4 YO with suspected Crohn's, living in Malaysia, desperate for some help

Hi, everyone. Apologies in advance for the War and Peace length of this post.

We moved to Malaysia in September from the US. I am American, husband is Australian.

My daughter Olivia (now four) has been a pretty healthy child. No food allergies, no major illnesses, a pretty happy kid. She started experiencing increasingly severe and frequent stomach pains at the beginning of May. It started out as occasional "mom, my tummy kind of hurts", progressed to frequent "Owwwww! My tummy HURTS!" and then settled in as a constant baseline discomfort with serious flares of pain (tears, moaning, shaking), both at random times unrelated to meals and somewhat predictably after eating and while she tried to sleep.

The pain had progressed to the point where she was unable to sleep, didn't want to play with friends, and couldn't finish a meal without having a pain flare (of the variety where she would point to the most unhappy face on the pain scale). No diarrhea, no constipation (though she had some when she was younger, managed by upping dietary fiber), no vomiting.

Her paternal grandmother has gluten sensitivity (though not true Celiac) and fructose malabsorbtion, and describes having had identical symptoms as a child. After the third ER visit, I started asking (demanding!) for testing. The doctors at the recommended, modern, popular-with-the-expatriate-and-medical-tourist crowd hospital (Prince Court Hospital) in Kuala Lumpur alternately advised us that the pain was from "colic" (and prescribed a medication that is limited to veterinary use only in some countries) or that we needed to "change her formula" (because here, many four year olds still drink formula) or that we should "just see how she goes on pro-biotics/lactose-free milk/Tylenol/etc."

After much gnashing of teeth and stamping of feet, a gluten panel was run, and ultimately came back negative. The requesting gastroenterologist did not request the full panel of celiac labs, as noted by the lab itself. Negligence, but probably not of any consequence given later developments. The dietician that we were sent to was hopelessly ill-informed. Ultimately, we were told "she's faking it" by several doctors (including her primary pediatrician) and pretty much written off as being crazy Western parents.

I tried giving her a gluten free, fructose free, FODmap compliant diet. No change initially, but after one last acute episode that landed us in a different ER, her pain seemed to stabilize a bit. I don't know if the diet changes had any part of that or if Olivia had just accepted the pain.

As a result of the "she's faking it" comment, we consulted with one of the only pediatric gastroenterologists in the country (and head of the pediatric department at the University of Malaysia). The night before her appointment with him, she passed some blood in her stool for the first time (that we noticed). We also switched her care to one of the older private Malaysian hospitals (Subang Jaya Medical Center), which is quite far away from our home. Within a day of seeing the new pediatric gastro and within hours of seeing a new pediatrician, her case was deemed urgent and she was admitted to SJMC. The following day had an endoscopy and colonoscopy. The pediatric gastro at UM was unable to do the procedure because *all of the endoscopy equipment had been stolen from the hospital the weekend before* :ybatty: so another gastro at SJMC did the actual procedure.

While the endoscopy was negative (i.e., no Celiac/gluten issue), the colonoscopy revealed that she had one of the largest cecal ulcers the operating gastroenterologist had ever seen on a four year old, and diffuse patchy inflammation. Bacterial testing was negative. A confab between the pediatric gastro, the operating gastro, and the new pediatrician lead to a diagnosis of Crohn's disease.

I really want to talk to SOMEONE about the diagnosis, our treatment options, and her long term prognosis. We like the new team of doctors that we are using. They seemed to immediately recognize that Olivia was in dire need of more aggressive treatment. However, we are feeling pretty gun-shy given (a) the fact that our concerns were not adequately addressed (or even completely dismissed) for nearly two months at the old hospital, and requested tests were not run or mis-characterized as "not done" in Malaysia, even as Olivia's condition grew worse, she lost weight, and she started passing blood; and (b) Crohn's is not a very common ailment in this part of the world, and the pediatric gastroenterologist admitted he typically sees fewer than a dozen cases a year, even as a specialist.

I need help. I had researched and prepared myself for putting her on a gluten free, fructose free, FODmap compliant diet. I was ready to go in all "Warrior Mom" style on that. Now, we have suddenly changed course. I have only dipped my toe into the IBD world, but I already feel defeated. And tired. So very, very tired. I also have a younger daughter who also needs her mom. And I am still trying to cope with raising kids in Malaysia. There are just so many things here that are shockingly unpredictable, the least of which is regular access to functioning telecommunication services, the most pressing of which is what seems to be a schizophrenic health care system which I don't know how to navigate and truly don't know whether to trust.

Argh. Any advice/direction/recommendations at this point would be appreciated. I know better than to randomly trust unknown internet acquaintances for medical advice without doing due diligence, but I just don't know what to do at this point.

Thanks so very, very much.

Merida

Hi Merida and :welcome:

I am so very sorry to hear about your little girl and the health system you now find yourself in...:hug: The first thing I would have to ask is if there is any chance of going back to the US or onto Australia for initial assessment and treatment and then back to Malaysia once she is stabilised?

Are you confident in the diagnosis that has been given?

Given that they are correct what is their suggested plan of action?

I would recommend going onto Enteral Nutrition (EN) as an initial treatment, although it may be difficult given her age, compliance wise, and I don't know what supplies they have in Malaysia. Failing that the other treatment path would be to knock the inflammation on the head fast using a steroid and then a long term maintenance medication. Please have a browse though the EN and Diet forum and also the Treatment forum will expalin the meds that are used. The wiki also has loads of fab information with links to threads that discuss the relevant topic...

http://www.crohnsforum.com/forumdisplay.php?f=56

My heart goes out to you Mum having to navigate this disease in a country you are unfamiliar with. Please don't hesitate to ask more questions so that we may be able to help you through this heartbreaking time.

Dusty. xxx

Hello,

Firstly, I am so sorrry to hear that you daughter has been so unwell, and the doctors are diagnosing Crohn's.

I think you have done so well, to navigate through the health care system in a foreign country, I feel so sad you have had so many diffculties.

I imagine you are away from close family/friends. It is the hardest thing to see your little child in so much pain, and not be able to make it all better.

I hope that it won't be long and your doctors will get your daughter feeling better.

I can't give you any advice on treatments and prognosis. I would recommend reading up on Crohns, going prepared with lots of questions (written down) for your doctors, looking after yourself - (it is a very stressful time and I know you have another child too), and staying hopeful - there are lots of people getting on with life depsite crohn's.

My son is 6 years old and has crohn's. His started when he was 5 years old with perianal issues. He is currently quite well, with only minor problems.

Let us know how you are going, and how Olivia is doing.

Thinking of you,


LilyRose

Welcome - sorry to hear about your daugther's diagnosis. It is hard when they are so young, my son is 13 and it is bad enough.
As Dusty said the EN would be the best way to go at first if they have that in Malaysia. It would give her bowel a rest, heal inflammation and give her the nutrition she needs. My son had exclusive EN for 8 weeks and managed to get another 4 months med free from that.
If it's any consolation it took me 18 months to get my son diagnosed in the UK! We went the full frustrating rounds of GP and paediatrician telling me it's probably tummy migraines or "you just have to live with a sore stomach". The paed has actually apologised to me now though - said he would never assume again!
If you are happy with the docs then stick with them. It was good that at least he admitted not treating alot of kids with Crohns. Why don't you go onto some of the info pages here and print some stuff off for him so that he can read up on some of the treatments. Good luck!

I'm so sorry that your little one has been diagnosed with Crohns :ghug: It's hard enough to come to terms with the diagnosis but I'm sorry you have the additional concerns of the medical systems and treatment there.

I can't add to the advice you've been given but also encourage you to read up on EN (Enteral nutrition). It has comparable success rates at inducing remission as steroids, is a safe treatment with no side effects and will provide nutrition. In Canada, Europe and in many other countries, it is often the first treatment for children.

And, as suggested above, please feel free to ask lots of questions! I know you'll find the members/parents here are very knowledgeable and supportive.

Good luck! :ghug:

:welcome:

So sorry to hear that your daughter has been unwell but I am glad you have found the forum. You have already gotten some great advice on treatments so I just wanted to add that it took us a while to get my son diagnosed too. We were initially told that he just needed more fiber in his diet, even though he was presenting with diarrhea. We tried adding a high fiber cereal every morning as per the doctor's instructions and WHAM, it made him ridiculously sick. Once he lost 17 lbs in 2 months they started to take it more seriously. I think you will find that it is quite common for a diagnosis to take a long time with this frustrating disease.

I completely understand feeling tired and defeated. It took me a good few months to start to feel a bit normal again. I still have moments where I feel a bit defeated or down but I am happy to say those moments are getting fewer and farther between and I am able to recover from them more quickly. I think it takes time to come to terms with it all and find a way to cope with everything. Hang in there it does get better.

BTW. I spent some time in Malaysia years ago and loved it. What I wouldn't give to have some roti canai with my morning coffee right now...

Merida,

Hi and welcome to the forum. I am so sorry for the situation you find yourself in. It must be very difficult but I can tell you from my experience the parents here are a wonderful resource of information and support. Please do not hesitate to call on them/us whenever you need.

It is good that you like the team you currently have and that they admit little experience. I too recommend that you print stuff from here and the CCFA site and bring it to them. Make them your partners. I hope that together you can sort this out.

I also second the use of Enteral Nutrition. My daughter (also Olivia) has seen some great results from it.

How long are you in Malaysia? Any plans to visit the states again? If so, I would start calling now and get yourself an appointment at one of the renowned IBD centers for peace of mind.

Good Luck and keep us posted.

Hi Merida

I am so sorry to hear about Olivia's diagnosis. My daughter Lucy (almost 4 ) has been living with Chroms diagnosis since she was 2 so I completely understand what you are going through at the moment. Also well done you for pushing for and getting answers. You have had some good advice regarding treatments. It is important that you trust your GI and if you dont trust the current doc - see if you can get another or as somebody suggested go home to Us or Oz for a second opinion. did they take a biopsy of the colon during the colonoscopy because if there was inflamation due to chrons you should get a definitive diagnosis from that.(I think - I am open to correction) I am quite new on here but I have to say the moms and some dads! are great and have a wealth of knowledge and experience so check in as much as you can.

I wish you and olivia the best.

Hi and welcome Merida,
So sorry you had to find us but glad you did. I have heard that the medical care in Malaysia is a problem and that a lot of US citizens return here for their care. Is there any way you could come back to the states and see someone here at least until you get her stable? I also recommend you go to the treatment section of the forum and look at some of the treatments. I highly recommend starting with enteral nutrition as first line treatment and then looking at LDN as next line of treatment. Good Luck and keep us posted!

Hello again, and thank you SO MUCH to all of you that have taken the time to read my really long (sorry again) intro and share their wisdom and experience.

I am now really wondering if the diagnosis *is* correct. She has had increasingly severe abdominal pain and has presented with the ulcer and inflammation. However...she has had no constipation ("complication", as she calls it), and no diarrhea (save for some that was precipitated by taking the rubbish "colic" medicine that was prescribed for her). She has had a single incidence of obvious blood in her stool. Several stool samples were evaluated at the old hospital for the presence of roto and norovirus and occult blood, none came back positive for blood. I know that our younger daughter has on rare occasion had blood in her stool after having a "forceful" bowel movement, and initially, I wondered if this was the case for Olivia.

There doesn't appear to be any perianal involvement. She lost a kilo over the last month, but that has come back. Shas always been a skinny minnie, her but her weight and height have always remained on-curve. Liver function tests have come back (repeatedly) normal. Ultrasound (albeit at the rubbish hospital) exam came back with nothing remarkable. The path results indicate that "There is minimal distortion of the glands and the crypt architecture is deformed, with evidence of regenerative activity." Would this happen in true Crohn's without EN or meds?

I *know* that a patient doesn't have to present with every symptom for the diagnosis to be accurate, but I am now quite nervous about the diagnosis. I am having my husband review his employment contract to see what the procedure is and what the requirements are to have her qualify for a "medical evacuation" to get her back to the US for a proper diagnosis. I don't want to embark on treatments (either course being quite onerous for a four year old) if we are not treating the right disease.

Thanks again,

M

Hi, I know what it's like to question the diagnosis! My son had nothing apart from a sore stomach - and even then it came and went. He had no constipation, no diarrhea, no blood, his weight was fine (if a little overweight). It came as a big shock to hear he has Crohns. In fact I had always hoped they were wrong (as do we all I'm sure) until he got a peri-anal abcess/fistula this year. Finally convinced me it was the right diagnosis. :voodoo:
These meds are quite strong apart from the EN so if it puts your mind at rest - it's best to get a second opinion I think

Sascot,

Thanks. I was just thinking "Welcome to denial, party of one!"

Olivia's old pediatrician in the US has agreed to help us out and set us up with someone (probably affiliated with the Children's Center for Digestive Health, at Advocate Lutheran General hospital in Illinois) and shepherd us through the process. Also discovered that the father of one of my neighbors here in KL is quite the expert in the field in Norway. Although he has retired, our neighbor is going to see if her dad can assist. Baby steps, right?

M

Sounds like you have some good knowledgable people in your corner and you are taking those first baby steps...just keep walking mama! Good luck and we are all here if you need us!

I hope you booked a large room for the denial party! :lol:

It is so good to hear that things are starting to fall into place.

Good luck and keep us posted!

Dusty. xxx

Hi there,

Just checking on how things are going for you.

Take care,
LilyRose

Let's see...

Olivia had the barium test today, which came back totally unremarkable. The radiologist showed me the length of the cecum, where the ulcer was, and didn't see anything out of the ordinary.

I have been conferring with Olivia's old pediatrician back in the US, who has brought in a pediatric gastro doc on her end. He has asked for a bunch of additional tests to be done, including some blood work that was actually done at the time of her scoping and came back unremarkable but not noted in the files that I sent him, and a more detailed fecal exam. This includes a parasite and ova exam (there was one done at the prior rubbish hospital, and I don't necessarily put any stock in those findings); a stool bacterial culture including checking for yersinia; and checking stool for C. Diff toxin. Any thoughts on the value of these given that she has already been scoped?

Between the comments from the US ped and ped gastro, the local ped gastro, and the new pediatrician, I get the feeling that even the docs aren't certain that we are really looking at Crohn's.

In the meantime, the poor kid has been dxed with a UTI at the rubbish hospital. It was just too hard to get her to the new hospital on Saturday night. The idiot ER doc tried to prescribe some novel antibiotic that I wasn't happy with and I made him rewrite the scrip for something that is tried and true. And he was more interested in b*tching about how long he had been on duty than giving me the details of the urinalysis. Sooooo...I had the new pediatrician re-run the urine tests today after her barium x-rays. Waiting on results.

Gah. I think I need to get myself tested for anemia. I am too exhausted.

For work I have some corporate travel policies. One of our clients become ill in Mayalasia on the advise of the company he was working for he flew to Singpore for treatment. He was told that it was common practice to go to Singapore for medical treatment.

Merida said:

...

I have been conferring with Olivia's old pediatrician back in the US, who has brought in a pediatric gastro doc on her end. He has asked for a bunch of additional tests to be done, including some blood work that was actually done at the time of her scoping and came back unremarkable but not noted in the files that I sent him, and a more detailed fecal exam. This includes a parasite and ova exam (there was one done at the prior rubbish hospital, and I don't necessarily put any stock in those findings); a stool bacterial culture including checking for yersinia; and checking stool for C. Diff toxin. Any thoughts on the value of these given that she has already been scoped?
...

Click to expand...

The blood and stool tests are noninvasive so I think they are of value ... you want to properly rule out any pathogen that could be causing this. Good luck!

Query: can IBD go into remission without treatment?

I'm not sure that it could be called 'remission', however, there are many people who have had symptoms come and go. My son began to show very mild symptoms in December, quickly went away with no intervention at all in just a few days (he only casually mentioned in passing that he thought he had a bit of a stomach bug) and then symptoms didn't come back until March and were then off and on until May (although each 'on' period was progressively worse). And, once the symptoms returned March to May (diagnosis), I think the longest period that he felt fine was 2 weeks.

Hey, if I were to post the two paragraphs from Olivia's colonoscopy describing the ulcer and the inflammation, could someone help me decipher them? I think they contain summaries from the pathologist's review of the biopsies, but not his findings verbatim. I think the conclusion is worded something like "consider a diagnosis of Crohn's disease". It didn't read at all like a definitive differential dx to me.

Sorry, I am working off my iPad as we have a guest staying with us and sleeping in the office/spare bedroom where the desktop is, and I can't have both my browser and the PDF of the report open on the screen....

Hi Merida,

I'm so glad you found your way here. My heart goes out to your daughter and entire family

I'm pleased to see they've added testing for yersinia which I was going to recommend as Yersinia is pretty prevalent there and can mimic Crohn's. I'm not familiar with its occurrence in Malaysia (my GUESS is high), but intestinal tuberculosis can also mimic Crohn's Disease so you may want to discuss that idea with your doctors.

Yes, we'd be happy to help decipher the reports for you.

Hi Merida,
Terribly sorry to hear about your Olivia, I also have a 4 year old daughter.
I'm not quite as familiar with all the specifics of genetic testing as some here are, but I know when I was first diagnosed, my doctor sent samples to a genetic testing place called Prometheus I believe. They can determine for sure if you have Crohn's or not, perhaps there are similar genetic testing facilities in Australia? If not, I'm sure you can request to have samples sent to the states for testing.

Hope you get some answers soon!

Hi and a late welcome.

My Grace is 3 yrs old and a true farm girl. She has had problems since 6mo. old. and much like your little one her stool was NEVER really an issues.... till lately. I hope you get answers soon. Remember you might be living in "denial land" but I founded the place. lol
Your always welcome to pm me if you wish. It's nice to know (in a sad way) that their's others with kids so young going through this.

Farmwife

Ok, so here is the relevant portion of the histopathology report:

Cecal ulcer biopsy.

Sections show fragments large bowel mucosa and underlying lamina propria. The sections also confirm that the tissue is obtained from the edge of an ulcer, which is composed of granulation tissue, dialted [sic] capillaries and immature vascular channels, and a moderate infiltrate of plasma cells and lymphocytes. A sprinkling of polymorphs and eosinophils are seen in the fibrotic lamina propria. There is alteration and distortion of the crypt architecture. The underlying muscularis mucosa is not seen. Granulomata/organisms are not seen.

Recto sigmoid biopsy.

Sections show a small piece of large bowel tissue composed of mucosa, lamina propria and underlying mucosa. A moderate infiltrate of plasma cells, lymphocytes and few scattered polymorphs and eosinophils are seen in the edematous lamina propria. There is minimal distortion of the glands and the crypt architecture is deformed, with evidence of regenerative activity observed. A lymphoid follicle is seen in the underlying muscularis mucosa. There is no evidence of granuloma, dysplasia or neoplasia.

Final Anatomical Diagnosis

Acute on chronic inflammation with chronic cecal ulceration. Inflammatory bowel disease should be considered.

Click to expand...

Olivia finally had her post barium study "Casper the friendly ghost" poop this morning. She seemed inordinately excited to see it :dance:. I don't know if the following two items are related or not, but she (a) had a tiny bit of blood on the tissue when I did the "safety wipe" (she said that she had to strain to have the BM oo; and

(b) she had a transient pain episode in the car on the way to school that she classified as being "medium bad" as opposed to "the worst, baddest bad" (of the degree that leaves her screaming, shaking, and pale).

On a side note, I don't know if the rubbish hospital's dx of a urinary tract infection is accurate (we are continuing the course of antibiotics, natch). She is still having frequency and urgency, but no typical UTI pain. I need to follow up with the new pediatrician to see what the second set of labs say. I also DEFINITELY want to get her checked for intestinal TB. TB is pretty rampant here, and I had a scary moment back in November when she (and her sister) had been repeatedly exposed to someone in our building that *possibly* contracted pulmonary TB.

I also want to have a more complete fecal study done - would that catch stuff that wouldn't have been apparent when she was biopsied post-bowel prep?

I know my way around the female reproductive system, in particular, congenital uterine anomalies. Heck, I am a moderator on a Yahoo board for women with uterine anomalies, and counsel them regularly through testing, fertility treatments, and dealing with pregnancy losses resulting from their uterine defects. I can read uterine ultrasounds, MRIs, and HSGs better than many ultrasound and radiology techs (at least that's what the docs and techs have told me...) But this stuff...this stuff has my brain twisted up in so many knots that all I want to do is this: :angry-banghead:

Thanks again for all of your help,

M

Hi there. Sorry your baby is sick You should try her on the SCD diet. I started it 2 months ago and am now symptom free Was in full flare of Crohn's disease and after 8 days I could eat again. After 11 years of torture and steroids and surgeries (including ostomy) I finally found the only medicine I need, the right foods! Here is a legal/illegal food list. i would read the entire site including intro diet and beginners. You dont need to buy the book, the site tells enough and there are SO MANY recipe blogs out there.
http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm

Good luck to you. I hope your baby is one of the lucky ones this diet works for

Snoflayk, how long after ingesting an illegal food would there be noticeable effects? I have my daughter on a gluten free, FODMAP-ish diet. Obviously, while there is some overlap, there are products that are illegal on the SCD diet that are ok on the gluten free, FODMAP diet. For example, how soon after ingesting say...corn...or buckwheat pasta... would there be problems?

Please keep in mind I'm still learning about the microscopic features of Crohn's Disease AND I'm not familiar with what other diseases can cause many of these findings. If anyone disagrees with what I say, please, as always, speak up!

Cecal ulcer biopsy.

Sections show fragments large bowel mucosa and underlying lamina propria. The sections also confirm that the tissue is obtained from the edge of an ulcer, which is composed of granulation tissue, dialted [sic] capillaries and immature vascular channels, and a moderate infiltrate of plasma cells and lymphocytes. A sprinkling of polymorphs and eosinophils are seen in the fibrotic lamina propria. There is alteration and distortion of the crypt architecture. The underlying muscularis mucosa is not seen. Granulomata/organisms are not seen.

Recto sigmoid biopsy.

Sections show a small piece of large bowel tissue composed of mucosa, lamina propria and underlying mucosa. A moderate infiltrate of plasma cells, lymphocytes and few scattered polymorphs and eosinophils are seen in the edematous lamina propria. There is minimal distortion of the glands and the crypt architecture is deformed, with evidence of regenerative activity observed. A lymphoid follicle is seen in the underlying muscularis mucosa. There is no evidence of granuloma, dysplasia or neoplasia.

Final Anatomical Diagnosis

Acute on chronic inflammation with chronic cecal ulceration. Inflammatory bowel disease should be considered.

Click to expand...

They're saying that there are signs that she has had inflammation/ulceration for quite awhile, and there is active inflammation/ulceration as well. Now, how long it has been present is anyone's guess, but this does bring up a concern that she had this before you moved to Malaysia which may lessen (but certainly not rule out) the chance that this is infectious.

Findings that are often seen in Crohn's Disease:

- Ulceration
- Infiltrate of plasma cells and lymphocytes
- Alteration and distortion of the crypt architecture.
- Edematous lamina propria
- Fibrotic lamina propria

I'm unsure of:

- "Polymorphs and eosinophils are seen..."
- They mention lymphoid follicles twice. I know proliferation of lymphoid tissue is seen in some cases of Crohn's Disease but am unsure of whether this is what is meant by that, sorry

Other stuff: Some will say that granulomas are a gold standard for Crohn's Disease but they would be mistaken as 40%+ (depending on the source) of cases do not see them AND, granulomas are also seen in tuberculosis and yersiniosis. So her lack of them doesn't mean it's not Crohn's but it also may lessen the likelihood of TB or yersinia. How much, I don't know

If you were just wondering what these words mean, I apologize. Let me know and I or someone else can share what we know.

This is going to sound weird, but if she puts the sides of her pinky fingers together with her palms facing her face, are the pinky fingers bent or do they touch almost entirely to their tips?

Not much time, but wanted to post this (mostly as a note to myself to print it up when I get back to my desktop): http://www.pathology.med.umich.edu/NewFrontiers/11/files/110913044121_NewfrontiersGreensonHO.doc

Notably, method of bowel prep may affect findings. Olivia had an enema as well as some type of solution whose name I was not familiar with.

David, thanks for that. The headache inducing part of this is the path results don't seem definitive by any means. I don't know if the infectious vectors were adequately investigated - all I was told was that they were "negative", but I don't have the actual lab results to see if they actually looked for intestinal TB, etc.

BTW, pinkies touch base to tip

Oh, and Olivia had some bad constipation this am. Treated it with a glycerin suppository, which was successful. Took the sample in (complete wiith residue from the barium meal - should this be a concern given it has been three days sice the barium study?) for analysis. Drove 3/4 of the way home when the hospital called to tell me that they hadn't billed me enough for the lab work (you have to pay first here), so tomorrow, I have to drive all the way back (45+ minutes one way) to settle the bill. Not terribly joy-inducing...

I think everyone might be different in the time it takes. In my case I know the next day, about 12 to 16 hours later. I am severely broken and altered on the inside though lol. Lots of resections, scar tissue, ostomy, gastro paresis, etc... But really I am sure you will know within 24 hours.

I tried some chocolate cake and 16 hours later my intestines swelled up, blocked me and had a fun ER visit I gave up on chocolate cake lol.

I always wait 4-5 days in betweeen trying anything that has potential to flare me, that way I am super sure. Will never again try something like chocolate cake though that has so many different ingredients in it. I mean, starches, yeast, gluten, sugar.... Just not a smart thing to expiriment with I guess lol...honestly was just a weak moment =P

Sno, I like the new signature!

We have noticed in our ramp-up on the gluten free, FODMAP diet that if Liv has something that isn't permitted, that her pain flares much, much quicker. As in honey on her gluten free cereal for breakfast? Pain in the car on the way to school 15 minutes later. Which, in my admittedly limited reading, doesn't seem to be consistent with IBD flares.

Just to help put a face to the discussion. Thanks, everyone.

She is an angel!!! Absolutely gorgeous! She put a smile on my face - thanks for posting

Too CUTE! Reminds me of my Grace.
Keep her close over there!
Thanks for posting.
How has she been doing?
Farmwife

Such a doll! You might consider eliminating things like cereal for a week to see what happens. Although it says gluten free there are lots of other things in those cereals that could be contributing to her flares. I switched my 3 year old to coconut flour donuts and nut flour cookies and breads for breakfast lol. She thinks its the greatest thing ever but doesnt realize they are so good for her. Check this recipe out..

http://comfybelly.com/2010/05/coconut-flour-donuts/#.UABbd_WijOw

I have SO many more REAL gluten/grain free/sugar free recipes like this that are super kid friendly if you are interested Munching on a coconut donut now, taste very very close to the gas station packaged coconut ones hehe

Unfortunately, it would be impossible to move her off of grains entirely. I have to travel all over town just to get gluten free products. Asia doesn't have a high incidence of gut disorders, so there aren't many places (at least in Malaysia) that cater to these types of special food items. I am lucky to get a limited amount of GF products at a few places that serve expats.

Since we have moved her to GF/FODMAP, she is having far fewer incidences of pain, and far less severe pain when it happens. It is the best I can do.

Merida

Only thing I tell you regarding FODMAP diet is our personal experience. Prior to Sarah dx with crohn's we were told she had IBS. Sarah and I both started the FODMAP diet, my IBS got a lot better on the diet, my heartburn when away after I change from milk to soy milk. But Sarah's symptoms, become worse more severe pain, severe weight loss which led to further testing and a dx of crohns.

Catherine, did you also eliminate gluten?

At the worst of Olivia's pain, we noticed a direct and immediate correlation between her eating FODMAP "forbidden fruits" like apples (which, of course, she loves) and pain episodes. We truly thought that she had celiac/gluten intolerance/sugar malabsorption issues, as strict adherence to gluten free and FODMAP seemed to help with the pain within about a week to ten days of starting. It is probably just luck that a lot of the foods that we have in her diet now are low residue-ish.

The most frustrating thing is that telling someone here that you have IBD here is like telling someone in the US that you have Dengue. There is no understanding of what it entails because, again, it is pretty rare amongst Asians. Thankfully, her teachers have been very willing to "buy in" when I have talked to them about how important it is that she doesn't eat anything that I haven't sent with her.

Fodmap is not a gf diet just a low gluten diet. We removed bread, pasta ect but did not worry about traces of gluten but Sarah weight loss increased and her pain also a got worse and we stop as could not maintain her weight.

If your daughter main problem is fruit, maybe she has a problem with fructose. Have you tried cane sugar on her cereal instead of honey.

We started with entirely eliminating gluten. We then also eliminated food that wasn't FODMAP compliant. It's not easy following both sets of restrictions, but it seems to be helping. If we slip and give her regular soy sauce instead of gluten free, she feels it. Cane/table sugar, even in small amounts, also makes her tummy hurt. So, we're just limiting all added sugars to the extent that we can. Not easy in a country where *everything* is loaded in excess sugar.

Poor kid has gluten and sugar (primarily, but not limited to, fructose) problems from paternal grandmother and IBD problems from paternal grandfather.

I now get what your saying your daughter appears to have very severe fructose intolence. Table sugar is still I think 50/50 fructose/sucrose. Have you look at a condition called HFI

HFI - herediary fructose intolerance.

Before Sarah started the fodmap diet she had breath testing for fructose and lactose intolerance. She is boardline for fructose and severe for lactose.

I wouldn't recommend this testing for your little one without first ruling out HFI.

Did they do any biopsies and or reporting past the caecum and into the small bowel (ileum)?

Dusty. xxx

Meridia, :hang:
Thanks for posting the picture of olivia. She is adorable! :hug: I'm so sorry to hear of all that you are going through. Your posting brings back so many memories for me. Although no one in my family, to date, has been diagnosed with Crohn's disease, we suffer from undiagnosed gut issues. Have since childhood.

My son had a nisson fundoplication with g-tube placement when he turned two. The fruitcose malabsorbtion test was performed through the g-tube. I had asked the doc if his severe delayed gastric empting would affect the test results. I was told no. How wrong they were! After hanging around the medical facilites the required number of hours, then having the breath test etc. the pediatrician used a large syringe and pulled back on the stomach contents using the g-tube. Everything that was put into the stomach was still there. The breath test came back that the testing fluid had not even gone through his system. To date we believe he does have fruitcose intolerance/malabsorbtion issues.

I know what it is like to be a protective "Mama Bear" with the medical community. I cannot begin to tell you all the battles I have had to contend with over the years. We still do not have a diagnosis for my 19 year old son. He is doing better and is still learning to manage his health condition. I thought we were finally done with John's Hopkins Childrens Hospital. Wrong! Now my 14 yr daughter has just been diagnosed with a colon that is more than twice the size it's supposed to be. Her blood work also showed inflammation in her gut. Her gyn doc did exploratory surgery this past monday. She is forwarding her results to our GI doc at Hopkins. My daughter has been suffering on and off with pain since she was about eight or nine years old. The pain finally hit it's higest peak (or so we thought so at the time. The pain has gotten even worse over the last few weeks.) in January.

When you are too stressed to eat, drink a nutrient drink of some sort. My nutritionist is going to get me the name of one without the high fruitcose corn syrup. Long story there. You're no good to anyone if your blood sugar drops and you become worn out. If anyone knows the name of the nutrient drink without fruitcose, please post asap! My nutritionist can't remember the name and will have to wait until she comes across it in the store again.

You have a long road ahead of you. Spend time on your knees in prayer. There will be many bumps along the way. As you daughter gets older she will begin to become the expert on her condition and what works for her. Until then, stay stong, research and keep in touch with your on-line support group. Everyone is here for you. :ghug:

Be grateful for all of your blessings. That will keep you smiling. Smile as much as you can. Laugh as much as you can. It's good for the soul. Remeber, you and your daughter are people first, health condition second. I can atest to the fact that smiling and laughing will get you through some of the toughest things in life. I have a progressive condition with all sorts of bizzare symptoms that change from day to day and hour to hour and minute to minute. My motto: If I didn't laugh, I'd kill myself, so I choose to keep laughing.:soledance:

I will be praying for your whole family as you navigate the health system and deal with all of the emotions that come with being chronically ill. Remember to take a break from the illness and research and smell the roses.:rosette1:

Blessings and prayers, Naturelover

Oh, by the way, what is the FODmap?

DustyKat said:

Did they do any biopsies and or reporting past the caecum and into the small bowel (ileum)?

Click to expand...

I reviewed the video, and while they did go beyond the spot in the cecum where the ulcer was, I can't recall how far. I don't believe they took any additional biopsies past that point. Unfortunately, I gave the disc with the video on it to the consulting pediatric gastroenterologist (he couldn't do the scope himself.) We did have a barium study done to look at the small intestine, and nothing was found.

Naturelover said:

Oh, by the way, what is the FODmap?

Click to expand...

This link is probably as good as any: http://www.todaysdietitian.com/newarchives/030612p36.shtml

Sorry, gotta run, baby is up.

Well. Hi there. It's been a while.

Just wanted to update folks that were kind enough to help when I needed it most.

The short story is that Olivia is doing great.

The long story is that we ended up ditching the "new" hospital and returning to the rubbish hospital. Unfortunately, experience taught us that the overall quality of medical care here is pretty uniformly meh, and if we can't get better care at the new hospital, we might as well use the rubbish hospital that is (a) closer and (b) has better (newer, cleaner, air-conditioned) facilities.

The pediatrician that was our "white knight" and ordered the scoping ended up being frustrated by our "complicated case" daughter, and, I think, just giving up on her. I can't recall if I posted about it here or elsewhere, but he ended up prescribing her a medication that she couldn't take (Miralax) for a condition she didn't have (constipation). We decided that we would not be returning to this doc. After continuing the course of maintaining a "clean" (GF, mostly FODMAP-compliant) diet, Olivia was nearly completely asymptomatic. The only times that she experienced tummy pain (mild to moderate) was if we slipped and something either unintentionally got past us, or we tried testing out whether she could tolerate a particular item. It was like having a new child.

We ended up having an extensive phone consult with the US pediatric gastro that our US pedi had connected us with. After reviewing everything, his conclusion was that Olivia DOES NOT have Crohn's. Instead, he believes that something - either the really bad case of idiopathic gastroenteritis that Olivia had shortly after we moved here, or the repeated antibiotic treatments that she has had for various issues, or both, severely disrupted her gut flora. This led to overgrowth of bad bacteria that ferments excess gas when she eats sugars that she isn't fully digesting. This irritates her gut, causing the ulceration that we saw. The ulceration or the underlying bowel extension from the excess gas causes the pain. This effect seems to be amplified if she eats more than nominal amounts of gluten.

He theorized that she doesn't have inherent sugar malabsorption/gluten sensitivity issues, but "introduced" ones. He thinks there is a better chance than not that if we maintain a healthy diet that doesn't cause irritation (gluten, certain sugars), that ultimately, the gut flora will normalize, and she will not be so sensitive to what she can and can't eat. Even if it doesn't, we know what to do to keep her pain free 99% of the time, and it is not overly onerous.

In October, Olivia developed pneumonia, was prescribed antibiotics at out local hospital, but didn't improve. We tried giving Dr. White Knight a second chance, but he told us she didn't have pneumonia, she had the flu, and that she needed to stop the ABX immediately (despite not having finished the full course - bad, bad, BAD). Flu test was negative. No calls to doc returned. On the advice of our US pedi, we continued the ABX. Two days later, Olivia was hospitalized due to worsening breathing difficulties, scary high fever, and lethargy. She spent a few a days in the hospital on IV antibiotics - 6 hours after being put on the "high octane" stuff, she was markedly improved. She was discharged a few days later with oral ABX to finish the minimum course, and several other medications in syrup/suspension form (all loaded with artificial sweeteners).

She suffered a breathing/fever/lethargy relapse, and worse, developed excruciating tummy pain (as bad as it was during the height of it). She was readmitted, this time, so that they could do the entire course of an even stronger ABX via IV. Within a few days of discontinuing all of the oral meds, her tummy started feeling better. The pneumonia finally fully resolved.

The local pediatrician that we somehow *lucked* into being admitted under from the ERhas a background in genetic metabolic diseases, and immediately understood the oral ABX/sweetener problem. After researching the issue, he concurred with the US pediatric gastro on all counts. The apparent connection between the sweeteners and flavoring a in the oral meds and the GI issues sort of sealed it for him.

Since then? Touch wood, so far, so good. We still watch what she eats very carefully, but she is now able to tolerate small gluten exposure (e.g., incidental amounts in soy sauce) whereas initially, we had to be zealously gluten free. We have introduced some fruits that she couldn't tolerate before, but in very controlled amounts, and mindful of what other sugar sources she has consumed that day. Occasionally, we tread too far and she has minor, passing pain, but nothing like what we saw before.

So. There we are. Thanks again for the help, and, if you have made it this far, for reading this novella. Hoping that everyone has been healthy and well.

Ann

I never met you Ann but I like the way your story ends(I hope)!!

Wow what an update. I hope all contunies to go well.
If you don't mind I'm going to page in Jand and Nick . They also live where you are.
I think it would be nice for you guys to know your not the only ones there. HUGS!

I'm glad to hear she's doing well. That's wonderful Thanks for the update!

Glad to hear the update. That is great that she is managing mostly symptom free. Nice to hear good news!

Merida said:

Well. Hi there. It's been a while.

Just wanted to update folks that were kind enough to help when I needed it most.

The short story is that Olivia is doing great.

The long story is that we ended up ditching the "new" hospital and returning to the rubbish hospital. Unfortunately, experience taught us that the overall quality of medical care here is pretty uniformly meh, and if we can't get better care at the new hospital, we might as well use the rubbish hospital that is (a) closer and (b) has better (newer, cleaner, air-conditioned) facilities.

The pediatrician that was our "white knight" and ordered the scoping ended up being frustrated by our "complicated case" daughter, and, I think, just giving up on her. I can't recall if I posted about it here or elsewhere, but he ended up prescribing her a medication that she couldn't take (Miralax) for a condition she didn't have (constipation). We decided that we would not be returning to this doc. After continuing the course of maintaining a "clean" (GF, mostly FODMAP-compliant) diet, Olivia was nearly completely asymptomatic. The only times that she experienced tummy pain (mild to moderate) was if we slipped and something either unintentionally got past us, or we tried testing out whether she could tolerate a particular item. It was like having a new child.

We ended up having an extensive phone consult with the US pediatric gastro that our US pedi had connected us with. After reviewing everything, his conclusion was that Olivia DOES NOT have Crohn's. Instead, he believes that something - either the really bad case of idiopathic gastroenteritis that Olivia had shortly after we moved here, or the repeated antibiotic treatments that she has had for various issues, or both, severely disrupted her gut flora. This led to overgrowth of bad bacteria that ferments excess gas when she eats sugars that she isn't fully digesting. This irritates her gut, causing the ulceration that we saw. The ulceration or the underlying bowel extension from the excess gas causes the pain. This effect seems to be amplified if she eats more than nominal amounts of gluten.

He theorized that she doesn't have inherent sugar malabsorption/gluten sensitivity issues, but "introduced" ones. He thinks there is a better chance than not that if we maintain a healthy diet that doesn't cause irritation (gluten, certain sugars), that ultimately, the gut flora will normalize, and she will not be so sensitive to what she can and can't eat. Even if it doesn't, we know what to do to keep her pain free 99% of the time, and it is not overly onerous.

In October, Olivia developed pneumonia, was prescribed antibiotics at out local hospital, but didn't improve. We tried giving Dr. White Knight a second chance, but he told us she didn't have pneumonia, she had the flu, and that she needed to stop the ABX immediately (despite not having finished the full course - bad, bad, BAD). Flu test was negative. No calls to doc returned. On the advice of our US pedi, we continued the ABX. Two days later, Olivia was hospitalized due to worsening breathing difficulties, scary high fever, and lethargy. She spent a few a days in the hospital on IV antibiotics - 6 hours after being put on the "high octane" stuff, she was markedly improved. She was discharged a few days later with oral ABX to finish the minimum course, and several other medications in syrup/suspension form (all loaded with artificial sweeteners).

She suffered a breathing/fever/lethargy relapse, and worse, developed excruciating tummy pain (as bad as it was during the height of it). She was readmitted, this time, so that they could do the entire course of an even stronger ABX via IV. Within a few days of discontinuing all of the oral meds, her tummy started feeling better. The pneumonia finally fully resolved.

The local pediatrician that we somehow *lucked* into being admitted under from the ERhas a background in genetic metabolic diseases, and immediately understood the oral ABX/sweetener problem. After researching the issue, he concurred with the US pediatric gastro on all counts. The apparent connection between the sweeteners and flavoring a in the oral meds and the GI issues sort of sealed it for him.

Since then? Touch wood, so far, so good. We still watch what she eats very carefully, but she is now able to tolerate small gluten exposure (e.g., incidental amounts in soy sauce) whereas initially, we had to be zealously gluten free. We have introduced some fruits that she couldn't tolerate before, but in very controlled amounts, and mindful of what other sugar sources she has consumed that day. Occasionally, we tread too far and she has minor, passing pain, but nothing like what we saw before.

So. There we are. Thanks again for the help, and, if you have made it this far, for reading this novella. Hoping that everyone has been healthy and well.

Ann

Click to expand...

I am a Malaysia ( Chinese) , I am a Crohn's disease .
Here I reply u hope can help u son have a good treatment for this Crohn's disease.
Please don't so worry about the disease, hope my information can help u in Malaysia .
I am 45 years old, but I still can live with a wonderful life.
My doctor is Dr Gan Eng Earn from Tropicana medical centre, since I see the dr. The dr give me more about the disease information , I can eat as normal people,
If u really want more infor , pls PM me.
Good night

May God bless.

Hi Yee and :welcome:

Thank you for dropping by I hope all is going well for you.

I have edited out your phone number for privacy reasons and just added in that Merida can PM you for further details.

Thanks, Dusty.

:ghug:Merida, Are things still going well? I sure hope so.

Hi Merida, I lived in Kuantan, Pahang, Malaysia.

At this point, I am visiting Selayang Hospital after all hospitals in Kuantan unable to assist me with my son's Crohn condition.

Which hospital did you referred to? Perhaps we could share what treatment they provided it here in Kuala Lumpur.

I have no other option to travel every 4 hours monthly for medical check up, including admission due to unknown situation which Kuantan's hospital unable to help me.

Hope you dont mind to share some info with me.

I guess no news is good news! We have been doing very well with Olivia. With the exception of a few minor incidences related to her eating particular fruits that she can't digest well (cherries are just TOO tempting...), she has been pain free and staying on the growth curve both for weight and height.

Fiera said:

Hope you dont mind to share some info with me.

Click to expand...

Fiera, we have been managing Olivia's care through our old pediatrician in the US and a pediatric gastroenterologist at that hospital.

However, we have been very lucky to find a pediatrician at Prince Court Medical Center who, although not a gastroenterologist, is excellent in managing her well-child care, and sorting out what medications she can and can't have (due to the fructose and gluten intolerance that caused the initial problems). He did a fellowship in genetics and metabolic disorders through Harvard University at Boston Children's Hospital. He will actually do research into things that he is not familiar with rather than simply spouting off about things that he doesn't know about. The downside is that he handles a lot of "complex" cases, and spends quite a bit of time with each patient, so he has a tendency to run very, VERY late if you are not his first or second patient of the day.

Dr. Choy Yew Sing
Prince Court Medical Center
Women and Children's Clinic (Sixth Floor)
39 Jalan Kia Peng
50450 Kuala Lumpur

Toll Free Tel: 1-800-88-7262


I have heard excellent things about a pediatric gastroenterologist/pediatriatric consultant at Pantai Hospital. I have a friend who is very doctor-savvy take her children to see him for well child care, and she mentioned that several people that she knows take their children to see him for food allergy issues. I don't have any personal experience with him, but he might be worth a try.

Here is the information for the doctor at Pantai Hospital:

Dr. Chai Pei Fan
Pantai Hospital Kuala Lumpur
Paediatrician
Pantai Hospital Kuala Lumpur, Suite B428, No. 8, Jalan Bukit Pantai, Taman Bukit Pantai, 59100, Kuala Lumpur

Tel 03-2296 0733
Tel 03-2296 0734

And links to two articles I found about him:

http://www.thestar.com.my/Lifestyle...o-do-when-your-child-is-too-sick-to-eat.aspx/

http://parenthots.com/features/Early-years-crucial-time-for-immune-system.aspx

Hope this helps!

Hi Merida,

Thank you so much for you info. At least we have a few more options to go if we unable to get result on our March visit.

My son has been hospitalized more than 6 times last year. It was a crucial stage emotionally and physically for me and my husband. However with this new info, at least we have few more option to seek before they decided to go for any surgery procedure.

Since my son's left knee swollen again, doc might need to take the fluid sample and inject him with steroid which will be very painful for few days. I can’t imagine how difficult to face it.

Thanks Merida!