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My swimming girl

Location
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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.
 
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!
 

Catherine

Moderator
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

Well-known member
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!
 
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
 
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Catherine

Moderator
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.
 
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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

Moderator
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.
 
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.
 

Catherine

Moderator
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.
 

Catherine

Moderator
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

Moderator
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.
 

Catherine

Moderator
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.
 

Catherine

Moderator
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.
 
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

Moderator
Staff member
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

Moderator
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

Moderator
Staff member
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

Holding It Together
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

Moderator
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

Moderator
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.
 

DustyKat

Super Moderator
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

Moderator
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.
 

Catherine

Moderator
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

Moderator
Staff member
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

Moderator
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.
 
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

Moderator
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

Moderator
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

Holding It Together
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

Moderator
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

Moderator
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

Moderator
Staff member
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

Moderator
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

Moderator
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

Moderator
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.
 

CarolinAlaska

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

DustyKat

Super Moderator
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

Moderator
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

Holding It Together
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

Moderator
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.
 

Catherine

Moderator
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.
 

DustyKat

Super Moderator
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
 

Catherine

Moderator
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

Holding It Together
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

Moderator
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.
 

Catherine

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

Catherine

Moderator
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.
 

Catherine

Moderator
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.
 

Catherine

Moderator
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.
 

Catherine

Moderator
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.
 
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

Super Moderator
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

Moderator
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

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

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