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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
 
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!
 
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?
 

my little penguin

Moderator
Staff member
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.
 
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.
 

Maya142

Moderator
Staff member
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!
 
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:

Maya142

Moderator
Staff member
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/

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.
 

Maya142

Moderator
Staff member
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/pdfs/efficacy-safety-of-treament2017.pdf
 

Catherine

Moderator
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

Moderator
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.
 
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.
 

DustyKat

Super Moderator
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/organisations/health-professionals/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.
 

my little penguin

Moderator
Staff member
@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/article/pii/S1873994614001482
 
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!!!
 
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/organisations/health-professionals/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.
 
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?
 

my little penguin

Moderator
Staff member
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
 
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.
 
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?
 

Maya142

Moderator
Staff member
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.
 

my little penguin

Moderator
Staff member
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
 
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
 

my little penguin

Moderator
Staff member
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
 
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.
Thankyou for sharing your sons line of treatment really appreciate it.
 

Maya142

Moderator
Staff member
We had liquid stools with EN - up to 10 times a day when M was on Peptamen Jr. We switched formulas to Neocate and no more diarrhea.

We never had black stools on any formula - I would check with your GI about that, because black can mean upper GI bleeding.
 
We had liquid stools with EN - up to 10 times a day when M was on Peptamen Jr. We switched formulas to Neocate and no more diarrhea.

We never had black stools on any formula - I would check with your GI about that, because black can mean upper GI bleeding.
Thanks my daughter is on Nutricia. Waiting for the GI to revert.
 
Has anyone tried faecal transplant? Is that a cure?
While there are some promising multi-center FMT studies being done in Australia, these are more for UC than CD at this point as previous studies have suggested UC responds better. Watch this space though!
 

my little penguin

Moderator
Staff member
Wow
Definitely let the GI know
Typically kids maintain there weight or increase their weight
Is she drinking enough formula ?
She may need to drink more
 
I'm also surprised by the weight loss. It could be that she's not absorbing the formula well and might need a more broken-down formula. You said that she's drinking a Nutricia formula, but do you know which one in particular? Nutricia makes many different types of formula.
 
I'm also surprised by the weight loss. It could be that she's not absorbing the formula well and might need a more broken-down formula. You said that she's drinking a Nutricia formula, but do you know which one in particular? Nutricia makes many different types of formula.
Yes its Fortisip
 
Hi, sorry late to this thread.

My girl was dx at 3 but is 8 now. So not a teen.
However, Grace 5 years later still drinks her formula. Just not full time.
But when shes in a gi flare she needs MORE then the suggested amount of formula.
Example (remember she's younger and the amount varies per kid)
Normal amount for Grace would be about
1700 ml. of formula
During flares
2200ml to 2400 ml.

So that's a 500-700 difference.
That amount is full formula and no additional food.

Big difference for her but it keeps the weight on.
 

my little penguin

Moderator
Staff member
Fortips is polymeric formula I believe
Not semi elemental or even elemental

I would definitely talk to the doc
See if they have semi elemental or elemental type she can try
 

Maya142

Moderator
Staff member
How many calories is she getting? She may need more than a typical kid her age. I would definitely let the GI and nutritionist/dietician know (if you're seeing one). My daughter's nutritionist was surprised at how many calories she needed to gain weight - she needed more than expected.

I would also ask about a semi-elemental formula - something like Peptamen Jr.
 
Hi, sorry late to this thread.

My girl was dx at 3 but is 8 now. So not a teen.
However, Grace 5 years later still drinks her formula. Just not full time.
But when shes in a gi flare she needs MORE then the suggested amount of formula.
Example (remember she's younger and the amount varies per kid)
Normal amount for Grace would be about
1700 ml. of formula
During flares
2200ml to 2400 ml.

So that's a 500-700 difference.
That amount is full formula and no additional food.

Big difference for her but it keeps the weight on.
Thankyou! Yes i spoke to the nutritionist and she asked to increase her intake from 7 bottles to 8. She thinks that because of the inflammation she needs more. But now i am monitoring her weight more closely .
 
How many calories is she getting? She may need more than a typical kid her age. I would definitely let the GI and nutritionist/dietician know (if you're seeing one). My daughter's nutritionist was surprised at how many calories she needed to gain weight - she needed more than expected.

I would also ask about a semi-elemental formula - something like Peptamen Jr.
I am not sure if of the calories, i would need to take a look. The doctors and IBD nurses are asking us to be patient and give it one more week with the EEN.
What is the recommended calrofic intake? Her heart rate is definitely very high - resting heart rate is at 101 :(
 
How many calories is she getting? She may need more than a typical kid her age. I would definitely let the GI and nutritionist/dietician know (if you're seeing one). My daughter's nutritionist was surprised at how many calories she needed to gain weight - she needed more than expected.

I would also ask about a semi-elemental formula - something like Peptamen Jr.
Thank you, i am not sure if this formula is available in Melbourne. Anyway we have been asked to hold and be patient and wait with the EEN.
 
Dears,
Its been 2 weeks since my daughter has been on EEN - Nutiritia Fortisip and finally she is feeling much better. No cramps. She is able to drink 8 bottles per day.
Praying everyday for her.
 
Dear All,
We have completed almost 5 weeks of EEN and my daughter is feeling like her normal self.
Thanks everyone for all your feedback, its been truly amazing to be in this forum.
What are the foods you started when your kids was coming off EEN?

regards,
 

my little penguin

Moderator
Staff member
Een is typically 6-8 weeks
We were told start with liquids first (broth ) few days
Then mashed potatoes /bananas soft things
Scrambled eggs
They plain white rice
Finally plain boiled chicken
 
Een is typically 6-8 weeks
We were told start with liquids first (broth ) few days
Then mashed potatoes /bananas soft things
Scrambled eggs
They plain white rice
Finally plain boiled chicken
Thats awesome thanks. These are great ideas. We got an exhaustive food test done for her - IgG and comes out that she is quite reactive to eggs. :(
Boiled chicken - is a great idea. I will try these. Have you tried fish?
 

my little penguin

Moderator
Staff member
IgG is NOT valid for food allergies
Everyone makes IgG
Its IgE that causes life threatening reactions to foods

http://www.kidswithfoodallergies.org/page/diagnosing-a-food-allergy.aspx


15 Unproven Methods of Food Allergy Tests

The following is a brief description of 15 common types of alternative food allergy tests that you should avoid:

ALCAT, ELISA, ACT and NuTron Tests. Each of these tests study changes to white blood cells that take allegedly take place in the presence of certain allergens. None of these delivers reliable results and do not have anything to do with detection of food allergies.

There is zero scientific evidence to support using these tests for the diagnosis of food allergies.

Applied Kinesiology or NAET Test (Nambudripad’s Allergy Elimination Technique). The idea behind kinesiology, or NAET testing, is that some foods can weaken your body by “blocking your energy fields.” These are not identical techniques, but in general, the practitioner tests changes in muscle strength in various ways while holding an allergen. For example, the practitioner might have the patient hold a container of milk in their left hand while the practitioner tests the strength of the patient’s right arm. Muscle weakness is thought to signal an allergy to the substance being tested.

Practitioners then perform their “treatment” after identifying which allergens may be causing symptoms through invalidated and potentially dangerous methods.

Basophil/Leukocyte Histamine Release Test. These tests measure whether certain blood cells are “activated," as is seen in an allergic reaction. A blood cell is exposed to specific food allergens, and, depending on the type of test, researchers evaluate changes to the cells or histamine that is released from a blood sample when it is exposed to specific food allergens. The results of these tests can be difficult to interpret. Although these tests are being studied to diagnose clinically relevant food allergy, these remain experimental at this time.

Cytotoxic Assay Tests. In this test, a blood sample is spun in a centrifuge (a lab instrument that separates substances of different densities) and then placed on a slide. The separated blood is exposed to different types of allergens. The blood is then looked at under a microscope after 10 minutes, 20 minutes, two hours and four hours to see if the cells change in shape. According to those who use this test, if the cells disappear, this indicates an allergy or sensitivity to the allergen. There is no scientific evidence to support cytotoxic testing for the diagnosis of food allergies.

Electrodermal Test. In electrodermal testing, the skin is tested with various electrical currents and machinery resulting in a list of items to which you may be (reportedly) allergic or sensitive. There is no scientific evidence to support electrodermal testing for the diagnosis of food allergies.

IgG Testing. In IgG testing, the blood is tested for IgG antibodies instead of being tested for IgE antibodies (i.e., the antibodies typically associated with food allergies). The existence of serum IgG antibodies towards particular foods is claimed by many practitioners as a tool to diagnose food allergy or intolerance. The problem with this is that IgG is a “memory antibody.” IgG signifies exposure to a food, not allergy to a food. Since a normal immune system should make IgG antibodies to foreign proteins, a positive IgG test to a food is a sign of a normal immune system. In fact, a positive result can actually indicate tolerance for the food, not intolerance. There is no scientific evidence to support IgG testing for the diagnosis of food allergies.

Patch Test. In patch testing, the allergen is taped to the person’s back for 48 hours. The skin is then examined 72 and 96 hours after the patch is removed. Patch testing is used mainly for the diagnosis of contact dermatitis and delayed onset allergic reactions. The test has a very limited role in evaluating the impact of foods in eczema and eosinophilic esophagitis. The tests have not been standardized or validated for foods. The results are often quite variable (even for the same person over time), with a low predictive value. There is no scientific evidence to support patch testing for the diagnosis of immediate onset IgE-mediated food allergies.

Provocation/Neutralization Test. In these tests, a small amount of the test substance is injected under the skin or placed under the tongue in an attempt to provoke symptoms. If symptoms do develop, then a larger dose is given, which will supposedly neutralize the first dose. Provocation/neutralization tests are used for vague, subjective complaints, such as fatigue and headaches. There is absolutely no role for this in food allergy testing, as it is not safe.

Reacting to the first dose could certainly indicate an allergy. This is true especially if the allergen was placed under the tongue. This would, in effect be an oral food challenge. However, the larger dose would likely make the reaction worse, not neutralize it. There is no scientific evidence to support this test for the diagnosis of food allergies.

Skin End-Point Titration Test. This is a form of intradermal testing. Increasing amounts of a diluted allergen solution are injected under the skin until a reaction occurs. For environmental allergies, the amount of allergen required to provoke the reaction is considered the “threshold” dose. This threshold dose is at which immunotherapy would be recommended. However, this test is not valid, particularly for food allergies, and often causes a lot of false positives and skin irritant reactions. Intradermal testing for food allergies should be avoided due to the potential to cause an allergic reaction.

Lymphocyte Stimulation Test. This is a laboratory test for the identification of allergy to a specific drug.

Facial Thermography Test. This is a non-invasive method to study the effects of antihistamine on the skin of the nose.


From
http://www.kidswithfoodallergies.org/page/unproven-methods-food-allergy-tests.aspx


Ds was dx with life threatening food allergies at age 4 to tree nuts and later fish
These are IgE food allergies
Which can cause anaphylaxis


Ds currently has ivig infusions as part of his treatment for Crohns /arthritis/Sweets Syndrome
Basically they infuse up to 10000 other people IgG antibodies
Every 4 weeks into his system
 

my little penguin

Moderator
Staff member
Oh they also don't recommend random food allergy testing to large panels of food for IgE allergies either
Both blood tests and skin tests for IgE food allergies have a 50% false positive

This changed since DS was little
They did large panels back then
Ds tests IgE positive to
Wheat /corn/barley /oats/soy/rice /peanuts and tree nuts

I am sure there were a few others
But is only truly Allergic to tree nuts and fish

The others his body confused with similar protein structures for grass and tree pollens which he is highly allergic to

The other foods he eats with no issue what so ever
 
IgG is NOT valid for food allergies
Everyone makes IgG
Its IgE that causes life threatening reactions to foods

http://www.kidswithfoodallergies.org/page/diagnosing-a-food-allergy.aspx






From
http://www.kidswithfoodallergies.org/page/unproven-methods-food-allergy-tests.aspx


Ds was dx with life threatening food allergies at age 4 to tree nuts and later fish
These are IgE food allergies
Which can cause anaphylaxis


Ds currently has ivig infusions as part of his treatment for Crohns /arthritis/Sweets Syndrome
Basically they infuse up to 10000 other people IgG antibodies
Every 4 weeks into his system
This is quite enlightening. Thanks very much. The naturopath who we consulted advised this test. And there were a bunch of food that came up as to be avoided. Is there any over the counter food allergy test which is reliable?
 

my little penguin

Moderator
Staff member
Naturopathic doctors do not dx food allergies
You need to see a board certified pediatric allergist
They can do proper blood tests and skin prick tests
Which combined with the right patient history will confirm a food allergy

Just like over the counter tests can't dx Crohns
You need a gastroenterologist for Crohns
You need an allergist to confirm allergies
 
Dear all,
today we start on azathioprine - 75mg...still on the 6th week of EEN and progress has been good so far.
Any things I should watch out for? All suggestions are welcome
 

my little penguin

Moderator
Staff member
With azathey should be doing weekly blood work
For the first month I believe
Then every two weeks
Then once a month
Etc...
They have to watch liver numbers very closely

Good luck
 

Maya142

Moderator
Staff member
We had some nausea when first starting, but it went away over time. My daughter just restarted Imuran and we are doing weekly bloodwork for a month.
 
Thanks for the update. I don't have experience with azathioprine, but I'm glad to hear that EEN has gone well, and I hope that aza works well for her.
 
My 8 year old had been on Imuran for a couple years now.
No side effects. She uses this drug in combination with remicade.
 
What beautiful support and information you got on this forum! I am so glad to hear that your daughter is doing well now. May it continue!

Just wanted to give you some encouragement re Imuran: my two kids have been on and off for years and never had any side effects, thank Gd!

Hope your daughter continues to improve.
 

Maya142

Moderator
Staff member
I wanted to add - someone on here once told us increase my daughter's Imuran dose slowly - we had been trying to increase the dose and had been failing because every time we did, she would become very nauseous.

So we increased it in smaller increments - 12.5 mg instead of 25 mg. That worked well and kept her from becoming too nauseous.

She recently re-started Imuran and since she has gained weight, she is on 125 mg. We increased the dose slowly over several weeks and she has had NO nausea at all. No other side effects (yet).
 
Thanks so much for all your advice! I am just a habitual worrier. :(
Have you had to do any additional vaccinations?
My other kid (8 year old son )i s being advised to take chicken pox booster and both me and my husband are being advised to take whooping cough vaccinations.
 
Last edited:
What beautiful support and information you got on this forum! I am so glad to hear that your daughter is doing well now. May it continue!

Just wanted to give you some encouragement re Imuran: my two kids have been on and off for years and never had any side effects, thank Gd!

Hope your daughter continues to improve.
How are you managing your kids' diet. Are you using any site? Any particular foods you are avoiding or giving more of?
 
Dear All,

Hope you all have had a great start to 2018. Just wanted to share some updates on my daughter.
She is now on 5-mg of azathioprine + 50mg of alpurinol.
We also weaned the EEN and now are into all solids food. All homemade nothing from outside.
I also engineer in lots of ginger and turmeric into her diet.

Question to parents with daughters - do the number of stools increase during cycles?
I am noticing this the first time. Day 2 of period - number of toilet visits - 5.

Should i call the doctor/ IBD nurse?
Regards,
a worried mum.
 

Maya142

Moderator
Staff member
Yes, my daughter always has diarrhea/more stools when she has her period. It's pretty common, even for women without IBD. I wouldn't worry too much, as long as she goes back to her baseline when her period is over.
 

crohnsinct

Well-known member
YES DEFINITELY! So much so that when my daughter is flaring she tells me to hold the phone because it could be her period:ylol:
 
I personally couldn’t stand how much worse my symptoms got when on my period and my gyno and gastro doctors both said that being on continuous birth control was completely safe and would eliminate periods completely! I’ve been doing that for about 3 years now (I’m 19) and it’s so amazing! If she can take birth control I highly recommend it! It has definitely changed my life for the better! Dealing with IBD is killer on its own and just completely sucks when also on your period!
 
Dears , Reaching out to this amazing supportive group to understand if your children have been on 6MP and how they went with that.
My daughter recently switched from Azathioprine (she is a supposed shunter) to 6MP(50mg) + Allpeurinol.
She has started getting heavy nausea every night and threw up twice last night.
Did you child go through this , any remedies for the nausea?
The nausea is the most at night starting from 8pm (around dinner).
 
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