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Backache

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Do anyone's kids get backaches ?

My daughters has been complaining of a sore back...in the middle... on and off for about a year now. We've told the GI many times and they keep saying its from the inflammation. I took her to see my chiropractor a few months ago and he adjusted her spine but it never helped. Would it be a good idea to get an x ray...she just had a bone density test not long ago...I'm wondering would that have showed if anything was abnormal.
Also her knees keep getting sore too.

We just keep putting on cream and using a hot water bottle which helps for a little while.
 
My son has been complaining of the same thing for a while.

We were worried it was crohn's or medication related but then we got him a new mattress and that seemed to do the trick. He had his mattress since he was two so it was probably time for a new one. We figured it out when we stayed in a hotel room and after sleeping on that mattress his back felt great.
 
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Johnnysmom l don't think it could her mattress as we've only had it 4 years. But come to think of it my son complains of a sore back too and he has the same mattress bought at the same time. Now you've got me thinking..:confused2:

MLP... thanks
 

Tesscorm

Moderator
Staff member
My son had backaches prior to diagnosis, GI said it may have been due to the intestinal inflammation?? For the most part, the backache went away once he began treatment and, now hasn't hurt at all in the past few months.. a year now??

When it was hurting, he used Tiger Balm ointment and found it give him quite a bit of relief. He also found stretching exercises and massage helped.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Abdominal pain and inflammation can cause back pain. Its usually in the middle or lower back. You can try to relieve the pain with some of the methods listed above already (physical therapy, tiger balm, massage, heating pad or hot bath etc) yet getting the inflammation down and under control is what will stop the pain. Unless the pain is caused by arthritis (which is treatable with other medications). An x-ray should show if there's any arthritis going on in the spine or other joints (you mentioned knees as well).

I had physical therapy done on my back when I was a kid due to a lot of back pain and had tiger balm rubbed in every night. Those only helped temporarily and the pain only went away when I finally went into remission. My most recent flare caused a lot of abdominal pain and extreme back pain (I felt both abdominal and back pain in the middle). Once I had IV steroids both the pain in my abdomen and spine went away completely (I do have osteoarthritis in my spine but the pain caused by abdominal inflammation and swelling from gas build up feels different).
 
Rheumy checked out Ryan and told him he was too tight and needed to do stretches like MLP said. Now he has had some severe middle back pain, but that was with a flare.

One thing I noticed about him pre-dx is that he sat kind of hunched over with his arms crossed over his abdomen a lot. Posturing because of discomfort might cause back pain.
 

DustyKat

Super Moderator
Sarah suffered with back pain around her kidney region when she was undiagnosed but since being in remission I can only recall her complaining of it maybe once or twice and that was following the drive home from Sydney. The only other thing that springs to mind is that she does prefer a very firm bed so I'm not sure if that plays into it being because of back pain or not.

Matt occasionally suffers with lower back pain. Now bear with me while I waffle on! :lol:

This is something I hadn't given any thought to until very recently. When Matt was about 10, I think, he was diagnosed with Sever's Disease and then about a year after that he developed right knee pain that was characterised by a very noticeable lump under his knee and was diagnosed with Osgood Schlatter's Disease. At the same time all this was happening he complained of right hip and lower back pain and it was put down to being a flow on effect from the knee. Given time it did resolve.

Anyway, as you likely know Matt was diagnosed super quick and with very few symptoms indeed and his disease was rated as mild to very mild. In the 6 months following diagnosis Matt had numerous scans done but one in particular made a comment that at the time I didn't give a lot of thought to and it is only of late that I have pulled the report out again.
It was from the sinogram he had about 6 weeks post diagnosis and this is what it said:

There is irregularity of several regions of the sacroiliac articular surfaces, raising the possibility of early erosive arthropathy.
Now if this is indeed the case then I can't see that it would have happened in 6 weeks. So either it had been present asymptomatically for some time in the lead up to diagnosis or was it like most of the EIM's and present for quite some time before the intestinal symptoms became apparent. Was what he was experiencing for quite a period of time as an 11/12 year old sacroilitis that subsequently went into remission? Hmmmmm....


Dusty. xxx
 
Pre-dx my son complained of a lot of middle back pain, knee pain, and other various joint and bone pain. Now on meds, the back pain seems to have resolved, the knee pain is diminished, but he still gets occasional aches and pains in his joints all over. Currently his L heel is really bothering him. Gel insoles in his shoes has helped a bit. Our poor kids!!!
 

DustyKat

Super Moderator
I should mention that I don't doubt his diagnoses of both Sever's and Osgood Schlatter's Disease as he did fit both the demographic and lifestyle. That being a male, child/adolescent and athletic.

Dusty. :)
 
Location
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We had a bad day yesterday.

Last day of school holidays so l decided to take her shopping to Sydney ( just over an hour drive ). It was lunch time when we got there so we had something to eat and then went shopping. Not even 15 mins and she had so much pain in her stomach that she couldn't walk. I gave her some Panadol and we sat down for a while. She was still in pain half an hour later so we come home.....on the drive back i kept asking her questions ...about this pain...had it happened before...For the last few weeks every time she eats she gets pain but this was the worst that had happened.. This was the first time i had heard of it . ..This might seem like a stupid question but do i contact the nurse...Shes had pain after eating before but all they did was a blood and stool test and said everything was alright...Now l'm convinced her backache has something to do with her crohn's
 

Jennifer

Adminstrator
Staff member
Location
SLO
I'd contact the GI and let them know. An MRI or CT scan would be good (CT scans do give off a lot of radiation so try to limit them if possible yet the procedure is quick so its a toss up) to see what's going on inside. Pain after eating usually points to a narrowing/stricture (could be inflammation or scar tissue or both) somewhere in the GI tract.
 

crohnsinct

Well-known member
I am glad you contacted them. I would also but I am like MLP. I think they got caller ID after they got O as a patient;) The way I figure, a call doesn't hurt anyone but a missed call could potentially cause something to be missed.

As for pain, O frequently had knee pain prior to dx but we put it down to breast stroke kick and overuse and awkward movement. Once treated for Crohns, knee pain went away. She did have back pain surface but chiro took care of that. I would think if it were a mattress problem chiro would make it feel better even if only temporarily. Our GI takes all joint and back pain reports pretty seriously. Doesn't panic but does perk up and say, "hmmm".

Good luck. Let us know what GI says.
 
My son had backaches prior to diagnosis, GI said it may have been due to the intestinal inflammation?? For the most part, the backache went away once he began treatment and, now hasn't hurt at all in the past few months.. a year now??

When it was hurting, he used Tiger Balm ointment and found it give him quite a bit of relief. He also found stretching exercises and massage helped.
Be careful though, that tiger balm burns people with sensitive skin. I found out the hard way.
 

Tesscorm

Moderator
Staff member
Glad you contacted the nurse as well. I agree, it doesn't hurt to let them know what's going on.

And, yes, good point re the Tiger Balm. The ointment never bothered Stephen when he used it before/after hockey or just when his back was sore, HOWEVER, it did cause him a fair bit of discomfort when he once put it on immediately following a hot shower! I guess the shower had opened his pores, or his skin was sensitive from the heat but it did burn for a while! He also found out the hard way! :( I should've mentioned that before!
 
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The nurse got back to me asking if she was on Ozmerperole (?) and if she was getting nausea. She said she'll talk to the DR and get back to me.

My daughters not feeling too good today. She's had a fever and been really tired and has no appetite. I'm just hoping she's coming down with the flu.

I did buy some Tiger Balm....it does sting a little bit but it is helping.
 

DustyKat

Super Moderator
Ugh, so sorry to hear about yesterday and today. :(

Good to hear you have made contact and I hope they get back to again ASAP! Do they know about the fever?

The medication would be Omeprazole, it is a PPI.

Thinking of you! :heart:

Dusty. xxx
 
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She's definitely getting the flu. She started to get a runny nose and sore throat.

Dusty when l emailed the nurse l never realized she had a fever.
The med she asked about was a PPI...It sounds like she thinks its an acid problem.

Hopefully she gets back to me tomorrow.
 

DustyKat

Super Moderator
Poor love. :(

Ah okay, I thought you mightn't have known.

I hope she does too! I would give her to 2pm and then ring her. :wink:

Dusty. xxx
 

crohnsinct

Well-known member
Weird...my friend just told me that she was recently put on Omeprazole and it made her very nauseous. She called her doc and she said that nausea is a side effect. Who knew?!

Wish it was a simple as coming off a PPI and not the flu but we will take flu over flare any day. Hope it all passes quickly.
 
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I should have mentioned my daughter has never taken a PPI. A few times they've tried to put her on them but l wasn't convinced it was an acid problem. It was when she was getting stabbing chest pain.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Ozmerperole is what I was put on a week before I went to the ER for a partial obstruction. Methotrexate does seem to increase my acid reflux but sometimes those symptoms can be caused by other things (such as a narrowing in the intestines). Hope its just the flu (no one wants that either but better than something worse). Either way stay on top of it like you've been doing. :)
 
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She told me to use the form that we have at home.

B12 / Folate / Zinc / UEC / CUP ?
FBC / ESR / CRP /LFT /IRON STUDIES
Vitamin D / PTH / TGN / 6MMP
 

DustyKat

Super Moderator
B12 - No
Folate - No
Zinc - No
UEC - No
CUP? - CCP? It is a test for a Rheumatoid antibody - No
FBC - Yes, it may affect the White Cell Count.
ESR - Yes, if inflammation is present.
CRP - Yes, if inflammation is present.
LFT - No
IRON STUDIES - No
Vitamin D - No
PTH - No
TGN - No
6MMP - No

Dusty. :)
 

DustyKat

Super Moderator
Hmmm...7 vials...no pain today. Maybe it is like the old days when a good bleeding was a cure for everything! :eek2:

Good luck with the results and I hope the pain stays away! :ghug:

Dusty. xxx
 
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Still no results. They should be back but they never called me.:(

She had a little bit of pain today but it didn't last long.
I'm just wondering if the bowel is inflamed ....which it probably is. Could the pain be the food passing through the inflamed part. She always seems to have pain in a certain area.

She's had pain like this before that went away on its own with no explanation. It would be good to have an answer.
 

DustyKat

Super Moderator
Food certainly can do that mum. It can also occur if there is no inflammation but scar tissue is present.

Ugh! Ring them tomorrow. :ghug:

Dusty. xxx
 

Jennifer

Adminstrator
Staff member
Location
SLO
Could the pain be the food passing through the inflamed part. She always seems to have pain in a certain area.
Food, gas and even liquids passing can cause pain where sections are inflamed or even narrow from scar tissue. What type of diet is she on now? Softer foods (soups and stews), more frequent smaller meals and supplement drinks (Ensure Clear and vanilla flavored Ensure powder etc) may help reduce the pain while still giving nutrients.
 
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Blood results are back. Nothing has changed much. ESR is still 37. CRP IS 7 was 2 . She said this might be from the flu . Hemoglobin has dropped a little bit to 113.

She's going to talk to the DR and see if he wants her on a PPI. In the meantime she said to try some tum tums.

She said they might also do a MRE.

Now this is the interesting part...As my daughters been on Imuran for 5 months l asked why her ESR hasn't gone down much and she said at the moment they are only treating symptoms..:yfaint: If her blood tests start getting worse or symptoms start then the next step would be weekly injections...but they try to avoid this. l thought we were trying to get the disease under control not just control symptoms. She got me so confused that l was lost for words. :confused2: This didn't make sense to me at all.

Jennifer shes still eating a normal diet but smaller meals.
 

Jennifer

Adminstrator
Staff member
Location
SLO
None of my GIs ever just treated symptoms (might as well just hand you some Lomotil for diarrhea and call it a day, so to speak). They wanted to get the inflammation under control with medication and down into normal and stable levels. Allowing small amounts of inflammation over time is just going to build up scar tissue. Might need to have a serious talk with the GI and if they don't seem like someone you can trust then if possible try to see someone else for a second opinion.
 

Tesscorm

Moderator
Staff member
Agree with Jenn. I would ask the GI if she isn't concerned about ongoing inflammation causing scar tissue and malabsorption issues and low HGB. You said treating the symptoms 'for now', why only treat the symptoms for now? What and when is the next step?
 

DustyKat

Super Moderator
Hey upsetmom,

Little wonder you are confused! :ghug: Yes, treat the symptoms on the way to getting you into remission! This should not be about waiting for things to get worse before they better but knocking this beast on the head ASAP before lasting damage is done.

If this wait and see approach is the GI's philosophy then perhaps it is indeed time to move to the adult GI??

Dusty. xxx
 
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If this wait and see approach is the GI's philosophy then perhaps it is indeed time to move to the adult GI??
Dusty. xxx
Like l said l was shocked to hear this so l don't know who's idea this was.

I've been thinking maybe its time to move on.
 

DustyKat

Super Moderator
I haven't dealt with paediatric GI's but I can say that the adult GI's we have dealt with are very no nonsense and proactive.

Dusty. :)
 

Catherine

Moderator
I don't think all your results would be back. You listed them as testing TGN 6MMP this test result takes up to 10 days

This test will tell them whether there is room move to with the aza.

Give it another week and ring for results of this test.

There are a limited number of drugs, and aza is too good a drug to give up on too early. Remember under our system it is very hard to qualify for remicade.

Our next step would also be the weekly injection too.
 
Location
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I don't think all your results would be back. You listed them as testing TGN 6MMP this test result takes up to 10 days
Thanks Catherine.

She did mention something about testing the imuran next time...Maybe she didn't know that it was tested because l already had the form at home. Also l didn't know it takes that long.
 

Catherine

Moderator
I spoke to the lab at a hospital who actually perform the test and they said up to 10 days.

Where was your blood test done?
 
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At a public hospital...The nurse who did the test told me all the results would be back the same day as they were all tested there except the Vit D had to be sent to another hospital.
 

DustyKat

Super Moderator
Routine bloods will always be returned the same or the next day.

Metabolites will always take longer as Catherine has said.

The only other delays we experience are usually with things like zinc or Vit C.

Dusty. xxx
 

DustyKat

Super Moderator
:lol:

When Matt was at the GI he said that it was pleasing to see the GP was so thorough with the blood testing and monitoring for deficiencies. He then looked up from the papers at me and said...oh, he wasn't, you asked for them didn't you. :lol:

Dusty. :)
 
Location
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B12 / Folate / Zinc / UEC / CUP ?
FBC / ESR / CRP /LFT /IRON STUDIES
Vitamin D / PTH / TGN / 6MMP
This is the blood test my daughter had done last week and this is the one they want done in a few weeks before we visit the GI...Do they need to check Vit D...B12...Folate and zinc again when they were normal ?

FBC / ESR / CRP / LFT / IRON STUDIES /UEC / CMP
Vit D / PTH / B12 / FOLATE /ZINC
 
Location
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Does anyone know what could cause being full after eating a small amount of food ?

Shes still getting pain after eating....but not all the time.
 

my little penguin

Moderator
Staff member
Reflux
My oldest has this.
If its not under control by a ppi then he feels full and sometimes has pain.

DS has upper Gi crohn's which is controlled with an h2 blocker/humira -
If his isn't under control same thing
So two different causes and treatment but the same symptoms

Hope she feels better soon .
 
When my son had a pretty narrow stricture and food couldn't get through, everything would get backed up so after just a few bites he'd be feeling full. He also had pain.
 
Location
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I don't think she's constipated. But something is definitely going on.

Last night she had just gone toilet and about 10 mins later she was in so much pain..:(.. and she hadn't eaten for awhile.
The pain is always in one area just above the bellybutton.
 

Jennifer

Adminstrator
Staff member
Location
SLO
When is she having more testing done to see what's going on inside? You mentioned possibly and MRE before.
 
Location
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We have an appointment next month to see the GI so l'll have to talk to him as the nurse keeps telling me its probably acid that's causing this pain. I just bought some Tums as she recommended.... we'll see if they work.
 
Hope the tums work and she gets some relief. I remember when my son was diagnosed his pain was always just above his belly button. There were some ulcers at the base of his stomach. Not sure about feeling full after only a small amount of food, sorry.
 
The feeling full can also be somewhat psychological. My son experienced it because he had acid refux and nausea from eating. It was sort of a learned response. Eating=pain=don't eat, no pain. He would get most anxious around dinner time when eating out. It was unknowingly made worse by us because we would constantly bring attention to how much he wasn't eating. Horrible cycle. A PPI helped a lot. The prednisone helped too, either because it worked on the inflammation or just increased his appetite.

It is so stressful to see them not eating well, hope she is feeling better soon. ((((hugs)))
 
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So far so good..:) but l don't know if it's from the tums as she sometimes doesn't get pain for a few days.

I tried ringing to change the appointment but the answering machine kept coming on.
 

DustyKat

Super Moderator
Well I hope it's the Tums and not the days between attacks! :ghug:

Ugh, bloody answering machines! At least it's Thursday so hopefully you either get a response or get onto them before the weekend. Good luck!

Dusty. xxx
 
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No luck getting through. I think they must have been closed as the recorded message said to ring between certain times and l kept ringing all day.

Anyway l received a script in the mail for Nexium with a note from the nurse that said try this to see if pain the eases.

She's had no pain so tomorrow l might stop the Tums and see if the pain returns. I'm still not convinced that this is acid so l'm not sure if l should give her the Nexium or not. A few months ago l asked my GP about PPI and he told me once someone starts a PPI its usually for life ...l don't know how true this is...l don't want to add another med if it's not necessary.:confused2:
 

DustyKat

Super Moderator
The problem with PPI cessation is debatable. I have seen studies that suggest there is little problem when ceased but most indicate there is a problem with rebound reflux. To give your daughter Nexium for a short period of time is not the issue and IIRC the sort of time frames I have seen suggested for rebound reflux to occur is 8 weeks plus. Don't quote me on that though! :eek2:

Rebound reflux is when the symptoms that the drug is mean't to treat by reducing acid production actually become worse when the drug is ceased as the body starts producing more acid than before the PPI was commenced. This issue should abate over time though as far as I know.

I am wary in prescribing meds when the indication to do so is uncertain but in view of the symptoms your daughter has I don't know that you could say there is no indication for it. I personally don't feel that a short regime will be detrimental and may well give you the answer you need one way or the other. I would commence the Nexium when the pain starts up again and go from there.

Dusty. xxx
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
A few months ago l asked my GP about PPI and he told me once someone starts a PPI its usually for life ...l don't know how true this is...l don't want to add another med if it's not necessary.:confused2:
What prompted you to ask? I don't blame you for your skepticism about starting the meds! It doesn't seem very professional for them to prescribe meds based on phone conversations!

I know it's not the same situation but my son was on Nexium for both of his pred courses over the last few years. He stopped both times w/o problem. He's never had acid reflux though. I think it's just standard to take ppi with pred.
 
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What prompted you to ask?
They tried to put her on a PPI awhile ago when she was having stabbing chest pain.

I've had a bad experience with a PPI. I was put on it for 4 weeks when l didn't even have acid to begin with. When l was told to stop it by my current GP l had a lot of trouble trying to get off it...the rebound was horrible...That's why l questioned my GP if l had trouble after 4 weeks what would the rebound be after a few months.

I want to be 100% sure its acid before l put her on a PPI.
 
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my little penguin

Moderator
Staff member
There is a ph probe study they could do to see if its acid but you have to stay overnight in a hospital for that one .
You can wean off a ppi but you have to do it very slowly to avoid rebound reflux
.
As in decrease a tiny but using a kitchen gram scale each week or two .
 
Location
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Thanks everyone l've decided to put my own bad experience aside and if the pain starts again she's going to try the Nexium. Hopefully the pain doesn't return.
 
Location
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I'd thought l'd update..... I'll probably speak too soon.

No pain at all after eating for a few weeks so she never started the nexium.
Still occasionally getting back pain but apart from that everything's been good.:)

We have an appointment with GI on Wednesday.
 

DustyKat

Super Moderator
Thanks for the update upsetmom and what a fab one it is! :):):)

I am so glad to hear that things have settled and I hope it continues that way!

Good luck with the appointment on Wednesday. Fingers, toes and everything else crossed that all goes well! :goodluck:

Dusty. xxx
 
I hope your appt goes well. :)
I never knew that about PPI's so thanks for that info. My daughter was put it on last June 2012 when on Pred at 15 mg Lansoprazole, she has been off it a couple of times but is now on 30 mg a day. She still has what I think sounds like heartburn and chest pain.
The only thing the dr told me when she came off it was alt days as she may get stomach pain.
This is site is so informative. Thank you. :)
 
Location
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Went to see our GI today...I'm not very happy.

Blood test still shows inflammation ...CRP was 2 gone up to 7
ESR.... still at 42. Iron levels were also on the low side. GI said as long as she's feeling good he's not worried about about the blood test.

The pain she was getting after eating, he said it was probably cramping but now that its gone he's not worried so he doesn't want to do an MRI. He said if the pain starts again and she is vomiting as well then he might consider an MRI.

We told him that she gets back, ankle and knee pain but again he wasn't worried.

What a waste of a day...l could have just rang up and got the results over the phone.
 
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Therapeutic Drug Monoitoring

6 Methyl Mercaptopurine level....7,750
Thioguanine level....581

Are these it?

He said they were good.
 
Hi I'm sorry to hear it wasn't a worthwhile appt.
I wanted to share the theraputic ranges that we have for Ella and her Azathioprine monitoring.
6TGN (235-450)
6-MMPN (<5700)

I know when Ella had 6-TG levels were 574 her Aza was stopped, she also had low neutrophils at the time so our situation was different.
Looking at your results they are higher than our reference ranges.
Do you have the range next to the result for your tests?
I hope I haven't confused you just wanted to help.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
It is a drug on its own but I'm guessing it is the 6TGN and is a metabolite of the Imuran?? I'm gonna see what Google says...
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Might be an interesting read for those with celiac as it appears to have possibilities at very low doses.

It is used to treat childhood leukemia at high doses and apparently is quite dangerous. It is used on its own at low doses to treat IBD.
 

Catherine

Moderator
It written like this on mine

6 - thioguanine nucleotide ( 6-TGN). Reference range 235-450 pmol/8 x 10^8 RBCs
6- methylmercotpurine (6-MMP) reference range <5,700 pmol/8 x 10^8 RBCs
 
My son's dose of 6mp was cut in half and the GI added allopurinol when his numbers reached 6-MMPN-6,968 and 6TGN - 606. Once we moved to Cincinnati our new GI felt Johnny's numbers did not necessitate adding the Allopurinol. Johnnys levels have sort of been all over the place and the GI doesn't really have an explanation for this but we are watching for a trend and hopefully some stabilization.

I think one high number is not anything to worry about but it seems there are different schools of thought on this. When Johnny's level was that high the GI ordered metabolite testing 5 weeks later. So if he is comfortable with this number for now, I would want a re-check soon.

The fun never stops does it?!?
 
Not sure if this was clear for you-

Anything over 400 for 6-TGN increases the likelihood of Leucopenia. Anything between 230-400 is in the "therapeutic range" and indicates a higher likelihood of remission.

The 6-MMPN shows damage to the liver. Anything over 5700 is a higher risk of Hepatotoxicity.
 
Our range is the same too...

For 6-TGN, between 230-400 is good. 6-MMPN, anything over 5700 is concerning.

Maybe the ranges are slightly different in Aus?
 
Location
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Thanks everyone.

He did tell me they were within the normal ranges but doing my own research they're not....I think its the same ranges everywhere.

Our next appointment is in 4 months.

I think it might be time to find a new DR as this one didn't seem concerned about anything...:voodoo:

I'm actually scared to give her her tablets...:cry:
 
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Went to see our GI today...I'm not very happy.

Blood test still shows inflammation ...CRP was 2 gone up to 7
ESR.... still at 42. Iron levels were also on the low side. GI said as long as she's feeling good he's not worried about about the blood test.

The pain she was getting after eating, he said it was probably cramping but now that its gone he's not worried so he doesn't want to do an MRI. He said if the pain starts again and she is vomiting as well then he might consider an MRI.

We told him that she gets back, ankle and knee pain but again he wasn't worried.

What a waste of a day...l could have just rang up and got the results over the phone.
But then they :(wouldn't get paid.....Sorry Mom!!!!:kiss:
 
Gosh I feel for you. That's a really tricky one and I would feel exactly the same as you. Do you have an IBD nurse you could chat to or even a different doctor at the hospital. It does seem that everyone on here has the same ranges that the tests cover.
Being in the UK I dont know how it works in Australia, what about calling the Crohn's and Colitis association for advice.
 
Location
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We do have a nurse...but she just goes by what the DR says.

And the other DR l think only works on Thursdays and that day isn't good for us as my daughter has a lot on at school.
 
I would call and discuss it. My son's GI in Cincinnati didn't think the levels were bad either. I would just say you know they are above normal and you would like to know why they aren't going to check her earlier than 4 months. I have done this before for other things and then once I speak to them I am satisfied with the reason given for why the GI is doing things. If your aren't satisfied with the explanation or they seem to just blow you off then I would start looking for a new GI.

I think the levels have to be high for a long time to cause any damage. Once you talk to the nurse or GI maybe you will feel better about giving her the tablets. I had a few times I wanted to give up on 6mp too, but I am glad I didn't. There are not a lot of options out there and you don't want to give it up till you have to. And now 6mp works great for my son.

Good luck!!
 

my little penguin

Moderator
Staff member
How are her liver numbers ( AST/ALT)?
I know DS's numbers for 6-mp where high for a small amount of time -weeks-but GI was "ok" since his AST/ALT were ok.
that said it didnt take long a matter of weeks and his liver numbers went too.
WE immediately got a call from the GI to stop the 6-mp that night.


I would still look for another GI if you didnt like the explanation.
regardless of if it was a good schedule fit. since hospital stays tend to not fit onto a schedule either- what about an adult GI?
 
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