?


----------



## Catherine

She been on 125mg for 3 months.  I think it reasonly common to go higher if the levels are not in range.  If the dose is calculate by weight her maximum dose is now 124mg.  The blood test will tell us whether we can go higher.

We don't have many opinions as her index score is under 5 on the children's index.


----------



## Tesscorm

Can't it sometimes take 3 to 6 months for the aza to work?  Is it possible that she just needs more time on the current dose?  (However, perhaps, I'm thinking of another med??)


----------



## Jmrogers4

It does take a while for the Aza to work, we were at that point of increasing dosage - Jack was at 125/mg and we were still not there his father in comparison was at 150/mg and twice his size.  The GI backed the Aza all the way down to 50/mg and added 100/mg of Allipurinol to make it metabolize differently, that is when we finally saw a huge difference and he was on that combo for several years.


----------



## Johnnysmom

Our GI swears this isn't the case, BUT he cannot explain it....  Johnny's therapeutic levels are higher when on the same dose if he does not eat for one hour before and two hours after his dose.  And no milk products either during that time.   We are able to get away with a smaller dose when we followed this rule.


----------



## Catherine

I have the GI looking into what it about milk.  Sarah doesn't have milk but she does take calcium at the same time as aza.


----------



## Catherine

Sarah has been on aza for 16 months starting on a dose of 50mg.  Her dose has increased with weight.  She has a gain in weight of 20kg.

Sarah competed today and was way off her times. The coach says she looks pale and tired.  She looked really good a month ago.


----------



## crohnsinct

Oh Catherine!  I am so sorry to hear this.  Sometimes I wish O didn't swim and run that way I could keep my head firmly planted in the sand.  When they compete and you see the effects of the disease staring you in the face it is so hard.  How are her spirits?  I hope the bump up in Aza works and if it doesn't that you are able to get approved for Remicade fast!


----------



## Catherine

Sarah is sleeping lot.  It a very busy time at school with school with the first semester drawing to a close.

Both Sarah and Rachel sit the 3 hour GAT exam on Thursday and major pieces of work are need to be submitted for her folio subjects next week.

Many photos are being taken of things being dropped into liquid.

Her hemoglobin has dropped from 13 to 11.1 in 6 weeks.

I am finding hard to believe increasing aza in someone who already has mild lymphopenia can be a good thing.  I do understand why it needs to happen.

The funning thing about the GI appointment was when the GI gave her the warning about letting people take photos of her (rash).


----------



## DustyKat

Oh Catherine...:hug:...I am so very sorry to hear that Sarah is having problems again, and no doubt the stresses of end of term aren't helping things, bless her. :heart: 

I hope the increase in Imuran does the trick without compromising her bloods. Ugh! 

Roll on better times for your lass! 

Dusty. xxx


----------



## Catherine

Thank you.


----------



## Catherine

Sarah's bloods test shows a bounce back.

Hemoglobin 11.9
Lymphocytes 1.2

Comment: essentially normal

PVC 35.4% (37.8-47)

:ghug:


----------



## Clash

It is good her HBG came up some. Was she ready to get the exam over with today? I hope she improves and has more energy soon!


----------



## Catherine

The exam was yesterday our time.

She is off at her year 12 social night.  The girls looked all grow up in full make and formal dresses.


----------



## Clash

Duh! I forgot to add in the time difference! They always look so grown when their formal gowns and all made up, you realize how fast time flies!!


----------



## Dexky

Clash said:


> Duh! I forgot to add in the time difference! They always look so grown when their formal gowns and all made up, you realize how fast time flies!!


Too grown!


----------



## Catherine

Rang to follow up 6TGN & 6MMP only to find the test has to repeated.

Received new form test pathology lab which says please mark time sensitive test urgent.

Do think a lab attached hospital would be more like to get the procedure right?


----------



## upsetmom

Why do they have to repeat the test ?

We usually have bloods done at the hospital.


----------



## Catherine

I don't know what went wrong, only that the lab faxed the GI that listed tests couldn't performed.

Sarah was dx as adult and has a private GI.  The normal local pathology labs seen to have a problem getting this test right.  I wonder whether a lab attached to a hospital would be a better choice.

This is not a Medicare approved test.  It a private test and costs $140.  So don't think it done very often.


----------



## DustyKat

Ugh! Sounds like they left it sitting around too long if it is time sensitive. I am sure it is blood that is stored at room temperature so handling could be an issue too if they don't get their act together. 

I am pretty sure that it would be an 'away' test for the labs around here so it would have to be sent to a lab elsewhere and my guess would a Sydney hospital for us?? 

I would suss out who does the actual testing. 

Good luck with the next one! 

Dusty. xxx


----------



## Catherine

Had blood taken this morning.  Had two tubes taken one following the instructions on the repeat test and one following their book of instructions.

They even rang the lab and the instructions don't match.


----------



## Catherine

Ok the test is processed by the Gastro.... lab at Boxhill Hospital.


----------



## kimmidwife

Catherine,
How has she been feeling now that exams are done? I hope now that she is less stressed she is doing better. Stress affects these kids so much! I just want to wrap them in a big bubble to protect them.


----------



## Catherine

School holidays started today, no school for two weeks.  Sarah is doing a training course to become a swimming teacher this weekend, Monday and Friday she going to RMIT to try uni for the day.  There also lots of school work to be completed over the break.

The school stress in only going to increase as its only four months to final exams.


----------



## Catherine

Dusty for your information don't do the 6TGN & 6MMP test on the Friday before the long weekend.

The test has to be processed in a hospital lab and received within four days from the blood being taken.  The test takes up to 14 days for results.  The test is actual performed at a number of Melbourne hospitals.

Next time will get this test done on a Monday or Tuesday.  The woman from Boxhill Gasto lab was very helpful.


----------



## DustyKat

Wow, Sarah surely has a lot on her plate for the holidays! I hope she enjoys her course and her time at uni.  

Ugh, I always hated these last few months and I know it will be just as stressful for you Catherine. :ghug: 

Thanks for the info about the metabolites!  I will make a note of that. 

Dusty. xxx


----------



## Catherine

Saw the eye specialist today.

Her eyes are fine.

I knew that pred could result in cataracts and I didn't know that aza could also cause cataracts.  Both with long term use.

Follow up in two years except if she does another course of steroids.


----------



## upsetmom

Catherine said:


> I didn't know that aza could also cause
> cataracts.  Both with long term use.


Thanks for telling us l didn't know this as well.


----------



## Catherine

GI called Sarah's AZA level is 18.

We increased the medication and the level when down.

I have posted a separate questions.


----------



## Catherine

Posted a couple of photos from Sarah's formal


----------



## Tesscorm

Those are great pics!  What a gorgeous girl!!!


----------



## upsetmom

Nice photos.
Sarah is beautiful!!!.:ysmile:


----------



## Jmrogers4

Beautiful, love the dress.


----------



## ChampsMom

Where?  I can not find them...


----------



## Tesscorm

ChampsMom, go to Catherine's public profile (click on her name on one of her posts and a drop down menu will appear), once on her public profile, you should see her pics along the right side (down a bit).  However, I think you will only see this if you are 'friends' with Catherine - you many have to send a friend request.


----------



## Catherine

New plan starting aza 150mg tomorrow, and retesting levels in two months.


----------



## ChampsMom

Oh Catherine!!  She's LOVELY!!  I love the color of her gown - and so naturally pretty - wow!!  Thanks for sharing!


----------



## DustyKat

^^^^:eek2: What did I miss! Looking, looking...

WOW! Sarah looks fab Catherine! How very proud you must be and rightly so! :queen::queen::queen:

:mademyday: 

Dusty. xxx


----------



## Clash

Oh my what great pics! What a beautiful young lady!! Thanks for sharing!


----------



## Catherine

Sarah looks well and appears to have no symptoms you would expect with a flare.

But she is now missing her 200 times by between 15-20 seconds.  She is falling sleep after school which means she is up later doing homework.  The workload is very heavy.

Bloods were done on Friday, hopefully they will tell us something.

I suggest to Sarah that maybe she should have her vitamin levels done.  She wanted to know whether if they were good could she stop taking some of the one she taking.  I said yes maybe change what your supplements your taking.   

She going to try dropping swimming sessions if the tiredness does not improve.


----------



## DustyKat

Oh Catherine, I so hope Sarah is able to find the right balance, poor love. :ghug:

Such a stressful time of year with no end soon in sight. I use to hate coming home from work to see Matt asleep on the lounge. Something as simple as that broke my heart, I hated it.  

Good idea to get the bloods checked hun.  

:hang: Mum! You are doing brilliantly. :heart: 

Dusty. xxx


----------



## crohnsinct

Oh Catherine!  Sorry to hear about the fatigue in and out of the water.  That is usually our first sign things are amiss with O.  I hope it is just stress and normal teenage fatigue.  Keep us posted!


----------



## Catherine

Received call back with Sarah blood test results (missed call).

The message said that Lymphocytes  have dropped 0.7,  stay on the same dose and we will discuss on Wednesday.  The results are confusing but the same thing happened last time the dose was increased.


----------



## Dexky

Do you expect they'll want to increase aza again or has anything else been discussed?


----------



## DustyKat

What is her lymphocyte count normally? 

Dusty. xxx


----------



## Catherine

I think we are holding steady and retesting in a couple of weeks.


----------



## Catherine

She had mild lymphopenia for most of last year.  She went on pred and the anemia and lymphopenia resolved.


----------



## DustyKat

I was curious because Matt consistently sits at 0.6 - 0.7. 

Dusty. xxx


----------



## Catherine

Sarah seems to sit between 0.7-0.9 when not on pred.


----------



## DustyKat

Hmmm...I am curious as to what others experiences are so I think I will pose the question.


----------



## CarolinAlaska

I'm sorry she is so fatigued.  Poor girl.  Not anemic?  I think the vitamins are a good place to check.  How is her weight doing?


----------



## Catherine

I don't know whether she has anemia, the only number mentioned on the phone message was the lymphocyte count.

I rang the GP office to get a copy of the blood test results for my discussion with the GI on Wednesday.  But the GP practice has now decide we need written authorization from the GI before they will release any the results order by the GI to us.

This practice normal release all results once they check by a doctor.

Really don't want to drive 40 minutes to get a copy of the results.


----------



## Catherine

GI will post results.

White cell count is 5.3
Lymphocytes 0.7 (1.0-4.0)

Total Protein: 62 g/L (low)

Only have part of the results as the GI sent a photo.

Instructions repeat bloods in two weeks, she will also post more forms.  I requested vitamins be done due to tiredness.


----------



## Catherine

Sarah is sick again.  She has had a headache and nausea for two days.  They did a heavy dryland session yesterday before this all start, Sarah says its not related.

Her sister has stomach ache when bending from the session.

The gp dx Sarah with migraine and asked whether she had tried ibuprofen as panadol was not working. 

End up with Maxalt as I said she can't have ibuprofen.

It doesn't appear to me to be migraine.  Maybe stress? Had her bloods done as they are due tomorrow anyway.


----------



## Catherine

Sarah photographic theme is high speed photographic and she has been taken photos in a dark room with a flash.  My husband thinks this could be triggering the headaches.

The flash is blinding.

Problem solved. (Back in bubble)


----------



## Dexky

Really??  That was it??


----------



## Catherine

Gosh I hope so.  She has slight cold symptoms today.

I think it bit of everything.  School is very busy.  She is currently has 2 or 3 sac per week.  Her folio subjects practical work need to completed by I think the 18 September.  This is include three completed garments with hand dye fabric for textiles.  For photography, she has a produce least 3 works.


----------



## Catherine

Miss Sarah is 18 today and doing well


----------



## Jmrogers4

Happy Birthday Sarah!!!
:bdayparty:


----------



## Mehita

Woohoo!


----------



## my little penguin

Happy birthday !!!!


----------



## crohnsinct

Doing well!  What an awesome birthday gift!  HAPPY BIRTHDAY SARAH!  Now go get those driving hours in!


----------



## upsetmom

:birthday2:.

Happy Birthday Sarah


----------



## Farmwife

Happy birthday to your girl!!!!


----------



## Tesscorm

:birthday2:  HAPPY BIRTHDAY!!!!   :birthday2:


----------



## Sascot

:bdayparty:  Glad she is doing well!


----------



## DustyKat

A GREAT BIG HAPPY 18TH BIRTHDAY TO SARAH! WOOHOO! 







I HOPE HER DAY HAS BEEN A FAB HAPPY AND HEALTHY ONE!

Dusty. :heart:


----------



## CrohnsKidMom

Happy Birthday, Sarah!!!!


----------



## Catherine

Miss 18 and one day, is taking herself to the doctors today to get a doctor certificate for school.

She has a cold and is too sick to go to school.

What could possibly go wrong!!

She know to tell them she has crohn's
She know what medication she taking.
She also know her specialist name.

She knows not to get any script filled without calling me first.

:ybatty::ybatty:


----------



## upsetmom

How did her appointment go ?


----------



## Catherine

Dx Common cold.  

Treatment panadol and lots of fluids.

And she got certificate.


----------



## Dexky

Catherine said:


> She knows not to get any script filled without calling me first.
> 
> :ybatty::ybatty:


At 18, they know everything!!  As long as she still knows mom's phone no., she'll do just fine


----------



## crohnsinct

Wait!  How is she getting there?  She can't drive!


----------



## Niks

Belated Happy Birthday!!!!   :bdayparty:

The girl did good at the Doctors!!!    xx


----------



## Catherine

My darling husband got to take her to the doctors.

This was to the local clinic that i only now use for non serious things because they bulk bill.

Dr asked her how she been as they hadn't seen her 2 years, and did the standard checks for the common cold.  Sarah told her has Crohn's and takes imuran.


----------



## Catherine

Year 12 textiles

http://www.crohnsforum.com/album.php?albumid=721&pictureid=2815

A study of dye and candle wax.

I couldn't get the picture into the thread.

8 days and two more projects to be completed.  Why am I the only one stressed about this time frame:ybatty::ybatty:


----------



## Tesscorm

Very nice!  You've probably mentioned it somewhere at sometime but what is it that Sarah is studying, is it related to fashion or design or is this course just because of a personal interest?


----------



## crohnsinct

In the word's of Lily from purple purse fame..."Wow!  Just about all I can say is wow"  That girl is talented!


----------



## Catherine

This is a year 12 subject, final year of high school.

The subject is called Product Design and Technology and she is doing the textiles area.

She also doing photography.

She hopes to do textile design at uni.  There is only one course in all Australia and they take 40 students.  Otherwise she looking at graphic design.


----------



## Maree.

She probably is very stressed she's just showing it differently. Procrastination is one of the ways that stress sometimes presents.


----------



## Catherine

Alright Maree. She takes after her mother.  Textiles room open at school on Monday and Wednesday until 5pm.  She tells me this will be enough time to screen print and sew t-shirt.

She will finish sewing the practice for the dress tomorrow.  Somewhere in there i need to get her model to try it on and then she the needs to cut, dye the real thing before Wednesday when she will sew it.

She is also reshooting the strawberry and milk photos tomorrow as they need more light.


----------



## Sascot

So not alot to do then :ybatty:.  Hope it all goes well and finished in time


----------



## Maree.

Sounds like a challenging week for all involved.  Good Luck


----------



## Niks

That's so good!!  She's going to do so well


----------



## ChampsMom

Cool!!


----------



## DustyKat

Wow! That is brilliant Catherine...well done Sarah. :dusty: What a talented lass you have and how very proud you must be.  

Hope you don't mind if I add it here cause it is so fab!:


----------



## Catherine

Sarah's sick again.  Only symptom is a stomach ache.

Monday morning had panadol and it got much better.

This morning got up a 2 am to take panadol still had a stomach this morning and stay home from school.

Had quick trip to the doctors, who rang the specialist office (GI on holidays) to soon to be sure what it is.  Her bloods look good done on Saturday.

Soft food diet for the next 2 days, and back to the doctors on Friday if no better and bloods.  We also trying treatment for constipation although she has normal bowel movements.

She says it feels like Crohn's pain.

On a positive note the Screen printing is complete and most of the sewing of the t-shirt, and so is the practice dress with a couple changes to be made so it fits the model better.

The dinning room has so survived strawberries being dropped into milk.  The tablecloth was not so lucky.  Only a few more milk photos to go, then she moving on to dropping fruit into a fish tank.  Not sure the carpet will survive this.  Not sure water, food dye or ink, and carpet make a good combination.


----------



## Maree.

Hopefully when the stress of this set of projects is over her stomach will settle down too.  I'm sure the strain must be contributing.

Hang in there.   I'd suggest, getting a large tarpaulin and covering the whole floor, then setting up the fish tank in the middle of it,  it's not worth taking any risks with food dye and carpet.


----------



## Tesscorm

I hope it is just the anxiety over completing the projects! :ghug:  Glad to hear they're almost done.

I'm with Maree...  get everything covered!   Ya gotta love these projects!


----------



## DustyKat

How are things going Catherine? :ghug: 

Dusty. xxx


----------



## Catherine

Had her back at the doctor's today, she was noticeably less tender than Wednesday, her pain level is also lower.  Imflammatory markers are normal.

Dr wants her to continue pandol for pain.  As soon as the pain is manageable she takes nothing.

Ferritin level is 30 so doesnot need iron? No sue about this one.

I ready what our GI back!


----------



## DustyKat

I so hope all this is in line with her HSC schedule Catherine and once it is over all goes back to normal. Fingers, toes and everything else crossed! :ghug: 

Dusty. xxx


----------



## Catherine

T-shirt complete.

Screen printed project.


----------



## DustyKat

Another wow Catherine! Love it...

Would you like me to add it to your post? 

Dusty. xxx


----------



## Catherine

That would be great


----------



## DustyKat

Done.


----------



## crohnsinct

Looks even better right side up:ytongue:


----------



## Catherine

I have posted album showing the clothes on Sarah's little model.


----------



## CarolinAlaska

Glad to hear she is feeling better.  Cute little shirt.


----------



## Catherine

A quick update on Sarah.

Sarah has decide to stop swimming, today would have been her last day.  Only she has been away from school for the last 3 days and now has bronchitis.  She says she is better has not coughed all day but she only coughing at night.

School broke up today for the 3rd term holidays.  These are holidays are not holidays when your in year 12.  The first week she spending do a folio preparation course at RMIT, least hour each way by train and study for exam  The second week she has five practice exams at school and need to complete her textiles folio.


----------



## DustyKat

Thanks for the update Catherine.  

Do you mean stopping altogether or is the season over? 

I can well imagine what these holidays will be like, bless her...:heart: 

Oh my, I hope the bronchitis soon settles and doesn't knock her about too much in the interim! :ghug: 

Dusty. xxx


----------



## Catherine

She has decide to stop swimming all together.  She says she not enjoying it anymore.  Her coach told she just wasn't willing to work hard enough to get her times back.  The only times she has done pb has been while she has been on pred.

She looks well but !!!!

I don't think is as well as she would like us to believe.

She has decided she does not have to take our advice.  She has a party tomorrow night with a sleep over and this stage she is planning to go even although she hasn't been school in 3 days and is taking more medication for the bronchitis.

Life with an adult child.


----------



## Niks

I know that feeling!  It is so hard when they get older and you start to lose control over their lives.

Hope she is better and doesn't make things worse, but sometimes they have to learn by their own mistakes :eek2:

There's always a plus side when they give up their activities, you'll find out you have SOOOOOO much more time and wonder how on earth you managed to fit in all the training, competitions etc!

xx


----------



## Tesscorm

I hope she begins to feel better soon.  Too bad the 'holidays' don't sound like they'll give her much time to rest. 

I think lots of kids, at this age, start to prioritize and find their sports have moved down a couple of notches.  There's so much going on in their lives, the expectations from coaches start to seem excessive given all the other demands on their time. 

And, yes, with you on them not listening to us...  As hard as it is for us to watch, sometimes they do just have to make the mistakes and learn from them. :facepalm:  I swear it's got to be one of the toughest things to accept, when we've been protecting them their whole lives!  I try to convince myself that what they'll learn from this 'one' mistake, will save them from making a bigger mistake later.  (this is my bubble... :lol


----------



## Clash

So sorry to hear about the bronchitis. We are in the same boat with the independence. C already has his weekend planned out even thought it seems as if he may be in a flare. I'm going with live and learn approach but goodness it is hard!

Wow her holiday doesn't seem to be a holiday at all, goodness!! Hope she is well soon. My older non-IBDer got to the age where our softball world ended. It had been our whole life for 7 years and she decided to walk away. I thought how will we cope not being involved with that world. It was so much easier than I thought, no death heat days spent at the field all day and half the night, living off concession stand food or spending most weekends in hotels of towns we never really saw past their softball park!!

Hope she does well in all that lies ahead of her and things are under control quickly with her health!


----------



## Tesscorm

Yes, exactly what you said, Clash, re the hotels, concession stands, the vague memories of town names that I think I visited (but only saw arenas or soccer fields)! :lol:  After so many years, I did think I would feel the loss more than I actually have - miss the games but don't miss the practices, the rushing around, the politics, the anxieties, etc.!


----------



## DustyKat

Ugh, hell Catherine. Excuse the language but the coach sounds like a total arsehole.  Would she have been able to maintain her swimming when she finished school and moved on to uni? 

I so know the rise of independence in a Year 12 Crohn's student. It was my Sarah's Annus Horribilus, she probably didn't think it was but I did! All turned out well in the end though and from the sound of your Sarah, I have always had the impression she is a very sensible lass, this stretching of the wings will be just that and all will fall into place at the right time. Good luck mum. :ghug: 

Thinking of you! :heart:
Dusty. xxx


----------



## Catherine

Swimming doesn't end for us, we still have youngest swimming 5 mornings a week.

The coach is actually right Sarah is unwilling to put in to amount of training required to get her times back which would be 10 x 2 hours sessions per week.  Whether her health will ever be good enough to allow this is another thing.

If she get into her first choice uni, her travel time will be 2 and half each day.  This is only if we drive her to station otherwise the travel time will increase to about 4 hours per day.

She would also like to get a job.  Her allowance does not meet her needs.

So no she won't have time for swimming when the uni year starts.


----------



## crohnsinct

Well at least she was smart enough to walk away.  My oldest (non IBDer)  knew she wouldn't be swimming in college but still had us pay the fees thinking she would at least continue to train for fun.  That was a laugh.  

But totally different when it is their bodies not allowing them to push the way they used to.  Prednisone times?  We are still trying to match those prednisone/blood doping times O got right after she got out of the hospital and had received mega doses of Prednisone and three blood transfusions....Her coach keeps asking if we could just put her back on the roids....sure if you want to take away her NCAA eligibility!


----------



## Catherine

Sarah stay at her friend last night and is so much better.  Her bronchitis must have been bacterial as she has improved so much since starting the medicine for it.


----------



## DustyKat

That is so good to hear Catherine.  

Onwards and upwards to Sarah! :heart: 

Dusty. xxx


----------



## Catherine

My Sarah is tired but she had a great week at the folio course, today the last day.

Final exams are in 4 weeks, and she added a boy to the mix of everything else that going on in her life right now.

To quote Dusty, onwards and upwards.


----------



## Catherine

Sarah's GI is back from holiday today, gosh I missed her.

All Sarah's blood test look good, and we are getting copies in the mail.  And a form to check aza levels.

She also is completing Sarah's supporting letter for her SEAS application and posting that too.

Now the really good news is Sarah's calprotection level is 193.


----------



## Mehita

Woohoo!


----------



## Clash

Woohoo, good news!


----------



## Johnnysmom

GReat news!!!

Yea for 193!!!!!:dusty:


----------



## Catherine

Sarah has very mild anaemia. 

  Her haemoglobin is 11.3.  White cell count is 3.7.  Lymphocytes are 0.7 

On the blood test leading up to this one.  The comment has been essentially within normal limits

This time the comment changed to: The total leukocyte count is at the lower limit of normal.  There is a mild anaemia

She has been very good taking her aza but not so good with taking the vitamins at night.

Six more days of high school then a week study break.  VCE English is on 30 October.


----------



## Catherine

Sarah finishes high school today.  Her outfit was finished at 8.08am this morning and left for school at 8.10am, she knows how to cut it fine.

Text from GI says regarding AZA levels, interesting but now in therapeutic range and non toxic range, so right where they should be.


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## Catherine

Received results in mail today.

6-TGN 291 (235-450 pmol/8x108 RBC)
6-MMP 1269 <5,700 pmol/ 8x108 RBC)
6-MMP/6-TGN 4  (11-20)

B12 has dropped from a high of 638 to 366 pmol/L
Folate is 1080 which I feel is better than over 2000.


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## Catherine

Sarah asked me the morning whether I think she is losing weigh.  One of her friends mentioned that she thinks has loss weight.  Her weight is currently 58kg.  She stopped swimming 6 week ago.  There is no difference on the scales since then but she has lost  4kg in the last 6 months.


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## Catherine

Sarah completed her exams, last Monday.  Has started univ/college interviews.  She has been told by one TAFE college they will accept her.

She is off to schoolie!! on Saturday.

And the boyfriend in moving in with him sister, about 10 min down the road.

Tonight is Graduation.


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## Tesscorm

:dusty:  Looking forward to seeing the grad pics!!


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## Jmrogers4

Congratulations Sarah!


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## Mehita

Great job, Sarah!


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## kimmidwife

Congratulations!!!!!!!!!!!


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## my little penguin

Congrats


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## DustyKat

Woohoo! Well done Sarah.  

I so hope Sarah is able to go where she wants, bless her. 13 years of hard slog…one chapter closes and another opens…onwards and upwards Sarah! :heart: 

Where is schoolies at? 

Dusty. xxx


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## Catherine

Sarah and her friends have gone to Rosebud which is about one hour doen the road.  It a seaside town.


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## Catherine

Vce results come out Monday.  Her results were good but all subject scores were scaled down.

The best news is she received a letter from her first choice univ course saying that she would received an offer if she preference them first.

The official offers come out on the 16th January.


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## DustyKat

Well done Sarah!  

:mademyday: 

Dusty. xxx


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## Tesscorm

Wow, congrats Sarah!!  She must be so happy knowing she'll 'good to go' with her first choice! :dusty:


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## crohnsinct

YAY, YAY, YAY!  All that hard work paid off!  What a good girl!  Tell her Congrats!


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## Jmrogers4

Congrats! Well done Sarah


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## Catherine

Sarah looks good.

She is sleeping a lot and not eating regularly.  Is this a normal teenager thing?  
She mentioned in pasting that she is now 55kgs.:ybatty::ybatty:

She has another two months holiday.

Her hemoglobin is 12.3 g/dL (11.5-16.5) which is high for her.

PCV is 35.7% (37.0 - 47.0)

They even feel the need to comment that result were "essentially within normal limits"


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## Tesscorm

I think the holidays can really throw things off...  but, hopefully, not _seriously _off.  Since Stephen's been home, he's been sleeping lots and his appetite goes up and down...  made Christmas breakfast (his favourite meal, favourite foods) - he ate a bit but said he wasn't hungry, a bit later, said he wasn't feeling well but not cold/flu type 'not well', then throws in 'I have a canker sore too'   Then, we go out for our family Christmas dinner, he eats three servings and says he feels completely fine. :yfaint:  And, this has happened a couple of times over the holidays???  But, for the most part, he looks good (I've had him under eagle eye!  :lol and seems to be acting 'normal'.   So, I'm leaning towards just busy schedules, heavier foods than usual, etc....

Sarah just finished her exams and assignments...  could it just be that she's gone from that stress straight to all the holiday activities and she's just in 'recovery mode'?


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## Catherine

It is probably a holiday thing but she has managed to lose in lose 3kg since giving up swimming (in 3 months).  

Some would be muscle loss but 3kg seems like a lot for muscle loss.

She does have a summer cold.

She is now 5kgs under what her GI thinks would be her idea weight.


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## Tesscorm

I forget... does she drink any nutrition shakes?  Stephen still drinks one or two every day (even since he's been home, he came to ask me where I had them and put a few in the fridge himself...  so, I'm thinking he doesn't just tell me he's drinking them )

Would she consider drinking one or two a day to get some extra calories in her every day?  If she drinks smoothies, Boost even has some recipes on their website that use the Boost shakes in smoothies.


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## Catherine

What can I say teenager girls and weight.  She need to eat three meals a day.:ybatty::ybatty:

She drank the drinks prior to dx and just after dx and hasn't touch them since.  They made her feel very sick.
.
She having folate, b12, iron and d done with her next bloods.


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## Tesscorm

Hugs!!!  yes, I know teenage girls and diets! :yfaint:

I hope all labs come back fine!


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## Catherine

She is not actually dieting, just skipping meals as no school to remind her when to eat.


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## Niks

Skipping meals sounds like a teenage thing to me!  I guess it is something to keep an eye on.

Good luck with labs xx


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## Sascot

Hope it ends up being nothing to worry about! So hard to tell with teenagers


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## Catherine

She is also decide to stop taking asthma preventer.  She says she is find pie but her coughing wakes me in the middle of the night.:ybatty::ybatty:

She believe she doesn't need the medicine as her asthma is mild.


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## my little penguin

Catherine
I will get some papers for her.
The death rate is even higher for mild asthmatics since they tend to be more lax about their asthma .

Wow

So not looking forward to teenage years


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## Farmwife

Ditto ^^^^^

Grace has illness /cold/exercise induced asthma. Before daily meds she always went near pneumonia every time she got sick. Now she doesn't and recovers quicker.

Still teenagers have to learn the hard way some times.


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## Catherine

Thanks mlp

She was first dx with asthma as 8 year old.  Her presentation was very similar to my sister is both case parents were told they had a nervous cough.  In Sarah's case the cough cleared up in 3 days of trailing reliever meds.

My sister was dx with asthma in her mid 30's.  She was told by her specialist that she was the most severe asthmatic he had ever since who had never had an asthma attack.


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## Catherine

Sarah tells me she back on her asthma medication because I told her to take it:eek2::eek2:

She has accepted a place at RMIT to study textile design. :ghug::ghug:

Her overall health seem good.

Onwards and upwards.

It will be two years since dx tomorrow.


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## DustyKat

Well done Mum and well done Sarah! :congratualtions:

I shan’t say happy anniversary though! :eek2: But rather may the months and years that follow that anniversary only get better and better! Good luck! 

Dusty. xxx


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## Sascot

Great update.  Hope she really enjoys her course!


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## Tesscorm

Great news!! :dusty:   Glad she is feeling well!


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## crohnsinct

Haha "because I told her to take it"  Congrats on your daughter realizing that you actually know what you are talking about! 

Congrats to Sarah for the Textile Design spot...it is obvious to the committee she has a talent...so glad the school realized it as well!

We also just passed a two year anniversary.  Eerie eh?  Didn't realize we were so close in our paths.


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## Clash

Awesome news, how exciting!


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## Catherine

Sarah has managed to get herself a part time job.  Starts Sunday.:ghug::ghug:


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## upsetmom

Where's she working?

It's good when they get their own money, they actually think twice before they buy something....well my daughter does.


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## Catherine

KFC, they started hiring univ students as all the high school students are going back to school this week.


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## crohnsinct

Boy!  No grass grows under that girl's feet.  What a go getter!


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## Catherine

Sarah is now a qualified swimming teacher.   Just has to get level 2 first aid, then she can start job number 2.:eek2::eek2:


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## Sascot

Sounds like she's getting on really well! Congrats to her


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## crohnsinct

Wow!  Like I said a go getter!  I hope she doesn't get to busy to remember to eat!


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## Jmrogers4

Way to go Sarah!


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## Catherine

crohnsinct said:


> Wow!  Like I said a go getter!  I hope she doesn't get to busy to remember to eat!


Don't think that's will be a problem.

Job no 1 has roster her on for 3 hours per week at the moment.

Job no 2 will give her one permanent 5hr shift, hopefully 5hrs in the water will make her hungry.

Univ is 16 contact hour per week and that doesn't start until 3rd March.


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## kimmidwife

Wow that is awesome! Good for her!


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## DustyKat

Well done Sarah! :medal1: 

Onwards and Upwards to your future! 

Dusty. xxx


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## Catherine

Thanks everyone.  Sarah is completing her first aid on Sunday and as of today she now has 3 shifts next week for job number two.

This should make her feel hungry.  If 12 hour in water doesn't make her hungry nothing will.


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## Catherine

Sarah is eating more after swimming teacher job.  

Boyfriend has comment on weight loss I think he is concerned.  He has Celiac disease with all the issues it brings.

Sarah applied for youth allowance and is receiving enough to buy a sandwich a fortnight.  But she got a health care card:eek2::eek2: This was a surprise in the mail.


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## DustyKat

And what a nice surprise to get! Woohoo!


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## Catherine

A very nice surprise!!!  She had $450 worth of scripts last year.  I am very grateful!!!


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## Mehita

What is a health care card?


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## Catherine

Without a health card we pay $36 for prescription with a health card we paid $6.

It also gives public transport discounts.

Really its a low income discount card.


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## Catherine

Her calprotectin has come back a 84 (normal <50).  GI has decided time for a visit, although only a very mild increase.  Weight now stable at 55kg.

Don't know what to think anymore.


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## Catherine

GI visit is next Friday.

Her weight is still 55kg.  She is much more active and appears to be eating well.  She attending uni 4 days a week.  Working 2-3 shifts week as a swimming teacher and 2 shifts at a take away place.  She is also starting a modelling course in a fortnight.

Her energy levels are good, she just very thin.


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## Sascot

Sounds like she is doing well. Hope the appt goes well


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## DustyKat

Good luck with the appointment! :goodluck: 

I so hope all continues to fall into place for Sarah, she is doing so well! :ghug: 

Dusty. xxx


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## kimmidwife

Glad she is doing well! Hope the appt goes well!


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## Catherine

Thanks everyone.  Appointment is tomorrow.  Just can't understand why she so thin!!


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## my little penguin

Good luck on Thursday !!!
Let us know what they say


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## Tesscorm

Good luck!  It sounds like she's doing really well! Hope her thinness is just because of her busy lifestyle!


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## Catherine

GI visit.

It was agreed that Sarah should maintain her weight at 54kg :eek2:but the GI would like it to be 1-2kgs higher.  The weightloss may have been due to giving up swimming.   If she can't maintain weight by eating she needs to use a supplement like Sustain.

Overall she look well, she bloods are all normal except hemcrit (this due to prolonged anemia).  There is nothing in bloods to suggest any possibility of thalanemia.

She is truly in clinic remission, calprotectin is 84.  The aim is to get this below 50.  Retesting in a month.


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## DustyKat

:thumleft::thumleft::thumleft::thumleft::thumleft::thumleft::thumleft:

Woohoo! Fab update Catherine. Long may it continue. :heart:

Dusty. xxx


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## kimmidwife

Great update! Glad to hear about the remission!


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## Catherine

Sarah has completed her first semester of university.

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

I have added at new Album for semester 1.


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## Tesscorm

:dusty:  So great to hear she's doing so well!


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## DustyKat

Fab update Catherine! And long may it last! :dusty::dusty::dusty: 

Dusty. xxx


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## AZMOM




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## kimmidwife

Glad to hear she is doing so well!!!!!!


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## Catherine

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


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## DustyKat

I am so very sorry to hear this Catherine. :ghug: 

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

Dusty. xxx


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## Catherine

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.


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## Catherine

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.


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## Catherine

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.


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## DustyKat

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. :ghug: 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


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## Catherine

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.


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## Catherine

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)

:ack:these results are not normal they heading in the wrong direction:ack:


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## Maree.

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.


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## crohnsinct

What an awesome Auntie! :rosette1:


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## Catherine

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!!


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## Maree.

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?


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## Catherine

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.


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## Catherine

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.


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## DustyKat

I am so sorry to hear this Catherine, sending much love and hugs your way! :ghug: 

Thinking of you and your girl. :heart: 

Dusty. xxx


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## Catherine

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.


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## DustyKat

That sorta rules out March then.  

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

Dusty. xxx


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## Catherine

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.


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## DustyKat

Goodo, sounds like things should pan out well then.


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## crohnsinct

Catherine said:


> Boyfriend has been set the job of providing name and where in London he works.


Nothing says love like finding a doctor!


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## Catherine

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:shifty:  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.:ywow:

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


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## Maree.

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.


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## kimmidwife

Ugh! It is so tough letting them grow up!  But I guess we have no choice!


----------



## DustyKat

There is a reciprocal health agreement between Australia and the UK Catherine so it would be worth throughly examining what you can and can’t 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-g186216-c170541/United-Kingdom:Medical.Nhs.Care.For.Australians.html


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## CarolinAlaska

That's rough, Catherine.  I think I'd be freaking out.


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