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New Referral

Catherine

Catherine

Moderator
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.
 
Niks

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:
 
DustyKat

DustyKat

Super Moderator
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
 
Catherine

Catherine

Moderator
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.
 
CarolinAlaska

CarolinAlaska

Holding It Together
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?
 
Catherine

Catherine

Moderator
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:
 
Catherine

Catherine

Moderator
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

DustyKat

Super Moderator
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
 
DustyKat

DustyKat

Super Moderator
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
 
Catherine

Catherine

Moderator
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.
 
Catherine

Catherine

Moderator
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.
 
DustyKat

DustyKat

Super Moderator
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
 
Sascot

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
 
Farmwife

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).
 
Catherine

Catherine

Moderator
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

DustyKat

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

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

Dusty. xxx
 
Catherine

Catherine

Moderator
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.
 
Catherine

Catherine

Moderator
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.
 
Catherine

Catherine

Moderator
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.
 
Catherine

Catherine

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

Tesscorm

Moderator
Staff member
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:
 
Catherine

Catherine

Moderator
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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Catherine

Catherine

Moderator
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.
 
DustyKat

DustyKat

Super Moderator
That’s understandable Catherine. :hug:

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

Dusty. xxx
 
Catherine

Catherine

Moderator
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.
 
DustyKat

DustyKat

Super Moderator
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
 
Catherine

Catherine

Moderator
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.
 
Catherine

Catherine

Moderator
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.
 
DustyKat

DustyKat

Super Moderator
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
 
Catherine

Catherine

Moderator
Sarah takes calrate which is calcium and vitamin d.

With Kerry I think it maybe SIBO.
 
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Catherine

Catherine

Moderator
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.
 
Catherine

Catherine

Moderator
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
 
DustyKat

DustyKat

Super Moderator
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
 
Catherine

Catherine

Moderator
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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Catherine

Catherine

Moderator
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.
 
DustyKat

DustyKat

Super Moderator
{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
 
Catherine

Catherine

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

What are usual causes of low iron?
 
DustyKat

DustyKat

Super Moderator
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
 
Catherine

Catherine

Moderator
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
Click to expand...
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.
 
DustyKat

DustyKat

Super Moderator
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
 
my little penguin

my little penguin

Moderator
Staff member
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 .
 
Catherine

Catherine

Moderator
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.
 
Catherine

Catherine

Moderator
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.
 
Catherine

Catherine

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

Catherine

Moderator
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.
 
gotumtum

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.
 
Catherine

Catherine

Moderator
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.
 
Catherine

Catherine

Moderator
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?
 
Catherine

Catherine

Moderator
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
 
Catherine

Catherine

Moderator
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.
 
Catherine

Catherine

Moderator
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:
 
DustyKat

DustyKat

Super Moderator
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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