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10-03-2017, 04:53 PM   #1
sharmistha.roy
 
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Crohns in teenager

Dear friends,
We recently moved to Australia from Dubai and my 13 year old daughter got diagnosed with Crohns in the lower bowel in the first 9 months of living in Melbourne.
When we started the investigation she only had mild cramps. The doctor performed a colonoscopy based on the high stool calproctectin count (which was greater than 4913) and diagnosed her with Crohns end of July.
She was put on 25mg prednisolone for 2 weeks and then on, has been on reduced dose of 12.5 mg till date, however her cramps are still there. Though she hasnt had any diarhoea. Her latest blood tests still show inflammation and there has been no reduction in the counts.
We are now going to the Royal Melbourne Childrens' hospital and consulting paediatric gastrontologists. They have recommended to put her on EEN for 8 weeks with azathropine.
This is a very difficult time for us and we are looking for counselling.
If you have any recommendations , please let me know.

Thanks!
Sharmi
10-04-2017, 12:42 AM   #2
pdx
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So sorry to hear about your daughter's diagnosis, Sharmi, but welcome to the forum.

The recommendation of EEN and azathioprine seems reasonable to me. While EEN is not easy, it is a very safe and effective way to reduce inflammation. My daughter did EEN for several months after her diagnosis, and it worked very well for her. Maintenance drugs like azathioprine can take a while to start working, so it is a good idea to use either steroids or EEN to reduce inflammation in the meantime.

In the United States, it is becoming more common to try a top-down approach to treatment, where biologics like Remicade or Humira are used right from the start. I think that in Australia, a bottom-up approach is more common, and immunomodulators like azathioprine or methotrexate are tried first. In this approach biologics are tried only if the immunomodulators don't work. (We have several members from Australia on the forum, so hopefully they will respond to your post; I'm sure they know more than I do about treatment in Australia. Paging DustyKat and Catherine.)

Good luck with your decision-making, and I hope that your daughter starts feeling better soon!
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
10-04-2017, 11:37 AM   #3
richard1353
 
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So sorry to hear about your daughter's diagnosis, Sharmi, but welcome to the forum.

The recommendation of EEN and azathioprine seems reasonable to me. While EEN is not easy, it is a very safe and effective way to reduce inflammation. My daughter did EEN for several months after her diagnosis, and it worked very well for her. Maintenance drugs like azathioprine can take a while to start working, so it is a good idea to use either steroids or EEN to reduce inflammation in the meantime.

In the United States, it is becoming more common to try a top-down approach to treatment, where biologics like Remicade or Humira are used right from the start. I think that in Australia, a bottom-up approach is more common, and immunomodulators like azathioprine or methotrexate are tried first. In this approach biologics are tried only if the immunomodulators don't work. (We have several members from Australia on the forum, so hopefully they will respond to your post; I'm sure they know more than I do about treatment in Australia. Paging DustyKat and Catherine.)

Good luck with your decision-making, and I hope that your daughter starts feeling better soon!
In China, the top-down method and bottom-up method are chosen by doctors according to some criteria, such as under 18 years old with moderate CD, some people with heavy CD, and so on. EEN and azathioprine cooperates against CD isn't common in China. Always doctors like to use the mesalazine at first time, because this drug has litter side effects than others.
pdx,I know that your daughter has few months with EEN. Can you provide me what's the constructive treatment solutions and processes for your daughter?
10-04-2017, 11:46 AM   #4
my little penguin
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Please understand
mesalazine (5-asa ) are Not recommended as a monotherapy for Crohns for anyone
It only treats the top layer of the intestine and DOES not treat the entire thickness of the intestine

As remember side effects listed are POTENTIAL
Meaning very few people actually have ANY side effects
All drugs and treatments for any disease have potential side effects

Een would be used to induce remission and aza would be used to maintain remission once een is stopped.
__________________
DS - -Crohn's -Stelara -mtx-IVIG
10-04-2017, 12:20 PM   #5
richard1353
 
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Richard1353

Please understand
mesalazine (5-asa ) are Not recommended as a monotherapy for Crohns for anyone
It only treats the top layer of the intestine and DOES not treat the entire thickness of the intestine

As remember side effects listed are POTENTIAL
Meaning very few people actually have ANY side effects
All drugs and treatments for any disease have potential side effects

Een would be used to induce remission and aza would be used to maintain remission once een is stopped.
YES, Dear MLP! You told me last time. But Mesalazine is the first choice in our China and Aza has more side effects especially for the under 16s。
SO perhaps, the same name of two medicines maybe have different contents in USA and China.
10-04-2017, 03:45 PM   #6
Maya142
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Mesalamine is the same in most countries, I would think. There are just different brand names - here, Pentasa and Asacol are used a lot.

ALL drugs have potential side effects. As my little penguin, Mesalamine (Pentasa, Asacol, Balsalazide, Rowasa) in any form is NOT recommended as a monotherapy for Crohn's. Crohn's affects all layers of the intestines, mesalamine only treats the top layer. It is effective for some cases of UC but NOT for Crohn's.

Any drug can have side effects - even Tylenol, which most of us have given our kids without a second thought - can have very serious side effects.

EEN is used mostly to induce remission. EEN would be generally 100% formula, although some hospitals allow 80-90% formula and 20-10% food. It is used for 6-8 weeks, sometimes longer, to get the child into remission.

It is most often NOT used as a long term treatment. Not eating food is hard - especially for older kids. It's isolating. And there is a fair amount of research that shows that once you add back food, generally the child flares. So it is used in addition to a maintenance medication - the EEN induces remission and the maintenance medication (Azathioprine, 6MP, Remicade, Humira, MTX) keeps the kiddo in remission.

The top down method is more common is certain countries - that is true. In the US, it is being used more and more to prevent permanent damage and to make sure the child does not get behind in terms of weight gain or growth. There are lots of studies showing that it is very effective and the kiddo is much more likely to stay off steroids and in remission if both a biologics (like Remicade or Humira) and an immunomodulator are used (MTX, 6MP).

It is used to prevent complications like strictures, fistulae, abscesses etc. The idea is that if you get the disease under control quickly, then the child will have fewer complications to deal with - fewer surgeries (hopefully none!), no growth delay, no effect on bone density etc.

It is also true that Azathioprine is being used less - at least in the US. It seems like in the UK and Australia, it is still being used a lot. In the US, GIs are using MTX more than Azathioprine because there is a slightly higher risk of cancer with Aza. MTX is in the same class as Azathioprine and is also inexpensive.

Sharmi, your daughter may need Prednisone for longer if she is still having symptoms. Azathioprine takes quite a long time to work - at least 3-4 months. That is why they are starting your daughter on EEN at the same time as the Aza. That is normal procedure - hopefully the EEN will take over soon and she will feel better, but until then, she may still need Prednisone and maybe more than 12.5 mg.

Good luck!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
10-04-2017, 04:11 PM   #7
sharmistha.roy
 
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Thankyou all for the replies. This put things in perspective and makes me better prepared to meet the doctor on 9/10 as to why Imuran and why not methotrexate.
I haven't had good experience with the adult gastrontologist, first he told us that mu daughter was not a severe case even though her stool calprotectin count was 4913 when she was diagnosed. After 2 months of prednisolone its only come down to 3892.
When we went to the paediatric gastrontologist they categorized her case as severe and said we need to immediately start with EEN and azathioprine.
What I am frustrated with is the conflicting advise i got from the gastros.

Would anyone know what are the side effects of Imuran visavis methotrexate?
I read Imuran causes hair loss - is that common among kids?

Last edited by sharmistha.roy; 10-04-2017 at 04:25 PM. Reason: Additional question
10-04-2017, 04:23 PM   #8
Maya142
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Yikes!! That is one high Fecal Calprotectin!

In kids, Crohn's Disease does tend to be aggressive. It is treated aggressively for that reason. It can spread over time - for example, a kiddo may start off with only disease in his/her colon and later the small bowel/upper GI tract becomes involved. There is also the growth/weight gain/development piece which is not really a factor in adult Crohn's.

I'm pointing out the differences just to say that pediatric GIs are different from adult GIs because ped. Crohn's is different from adult Crohn's in some ways.

CCFA has a great presentation on the risks and benefits of various medications used in IBD:
http://programs.rmei.com/CCFA139VL/%20

It talks about the cancer risks. Know that untreated Crohn's in itself is a cancer risk, as well as is very risky for other reasons - complications from a stricture for example (obstruction, perforation, sepsis) can be very dangerous. So treatment is VERY important.

Azathioprine has a higher risk of non-melanoma skin cancer. There is also a very, very rare type of Lymphoma associated with - hepatosplenic T cell lymphoma. There haven't been many cases, but it is a very serious kind of cancer. The risks for this particular type of cancer are very, very tiny. It was found in mostly teenage/young adult males who had been on Imuran/6MP. For that reason, GIs in the US are now trying to use Methotrexate in place of Azathioprine for teens or young adults (both females and males at our children's hospital, which is one the three big pediatric IBD centers in the US).

It is VERY rare...but I think the thinking is that MTX is safe and effective, so why not use it instead.
10-04-2017, 04:26 PM   #9
sharmistha.roy
 
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Thankyou so much. This was very useful.
10-04-2017, 04:39 PM   #10
Maya142
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My kiddo did not have hair loss at all with Imuran. She actually didn't have any hair loss either on MTX.

With Imuran, the only side effect she had was nausea when the dose was increased but it didn't last very long.

The side effects of Imuran and MTX are similar: GI side effects are common. Both can be hard on the liver, but your kiddo will be monitored very carefully (usually weekly bloodwork in the beginning). They are both immunosuppressants, so there is a higher infection.

That said, my daughter did not have any serious side effects with immunomodulators OR biologics and she has been on them for 7 years.

Imuran/6MP are pills, MTX can be a shot or a pill.

This presentation includes all the drugs and the safety efficacy in kids: http://media.chop.edu/data/files/pdf...eament2017.pdf
10-04-2017, 04:44 PM   #11
Maya142
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More presentations: http://www.chop.edu/health-resources...n-day-handouts
10-06-2017, 11:31 PM   #12
Catherine
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My daughter has been on imuran for 6 years. She was dx at 16 years and now 22 years.

Yes Australia does the bottom up.

The Royal Children is where I would have loved to my daughter to be treated. As Sarah was dx after turning 16 that was not a option for us.

She has no problems from imuran.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
10-06-2017, 11:51 PM   #13
Catherine
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Sharmi, your daughter may need Prednisone for longer if she is still having symptoms. Azathioprine takes quite a long time to work - at least 3-4 months. That is why they are starting your daughter on EEN at the same time as the Aza. That is normal procedure - hopefully the EEN will take over soon and she will feel better, but until then, she may still need Prednisone and maybe more than 12.5 mg.

Good luck!
There is a step approach in qualifying for level drugs.

One the steps is complete a course of pred or EEN. I don't believe the current course of Pred is high enough or longer enough to qualify. I am pretty sure 8 week EEN is. The Royal Children's would be following the necessary steps so that treatment plan qualify if needed.

Remember in 5 year since researched qualifying for higher level drugs and the procedure may have changed. DustyKat know our system inside outside.
10-07-2017, 02:53 AM   #14
richard1353
 
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Mesalamine is the same in most countries, I would think. There are just different brand names - here, Pentasa and Asacol are used a lot.

ALL drugs have potential side effects. As my little penguin, Mesalamine (Pentasa, Asacol, Balsalazide, Rowasa) in any form is NOT recommended as a monotherapy for Crohn's. Crohn's affects all layers of the intestines, mesalamine only treats the top layer. It is effective for some cases of UC but NOT for Crohn's.

Any drug can have side effects - even Tylenol, which most of us have given our kids without a second thought - can have very serious side effects.

EEN is used mostly to induce remission. EEN would be generally 100% formula, although some hospitals allow 80-90% formula and 20-10% food. It is used for 6-8 weeks, sometimes longer, to get the child into remission.

It is most often NOT used as a long term treatment. Not eating food is hard - especially for older kids. It's isolating. And there is a fair amount of research that shows that once you add back food, generally the child flares. So it is used in addition to a maintenance medication - the EEN induces remission and the maintenance medication (Azathioprine, 6MP, Remicade, Humira, MTX) keeps the kiddo in remission.

The top down method is more common is certain countries - that is true. In the US, it is being used more and more to prevent permanent damage and to make sure the child does not get behind in terms of weight gain or growth. There are lots of studies showing that it is very effective and the kiddo is much more likely to stay off steroids and in remission if both a biologics (like Remicade or Humira) and an immunomodulator are used (MTX, 6MP).

It is used to prevent complications like strictures, fistulae, abscesses etc. The idea is that if you get the disease under control quickly, then the child will have fewer complications to deal with - fewer surgeries (hopefully none!), no growth delay, no effect on bone density etc.

It is also true that Azathioprine is being used less - at least in the US. It seems like in the UK and Australia, it is still being used a lot. In the US, GIs are using MTX more than Azathioprine because there is a slightly higher risk of cancer with Aza. MTX is in the same class as Azathioprine and is also inexpensive.

Sharmi, your daughter may need Prednisone for longer if she is still having symptoms. Azathioprine takes quite a long time to work - at least 3-4 months. That is why they are starting your daughter on EEN at the same time as the Aza. That is normal procedure - hopefully the EEN will take over soon and she will feel better, but until then, she may still need Prednisone and maybe more than 12.5 mg.

Good luck!
Hello, Dear Maya, I downloaded the pdf(efficacy-safety-of-treament2017) that you gave in the post. I find that the third page said the useful range of medicines for small bowel and colon. As you know, the another name of Pentasa is mesalazine. Pentasa can work for JEJUNUM / ILEUM. The CD mainly happens in this parts of small bowel. In China, docotors alwasy tell us the mesalazine need more time to effect on small bowel, but it has the lowest side effects than other medicines, such as COLAZAL/AZULFIDINE/DIPENTUM.
10-07-2017, 05:32 AM   #15
DustyKat
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Hi Sharmi,

I'm so sorry to hear about your daughter.

I would be following the advice of the paediatric gastro's at the children's hospital. As has been said, kids tend to have a somewhat different and often more severe presentation of disease than adults.

Due to the government covering the cost of biologics on the PBS it requires an authority script and is therefore conditional.

The conditions and criteria for paediatric Crohn's state that 2 of the following 3 conventional therapies must have failed to achieve an adequate response:

1. A tapered course of steroids over 6 weeks.

and/or

2. An eight week course of EEN.

and/or

3. A 3 month course of immunosuppressives (6MP, Imuran, Methotrexate).

There is more detail in the link below, clink on link and then Crohn's disease initial paediatric PBS authority application.

https://www.humanservices.gov.au/org...ls/forms/pb085

Both of my kids have been on Imuran, my son still is. It would be 7 years now. Neither had side effects and they did not lose their hair.

@richard1353, what you are saying in regards to mesalasine and side effects is correct but the issue with its use in Crohn's is that Crohn's has the potential, and frequently does, to extend beyond the surface of the bowel wall and cause damage deep within it. Mesalasine is a topical medication, it works on the surface of the bowel wall, hence why it has very good outcomes in UC and conversely very poor outcomes in Crohn's when used as a monotherapy.
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10-07-2017, 08:35 AM   #16
my little penguin
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@richard1353

There is no evidence that 5-ASA induces mucosal healing and should thus be viewed as an adjuvant therapy. If 5-ASA is used as a solitary therapy mucosal healing should be verified


3.5.1. Efficacy of 5ASA
Although clearly documented to be efficacious in the treatment of UC, the role of aminosalicylates in CD remains controversial. There are no evidence-based data indicating an advantage of using 5-ASA as induction therapy for CD.81 In the only pediatric placebo-controlled cross over trial248 5-ASA showed no benefit for inducing remission in 14 children with active CD involving the small bowel. The efficacy of 5-ASA to maintain remission was not clearly demonstrated in adult CD trials with inconsistent results seen in the published meta-analyses. In the only maintenance clinical trial in pediatrics, 122 CD children in remission were randomized to receive mesalazine 50 mg/kg per day or placebo.249 Patients were recruited over two time periods after: (i) medical and/or nutritional treatments; and (ii) nutritional treatments only. The authors found a two-fold lower risk of relapse in the first and a two-fold increased risk in the second recruitment period. Overall, the one-year relapse risk was 57% and 63% in the mesalazine and placebo groups, respectively. There are no data to support 5-ASA as maintenance therapy in children with CD.60,81 Close monitoring of CRP, ESR and fecal calprotectin should ensure complete remission and a low threshold should be set for treatment escalation

From
http://www.sciencedirect.com/science...73994614001482
10-07-2017, 12:10 PM   #17
richard1353
 
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Hello, Dear DustyKat and Maya! Your fruitful knowledge are very useful and helpful for me an other IBD friend! Because I am in one group (now 383 persons) of CD and UC patients in China, I will pass your professional suggestions to them!
Thanks again!!!
10-07-2017, 12:41 PM   #18
richard1353
 
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Hi Sharmi,

I'm so sorry to hear about your daughter.

I would be following the advice of the paediatric gastro's at the children's hospital. As has been said, kids tend to have a somewhat different and often more severe presentation of disease than adults.

Due to the government covering the cost of biologics on the PBS it requires an authority script and is therefore conditional.

The conditions and criteria for paediatric Crohn's state that 2 of the following 3 conventional therapies must have failed to achieve an adequate response:

1. A tapered course of steroids over 6 weeks.

and/or

2. An eight week course of EEN.

and/or

3. A 3 month course of immunosuppressives (6MP, Imuran, Methotrexate).

There is more detail in the link below, clink on link and then Crohn's disease initial paediatric PBS authority application.

https://www.humanservices.gov.au/org...ls/forms/pb085

Both of my kids have been on Imuran, my son still is. It would be 7 years now. Neither had side effects and they did not lose their hair.

@richard1353, what you are saying in regards to mesalasine and side effects is correct but the issue with its use in Crohn's is that Crohn's has the potential, and frequently does, to extend beyond the surface of the bowel wall and cause damage deep within it. Mesalasine is a topical medication, it works on the surface of the bowel wall, hence why it has very good outcomes in UC and conversely very poor outcomes in Crohn's when used as a monotherapy.
I read the conditions and criteria for 6~17 years old children for biologics against CD. In China, doctors just judge rich or poor! If you can pay the expensive biologics, you will inject them to induce remission.
10-08-2017, 11:08 PM   #19
sharmistha.roy
 
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Thanks everyone for the replies. Its quite heartening to read everything.
We are starting EEN from next week and 4 weeks into EEN we will start Azathioprine.
The doctor feels that this drug is suitable for girls and Methotrexate is more for boys also my daughter would have to take this drug for almost 2 years based on the disease.
Has anyone come off azathioprine once its started?
10-09-2017, 08:56 AM   #20
my little penguin
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You take ibd drugs for life
Not 2 years
Ds was dx 7 years ago as mild and is still on meds

Definitely get a second opinion

When meds are stopped
There is a high risk of a large flare which is harder to control
And mild inflammation that can summer and cause damage resulting in surgery
10-09-2017, 08:58 AM   #21
my little penguin
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10-09-2017, 09:37 AM   #22
Jmrogers4
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Hi and Welcome,
My son was on Azathioprine for roughly 2 years, a short stint on methotrexate (about 6 months) a year on LDN and back to azathioprine for another 6 months to a year before moving on to Remicade which he has been on for nearly 4 years.
We moved off azathioprine because it was not working as well as we hoped. As MLP has stated mild inflammation can simmer and cause damage which can lead to surgery which is where we were at. The simmering inflammation also affected his growth and development which had pretty much stalled. The remicade has kept him in remission there has been some suggestion that we move back to azathioprine now that he is 18 and has caught up on growth but just started university and don't want to rock the boat so will most likely stay on for the next few years and see where were at but there will always be a maintenance medicine since there is no cure.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
10-09-2017, 03:42 PM   #23
sharmistha.roy
 
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Thanks again for the replies. We are going to go ahead with EEN and presdnisolone for 4weeks before the azathioprine starts.
Has anyone tried faecal transplant? Is that a cure?
10-09-2017, 03:50 PM   #24
Maya142
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Fecal transplants have been in trials for IBD - unfortunately, they are not a cure. They actually did not do as well as expected for both UC and CD.

They do work very well for CDiff infections though.

My kiddo has been on IBD meds since diagnosis. We have switched meds as needed - she was on Azathioprine for a while and when she flared despite it, we switched to Cimzia. She will remain on meds to keep her Crohn's under control.

The idea of life-long medications is scary and so we just take it one day at a time. We hope that in my daughter's lifetime there will be a cure, but until there is one, we need to prevent damage to her small bowel and colon.
10-09-2017, 04:44 PM   #25
sharmistha.roy
 
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Thanks for that. This is so frustrating. I am struggling so much to come to terms with this.
10-11-2017, 03:42 PM   #26
sharmistha.roy
 
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Dears , has anyone tried any treatment using stem cellls?
Any recommendations for doctors in Australia for the same
10-11-2017, 05:44 PM   #27
my little penguin
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Stem cells are extremely risky
Used as a last resort
Since the patient immune system is "killed " off
Secondary complications are very high including death
They won't use it in the US unless all other avenues have been tried first
10-13-2017, 05:23 PM   #28
sharmistha.roy
 
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Stem cells are extremely risky
Used as a last resort
Since the patient immune system is "killed " off
Secondary complications are very high including death
They won't use it in the US unless all other avenues have been tried first
Thanks so much!!
10-13-2017, 05:25 PM   #29
sharmistha.roy
 
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We started EEN in Thursday and from yesterday my daughter is having black waterry stools. Is this expected? The frequency hasnt been alarming she went twice yesterday but i am worried and freaking out. Any advice or previous experiences- please share
10-13-2017, 05:28 PM   #30
my little penguin
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Een can cause liquid in = liquid out
But it shouldn't be black
Definitely call the on call GI
To let them know
Ds had pure liquid the first time he was een
But normal bm brown twice a day

Different brand later een
No liquid bm
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