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Update

upsetmom

upsetmom

Location
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I thought l'd give you an update.

Last month we saw the GI and my daughters ESR is still sitting at 40. She's been on Imuran for about 9 months with no change in ESR. He wants to do an MRE to see whats happening in the small bowel so she's booked in for an MRE on the 21st May and will be admitted for the procedure. While she's there he's going to get an Endocrinologist to see her for her delayed puberty. She's been stuck at stage 2 for a long time. I've been asking GP and GI to refer us but l kept getting told they see this a lot and it was nothing to worry about, and she will catch up. Finally something might get done.

Symptoms have been on and off with diarrhea, pain after eating and stabbing pain.

21st May still seems a long way away..:(
 
my little penguin

my little penguin

Moderator
Staff member
:ywow:Wow!!! - May 21st is 5 months away.
DS has never gone more than 3 months without seeing his GI let alone wait for a test.
The longest we ever waited was 5 weeks for a non urgent MRI for something else.
Everytime the GI orders a test we call back and tell the doc how long it will be. If its longer than the doc wants then phone calls are made and it magically moves up.
Does the GI know it will take that long???
:ghug::ghug:
 
Jmrogers4

Jmrogers4

Yes, that seems a long time for inflammation to be going on. Hope you can get it moved up quickly. We just saw the endo for delayed puberty he is just entering stage 3 and we had some more tests (bone age, thyroid, etc.) done on Monday and are awaiting those results.
 
upsetmom

upsetmom

Location
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Okay now you've got me thinking MLP!

When we saw the GI he said she'll be admitted sometime in late February or early March. I automatically thought he knew that it was in May. I'll have to ring the nurse and let her know.

We do have an appointment to see GI in March.
 
upsetmom

upsetmom

Location
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Catherine last time they wanted an MRE done we went privately and got her in straight away but the GI wasn't very happy as they only trust their radiologist.

Tried to ring the nurse but no answer so l sent an e-mail.
 
Catherine

Catherine

Moderator
The first MRI was booked personally by the GI, and he was asking them who the radiologist was. The second time I just booked the same centre as was used the first time.

A maybe question?

Does preferred radiologist only work in the public system?

There is another advantage of using only the one provider, is the results related back to each other.

Our example:
The 1st MRI, mentions that the problem is area is in the same place as the Ultrasound that was performed 6 month earlier.

The 2nd MRI reports discusses what is different, to the 1st MRI.
 
Tesscorm

Tesscorm

Moderator
Staff member
We also have long waits here... for his last MRI, we took Stephen to the U.S. and paid ourselves because it would've taken 3-4 months to book an MRI.

But, Catherine has a good point about using the same provider. In our case, we had two MRIs from the ped hospital and one from the U.S., our 'new' adult GI didn't have a problem accepting the MRI 'film' from either location but had his own radiologist read all three and then provide his own report.

Re the ESR results... do you have results from other inflammatory markers - CRP and/or FC? Have other inflammatory markers improved?
 
upsetmom

upsetmom

Location
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Catherine said:
Does preferred radiologist only work in the public system?
Click to expand...
I'm not sure.
But he wants her admitted so she can also see the Endocrinologist and have further tests done...so going privately wouldn't even be an option.
 
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Ams-Qld

Ams-Qld

Hey, sorry to hear how things are going :(
I wold request a faecal cal. It should be free if through a public hospital but will be only about $40 (even with a health care card) if you check around for the cheapest pathology provider. If it is very raised that might encourage them to do something faster. How is her iron levels??
 
imaboveitall

imaboveitall

She ought to have scopes and a pillcam.
V was in hosp in a severe state last May and had abd MRI and MRE both NEGATIVE for inflammation.
I was told this was because mucosal inflammatory changes will not show on imaging, only structural changes. Her GI said he would never rely on these tests alone for diagnosing inflammation, he used them in her case at that time as he suspected stricture or abscess.

Pillcam is the only way to show the small bowel, V's scopes (she's had four) are always normal, both grossly and histologically, BUT her pillcams (2) showed a small bowel in a terrible state.

Disease confined to the small bowel is often insidious.
Oh and V's CRP is always normal too.
 
Sascot

Sascot

Can you get put onto a cancellation list? May is really far away! It's worth keeping on phoning them every week so they remember to call if there is a cancellation.
 
DustyKat

DustyKat

Super Moderator
Good grief upsetmom! May! :yfaint:

I hope you hear from the nurse soon and she gets the message that May isn’t an option! :ghug:

Good luck!

Dusty. xxx
 
Brian'sMom

Brian'sMom

Location
Midwest
I wonder if they made a mistake with booking you in May! I hope you can get in sooner. Why do they need to admit you for this test? Even seeing multiple docs should be able to do outpatient. Maybe this is your delay.. the admitting part.
We saw Endocrinologist just to 'rule out' growth hormone issues. Our Endo said (and I think this is true) that IBD kid's won't grow while there is a lot of inflammation. That needs to be under control. Another good thing we found out from Endo was our son's testosterone level. It showed us that it was all normal and the inflammation was his problem for growth and delayed puberty. I hope you get answers soon.
 
upsetmom

upsetmom

Location
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I questioned why she was getting admitted for a simple test. His answer was if she's a patient you won't have to pay $200...even though l told him it was going to cost me a lot more than that in motel fees. So l'm not quite sure of the reason behind the admission. But then again last time he ordered an MRE we didn't get it done at their hospital so maybe hes worried we'll go somewhere else..:lol:

My daughter has no problems with her height its just her puberty. Shes very delayed and doesn't look anywhere near her age...she looks more like a kid than a teenager.
 
kimmidwife

kimmidwife

Upset mom,
Keep calling the nurse. Sounds like they have mixed up March and May. Maybe they couldn't read the doctors handwriting!
 
upsetmom

upsetmom

Location
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Its been 2 weeks and no word from the nurse. I'll have to email her again.:ymad:

My daughters been getting a backache again, and when she walks it cracks.
Off to see the DR today if they're open.
 
upsetmom

upsetmom

Location
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Dr is sending her for an xray. He said there was tenderness on the left SI joint.
Xrays closed today so can't get it done till the morning. I hate waiting... a million things run through my head.:(
 
DustyKat

DustyKat

Super Moderator
I don’t want them to find anything wrong upsetmom but then again, answers would be nice. The SI joint is a common area for issues with IBD. :(

Good luck for tomorrow. :heart:

Dusty. xxx
 
upsetmom

upsetmom

Location
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Nothing found on the xray.

As she's been getting a backache for a few months, l asked if her inflamed bowel could have anything to do with it and he said no it doesn't manifest as a backache.:yfaint:..Well he doesn't know l do a lot of reading.

I'll have to try contact the nurse tomorrow.
 
kimmidwife

kimmidwife

Upsetmom,
LOL guess he doesn't know about our forum! backache is definitely a sign of inflammation. Push for them to bring her in sooner it is ridiculous how long these doctors make these kids wait!
 
Maya142

Maya142

Moderator
Staff member
One of my daughter's first symptoms of arthritis was SI joint pain. Nothing showed up on the x rays, but her MRIs showed inflammation (sacroilitis). If your daughter turns out not to have bowel inflammation, it might be worth asking for a referral to a rheumatologist.
Unfortunately, we have met a number of kids with this particular kind of arthritis and Crohn's.
 
upsetmom

upsetmom

Location
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I've been instructed to take Osmolax with us if my daughter doesn't like the lemon/ salty taste of the solution they give there.

Now l'm not quite sure if she'll like it or not as the last time she had an MRE the mixture tasted like plain water. She said she'd like to drink the one she had last time but l have no idea what it was as it was done somewhere else.

Anyone have any ideas.
 
DustyKat

DustyKat

Super Moderator
Sometimes plain water is used upsetmom, could she have had plain water?

Matt’s contrast was more like a sugary water so I think they may have used mannitol for his.

Good luck!

Dusty. xxx
 
upsetmom

upsetmom

Location
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When l booked the last MRE they told me she had to drink a solution to expand the bowel, so l don't think it would have been plain water.

I think l'll let her try their solution.
 
upsetmom

upsetmom

Location
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2 days till MRE and my daughter gets the flu again..:yfaint:

I've started giving her cold and flu tablets, hopefully they start working by tomorrow.
 
Sascot

Sascot

Oh no, poor thing! That is one of my top worries whenever a test/operation is scheduled. Really hope she feels okay in time!
 
DustyKat

DustyKat

Super Moderator
I hope your lass continues to feel better upsetmom and all goes well the test. Good luck!

Dusty. xxx
 
upsetmom

upsetmom

Location
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We're back! What a long day.

A lot of tears today, first when she had to drink the osmolax, then again when they put the cannula in. Usually she's good with procedures, so l don't know what got into her today....maybe because she's still a bit sick.

Because she was so teary l thought it might be better for me to stay outside while the MRE was being done. They told me it will take 40 mins but it took 2 hrs, so l was obviously starting to get worried. Turned out she was sick so they had to keep stopping.

Saw the endo and they have ordered and ultrasound of the pelvis and and a blood test to check hormones.

We should have the results in 2 weeks.
 
DustyKat

DustyKat

Super Moderator
Oh no mum. :ghug: I bet you glad to be home!

I hope you soon have answers and your lass starts to feel on top of things again. Sending squishy hugs and healing thoughts your way. :heart:

Dusty. xxx
 
kimmidwife

kimmidwife

Glad she got through it! It is rough especially when maybe she was still under the weather. Keep us posted when you find out the results.
 
Jmrogers4

Jmrogers4

Poor girl, glad it's over. Jack got sick during the MRE as well and they had to stop a couple of times. He can't stand the drink and was throwing up so violently in the prep room the nurses came running from down the hall.
Hope you get all results back quickly.
 
upsetmom

upsetmom

Location
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We went for an ultrasound of the pelvis this morning to see why my daughter still hasn't got her periods but they couldn't find a uterus.:( As she's not sexually active he couldn't do an internal. He said not to panic yet as it might just be retroverted...easier said than done.

When she had the MRE done last week she told me that they stopped and waited for a DR to look at the scans...l wonder if they picked it up. But then she had an MRE done in 2012 that mentioned the bladder was normal so you'd think they would have seen the uterus too. Sorry thinking out loud, so many things going through my mind at the moment.

I left a message for the nurse to ring me back to see if anything was seen on the MRE. Otherwise she needs to have an MRI done before our appointment on Wednesday.
 
upsetmom

upsetmom

Location
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The nurse said they don't specifically ask for the uterus to be looked at so there's no mention about it, so she's going to ask the radiologist to have a look and see if she has a uterus. I won't find out anything till Wednesday. While l was on the phone l forgot to ask about the rest of the results. I'm trying to keep calm at the moment.:( I know stressing won't change anything.
 
upsetmom

upsetmom

Location
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Looks like might be heading towards a new diagnosis of tuner's syndrome.:(

The endo had a look at the MRI results and couldn't see a uterus. He said as they weren't doing the scan of the uterus there is still a possibility that it might be there. But hormone levels indicated the brain is releasing the hormone but the ovaries aren't responding....he did tell me the name but my mind went blank after l heard tuner's syndrome. So he said if the ovaries are there something else must be going on. Hes ordered genetic testing for tuner's, if the test comes back negative he'll do an MRI and or a laparoscopy. They're also doing a 24hr urine sample, looking for hormones released in the urine. I feel crushed..:( Now a long wait for results to come back.

Good news about the MRE everything's fine with her cohn's.
 
Farmwife

Farmwife

Sorry upsetmom. I had to look that condition up.

I looked on the national web-site for TS and it seems that most are dx early on in life.
I wonder what took so long for a doc to think of this? Sorry I just don't know much about it.

Hugs, do she know this might be a possibility?
 
upsetmom

upsetmom

Location
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Farmwife said:
I wonder what took so long for a doc to think of this? Sorry I just don't know much about it.

Hugs, do she know this might be a possibility?
Click to expand...
I don't know much about it but reading about this condition last night, apart from the missing periods and breast development she doesn't have any of the other symptoms....she looks normal. Girls are really short with a webbed neck...my daughter's tall...normal neck. Maths is usually a problem.... best subject, 2nd in the year. So l'm hoping these Dr's are wrong.

She does know. We had a long wait between appointments yesterday and she was sooo quiet. Poor girl, l don't whats going through her mind. I was hoping it was all a nightmare when i woke up this morning.
 
DustyKat

DustyKat

Super Moderator
Mega hugs to you and your lass upsetmom. :ghug:

I so hope you aren’t now having to deal with something else. :(

Can you please refresh my memory as to when she gained remission following diagnosis?

Dusty. xxx
 
DustyKat

DustyKat

Super Moderator
I didn’t think she was well controlled so thought I would check with you before I ask this…

I know there may be queried anomalies on her MRI but that aside do you know why they are following this path and not that it may well be due to long and uncontrolled inflammation?
Or are they covering all bases?

Dusty. xxx
 
upsetmom

upsetmom

Location
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They said some signal from the brain is working but the ovaries aren't responding. They mentioned something about FSH levels. So l think that's the reason why they're testing for Turner's.

We even saw a Gynecologist, and she said the same thing.

When we saw the dietitian she couldn't believe how much my daughter has grown. She believes its just delayed puberty.
 
DustyKat

DustyKat

Super Moderator
I do agree that all bases should be covered and it is good to see that whatever is going is being thoroughly investigated. As you know I am no doctor, so just my musings…

Not knowing what the FSH levels are but if they are normal then it is not uncommon in IBD to have normal levels of FSH and the body still not respond to its release due to the long reaching effects of active inflammation in Crohn’s.
I am not saying that something else isn’t going on but just ensure the docs don’t lose sight of that if other answers aren’t coming to the fore.

What does the GI think?

Dusty. xxx
 
DustyKat

DustyKat

Super Moderator
:(

I so hope you don’t have too long to wait for answers mum. Waiting is the pits, as you no doubt know!, and it’s the last thing you both need. :ghug:

Thinking of you. :heart:

Dusty. xxx
 
upsetmom

upsetmom

Location
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:dance:..Genetic testing has come back normal. He believes the ovaries have previously be working as she has breast buds, it doesn't look like she has to me. Anyway he thinks something has caused the ovaries to stop working, he said she might have an autoimmune disease. I said yes crohn's! . But he said there's no evidence that crohn's can stop the ovaries from working. So now she has to use an estrogen patch and in a few weeks have an MRI, that way he said the uterus would grow so it can be seen. So to me this looks like delayed puberty from crohn's. I just hope that's all it is.
 
DustyKat

DustyKat

Super Moderator
I hope so too upsetmom. :ghug:

Sarah didn’t start puberty until she was coming up for about 15.5 years. When she was diagnosed at 14.5 years she didn’t even look remotely like she was going to hit puberty any time soon. Her surgery put her immediately into remission but it still took another 9-12 months of physical recovery before she did start and then it hit with a vengeance.

Dusty. xxx
 
Jane and Nick

Jane and Nick

Fingers crossed for you !
My oldest, didn't hit puberty until she was 15 then promptly stopped, one cycle then nothing. I think it was down to the stress of her dads diagnosis. She is now 16 and everything has fallen in to place and wow wee is she ever the beautiful young lady all grown up and mature.
Sending positive thoughts your way.
X
 
kimmidwife

kimmidwife

I am so glad to hear her genetic testing came back normal! That is such a relief. Hopefully they can figure things out quickly. My question is have they done any further testing of the pituitary to see if something there is involved? I am going to tag Xmd mom as this is her field of expertise maybe she will have some input.
 
upsetmom

upsetmom

Location
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kimmidwife said:
I am so glad to hear her genetic testing came back normal! That is such a relief. Hopefully they can figure things out quickly. My question is have they done any further testing of the pituitary to see if something there is involved? I am going to tag Xmd mom as this is her field of expertise maybe she will have some input.
Click to expand...
They said that was all normal.

Talking to the DR the other day he kept telling me hes being doing a lot of research, especially an her medication. To me it sounded like hes never come across a patient with crohn's and missing periods.
 
A

araceli

Glad all test are good. My daughter's periods stopped for 6 months, two before diagnosis and 4 after. Now she is regular.
 
upsetmom

upsetmom

Location
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Ok maybe the tests weren't good as l thought. This is the copy l got to give to my GP. As there's not much l can do..:( l've given up on worrying. I'm just hoping for the best with these estrogen patches.


Karyotype 46xx (50 cells analysed)

Estradoil.... low <73pmol/l
FSH.... high 109.0mlu/ml
LH.... high 36.0lu/ml

Androstenedione.... 2.5nmol/L (1.8-14.8)
Testosterone.... <0.7nmoL/L (0-1.7)
DHEAS.... 3.3umol/L (2.1-8.7)
Sex hormone binding globulin.... 44nmol/L (15.6-100)

TSH.... 1.2U/L (0.7-5.7)
FT3.... 13.8pmol/l (10.3-24.5)
FT4.... 6pmol/l (2.3-7.1)
BHCG.... <1unit/L (<5)
 
Catherine

Catherine

Moderator
Estradoil is a sex hormone. I think this what they treating with the patches.

http://www.nlm.nih.gov/medlineplus/ency/article/003711.htm

Why the Test is Performed
In women, most estradiol is released from the ovaries and adrenal glands. It is also released by the placenta during pregnancy. Estradiol plays a role in:

Growth of the womb (uterus), fallopian tubes, and vagina
Breast development
Changes of the outer genitals
Distribution of body fat
 
Catherine

Catherine

Moderator
Are they going to retest after doing patches for while?

Try and put your faith in the patches working.

Thinking of you and your girl.
 
upsetmom

upsetmom

Location
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I don't know if he'll retest the levels.

He wants her on the patches for a few weeks before she has an MRI, that way the uterus would have grown and he'll have a better idea whats happening. I couldn't get her in for an MRI till June... but that doesn't matter as our appointment with the endo isn't till mid June. He also did a few other blood tests.

About a year ago she kept getting hot flushes, and at the time l kept thinking they're usually symptoms of menopause. It went on for a few weeks but l never bothered taking her to the DR...now l wish l had :ybatty:.It might be a coincidence but it was a couple of months after starting Imuran. So maybe that's when her ovaries stopped working. Who knows.:(
 
X

xmdmom

Hot flushes may or may not have been related. In any case, I don't think that doctors could have done anything if this issue were picked up earlier. Please don't beat yourself up about this. (I'm responding to your emoticon.)
 
pipmom

pipmom

What about PCOS (Polycystic Ovarian Syndrome). My daughter has similar symptoms as your daughter. Diagnosed on vaginal ultrasound. Can really mess with hormone / glucose levels.
 
upsetmom

upsetmom

Location
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My daughters getting daily pain yet the GI keeps telling me everything's good. Her ESR has been sitting at about 40 since diagnosis. The pain lasts anywhere from 5 mins to a couple of hours. Apart from giving her Panadol and using a hot water bottle l don't know what to do. It happens randomly so l don't think its got anything to do with what she's eating. I've given up on ringing the nurse as only orders a blood test and tells me everything's good.
 
X

xmdmom

I'm sorry to hear that your daughter is dealing with pain. I'm wondering what her doctor thinks is causing the elevated sed rate. Where is her pain?
 
upsetmom

upsetmom

Location
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The pain is around the bellybutton area but not always in the same spot. The GI said as all her other results are good he doesn't care if it never comes down.

We saw a professor that comes to our clinic a year ago and he said he'd like to see it come down in the normal ranges. Sadly we haven't come across him again.
 
DustyKat

DustyKat

Super Moderator
{HUGS} to you mum. :ghug:

I am not saying that your lass doesn’t have issues related to her reproductive system but have they been able to categorically state that this is not related to Crohn’s? She clearly has ongoing symptoms…continued inflammation as evidenced by the ESR and umbilical pain, this is a very common area for pain when there is terminal ileum involvement.

As much as a I don’t want to broach it…it may be that there is a Primary Ovarian Failure (POF) due to the fact that she has an autoimmune disease. It is generally associated with autoimmune thyroid disease but Crohn’s is one of the lesser causes. :(

Thinking of you upsetmom :ghug: and hoping you soon have answers and that they are positive (good) ones. :heart:

Dusty. xxx
 
kimmidwife

kimmidwife

I was going to say what Dusty said. It does sounds Crohn's related. Caitlyn has neuropathic abdominal pain maybe some of what she is experiencing is similar? If yes it is very hard to treat unfortunatly. We tried a medication called amitriptalline. It helped a little bit for a while. Maybe you could ask the doctor about it? I hope you guys get some answers soon. Sending you both lots of hugs!
 
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upsetmom

upsetmom

Location
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DustyKat said:
{HUGS}
I am not saying that your lass doesn’t have issues related to her reproductive system but have they been able to categorically state that this is not related to Crohn’s?
Dusty. xxx
Click to expand...
They said its definitely not crohn's related.....But then again he kept telling me hes been doing a lot of research, so he probably doesn't know himself.

I've come to accept the fact she has POF. Right now l'm just looking forward to making her look like a teenager, instead of a looking like a little girl.

I never got a copy of the MRE but the GI told me that there was no crohn's in the terminal ileum, or anywhere in the small bowel. When we tell him about the pain he just doesn't say anything at all.
 
Catherine

Catherine

Moderator
How long since she has had a faecal calprotectin? If you not would try and get the gp or GI to order it for you. This not a Medicare approved test, so ring the labs for prices.

Sorry but I don't believe you daughter crohn's is under control. I know at one time you were looking at changing to an adult GI. Maybe it time to find out whether that GI has the same opinion.

Your daughter should not be in pain!!!!
 
upsetmom

upsetmom

Location
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Catherine said:
How long since she has had a faecal calprotectin?
Click to expand...
Shes never had one.

I agree her crohn's has never been under control, if only l could get the GI to agree.

At this point with us seeing the endo at the same hospital l think its best if we stayed there till everything gets sorted out.
 
Catherine

Catherine

Moderator
Do you think you could get the gp order the faecal calprotectin test? I have had the test performed twice for myself due to long history of ibs. The gp order it both times.
 
upsetmom

upsetmom

Location
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We had to see the GP the other day as my daughter started to get constant pain and diarrhea.....It was one appointment l won't forget..:lol:.

Our GP isn't working till next week, so we had to see another DR who had no idea about crohn's. After telling him what had been happening, he said there was nothing he could do as it was all part of crohn's and it will soon pass.:yfaint: I eventually convinced him to do a blood test and prescribe Flagyl. I couldn't believe l knew more about crohn's than he did.
And l forgot to ask about doing a F/C test.:ybatty:
 
DustyKat

DustyKat

Super Moderator
I think knowing more than the doctor did certainly won’t be the last time upsetmom! :lol:

Maybe since she has just been seen you can ring and get them do a request without being seen. Probably worth a try. :)

I hope the Flagyl helps settle things! Good luck!

Dusty. xxx
 
upsetmom

upsetmom

Location
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Blood tests are all good.
ESR was 22, the lowest its ever been.
The only thing that stands out is the ALK PHOS which is elevated at 159 normal range is 30-120.

The Flagyl has settled everything.:)
 
DustyKat

DustyKat

Super Moderator
:):):):):):)

Woohoo for Flagyl!

Elevated ALK PHOS (ALP) at your daughter’s age is normally a good thing, it means growth/puberty is occurring.

:mademyday:

Dusty. xxx
 
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