# New Referral



## Catherine

Got a referral for my younger daughter to GI today.

Kerry doesn't really have any GI symptoms.
- she has mild stomach aches which could be from swimming training.
- she has not grown in the last 12 months
- awful skin

The GP ordered the following bloods tests
- Full Blood Examination 
- Coeliac screen
-Urea
-Electrolytes
-Creatinine
-Vitamin D - Serum
-Liver Function Tests
-Iron Studies
-Cholesterol
-Trigs & HDL
-Blood glucose
-TSH
-B12
-RBC Folate

Our appointment is on 9 December, hopefully I will paying for peace of mind.

Hopefully this just a overly concern mum.


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## Cross-stitch gal

Sorry to hear about Kerry.   I hope her doctor appointment goes well and if anything is found that it will be an easy fix. :hug:


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## upsetmom

:ghug:..I hope everything's ok. 

How old is Kerry?


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## Catherine

She 14 and half.


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## Niks

Is she small Catherine?  I stopped growing at 14, I think some girls just do.

It's worth all getting checked out, really hope all is good with her xxx  :ghug:


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## Dexky

Awful skin like acne??


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## DustyKat

Oh my Catherine...:ghug:...I know the feelings you would be having only too well. I hope more than anything that for you and Kerry that remain just that, feelings. Sending loads of luck and well wishes that all proves normal! Good luck! 

Dusty. xxx


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## Catherine

She 5ft 1, has a size 9 foot, a wrist X-ray at 11 gave a expected adult height of 5ft 7.   Maybe she mean to small but we have always felt she would be between her sisters in height.

She has cystic acne (including in her ears) has not cleared with acne treatment.  Little sores that continue to form under her nose.


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## CarolinAlaska

Aw, I'm so sorry your daughter is having these symptoms and that you even have to think about another child with problems.  Has your daughter had any pubertal changes?


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## Catherine

Yes, she should be middle of final grow period.


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## araceli

I am so sorry Catherine. I know how you feel.  I hope is nothing serious. Sending hugs your way.


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## Catherine

Rang for Kerry's results today.  They are marked need discussion.  So I am seeing the gp for results tomorrow.

I hate waiting. :ybatty::ybatty:


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## Cross-stitch gal

Don't blame ya. :hug:


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## Farmwife

Yes waiting is the hard part. I hope all is well.


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## Niks

Fingers crossed for results tomorrow. Will be thinking of you xxx


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## upsetmom

Good luck with the GP today..:ghug:


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## Tesscorm

Good luck at appointment!  I do hope it's nothing serious!! :ghug:


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## kimmidwife

Good luck at appointment!!!!!! Hope if anything is wrong it is easily fixable!!!!!


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## Catherine

Kerry has low vitamin D 54 nmol/L (75-250)

Going to start supplementation with 1000IU per day.

There is a problem with her iron levels:

S Iron 45 umol/L (5-30)
S TRF 3.3 g/L (2.0-3.5)
S TRF 55 % (5-40)
S FERRITIN 17 ng/mL (20-200)

The advice on the iron is to discuss with the specialist.

RBC FOLATE 2749 nmol/L (>800)
This result is consider normal, but it very high.

S Total B12 369 pmol/L (200-700)
This level has dropped from 420 on 10/01/2013

PLATELETS 141 (150-450)

Lymphocytes 1.4 (1.5-5.0)

Any opinions of whether GI is the right specialist?


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## DustyKat

In view of the growth failure, stomach aches and her sister's diagnosis I think it is as good a place as any to start. At least you can get the ball rolling and get whatever tests you need (MMA) and whilst doing so buy time to gather your thoughts. 

Any chance of getting the appointment moved up? Was the GI cc'd into these results? 

Dusty. xxx


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## Catherine

GI was not cc in on results.

The appointment is the first available.  It the same practice as Sarah's GI.


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## crohnsinct

I agree with Dusty.  Keep the faith!


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## DustyKat

I would ring and fax the results to them. Then say you have concerns about the results, the GP asked that you discuss the results with the specialist and in view of your other daughter's diagnosis you would like, if at all possible, to have the appointment moved up. 

If they are nice about it or not I would also add that unless they have a child that suffers with IBD or the like they can't possibly know what it is like to have to wait and watch. Hey, it's worth a try...:wink: 

Dusty. xxx


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## Catherine

They know me, when I booked the appointment, they apologised for not being able to give me something sooner.  They have two pedi GI and the other is booked out to January.

I will ring and get on the cancellation list. Will also talk to Sarah's GI when we get her aza level back.

I really thought these blood test would  be clear like they were in January.


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## Catherine

Feeling better about everything today.

Off to Hazelwood pondage so kerry can do a short swim.  She felt she wasn't ready for the long swim so is doing 2.5 km.


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## DustyKat

I hope your day is a good one Catherine. :ghug: 

For me 2.5km would be a marathon! :yfaint: 

Thinking of you and knowing the feeling of seeing results that aren't expected. :heart: 

Dusty. xxx


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## Sascot

Hope they can get a quicker appointment. I agree a GI seems as good a place to start as any. Good luck getting some answers


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## Farmwife

I have to say that I was thankful we pushed for a GI visit for my son.
From start to finish it was 4 months before he was scoped.
Thanks to his sister's past they jump right on the ball.
At least we know now that his scopes were good (for the most part).


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## Catherine

Sarah was dx with in 5 weeks of us receiving a referral to this clinic.  

Kerry successfully completed her 2.5 km swim with a 5 min pb   My child who doesn't usually burn is burned on her arms and back.

Dusty, is 2.5km is short when your other choices are 5 and 10km.


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## DustyKat

Sunburn, ouch.  I hope it fades fast! :hug: 

I bet it is short but still insurmountable to me! :lol: 

Dusty. xxx


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## Dexky

Catherine said:


> Kerry successfully completed her 2.5 km swim with a 5 min pd.


What does this mean?  What was her total time?  I couldn't imagine swimming that far!!


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## Catherine

She swum to 2.5 km in 58 mins, 5 mins faster than last year.  The course was quite windy this year and weather quite warm at 25C, and water 23C.   The water is used to cool the powder station.


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## crohnsinct

O says "OMG!!!!!!!"  Open water, windy and no flip turns!  That is amazing!  Congrats to her!


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## my little penguin

Yeah second that ^^^^^


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## Catherine

Kerry has developed a cold sore? under and in left nosal passage and there also appears to be one on the right side on the top of nose.


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## Catherine

Sarah's GI response was yes paediatric gi the way to go.  Need to rule out Coeliac disease etc.

I wondering whether I should take her back to the GP and get inflammatory markers and faecal calprotectin done prior to the appointment with GI.

The need as much information as possible prior to the appointment due to cost issues with visits to the paediatric gi.


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## my little penguin

Can you just call the GP and ask for a script for the tests?


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## Catherine

No but the out pocket amount with the GP is $30, where as the Specialist will out pocket will be approx. $180.


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## Tesscorm

If it's possible to get the tests done prior to the apptmt, I would do that!  The more info you have going into the GI apptmt, the quicker you can move along.  :ghug:


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## Sascot

I agree if you can get some tests before the appt then that would be a good idea.  Less waiting around.


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## crohnsinct

I vote test before appointment.  Save time and money!


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## upsetmom

Catherine why do you pay to see the GP isn't the visit covered under Medicare?


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## Catherine

Due to the poor treatment we received from the bulk billing practice we were using prior to Sarah's dx we moved to a non bulking practice where we have an out pocket amount of approx. $30.  

Our old practice ordered an ultrasound for Sarah prior to dx which show thickening of bowel, and gave instructions on what tests should be performed if their was clinical signs that IBD was possibility.  The doctor told us the test was clear, and Sarah illness was due to stress and ibs.  They wouldn't give us copies of any results.  Because we took the doctor at their word no further action was taken until she become very sick.

Sarah's GI boss told us that it was she had clear that she had visuable inflammation on the ultrasound. We waste 6 months while she got sicker and sicker.

We now only used the bulking practice when certificates are needed for missing school, when we know it was nothing more the cold.

As you can see I have major trust issues with doctors.


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## DustyKat

Have you managed to get the bloods yet Catherine? 

Dusty. xxx


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## Catherine

Actually haven't found time to get her to the gp.  It seems silly to miss a day school when she not sick.

Gots of swimming and dance classes happening at the moment.

Cold sores I mentioned in a early post have gone away but she developed a new one yesterday on the lip.


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## DustyKat

That’s understandable Catherine. :hug: 

Has she previously been prone to cold sores, before these latest ones? 

Dusty. xxx


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## Catherine

She seems get them in groups.  These two lots are very close together,


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## Catherine

Saw the pedi GI today, he believes there is no reason for concern.

All bloods pretty much normal.  Iron (ferritin) although out of range is still what you could reasonably expect for a her age development and there is no anemia.  Vitamin d is low but is at level you could expect comming out of winter.  Folate there is no upper limit and nothing to worry about in a otherwise healthy child.

Height she is is just under 50 percentile and weight just over 50.

She is relating all stomach ache to swimming and they are not bad enough for her to stop activity.

So not reason for any testing.


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## Cross-stitch gal

Good news!  Hopefully things will just sort of work themselves out for her then. :hug:


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## ZestforZen

Sounds like good news Catherine, must be difficult worrying about the worst case scenario! Good luck I hope she stays well.


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## Sascot

Reasonably good news.  Hopefully she is right about the swimming causing the sore tummy.


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## DustyKat

Thanks for the update Catherine.  

Sounds like all is pretty stable with Sarah which is fab! 

Do you feel the same as the GI…that there are no grounds for concern with anything? 

Dusty. xxx


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## Catherine

I actually don't know what to think.  She has zero GI symptoms.  She will complete current course of vitamin d

Then probably see the gp for retesting of full bloods, b12, folate, iron, and d.

Half me thinks I am worrying about nothing but we didn't push hard enough with Sarah.


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## DustyKat

What were Sarah’s last Vit D levels and how much are supplementing with?


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## Catherine

Sarah vitamin d level have alway been low normal.

Sarah issues started with abnormal iron results.

I don't think  Kerry has Crohn's but GI did mention that high folate levels can be caused by bacteria making folate.  But as she healthy he is not concerned about this.


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## DustyKat

Ugh, I think I am getting confused! Sorry!  

Sarah: Have you considered supplementing Vit D? 

Kerry: I hope more than anything she doesn’t have Crohn’s but I think for your own peace of mind I would keep a general eye out for any symptoms and even without any apparent anomalies I would have bloods run every 6 months just in case things are in the early stages. Again, hoping not though! 

Dusty. xxx


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## Catherine

Sarah takes calrate which is calcium and vitamin d.

With Kerry I think it maybe SIBO.


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## Catherine

For future reference:

Kerry is 160cm and 47kgs.


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## DustyKat

How much Vit D is Sarah taking and what was her last level?


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## Catherine

Sarah takes 500mg per day of vitamin d.  Last result I have is for 3/3/12  60 which is considered in range.


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## Catherine

Kerry saw her eye specialist last week.  Kerry mentioned to her specialist that she has night blindness.  Specialist asked whether she had celiac disease.  I advise the blood test was negative.

So we are awaiting on vitamin a level and further eye testing if vitamin a is ok.


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## Catherine

Quick update on Kerry.

Vitamin A result was normal.

She started treatment again last week for severe acne.

Her ferritin level is now 14.
Vitamin d is now normal (which it should be at the end summer and taking supplement)

GP has asked that she start supplementing and order faecal calprotectin at my request.

Current symptoms
Bad skin (moderate to severe cystic acne)
No growth over summer
Stomach ache with dry land training (sometimes travelling to the back)
Cold sores
Slow healing sores


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## DustyKat

Thanks for the update Catherine. :ghug: 

I am so very sorry to hear that Kerry is having problems.  What is your gut telling you? 

Dusty. xxx


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## Catherine

I don't know what to think.

I actually don't understand why the GI didn't want to treat the low iron 6 months ago.

But also don't understand with a drop from 17 to 14 the gp wants to treat the low iron with twice the dose rate for an adult.  As in two ferro-grad c tablets per tablets per day.

The chemist said that it can be use at higher rates if advised by a doctor but has never spoken to anyone else who has been advised to do so.


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## DustyKat

:ghug: 

Can you ask the GI or his nurse the reasons why? 

Dusty. xxx


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## Catherine

The GI made feel like I was looking for something that wasn't there and any further testing would not find anything.

My oldest daughter must have had symptoms other low iron.  This was all said in front of my then 14 year old.


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## DustyKat

{HUGS} to you Catherine.  

That sucks! Well let them walk a mile in your shoes and not have the dread that another of your children will end up with this disease. Off handedness and flippancy is the realm of those that nothing to fear. :ghug: 

Dusty. xxx


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## Catherine

He did say I could have faecal calprotectin and inflammatory markers but Kerry wasn't interested.

What are usual causes of low iron?


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## DustyKat

The most common are: 

Dietary - not enough in intake. 

Bleeding - whether through a medical cause and/or for females menstruation. 

Increased need - Growth spurts and puberty. 

Activity - large amounts of exercise/training can increase the body’s need for iron.

Absorption - you would well know about this one. It doesn’t necessarily mean that it is IBD but that would be one cause. 

Dusty. xxx


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## Catherine

DustyKat said:


> The most common are:
> 
> Dietary - not enough in intake.
> 
> Bleeding - whether through a medical cause and/or for females menstruation.
> 
> Increased need - Growth spurts and puberty.
> 
> Activity - large amounts of exercise/training can increase the body’s need for iron.
> 
> Absorption - you would well know about this one. It doesn’t necessarily mean that it is IBD but that would be one cause.
> 
> Dusty. xxx


Dietary - we eat too much meat for this one.

Bleeding? Yes she female

Increased Need? Wouldn't you need growth for this one

Activity - her active levels are very high.  Can't remember why but Sarah's GI said this one is rarely seen.

Absorption - Crohn's/caelic disease.  Some other reason but likely cause.


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## DustyKat

It may be one cause, like absorption, but being a teenager, female and highly active may be feeding into it too, I know you are way to smart not to know that! :ghug: 

Good luck Catherine, I hope you soon get solid answers for your girl and they are easily treated ones. 

Dusty. xxx


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## Catherine

Your right DustyKat, she has low iron of unknown origin.:ybatty:


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## my little penguin

Fwiw DS takes 50mg of elemental iron which he started when his ferritin was 9.
Hope the supplements work for her .
Maybe give her time on the fecal cal . Since she would only have to "leave it behind " for you .


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## Catherine

She is currently taking dried ferrous sulfate 325mg with sodium ascorbate 562.4 mg.  The gp wants her on twice this dose.

Still working on getting the fc sample.


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## my little penguin

It should have the amount of elemental iron in it.
Since each compound is different .


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## Catherine

105mg of elemental iron.


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## my little penguin

:wow:


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## Catherine

We have gone from one extreme to the other.

GI who didn't want to treat ferritin of 17.

GP who I can't understand why wants to treat with 210mg of elemental iron for ferritin 14.

So we have started with 105mg as per chemist which I believe is the middle path.  

Sarah's GI has suggested we get blood tests for coeliac, vit d, ESR and CRP.


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## my little penguin

Were any of her other iron study numbers way off?


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## Catherine

I don't have a copy of the test results but 3 of the 4 were out of range on the previous test.


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## my little penguin

That may be why DS only had low ferritin and high something else .
His hgb was normal though .


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## DustyKat

Couple of articles re: Iron Studies. They each have tables at the end showing what results may indicate…

http://www.aacb.asn.au/documents/item/641

http://www.melbournehaematology.com.au/pdfs/guidelines/melbourne-haematology-guidelines-iron-studies.pdf

No doubt there will always be exceptions to the rule though! 

Dusty.


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## Catherine

:ybatty:Get the sample is going to kill me.  She says she has only had one BM and that was on Thursday.:ybatty:


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## my little penguin

Turn off the water to the toliet so she can't flush - line the bowel with plastic wrap ??


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## DustyKat

Thursday?? :eek2: 

Has she gone yet Catherine? 

Dusty. xxx


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## Catherine

Did sample night, I will take in tomorrow.


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## Catherine

Faecal calprotectin has come back as <19.5 (19.5 - 50) ug/g

Comment: low/absent inflammation of the GIT.

I think we can rule out inflammation as the cause of low iron.


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## gotumtum

Hi Catherine

If your daughter continues to have sore tummies may I suggest that she get a Giardia test done (I think it is a stool test sorry!) I had this when I was doing a lot of swimming when I was about her age and only had sore tummies- although adults usually present with vomiting and diarrhea. It is usually treated with a short but strong course of antibiotics.

good luck - it is not fun to have sick kids of any age.


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## Catherine

Quick update.

We going have some more blood tests done to monitor the low ferritin levels.

The gp printed off the vitamin d results from April.

The vitamin d is back in range at 84 nmol/L (75-200)  So increased from 54, while taking 1000mg vitamin d and over summer.

Kerry seems ok with having the blood test done, if mean taking less supplements.  

Starting to second guess myself.


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## Catherine

In a normal healthy child (eg non IBD).  How soon would you expect an improvement in iron levels?

Is two and half months long enough?


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## kimmidwife

Yes you should start to see so e improvement within two and a half months. 
What type of iron is the child taking?


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## my little penguin

Even with Ibd DS started iron in late Jan and I believe the ferritin levels were close to normal in 2.5-3 months .


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## Catherine

She is taking Ferro-Grad C it contains 105 mg of elemental iron.  

I haven't seen the results, all I know is the iron results are saying need to discuss.  I'm assuming that means they are worse.  GP appointment is Tuesday.  All other results are reported to be ok


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## my little penguin

Wow
DS is only on 50 mg of elemental iron .
Hope they can come up with a plan for her and a reason for the low iron


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## Catherine

Kerry's vitamin D is dropping back to 60.

Ferritin is unchanged.  Hemoglobin is up.  Retested in 3 months.

Increased iron to two tablets, 3 x times a week.  Other days to remain at 1 tablet per day.


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## Catherine

It was decide today that this beautiful girl would start seeing someone at school.

- she feel nothing she does is good enough.
- that her teachers expect too much of her
- her fears of failure
- her fears about her sister's illness
- her mother making her a pin cushion

Her teacher is angry with me.  He told me I was being irrational.  Is really too much to expect a teacher tell you that your child has not complete a major piece of work and make up a third of their grade.:ybatty::ybatty:


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## Clash

I'm so sorry to hear she is having troubles. I hope things improve!


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## Tesscorm

Me too.^^^  So tough to be a young teen... :ghug:


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## kimmidwife

I am sorry to hear this school can be so rough! That is one reason we homeschool. Hoping things improve quickly!


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## DustyKat

Oh Catherine. :ghug::ghug::ghug: I am so sorry to hear this.  I hope the help she receives is able to assist her in seeing herself as the beautiful young lady she truly is, bless her. :heart: 

Why in heaven’s name is the teacher angry with you?!  

Dusty. xxx


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## Catherine

The teacher felt i was saying it was his fault k hadn't done her assignment.  And she should take responsibility for actions.

It later come out the k feels the teachers expect her to be like her sisters.  And she can't live up to their standards.

The girls have very similar interests in and out of school.


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## DustyKat

Oh man, that sucks. He sounds somewhat defensive, not unusual if he has little insight into what is going with your daughter.  But that is his problem to overcome, not yours. :ghug: 

It is such a difficult situation to be in when teachers compare siblings, lord knows it is bad enough when they don’t! I understand the situation you are in Catherine. Although Sarah's teachers didn’t place the burden of expectation on her she placed it on herself and there is absolutely no doubt in my mind that Matt’s abilities ate away at her self esteem big time. It mattered little what we as parents said as to Sarah it was a case of…”Well of course you would say that you are my parent’s”. Having someone independent of family and teachers is the way to go Catherine and I hope with all my heart that your lass benefits immeasurably from it. :ghug:

Dusty. xxx


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## Catherine

Quick update.

Kerry seems better in herself.

Ferritin is now 37 ug/L (15-165)
Vitamin D is up to 78 (nmol/L)
Hemoglobin is now 13.1 g/dL (11.5-16.5)

We are going to stop supplementing iron.  Continue with Vitamin D.  And retest in January.


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## kimmidwife

Glad to hear good news!


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## DustyKat

Thanks for the update Catherine.  

I hope all keeps heading in the right direction. Good luck! 

Dusty. xxx


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## Catherine

Very pleased with the results.

Kerry is competing in her first Victorian Open Water Championships on Sunday.  This is her first time at the distance and she is hoping to come in under 2 hours.


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## DustyKat

Wow! Sending loads of luck and well wishes Kerry’s way! :goodluck: 

Dusty. xxx


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## Catherine

Since stopping iron Kerry has a few dizzy spells.  This could just be that she is a very active thin girl.

Kerry swum well in 5km, finishing in 1 hr 42 mins.

She is swimming at Point Leo tomorrow in the 1.2km.

Merry Christmas to you all.


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## DustyKat

Good luck to Kerry! :goodluck: 

Last thing on my mind today would be a 1.4km swim! The closest analogy I have to water is being like the proverbial beached whale! :lol: 

Dusty. xxx


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## Mehita

Good luck, Kerry!


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## crohnsinct

Holy Cow!  An hour and 42 minutes of straight swimming?!  That is incredible!  In open water no less!  Unreal! :worthy:

O (swimmer and runner) has trouble with dizziness and fainting.  Hydrate, Hydrate, Hydrate!  Swimmers especially don't seem to "feel" thirsty but they really have to drink! But I am sure I am not telling you anything new.


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## Catherine

This is Kerry in yellow finishing at Point Leo.

The conditions were difficult with a strong breeze and in coming tide.


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## DustyKat

Brilliant! Well done Kerry! :dusty::dusty::dusty: 

Dusty.


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## kimmidwife

Love the picture! Great job Kerry!!!!


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## Catherine

We were back at the GP today.

About two weeks ago, skin on the end of one finger start to form little blister.  This blister would then turn white with no liquid inside.  Then skin started to peel.  The skin is now peeling on 9 fingers.  The remaining finger and one toe have a little blister.  The new skin is not smooth.  The unusual thing is the skin is NOT painfully and there is NO itching.

The gp suggested two week off swimming to see if the skin would improve. (K is not stopping swimming)  He doesn't not know what this.  He prescribed a steroid cream and gave a referral to a skin specialist.

We have had more blood tests due to dizziness.

K has completed a number of open water swims, the officials never allow her to remove the time device herself (it goes around her ankle), it appears they don't want to bend over.

K start 10 year on Friday.


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## my little penguin

Ds had this 
It affects his feet more ( toes )
Deep blisters 
Let me look it up and post a link


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## my little penguin

http://m.medlineplus.gov/ency/article/000832.htm

This is it mostly not itchy
Hope the dermo has answers 
He uses three different creams and steriods on it


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## Catherine

This is what it looks like.

http://healthh.com/wp-content/uploads/2014/06/exfoliative-keratolysis-pictures-4.jpg


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## CarolinAlaska

makes me think of a form of eczema


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## upsetmom

Catherine my daughter had this a about a year ago, it started on her hands and then her feet. She was prescribed steriod cream but it still took a awhile to clear up. All the skin peeled off before it started clearing up. We were told it could take up to a year but luckily it cleared up sooner. My daughters blisters seemed to spread by the hour. There's a picture here..http://www.crohnsforum.com/showthread.php?t=48832


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## my little penguin

Yep that was what Ds did
Hands /fingers peeled
And deep blisters on the sides of the toes


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## Catherine

MLP, does swimming make it worse?

Have you used a steroid cream?

She has a couple of deep blisters between her big toes.  We didn't think this was the same thing.  They were caused by thongs.


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## my little penguin

He uses kenalog which is strong for his hands and toes 
One week on
One week off
After a month it was gone for a while
We were told it comes back in summer
And should stop after puberty


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## my little penguin

Oh and the deep blisters on his toes had many layers and would later bleed below the surface
Once we started treating it all got better even with swimming


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## Catherine

All K blood test have come back normal but the levels have mostly dropped since stopping iron.

Ferritin is 23 ng/mL  (20-200)
Hemoglobin is 12.8 

Vitamin d 103 nmol/L (50-250). This is up due to supplements.

Vitamin B12 281 pmol/L (200-700).  This had dropped from 369, 12 months ago.


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## Catherine

upsetmom said:


> Catherine my daughter had this a about a year ago, it started on her hands and then her feet. She was prescribed steriod cream but it still took a awhile to clear up. All the skin peeled off before it started clearing up. We were told it could take up to a year but luckily it cleared up sooner. My daughters blisters seemed to spread by the hour. There's a picture here..http://www.crohnsforum.com/showthread.php?t=48832


Your daughter's looks more severe.  K is now on all fingers but so far has stayed above the top joint.


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## Catherine

Had a call from nurse school today, K come out a rash with minutes of sitting grass.

Made the first available appointment with the skin specialist which is 1st May.


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## my little penguin

Does she have pollen allergies or grass allergies ?
I know my DS would be covered in a rash of he even fell in the grass


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## Catherine

I need to check with k.
- mild suncream allergy
- mild bandaid allergy
- mild grass allergy only in spring.

This is the strongest reaction that she ever had.  She was kneeling on the grass while putting up a tent.  Prior to this time she only got pin size spots which didn't worsen once of the grass.  The reaction has only previously occurred spring.

This time her legs were saw a while later.  When she looked they were red from her knee to her socks.   The school nurse confirmed it was a contact allergy with hives.


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## my little penguin

That would describe DS at age 2-3.
His is severe had to start shots at age 4 plus max out allergy meds
Each season they see can cause the allergies to get worse.
Puberty can also cause things to get worse.
As can reactions to other things at the same time ( full bucket theory)
So something that would have set her system off before will set it off now for a bit until her system overall calms down .


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## Catherine

K complained of severe stomach pain.  Resulted a visit to the school nurse.  The pain is the middle of stomach about 5 cm above the belly button.

She was quite disappointed her last blood tests come back normal.  As she was sure it would show low iron and iron tablets would fix the dizziness.  :yrolleyes:


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## Catherine

We had our appointment with the skin specialist today.

- fingers condition is inflammatory eczema, which fits with history family history of asthma, eczema and hay fever, and the grass allergy.

- "birthmark"  well that not one, it is actually Phyriasis Versicolor, it doesn't look the pictures you see of net as it is "brown".  Treating with Canesten

- now the hard decision, we going to treat to acne.  We are using minocycline and Epiduo Gel.  Although the acne is not severe, it is forming pustules, nodules, and cysts.  Left untreated these will cause severe scarring.  Some of the pustules are up to 1 cm in size.  These sores take months to heal.  She has already done two course 6 months course of previous drug.  If this doesnot work she will need to consider Roaccutane (yes know the risks:voodoo::voodoo

She only 16, and already has moderate scarring.


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## crohnsinct

Poor girl!  My oldest suffers with acne terribly.  Sometimes better than others.  

Funny, my acne girl also has the versicolor thing.  

Good luck!


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## kimmidwife

Catherine,
So sorry to hear your girl is suffering with this. Sending you a PM about the accutane.


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## my little penguin

Hugs
Catherine
Would the pill help her cystic acne ?
I know it can help some to where there are no more break outs all.
It has its own risks as well
Never easy


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## Catherine

Thank everyone, I am hoping Epiduo Gel will work on it only after while.

All options will it considered before moving on to a higher level medication.   Due to her swimming it would be best if she can avoid treatment in the summer months.  So the appointment came at the right time of year.

She has just completed her blood declaration to give with school.  Don't think her hemoglobin will higher enough to donate but it doesn't look like she will get that far as she look like failing the weight requirement.


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## Sascot

I feel for her. My son had the same issue on his back, he used to go to school covered in plasters! He has some scarring from when it was really bad before we started using the Cetaphil cleansing wash. Does your dermatologist have any recommendations for the scarring?


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## Catherine

At the moment it very hard to tell what is active acne and what is scarring.  Luckily most of her scarring is a problem with the colour of skin.  She has lot of small red spots but the skin itself is smooth.  Covers well with makeup, but make up causes the acne to spread.

If she hadn't already started using the minocycline, I think I would have just used the Epiduo Gel.


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## Catherine

The acne has cleared a lot.

She has had a couple more dizzy spells both after winter open water swims.  She managed to scare the officials and other competitors.

The GP believes the dizziness is due to swimmer ear.  There is some inflammation in the ear canal.  Now have drops and  ear plugs.

The gp ordered blood tests due to previous history of anaemia.  Blood pressure normal at GP 120/70 but done earlier at the chemist it was 106/48.


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## Catherine

No anemia but in the GP wording we need to stop this before it becomes anemia.

Ferritin is 13, restarting iron supplements for 3 months.  Then retest.


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## Catherine

We had blood tests done as the end last week.  Don't know the actual number.

But GP has order more blood tests for "persistent low iron'.:ybatty:


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## Clash

Sorry to hear about the persistent low iron. Hugs


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## kimmidwife

Sorry to hear. But glad they are doing tests. Hopefully they can get to the bottom of it!


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## Catherine

Hi everyone,

I am confused.  K ferritin has increased to 29.  Her hemoglobin is slightly up.

According to dr the response to iron supplements is not strong enough.

We are going to change iron supplement.  The new supplement is at the maximum rate for weight.

I have requested a faecal calprotectin.  Ferritin will be retested in 3 months.  If response still not adequate will refer to GI.   According to GP this not suggestive of IBD as per her research but GI is the next step.

Symptoms?
Dizziness 
Tiredness (more tired with less activity)
Low iron
Low d (needs 1000mg per day to keep in range)
Hayfever
Cystic acne 
Worsen grass allergy

Question why does she want to refer when get any to take my oldest anaemia seriously.  We don't even have anaemia.  Ferritin is in range.  I just don't get.


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## kimmidwife

Sounds to me like you need another set of eyes to take a look at her. Maybe push for that referral!


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## Catherine

Kimmidwife

We are going to do the faecal calprotectin in the next couple of weeks and move forward from there.

She already has GI consultant and no further testing was done.


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## kimmidwife

Catherine,
Praying the fecal calp is normal but also praying for answers for you guys!!!!


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## Catherine

It's been normal twice at less than 19 both times.


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## kimmidwife

Catherine,Has she had a colonoscopy? Also has she seen a hematologist?
My daughter (#2) just saw a hematologist to be worked up for Von Willebrand's Disease. Another thing to worry about


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## Catherine

No colonoscopy, GP will have to proof she has inadequate iron supplementation first.

She is currently follow her sister pattern but her sister didn't even have this much response to iron supplementation.


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## kimmidwife

It is so frustrating. It kind of sounds like what we have going on with daughter number two. All her tests have come back negative so far but she has constant stomach aches and diarhea. She is having issues with her cycles so the ped Doctor sent us to see the hematologist. We are still waiting to get those results meanwhile she has to go back to the GI again and colonoscopy is the next step probably fecal calp and all blood work the GI did was normal.  Makes your head just spin!!!!!


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## Catherine

Has your daughter been test for coeliac Disease. Strangely wheat gives me diarhea
.


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## kimmidwife

Catherine,
Not through colonoscopy only blood tests. That is going to be next.


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## Catherine

If the colonscopy is clear try gluten free.  It works for me.


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## crohnsinct

^yep!  Non celiac gluten sensitivity is a very real thing and growing dx!


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## CarolinAlaska

Gluten sensitivity with me and two of my daughters here also.


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## Catherine

K seems much better maybe iron supplement is finial my working. 

At the beach awaiting for start of K 5km swim.  They will hopefully complete the race before the heat of the day.  It will be 30C when they start.


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## Mehita

Good luck!!!!


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## Sascot

Glad she is doing better. Hope the race goes well


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## kimmidwife

Wishing her good luck with the race!


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## Catherine

We are in the middle of open water swimming season.

We had the 3 month blood draw done today.

K is general feeling well, the dizziness is back, currently only happening with swims over half hour in length.  She is doing 4 long swims most weekend. eg last Sat 2.5 Km, followed by 1.2 km about 90 mins later, Sunday 4km (this was a really long swim so no other swim).

The dizziness could be due stress from the swimming but none of other kid have it.  And it was better at the start of the season.

She also start a Tafe course last week as part of her Year 11 studies.  School is back at start of February.


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## Tesscorm

I hope the dizziness is nothing serious and resolves itself! :ghug:  Could school be adding more stress now, compared to the start of the season?


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## crohnsinct

is she adequately hydrated?  O gets dizzy when dehydrated. It us hard for swimmers. Especially open water when she is swimming for over an hour straight!


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## Catherine

The dizziness is due to Orthostatic hypotension, it occurs went going from the swimming position to standing/running.  The treatment is water, food, salt.  In K case it associated with low iron levels.

Her TAFE course is in design and she is loving it.  Is currently do 6 hours of drawing and painting a day.  She is leaving home at 7.30 am and is home after 6pm.


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## Catherine

K's ferritin levels are stable.  We have issue with the taking of the supplements.

She has a referral to an adult Gi due low iron of unknown origin and family history of Crohn's.


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## Catherine

It been a bad week.  Kerry had an accident at today open water swim.  5 X-rays later we know nothing is broken.  There planning to do an MRI in the morning. She not pleased about her first overnight stay in hospital.

School starts on Monday and has nice bruise on her forehead.

It could have been worse.


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## my little penguin

Healing thoughts your way
Hope it's a quick visit and she gets sprung soon


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## pdx

Oh wow--glad nothing was broken, and I hope the MRI doesn't find anything serious.


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## Catherine

Got home the this morning after a night in the ER.  MRI not necessary, we saw the Specialist this morning.

The X-ray were completely clear, abnormality was caused by the neck X-ray being takes slightly of centre.  K is glad to be out of the neck brace and home with a pillow.

She taking nurofen for whiplash.

The nurse and doctors were wonderful but er can be scary place.  Happy to be out of there.


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## Tesscorm

Glad she's okay!  :ghug:


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## Optimistic

Catherine, this is the kind of news we love to hear on the forum!!

Glad you escaped the ER.


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## kimmidwife

Catherine,
I am so glad she is okay! Hope she is feeling better fast!


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## Maya142

So glad she's ok. Hope she feels better quickly!


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## CarolinAlaska

Yep, everything about a hospital is a scary place.  I'm getting to hate it more than my kids...


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## Catherine

Very scary when security is in next cubical.


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## Catherine

Quick update on this for future reference

Saw adult GI in late March, blood tests and faecal calprotecton were strongly negative.

Stopped acne medication, iron and d.

Week ago, thinking skin that bad need to restart acne medication.

Fast forward to this week.

Last Thursday, severe stomach pain dx with gasto, slight fever, no bowel symptoms

Tuesday, dx with heartburn, severe stomach middle to stomach just below the ribs.
Taking heartburn medication, dx doesn't seem right as heartburn doesn't usually get better when laying down.


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## Sascot

Sorry to hear that. Was a reaction to restarting the acne medication do you think?


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## Catherine

She has been off acne medication for 2 months.  Actually wondering whether it's a reaction to stopping the medication.


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## kimmidwife

Catherine,
I am so sorry to hear. What acne med was she on? It is so frustrating when you can't get clear answers!


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## Catherine

kimmidwife said:


> Catherine,
> I am so sorry to hear. What acne med was she on? It is so frustrating when you can't get clear answers!


She had been on minocycline for 12 months.


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## kimmidwife

Catherine,
Interesting since some doctors treat Crohn's with antibiotics and it really seems to work for some people. That is really interesting


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