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

And happy to hear that your friend is beginning to feel better after surgery!
 
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.
 
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:
 
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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!
 
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.
 
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.
 
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...
 
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 !!!
 
:congratualtions::cheers::congratualtions::cheers::sheep:
WHOOP! WHOOP!- glad she is doing so well!! xxxx
 
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.
 
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.
 
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
 
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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:
 
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! :)
 
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.
 
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
 
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.
 
Wow! Fab update Catherine and what a wonderful present! :):):)


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

HappyBirthday.gif


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


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

Dusty. xxx
 
Wonderful news and a great way to celebrate her birthday!!!

:banana: :banana: HAPPY, HAPPY BIRTHDAY SARAH !!! :banana: :banana:
 
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!
 
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.
 
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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
 
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:
 
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.
 
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
 
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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...
 
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.
 
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
 
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.
 
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
 
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.
 
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.
 
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.
 
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
 
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.
 
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.
 
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
 
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.
 
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.
 
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
 
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.
 
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.
 
So glad to hear she's looking and feeling well!!!

And, congratulations on the award!!! :medal1: Woohoo!! :applause:
 
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
 
Awesome news all around. How wonderful about the award. I love surprises! You will have to let us know what it is for.
 
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:
 
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Great job Sarah!!! :medal1: You must have been so proud! :D

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

congrats02-congrats-congratulations-happy-smiley-emoticon-000266-large.gif


You must be so proud Mum and rightly so!

Dusty. :rosette1:
 
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.
 
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!
 
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.
 
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:
 
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!!!
 
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.
 
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.
 
:(So sorry to hear that.
I'm sure for her not to go has to be hard on her but twice:eek: I'm sure your both waiting for tomorrow.


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

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