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Crohn's Disease Forum » Parents of Kids with IBD » 4 YO with suspected Crohn's, living in Malaysia, desperate for some help


 
07-03-2012, 01:34 AM   #1
Merida
 
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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* 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
07-03-2012, 02:46 AM   #2
DustyKat
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Hi Merida and

I am so very sorry to hear about your little girl and the health system you now find yourself in... 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
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07-03-2012, 02:48 AM   #3
LilyRose
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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
07-03-2012, 04:52 AM   #4
Sascot
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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!
07-03-2012, 08:27 AM   #5
Tesscorm
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I'm so sorry that your little one has been diagnosed with Crohns 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!
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
07-03-2012, 11:12 AM   #6
Twiggy930
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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...
__________________
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
07-03-2012, 11:38 AM   #7
crohnsinct
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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.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
07-03-2012, 11:55 AM   #8
polly13
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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.
07-03-2012, 12:57 PM   #9
kimmidwife
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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!
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-04-2012, 01:44 AM   #10
Merida
 
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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
07-04-2012, 04:11 AM   #11
Sascot
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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.
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
07-04-2012, 04:22 AM   #12
Merida
 
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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
07-04-2012, 06:46 AM   #13
crohnsinct
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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!
07-05-2012, 11:57 PM   #14
DustyKat
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I hope you booked a large room for the denial party!

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

Good luck and keep us posted!

Dusty. xxx
07-09-2012, 01:53 AM   #15
LilyRose
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Hi there,

Just checking on how things are going for you.

Take care,
LilyRose
07-09-2012, 05:25 AM   #16
Merida
 
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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.
07-09-2012, 07:11 AM   #17
Catherine
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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.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

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

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-09-2012, 08:12 AM   #18
dannysmom
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...

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?
...
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!
__________________
Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
07-10-2012, 07:25 AM   #19
Merida
 
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Query: can IBD go into remission without treatment?
07-10-2012, 08:41 AM   #20
Tesscorm
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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.
07-10-2012, 11:48 AM   #21
Merida
 
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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....
07-10-2012, 12:24 PM   #22
David
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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.
07-10-2012, 12:37 PM   #23
Avw
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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!
07-10-2012, 03:44 PM   #24
Farmwife
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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
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
07-11-2012, 12:07 AM   #25
Merida
 
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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.
Olivia finally had her post barium study "Casper the friendly ghost" poop this morning. She seemed inordinately excited to see it . 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 ); 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:

Thanks again for all of your help,

M
07-11-2012, 12:26 AM   #26
Snoflayk505
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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.i...llegal_a-c.htm

Good luck to you. I hope your baby is one of the lucky ones this diet works for
07-11-2012, 01:48 AM   #27
Merida
 
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Location: Kuala Lumpur, Malaysia
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?
07-11-2012, 10:48 AM   #28
David
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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.
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?
07-12-2012, 06:11 AM   #29
Merida
 
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Location: Kuala Lumpur, Malaysia
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/N...GreensonHO.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 :-)
07-12-2012, 06:27 AM   #30
Merida
 
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Join Date: Jul 2012
Location: Kuala Lumpur, Malaysia
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...
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