Undiagnosed Kids

Your reaction is completely understandable.
We've all been there and it will get better in time.
However his care is down right unbelieving.
Can you seek a second opinion?
No primary doc should have to do what a pediatric GI should be doing.

Also now that there's a dx can you make a thread in the parent forum.
You'll get more views and replies that way.

Update with my daughter. I would say she is 60% better with the adhesion and cyst removed. She still has fatigue, but not as severe. She still has nausea daily, some stomach pain (but more manageable), constipation is still a problem, no more headaches (woo! Hoo!), still has back pain. We will be scheduling another Gastro appointment, but for now, we are relaxing a bit from doctors. Thank you all for all of your kind words, advice and letting me know I wasn't alone.

Michellejk said:

Update with my daughter. I would say she is 60% better with the adhesion and cyst removed. She still has fatigue, but not as severe. She still has nausea daily, some stomach pain (but more manageable), constipation is still a problem, no more headaches (woo! Hoo!), still has back pain. We will be scheduling another Gastro appointment, but for now, we are relaxing a bit from doctors. Thank you all for all of your kind words, advice and letting me know I wasn't alone.

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Yea for a break from doctor appointments.

I glad for the reprieve in pain.
I hope it continues for along while!

Michellejk said:

Update with my daughter. I would say she is 60% better with the adhesion and cyst removed. She still has fatigue, but not as severe. She still has nausea daily, some stomach pain (but more manageable), constipation is still a problem, no more headaches (woo! Hoo!), still has back pain. We will be scheduling another Gastro appointment, but for now, we are relaxing a bit from doctors. Thank you all for all of your kind words, advice and letting me know I wasn't alone.

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I had an ovarian cyst, as well, and I originally thought the symptoms were GI related as did my PCP. My gynecologist didn't even visualize the cyst on pelvic ultrasound as it was slow-leaking. When I had my laparoscopy/hysteroscopy/D&C in October 2016, his preliminary diagnosis before surgery was endometriosis. Not the case - it was an ovarian cyst which caused a big surprise and endometrial hyperplasia. Getting the cyst removed made a HUGE difference for me and I am so glad your daughter is feeling better after getting hers removed. I hope you can get answers as to why she is continuing to have symptoms.

I've had Crohn's Disease for more than twenty years and now I am very worried about my little son.

He is only 4 years old and I think he is starting to show some symtoms of IBD. He doesn't eat very well and seems to have nausea all the time. He belches many times a day not only after meals. He vomits almost once in a week. We are doing an effort trying to give him the foods that like him most but problem is the same. Quality or his stools are not always good he has a very light diarrhea often. I think he has eye-bags (my wife says I am wrong, his skin is just a little pale and looks like having eye-bags).

On the bright side he is very active and never ever said he had pain. And I've never see blood on his stools or vomits.

We visited two pediatricians and they say all the problems I described are very common for healthy kids at his age and does not mean he has any heath problem at all. He lost 4 ounces during the last 4 months, which is nothing to worry about according to doctors.

I can perfectly understand that kids can have tantrums at mealtime and we are doing an effort trying not telling him of or push him to eat, but I think those tantrums cannon last several months. Also if he refuses to eat (or eats very little) at lunch time he would be a bit hungry at dinner time and that is not happening. Moreover I do not think that having a very slight diarrhea could something a kid can do on purpose or something emotional. I know kids does things to challenge/manipulate parents but if that is the case my little son is one of greatest psychopaths of history

As you can see I am very worried about this situation. My wife thinks I am a bit paranoid with this but I think I have many reasons to be worried. I've seen that 20% of Crohn suffers have a closer relative who also have IBD. In my case I do not have (still) any relative but my father has Arthritis, which is also a problem with the immune system.

I think I may try to go back to the pediatricians to see if they can suggest an ultrasound scan or something to explore more. I don't know how kids are diagnosed. It looks like unless you come to ER with a bowel blockage and end up in an emergency surgery they are not diagnosing anything.

Any feedback is appreciated. Thank you.

Kids that age can live on a single pea for days
That said
A stool test fecal caloprotectin is not invasive and can tell you if inflammation is present

Getting full quickly
Vomiting once a week
Sounds like my sons gastroparesis
Delayed gastric emptying

Tagging maya142
There are a lot of things that can cause GI issues
Can you get a referral to a pediatric GI at a major university hospital ?

They can check things out

More for you and keep an eye on him
To determine if any testing is needed

It could be Gastroparesis (delayed gastric emptying). The symptoms usually are early satiety (getting full after a few bites), nausea, vomiting, stomach pain (often after meals), weight loss, reflux. Not all kids have every symptom - my daughter's main problems were extreme nausea and weight loss.

It can be diagnosed with a gastric emptying test. The kiddo eats eggs mixed with a radioactive tracer and pictures are taken over the next 4 hours to see how fast the meal empties from his stomach. If more than 10% of the meal is left at 4 hours, then the child is diagnosed with Gastroparesis.

It's a fairly easy test - just long and boring (at our children's hospital, my daughter got to watch movies during the test, so it wasn't so bad).

It's worth asking about. I'd also ask for a fecal calprotectin - that will tell you if there's inflammation in his gut and whether scopes are needed. It's a simple stool test and non-invasive.

Good luck!!

Thanks Maya and My Little Penguin.

Gastroparesis, I never heard about it. It seems like a very soft version of Crohn's Disease. Is there a treatment for that? What do you do to deal with it?

It is not a kind of Crohn's disease, it's a motility disorder. Motility medications (like Erythromycin, Domperidone) are used.

It's a completely different condition, not related to Crohn's disease at all (usually).

Thanks Maya.

I will let you know how it goes and what the doctors say.

Hi, I posted in the summer about my daughter who has bad stomach pain, gastric reflux, chronic constipation, constant nausea, chronic fatigue, blue/white toes, palpitations, fast heart beat, dizziness, hypermobility and heel pain. She had an endoscopy and colonoscopy last year. Calprotectin levels were very high. Investigations appeared normal and the doc diagnosed IBS and discharged us from clinic. Rheumatology also discharged her. That would all be great if she wasn't feeling worse, with more frequent symptoms. She now feels faint a lot and see shapes and colours with pixelated vision. Seeing a new gastro who wants to do a capsule endoscopy under a general and repeat Calprotectin. He said there is part of the bowel that can't be accessed by the usual tests but the first gastro said all was clear. Also suggested trying meds for abdominal migraine and antibiotics. However, my daughter's symptoms do fit in with POTs and I understand that stomach problems can be part of this condition. I would love to hear from anyone who has dealt with anything similar. Thanks.

Have they looked at Ehlers-Danlos Syndrome?
The new gi is right. The scopes can't see the whole bowel.
I'm glad he wants to investigate further.
As far as I know, ibs does not cause a high Calprotectin level.

She could have POTS and IBD - I'd definitely do the pill cam, if her Calprotectin is high.

I would ask for a fecal calprotectin test to see if he has any signs of inflammation....that may help you to decide if further testing is warranted or if this is just something he will get through. My oldest had those symptoms and does not have Crohns...my middle son has Crohns and never had gut issues young so we never know do we. Best of luck to you and your son.

Thanks everyone for such quick replies. It's so good to hear from other parents in similar situations. Has anyone managed tto swallow the pill cam? I would rather she didn't have another general anaesthetic if possible but I heard the pill cam is large. The new gastro wants to do another endoscopy but I don't see the point if he can't see any further into the bowel.
I've also wondered about EDS but she doesn't get dislocations. Well not so far anyway but she does seem to fit the criteria for POTs as her heartbeat goes up a lot when she stands up. Can you have EDS without dislocations? We can't find a decent rheumatologist. They just tell us they don't know what's wrong and tell her to exercise! If only she could.

The pillcam isn't that big. It's the size of a large pill. Your daughter is a teenager, right? I think she'll be fine. My daughter was able to swallow it without any problems at 16.

Some doctors do place the pillcam in the duodenum during scopes - usually so they don't have to worry about it sitting in the stomach or for little kids who can't swallow big pills.

But it depends on the doc and their preference.

There are also enteroscopies - like an endoscopy that goes deeper into the small bowel. My daughter has had two. They can't go through the entire small bowel unless they do a double balloon enteroscopy (which is slightly riskier - the risk for perforation goes up) but with a regular enteroscopy they do go further than a regular endoscopy.

If they are planning to do that, then I'd have the pillcam placed in her duodenum during the test, since she'll be sedated anyway.

A rheumatologist should be able to tell if she is hypermobile.

Two of my kids have swallowed the pill cams with no issue at all. Once they put it in the scope so they could do the upper GI and then see the rest of the duodenum, jejunum and ileum. It worked just fine as well. I agree that you want to see the small intestine during any new study.

In fact, my youngest son (also without Crohn's but needed ruling out) swallowed it at age 14 without any water. He said it was weighted and went down very easy!

We typically have an upper and lower scope done and at the end the GI places the pill cam in the duodenum
This way we are sure to get good pics of the entire small intestine
Because the pill cam can bob around in the stomach otherwise

If it has been a year
Well worth the new upper and lower scope
Since Crohns and be patchy
When Ds was first dx the scope itself looked good
GI got lucky with samples that showed the inflammation on what he thought was healthy tissue

Wishing you the best

I hope you are able to get the dx you need as soon as possible. We were fortunate in that it took just 4 weeks from presentation of first symptoms (loose stools) on 11/1 - we thought she had a persistent stomach bug until we started seeing blood) to diagnosis. They quickly did blood work and stool samples and she had her colonoscopy and endoscopy on 12/1 and were able to dx ulcerative colitis. (Since then it's been a little back and forth between Crohn's and colitis). For us, the scopes gave us the dx.

As was said, given that you already have a child with IBD you would think that your docs would be pretty pro-active to check this out!! Best of luck to you.

Hi all, my four year old has had consistent high calprotection levels of over 600 (don't record here in the uk once over 600!) Has tummy pains, odd fevers of a night, back pain, very poor appetite, slow to gain weight. Currently 11.1kg...colnoscopy/endoscopy shows inflammation of the esophagus but scan to check bowel.....is this crohns or GERD? SHE DOESN'T vomit unless travelling in the car, and mainly constipated xx

Hi all - I am new to this forum and to these issues, although I have been reading a lot. My 9 year old daughter tested positive for Celiac in late January, 2017 but her GI doctor told me on the first visit she thought it was IBD "because you do not see blood in the stool with a Celiac". I explained to her that my whole family had a virus and some gastro issues - pain and diarrhea - and that was the only time my daughter ever had any blood. In fact, she has never had a symptom in her life. No prior stomach pains, no diarrhea or constipation, no other pains anywhere. She has been growing well, eating well and very active. Still, my GI doc insisted we do a calprotectin test and a colonoscopy. Her calprotectin came in very high (above 2000). BUT, when I asked to repeat it 10 days later, it was way down to 218. This also supported my theory that the blood was related to a viral gastro. However, they also found inflammation after the colonsoscppy. It was described as mild to moderate and they called it indeterminate IBD. Still, if she did have a Gastro, would we not expect some inflammation. My GI doc at CHOP has no answers. She told me to wait and come back in a few months!!! That seems crazy to me? We are just going to do nothing? Here is a healthy kid a few weeks ago and now we think she has Celiac and IBD? And we do nothing? I started a gluten free diet right away. It helped and the blood and diarrhea went away completely. She still does get mild, brief tummy aches either when she is hungry (which is ALL the time!) or while eating or an hour or two after meals. This often happens once or twice a day but we have also had days with no pain. She gets a little gas with the pain. It seems very minimal. Her bowel movements look totally normal. She has lots of energy, good appetite, no blood or mucous, no other symptoms except a little gas pain. Does this sound like anyone's experience at the beginning of IBD? Does anyone else have a child with Celiac and IBD with sudden but mild onset who was previously healthy from birth? I am so worried!!! Thanks!!!

My daughter did not have severe symptoms either. She had abdominal pain and constipation. We honestly thought we were ruling out Crohn's with a scope. I was shocked when I got a call from her GI saying it was definitely Crohn's.

Kids with Crohn's can have a variety of symptoms. Some kids have diarrhea and bleeding. Others deal with constipation. Some don't have ANY gut symptoms and are only referred to the GI when there are growth issues. It really, really varies. After being on this forum for several years, what I have learned is that there is no "normal" presentation. There are kids who are asymptomatic but have had such severe inflammation that they needed surgery.

If you are uncomfortable with the doctor's diagnosis, I'd encourage you to get a second opinion - the big three hospitals for IBD are CHOP, Boston Children's and Cincinnati Children's.

We also go to CHOP.

I think you have a couple options. You can choose to wait and see - redo her Fecal Calprotectin in a few months and see if it's still high. You can choose to get a second opinion or you can choose to treat her now.

Honestly, doctors don't diagnose kids with Crohn's easily, so biopsies must have shown chronic changes that are associated with Crohn's.

I will tag some other parents so you can get some more opinions:
my little penguin
Clash
pdx
Mehita
crohnsinct
Tesscorm

Hi Okidli. I think I'd probably get a second opinion in your case. What test did the doctors do to diagnose Celiac Disease?

With some kids (even adults), it can take quite a while to get a firm diagnosis, perhaps partly because symptoms can vary to such a degree.

My son was never sick... Six months before diagnosis, he started with some symptoms... but, sometimes, you (and/or doctors) don't see how the pieces fit together.

- on and off fevers and diarrhea - ped said there was a gastro bug going around
- canker sores - ped said possibly due to his new toothbrush
- night sweats - due to the fever caused by the bug
- weight loss and fatigue - caused by his body fighting the bug...
- fatigue - he'd just added a second phys.ed. class (2+ hours/day) plus played on two hockey teams
- gas

We had several follow-up apptmts with our ped and she ran bloodwork and a small bowel x-ray. On one round of fever/diarrhea, we went to the local hospital where they did ultrasound. All tests showed minor indications but not unusual with a gastro bug.

Eventually our ped suggested we go to the children's hospital rather than wait for a gastro referral. We did and he was tentatively diagnosed within hours. And, surprisingly to me!, it was my son's passing comment on 'canker sores' that clicked all the pieces together for the GI.

All this took almost six months.

My son had no pain, no bleeding, only lost his appetite when he had a fever, no nausea...

The symptoms can vary so much, it's not uncommon for a delay in getting a firm diagnosis. Very frustrating!! I would either start making arrangements for a second opinion or begin to keep a journal of all symptoms, even if it seems unrelated or justified (ie new toothbrush causing canker sores) and follow-up with your current GI sooner, rather than later.

Some other symptoms may be joint pain, anemia, heartburn...

Celiac disease can be diagnosed fairly easily with an endoscopy and blood tests for antibodies to gluten. Most GIs recommend not beginning a gluten free diet before a certain diagnosis since going gluten free will (obviously!) heal things up. That said, if the GI wasn't sure what your daughter has/had, and wants to wait, then by all means go gluten free. The two diseases (crohn's and celiac) can co-exist (I have both), but if she is much better on a gluten free diet then I would continue with it. It sounds like she is much better, with symptoms that aren't bothering her too much, so I think Maya142 is completely right: it's your (and your daughter's) choice to wait and re-test or get a second opinion right now. I hope she continues to improve.

Thank you to all of those who responded to my note. My daughter was doing well and then the daily mild pains became just a little more frequent over the last few days. Then she went from perfect poops to bloody D. Full on, 10 times a day. The diagnosis is hard to deny. Ow. I am so scared, worried for her and depressed. I am trying to stay strong for my daughter but when I am alone, I feel so devastated. We went to CHOP ER and they sent us home. I feel like we have been in waiting mode for months. Shouldn't they do something at this point? But I am scared of the drugs too. She is only 9 and 4 mo the ago was in seemingly perfect health.

Also, any advice on diet through this flare (and beyond)? Since she is also Celiac, obviously no gluten.

Maya142 said:

My daughter did not have severe symptoms either. She had abdominal pain and constipation. We honestly thought we were ruling out Crohn's with a scope. I was shocked when I got a call from her GI saying it was definitely Crohn's.

Kids with Crohn's can have a variety of symptoms. Some kids have diarrhea and bleeding. Others deal with constipation. Some don't have ANY gut symptoms and are only referred to the GI when there are growth issues. It really, really varies. After being on this forum for several years, what I have learned is that there is no "normal" presentation. There are kids who are asymptomatic but have had such severe inflammation that they needed surgery.

If you are uncomfortable with the doctor's diagnosis, I'd encourage you to get a second opinion - the big three hospitals for IBD are CHOP, Boston Children's and Cincinnati Children's.

We also go to CHOP.

I think you have a couple options. You can choose to wait and see - redo her Fecal Calprotectin in a few months and see if it's still high. You can choose to get a second opinion or you can choose to treat her now.

Honestly, doctors don't diagnose kids with Crohn's easily, so biopsies must have shown chronic changes that are associated with Crohn's.

I will tag some other parents so you can get some more opinions:
my little penguin
Clash
pdx
Mehita
crohnsinct
Tesscorm

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Thank you Maya142! Would you be willing to speak with me about your experience and advice? I know it is a lot to ask but I could really use the support of a mom who understands. Around me, I feel no one understands just how serious and devastating this is because my daughter still looks the same. Thanks so much!

pdx said:

Hi Okidli. I think I'd probably get a second opinion in your case. What test did the doctors do to diagnose Celiac Disease?

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Thanks pdx. Do you (or anyone) have a doc you would recommend? I definitely want a second opinion now to understand and assess my options.

I'll PM you Okidli.

My son is 9 and a couple of months ago started having nausea, horrible stomach pains, diahrrhea, cramping, it subsided and came back a few weeks later, it went away again and came back- after 3 times I knew this wasn't a regular stomach ache. We went in and had ultra sounds, x rays, blood work but the only this abnormal were inflammation markers in bloodwork. He is yet having a flare after eating some chicken, and crying with nausea. WE have been referred to a GI doctor and will go this week. I feel awful because I was trying to give him a very plain diet based on " breaking the vicious cycle" book, but he ate this chicken and is flaring. ANy advice would be very helpful. thank you so much!

seoreh said:

My son is 9 and a couple of months ago started having nausea, horrible stomach pains, diahrrhea, cramping, it subsided and came back a few weeks later, it went away again and came back- after 3 times I knew this wasn't a regular stomach ache. We went in and had ultra sounds, x rays, blood work but the only this abnormal were inflammation markers in bloodwork. He is yet having a flare after eating some chicken, and crying with nausea. WE have been referred to a GI doctor and will go this week. I feel awful because I was trying to give him a very plain diet based on " breaking the vicious cycle" book, but he ate this chicken and is flaring. ANy advice would be very helpful. thank you so much!

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Feeling responsible for our children is a normal response, but remember that you didn't choose this for him. You are his biggest advocate and support. I know it isn't easy. I hope you all can figure it out quickly with the GI's help. I'm sorry you had to find us, but this forum is a great place for support.

Is feeling tired generally part of inflammatory bowel diseases? I suppose it differs with every child and situation.

It's definitely common - inflammation can cause fatigue, anemia is common with IBD and causes fatigue etc.

Hang in there - hope the GI has some answers.

Hope you get some answers soon, seoreh.

This is my first post, so I will try to keep it short, and any suggestions are appreciated . I only hope our journey through doctors and misdiagnosis and medicines can help others like this site has helped me. This thread appears to be for kids that are currently undiagnosed and I thought I would share my son’s symptoms. It took almost a year to get diagnosed because of his strange symptoms that now make up the “puzzle”.

My son first showed major symptoms when he was 15. Prior to this he was very healthy. He had been sluggish for about a year, but we thought it was just teenage laziness. He never had diarrhea and had constipation problems since he was a baby. I think for this reason Crohn’s was overlooked…and the fact that he is super quiet and rarely complains about physical discomfort.

It started with chest pains, saying it hurt to eat. Doctor told us was heartburn and sent him home.
2 weeks later, my son was not eating much at all and the doctor then did ultrasound/labs and found his gall bladder was slightly swollen, he was anemic and his inflammation markers were high. Doctor was convinced it’s gall bladder related.

Before anything was done about the gall bladder (thankfully) he was in the hospital for 9 days because of weight loss and dehydration. While in hospital an endoscopy showed that he had severe erosive esophagitis. The doctors were thinking GERD or EOE was the cause.

They sent us home and treated us for GERD with large amounts of PPI’s (Nexium and Prilosec). Over the next 6 months, he kept taking the meds and he kept telling me they didn’t help and continued to get sicker. The anemia getting worse, more weight loss, less appetite, severe leg cramps and no energy at all. Finally, I got fed up with the doctor not listening or doing anything to help. We quit the PPI meds (slowly I should add) that were obviously making him worse and found a new GI doctor because I knew it wasn’t GERD and this Dr. just wouldn't listen.

We visited the new Dr. and I was so relieved when she seemed genuinely concerned and insisted on full lab testing for nutrition an endoscopy and colonoscopy. A week later after the scopes she was sure it was an IBD. After a CT scan, confirmed the moderate to severe Crohn’s. It only took a new Dr. that was willing to take a look at all the "puzzle" pieces to get a diagnosis. She had him feeling better within 2 weeks of the initial visit.

My Son is much better today.
His symptoms included erosive esophagitis, anemia, weight loss, leg cramps, fatigue and the inflammation in his blood tests. No diarrhea, no fever, no vomiting, and no blood in stool.

Don’t be afraid to get second opinions, push for testing if you think it’s necessary and ask questions. And do your best to keep a copy of all test, lab and scope results, this has helped me numerous times.

Mom of I (16) diagnosed at 15

Current Treatment:
Remicade started in June 2017
Vitamin D supplements
Iron Supplements

Past Treatments:
Imuran
Prednisone
Nexium
Prilosec

lively_child: Thanks for your post, and I'm so glad that your son is already doing so much better now that he has been correctly diagnosed and treated!

Okidli said:

Thanks pdx. Do you (or anyone) have a doc you would recommend? I definitely want a second opinion now to understand and assess my options.

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How is your daughter doing these days? My 10yo daughter has had a similar path including the celiac/IBD diagnosis at once.

Hi Everyone,

First, let me say hello and thank you so much for creating a very helpful guide to all the parents of undiagnosed kids. I have pretty much read the whole thread over the past few weeks. I kind of feel like I know you all now!

I am also writing to seek help - any suggestions are very welcome - with my 16 year old daughter who has now been unwell for about 6 months and missed the last 4 months of school. Fortunately it is now the end of the school year here (Australia) and we are hoping for something/anything to occurr before the end of January when school all starts up again.

My beautiful girl has: constant pain (same spot always by her belly button, pain 24/7 and enough to wake her at night), vomitting at least 2-3/7, fevers at least 2/7, anemia, joint pain, mouth ulcers, very very darkbrown poo (apparently NOT black!) and D up to 30 times per day. She also smells different - like an organic/benzene/toluene/chemistry lab type smell about her that was never there before.

She has had blood tests (normal), faecal tests (normal), scopes and biopsies (normal), and pill cam (normal). Was initially diagnosed with IBS so spent a month on FODMAP (no change) and has even tried hypnotherapy sessions for the 'mind-gut connection'. No difference. She was never stressed, anorexic or on laxatives - gee the things people (including medical people!!) say hey!!

The GI has now said that he thinks its not IBS but rather an auto immune 'thing' - but they can't put a label on it.

My girl is now taking Questran (2 sachets per day) to stop the D and is on Lyrica (75 mg twice a day) along with codeine to stop the pain. The codeine has to stop in another week and she has also been given a script for Endep which she can use after the codeine is she wants/needs to. These drugs have stopped the D and have improved her quality of life but the pain (belly and joint) returns about 3 hours before the next lot of drugs are due.

We have an appointment for an intestinal ultrasound in January and then I suspect we will have worn out our welcome!!

There seems to be a huge wealth of knowledge here so i though't I'd throw my hat into the ring and see if anyone might be able to suggest anything! I hope that someone might have some ideas to help us!!

KJB xx

If they are thinking autoimmune
Have they sent her to a rheumatologist
That would be your best bet
Some autoimmune disorders cause gut issues but are not Crohns
Especially rheumatologist are better at dealing in the “gray areas”
Did they do an mri ?
What happens when she stops food ?
Has she tried exclusive enteral nutrition (formula only no solid foods )
It’s as effective as steriods for the gut but won’t fix auto immune issues
Tagging Dusty
Catherine

Hi my little penguin and thanks so much for your quick response and tagging some of the other stars of the site!

We haven't been to a rheumatologist at this stage. She needs to go and get a vasculitis blood test and then has the intestinal ultrasound in January. I was a little surprised that she wasn't offered an mri but I gather the intestinal US looks for inflamation and is good at differentiating between CD and UC and also can be used to identify vasculitis issues too??

When she stops eating it does help her guts - but it certainly doesn't take all the pain away. She has been through periods of not wanting to eat - or preferring just a liquid diet - but I gather that doesn't help with identifying inflamation if there is an IBD issue so I am trying to encourage her to eat as much as possible before the IUS in January. She has also had significant pain in her oesophagus which has made eating difficult. She lost about 5 kg (10 lb) when this all kicked off but has slowly managed to put some it back on once she was on the liquid supplements.

Please keep the questions coming! Again, like many here have mentioned, I don't want to look like a neurotic mother, but this is my baby girl and I need her to be well and happy again.

All the best xx

Pain in her esophagus?
Did they do an upper endoscopy as well ?
Looking for signs of (EoE) eosinophilic esophagitus ?
Ultrasound is just cheaper than an mri not necessarily better
Some are trying to use it for imaging in places like the U.K.
the standard of care in the US is still mri with Enterography

Have they looked at Behcets ?
Egids can cause issues as well that would include EoE

Hi again

Yes, they scoped both ways - nothing remarkable other than a nodule (which still wasn't considered remarkable) and that she had some visible 'gastrits'. To be honest I don't know what biopsies were done but everything was returned as clear.

Immediately after the scope she was diagnosed a having GERD and put on nexium but it did absolutely nothing to help so stopped taking it (especially with the recent news coverage of links to cancer). She had never complained of heartburn and, at that time wasn't vomiting like she is now.

Having just read about Bechets I guess it is possible but no eye, lung, skin or genital ulcerations and as far as I know no brain or heart issues. I imagine if the vasicullitus test comes back abnormal then that may be something to look in to......

Thanks again for the ideas

K

Hi and welcome
Your poor kiddo.
The Gerd meds, how long was she on them?
When she drinks " liquid diet, " what type of liquids is that?
Had she done that before the scopes.

Hi Farmwife and thanks for your reply

She was on Nexium for the entire course/packet (not sure how long it lasted sorry as it was back in September.

Liquid diet was Sustagen and Resource (at different times). Hated Resource as too sweet but likes Sustagen and is happy to live on it. She was hospitalised for a few days and they put her on Nutrica Fortisip but she really disliked that one.

I can't remember exactly, but I suspect that she had been at least suplementing her diet before the scope. She seems to really struggle with grains - rice and pasta come straight through - but has tried to eat more 'food' than 'liquid' lately. Some days are just bad and she sticks with the sustagen then.

Ummm mm..... Just a thought, remember not a doc just a mom.

I wonder if gut rest before the scope could have change (or healed) what was happening.

I know Grace couldn't be on steroids for 8 weeks before her scope.
They wanted to see what was happening before treatment started.
Formula or EEN can be used in place of steroids for healing the gut when first diagnosed. If course that doesn't work for everyone.

OK thanks

I have actually read about such an idea in this thread and wondered about that too....

She has the ultrasound on 17th Jan so how long beforehand should she try to stick with a normal diet? It is pretty hard when they feel so poorly though to say you have to eat.

K

I would push for an MRE or pillcam. Sometimes IBD can hide in the small bowel and an ultrasound really isn't accurate enough to tell you if it's there. Symptom-wise it certainly sounds like it could be IBD, so I would make sure they check the small bowel.

There are several parents here whose kiddos have mostly small bowel disease and have been diagnosed using a pillcam (capsule endoscopy) or MRE.

I would also see rheumatology - many autoimmune diseases can involve the gut. Does she have any joint symptoms - pain, stiffness, swelling, redness or warmth?

Hi Maya142

Thanks for contributing to our story!

Yes, she has had a pillcam already - showed nothing out of the ordinary. When she was in hospital she was meant to be given an MRI (not sure if the same as MRE?) but it didn't end up happening. They are now wanting an intestinal ultrasound and has been booked in. I rang querying this yesterday (as she had already had an abdominal ultrasound way back when it all began) but was told, no, this is what he wants to do. I feel pretty useless here as clearly I can't organise a MRI for her and have to wait to see what the GI wants to do next.

I kind of feel like we are part of a game at times. Do this and see if anything changes. Take that and see what happens. I understand that this is not a straightforward thing but it is wearing us down a bit. At least my girl is on some pain relief and anti-D meds now and that has certainly improved her quality of life. As I said to the GI - If she were the family dog we would have had to have her put down by now. I'm not sure if he saw the funny side but, as you all know, you either laugh or cry sometimes.

She definitely has joint pain (and has all along). She was an all star cheerleader and had to stop training about 5 months ago which broke her heart. Especially as her team went on to win their division of the Nationals and she has also missed the chance to travel to the US next year to compete there. Pook kid

Keep those ideas coming please!

Sorry, I missed the pillcam and the joint pain. So with her joints, which ones hurt? Do they still hurt now that she has stopped training?

There is a type of arthritis called Spondyloarthritis (SpA). It is associated with IBD and there are people who have both spondyloarthritis and IBD. But there are also a lot of people who have spondyloarthritis but have "subclinical gut inflammation" but not full-blown IBD. So they have mild inflammation in the gut which is often asymptomatic but can cause symptoms like abdominal pain and diarrhea. A very high percentage of people with SpA have gut inflammation without symptoms - something like 60-80%. A much smaller percentage have actual full blown IBD - something like 8% I think.

It is not as bad as full blown Crohn's but is usually seen on biopsies. Some people also have small ulcers. Generally, it is found by scopes/MRE/pillcam.

Any joint can be involved in SpA but it is common for the lower limb joints to be involved - knees, ankles, hips etc. Sacroiliac joint or spine pain is also very common. But honestly, any joint can be involved - from fingers to the jaw to the toes.

Has she ever had any motility testing? That is something else I'd consider given the vomiting. My daughter has Gastroparesis - slow gastric emptying - as well as Crohn's. Her Gastroparesis symptoms were loss of appetite, feeling full after eating just a few bites, nausea after eating, pain after eating, weight loss and occasional vomiting.

People with Gastroparesis often are able to tolerate liquids better than solids.

An MRI is different from an MRE. An MRE is specifically for the bowel:

<< Back to Gastroenterology Tests and Procedures
What is magnetic resonance (MR) enterography?

Magnetic resonance enterography is an imaging test that lets your doctor see detailed pictures of your small intestine. It can pinpoint inflammation, bleeding, and other problems. It is also called MR enterography.

The test uses a magnetic field to create detailed images of your organs. A computer analyzes the images. Before the test, oral and intravenous contrast dyes are given to highlight the small intestine. A drug will also be injected to decrease movement of the bowel which can interfere with the images.

This is not an X-ray. It does not involve any radiation. The oral contrast doesn’t contain any radioactive material. The images from this test are quite detailed. The procedure may take around 45 minutes.

Click to expand...

Also wanted to ask, what helps more, the codeine or the Lyrica for her pain? It looks like Endep is Amitriptyline - it is a tricyclic antidepressant. In small doses, it is used for IBS pain or functional abdominal pain. Some kids find it very helpful.

Has she had any immune testing? Tagging DanceMom.

Hi again

Joint pain is why she stopped training (along with everything else really!). The pain has been largely in wrists and elbows but also in necka and back. Her cousin (my sister's son) has JIA and the GI is aware of that.

She has not had motility testing. Her issue is chronic D with up to 30 trips to the bathroom each day before being put on Questran a few weeks ago. That improved everything after the very first dose. I gather that is a Bile Acid/Salt malabsorption issue. If she eats anything too fatty then she still is no good - ate too much cheese last weekend and leaked something afwul.

Not sure about the Lyrica/Codeine balance. She has to wean off the codeine now so I guess we will find out and I'll let you know. We spoke this morning of just taking a dose in the morning and skipping the night time one to see how she goes. She hasn't had the Endep as yet - we have a script and will only fill it if the Lyrica isn't able to keep her pain levels down. I gather it works in a different way to Lyrica.

She was put on Axit a couple of months ago (also an old antidepressant) but that made her D much worse (up every 90 minutes during the night and then all day as well) so she stopped after 3 days.

No immune testing has been done at this stage. I'm not sure that they know what to do with her!!

Thanks to everyone for helping us with this matter

K

The chronic diarrhea doesn't really fit with Gastroparesis. But the other stuff does. But I don't know, to be honest, because symptom-wise it sounds most like IBD to me. But the negative pillcam and negative scopes suggest something else.

It's possible that there are multiple issues going on too.

In terms of IBS, what medications did she try? Did she try Levsin or Bentyl for the pain? My daughter has Crohn's and Gastroparesis but finds Levsin (which is an anti-spasmodic) really helps with cramping abdominal pain.

I was wondering about Lyrica vs. codeine because I was wondering if amplified pain could be an issue. Amplified pain is functional pain - pain with no real cause. It can occur after a minor illness or long-standing inflammation or a number of things. Essentially it is over-active nerves, sending the brain pain signals when there isn't actually anything causing pain. Or they are sending disproportionate pain signals - for example, if there is a little inflammation but the child is a feeling a LOT of pain. Generally opioids do not work well for amplified pain but anti-convulsants/anti-depressants like Amitriptyline and Lyrica do.

But it does seem like in addition to the pain there is something else going on that is causing the diarrhea.

Hi again

The only medication that she had for the IBS was colofac (antispasmodic). This seemed to help at first but then she eventually stopped taking it as it wasn't doing anything more to help.

It appears that codeine is the one doing the most for her. She said that she forgot (?) to take Lyrica the other day and it didn't seem to make much of a difference to her pain levels - but she had taken the codeine. She was started on 25 mg of Lyrica but then was put up to 75 mg. She doesn't really have cramping pain - just pain. Apparently it can get stabby when it gets worse, but there is always this dull background pain (pre codeine, but better post codeine). I'm kind of hesitant to start her on Endep as many of those drugs are addictive (as is codeine I know). I'm not really sure but I guess we have to see what happens when she comes off the codeine first.

The amplified pain issue is clearly something to think about. She was referred to a hypnotherapy group for 'over sensitisation' of pain but they essentially said that they didn't think she was suffering from that. I'll have to ask her more about it tonight when I am home. She went twice, but by then the GI had said we don't think you have IBS anymore so the psychologist wasn't quite sure where to go. The kid isn't a stress head and even the psychologist that she saw stated that she seemed perfectly fine re anxiety and depression.

Thanks team!
K

Unfortunately, codeine is not a drug you want her on long-term unless she absolutely needs it. My daughter has been on opioids because of severe autoimmune arthritis (Ankylosing Spondylitis) and they honestly cause as many problems as they solve.

Amitriptyline and Lyrica are much less dangerous to stay on. I would suggest seeing pain management while you are trying to figure out the cause of her pain. They can help you figure out what meds to keep her on and what to try next that isn't addictive.

My daughter also has amplified pain syndrome - she ended up doing an intensive inpatient pediatric pain program to help re-train her nerves and to teach her to cope with chronic pain. It was an incredible help and taught her a lot.

Great - thanks for the advice re codeine.

I think a trip to a pain clinic is on the cards as I suspect that when she comes off the codeine the pain is going to ramp up again.

I'm sorry to hear that your daughter has had such a rough time too. We go along in our own little bubble until something like this happens and then you get a very different view of what is important. My nephew with JIA also attended a pain clinic to help him.

My girls symptoms do sound a lot like IBD to me too but, as I said to my girl, you can't call a ham sandwhich a ham sandwhich unless you have ham. IBD without inflamation is just not IBD. Perhaps the test in January will find something. Even better it might all just resolve itself by Xmas (hopefully!!). It really is all I want for xmas........................

Thanks again for your help and support

K

There are some kids who really do very well on Amitriptyline for pain. It's used quite a lot for IBS here and for migraines and amplified pain. So I hope it will at least control her pain a little bit.

My daughter was on the sister drug, Nortriptyline. Unfortunately, it didn't work for her. But the only side effect was mild constipation which might be a good thing for your daughter!

Sending hugs. Hang in there. If you make your own thread on the main Parents' forum, you will get more responses. This is such a long thread that sometimes people don't look here.

Thanks again for your reply and advice - much appreciated!

I guess we will just have to wait and see how things go once she comes off the codeine. Fortunately, she has finished for the school year so can afford to have a few days of not feeling too wonderful to run these 'experiments'.

Given your suggestion I will get the Endep script made up and have it ready if she needs it.

Once again I am very grateful to you for your advice and help - I will post again in a new thread if we need some more ideas but given that I have started here I'm not sure if/how it is possible to grab these posts and put them into a new one??

I hope that you and your kids have a wonderful holiday period and that 2018 brings better health for everyone. Lets hope that it is a great year for us all!

Cheers
K

Farmwife said:

I wonder if gut rest before the scope could have change (or healed) what was happening.

I know Grace couldn't be on steroids for 8 weeks before her scope.
They wanted to see what was happening before treatment started.
Formula or EEN can be used in place of steroids for healing the gut when first diagnosed. If course that doesn't work for everyone.

Click to expand...

IMO only...I agree with Farmwife. If it is Eosinophilic, celiac or IBD related and if being on a liquid diet is helping her symptoms then it could be helping into a remission and causing the tests to look better than normal. It might be a good idea to have her eat normal at least a few days before a test. Sounds like cheese/greasy foods might be a trigger and I would incorporate gluten as well to check against celiac or eosinophils reacting to one of those foods. Our GI told us to eat gluten before my son's scope, because avoiding it would make it harder to diagnose celiac if that was the problem.

Another thing I would suggest is to think about looking for another GI doctor. My son went undiagnosed for almost a year, and then it only took another Dr. looking at his case and she had him diagnosed within 2 weeks. You may have an awesome GI doctor but sometimes a fresh look from a different doctor makes all the difference.

Again, this is my opinion only. Best of luck to you.

You need a normal diet for weeks before scopes not formula only them food a few days before
That heals the gut
It’s proven to work which is great but you don’t know what your dealing with
Then

They should have told you
Treatment for ibd /celiac /eosinophilia etc is formula only or avoiding wheat etc...
This means you were treating something

2 months of wheat for a valid celiac test of 1-2 slices of bread a day

Dear Lively_child and MLP,

Thanks again for your ideas - it means a lot to me to have this support from around the world!

Unfortunately we were not told about the liquid diet being something that can 'mask' infammation so it may be just that. Or not ???? Unfortunately we also were not told about stopping gluten before taking a coeliac test. My girl went gluten free about three years ago as she believed it was upsetting her tummy. If only we had known to get a coeliac test before stopping!! Now the smallest amount of gluten (even the tiniest amount in a small amount of soy sauce) send her into a richtus. Within maybe 30 minutes she is doubled over in pain and it can make her vomit or have D. Given the need to eat a significant amount of gluten to be tested for coeliac, this just isn't going to work for her. I can't ask her to eat and be in even more pain than what she has been suffering these past few months. It is easier to just stay gluten free given that is the treatment option anyway. Her recent scope showed negative for coeliac, however, that was not surprising given that she hadn't eaten anything with gluten in it for years (unless by accident!).

Ah these kids - we love them to death but they cause us to go grey early!!

Lively_child, if it isn't too personal, may I ask why your child took so long to diagnose? What was missing that allowed the new doctor to make the diagnosis so quickly?

Once again, thank you for taking the time to write back to me!

Cheers
K

kjb
I attribute the long time to diagnose to a few different reasons:

1. We were at a good hospital but could never get a doctor to take us seriously. He was admitted into the hospital for severe chest pain, dehydration and malnutrition for over a week before they agreed to do an endoscopy. Then they diagnosed it erosive esophagitis caused by GERD. For many months, they would not listen to my concerns that this diagnosis was wrong and that the medicines were not working. I knew the Dr's there had made up their mind on a diagnosis and were not budging easily. They even reprimanded us when we said he stopped taking the medication because it wasn't working at all and seemed to be making him worse! I researched and found a Pediatric GI doctor that had great reviews. The first time we visited she was very concerned with his test results and insisted on full bloodwork, and a full scope from top and bottom. The endoscopy still showed signs of erosion but the colonoscopy showed even more. It took the right tests to find it, BUT what it really took was a Dr willing to order the tests.

2. My son extremely under emphasizes his pain and symptoms (big strong man, you know). I knew he was very sick. But when the Drs talked to him, not knowing his demeanor, they assumed it wasn't that bad. After the scope the Dr. asked me if it was possible he had drank an acidic cleaner, she just couldn't believe how bad the damage was compared to his lack of complaining.

3. His symptoms were not necessarily typical to Crohns. In fact constipation was always a problem from the time he started eating real food. Since diarrhea is red flag symptom, and he did not have diarrhea, they did not suspect Crohns. His symptoms included erosive esophagitis, anemia, weight loss, leg cramps, fatigue and the inflammation in his blood tests. No diarrhea, no fever, no vomiting, and no blood in stool.

Mom of I (16) diagnosed at 15

kjb said:

Dear Lively_child and MLP,

may I ask why your child took so long to diagnose? What was missing that allowed the new doctor to make the diagnosis so quickly?

Click to expand...

Hi there! I have been following your situation from afar. I haven't commented because I am not well versed on differential dx's and you are in great hands with Maya and MLP.

I just wanted to say that a long time to dx is pretty much the norm with IBD and all things gastro. There are just so many things it could be, IBD although on the rise is still not a mainstream illness and not the first suspect, and to complicate matters pediatric patients do not all present the same way or in the usual way. The dx usually comes quickly because disease was left to simmer for a long time and the kids end up in really bad shape.

Keep on fighting for your girl. You know something is wrong, you just don't know what. Make them figure out what!

Dear Lively_child and Crohn'sinct

Thanks so much for your replies and thoughts - again much appreciated!

Lively_child - wow your situation sounds so similar to ours that my girl and I had a good chuckle!! She was also diagnosed with GERD but the meds did absolutely nothing so stopped them. We also feel that we were pigeon holed (with IBS) and it was VERY difficult to get the GI to think otherwise. Finally, he came around and admitted that there were way too many things that just didn't fit the IBS dx. It was only then that I felt we started to make any progress. My girl is also a tough cookie - walked around on a broken ankle for nearly a week (my fault as we were camping in a remote part of Australia and hospital was a long way away so I asked do you think it's broken or just sprained) and I suspect has a pretty high pain threshold. Throughout all of this she has never carried on with the pain, but I know it is there as her face changes colour and she goes quiet. She internalises rather than extrernalises if you know what I mean. I can't fault our GI from a testing point of view as I think she has had pretty much everything (except the MRE which may be what she actually needs the most!!). I am forever grateful that we have such a great healthcare system in this country. It is my first experience of having to be a part of it ther than an occasional trip to A&E for a broken bone.

Crohn'sinct - thanks for "adding your two cents worth" as we say here! I understand what you mean about the slow wheels of diagnosis. I see you have not one but two daughters who have been dx with Crohn's so I take my hat off to you. I also think you are right with your philosophy re knowing your child better than anyone else. I will keep fighting for her but it is difficult when I have no medical training and doctors have limited time. That is one of the key things I think that I have learnt from this experience.

Once again, thank you to you both for taking the time to help my little family (me and my girl!). I know that we will get there eventually, but it may take a little bit longer!

Cheers, K

Hi Everyone,

I'm back with another question, sorry....

My girl seems to be getting better! After nearly 6 months in this situation, a week ago today I went home from work and she wasn't that green/grey colour that tells me she is in significant pain. She said that she was feeling a bit better. Now, her pain has dropped from about a consistent 6 or 7 to a 1. She stopped taking the codeine on the weekend (as she was meant to) and then decided that as the Lyrica wasn't doing anything much (as she had forgotten to take it while still on the codeine) she decided to stop that too. She still needs the Questran otherwise she is going to be on the loo all day. What does this mean? I this the end of it? A cycle/flare or whatever we call it? What do we do now? Go back to the specialist? Cancel the ultrasound?

I'm thrilled (as it is all that I wanted for xmas!) but wondering what we should do too

Cheers
K

As to the normal test results, well they couldn't explain that but the one that really stumped them and they couldn't get a handle on was the CT scan. They could not believe that it was normal and within a week they opened her up and saw what they did. I guess the only explanation is they weren't able to fully visualise the terminal ileum. It wasn't until the day before she went into hospital the second time that a distant relation rang and told me she had Crohns and it took them 4 years to diagnose her. I started to google and things fell into place. At least when I saw the surgeon and paediatrician the next day I was armed with enough info to say to them - she is not leaving until you prove to me it isn't Crohns!

Yikes! Did she not have scopes? She went straight to surgery? Poor kid. I hope she is dong better now.

FWIW they don't typically do CT scans in kids due to the exposure. They will usually opt for an MRE but in emergent cases the ER will sometimes order CT scans. But even the MRE's can sometimes miss things. My daughter had disease hiding in the folds...some kids just have stealth Crohn's.

Hi everyone I am desperate for some help and advice. my son Zachary is 3, around 10 months ago he started having pains in his legs and tummy .i put it down to attention after having a new baby and sought help from health visitor as he just wasn't thriving ...he stopped gaining weight , was very small and petite , could not walk far , very pale with dark
Circles under his eyes! I went back to doctors 6 months ago and told them I was worried as he was not a ahappu
Child and always tired and crying . Weeks later he stopped eating I took him to a and e and they felt an enlarged liver and did some
Bloods which showed anemia and started him on iron

Week later I called doctor as Zachary was still in pain in legs and tummy and very tired ( has suffered constipation and diarrhea the whole time ) and she advised that he had high white blood count and high crp

Referred to hospital on urgent basis after he lost half a stone on a few weeks !

Met with peadiatric doctor who said he did not want to redo bloods as he was anemic , Sent away and asked our Gp to do calprotectin test which has come back at 1480.consultant referred us on to Gi consultant who we seen last week and took bloods (no results yet ) and want to see him back in 8 weeks

My son has sever leg and tummy pain still , although the iron has helped his energy levels and pale complexion I'm not sure what the docs are waiting about for !

Can anyone help if they have had similar situations ?


Thanks so much

Big red

Yes now remember we're not docs but parents who want to help our kiddos.

But yes that's very similar to what my 3 year old had but all her test were normal, except for her scopes.
It's not uncommon to have juvenile arthritis (JIA) with a IBD.
Grace (who's 9 now) has JIA, also.

Every kids journey is different.
Once you find out the true cause then you can move forward.

I'll tag some parents
crohnsinct
mlp
Maya142
Pilgrim

Please ask questions. We're here to help.

Thanks so much for responding I'm feeling like I can't talk about it to my husband and family now as they are not as concerned as I am !

Can I ask how long it took for your daughters diagnosis? How long before endoscopy / biopsy etc ?


Thanks so much sxx

Unfortunately, that sounds like it could be IBD. The GI does not want to do more testing? To rule out infections at least?

There aren't that many things that make Fecal Calprotectin go up. It goes up if there is inflammation, either from an infection, from the use of NSAIDs (Ibuprofen) or from a disease like inflammatory bowel disease.

Fecal Calprotectin should be less than 50 in adults. It is higher in young kids, but your son's number 1480, would normally indicate a flare. Normally a GI would want to do scopes ASAP after seeing that. Especially in a child with anemia and stomach pain!!

I'm kind of horrified that he is making your son wait 8 weeks. Is there any way you can get a second opinion?

Thanks again

The GI doctor said he wasn't really going with calprotectin test even though I did remind him of just how high this number was ! They said they would rather try not to do endoscopy and just wait and see how he is in couple of months. I'm not to sure what my rights are with second opinion but do you think I should maybe get in touch with the consultant and say I'm
Not happy about it?

Thank you xx

Imstillbigred87 said:

Thanks so much for responding I'm feeling like I can't talk about it to my husband and family now as they are not as concerned as I am !

Can I ask how long it took for your daughters diagnosis? How long before endoscopy / biopsy etc ?


Thanks so much sxx

Click to expand...

My daughter got the flu at 3 months old and was never the same.
Her Gi symptoms showed then.
However, because her smile was bright and her test were normal, no one listened.
By three she had stopped eating and pain everywhere. Her first Gi did the scopes and the biopsies showed what was happening.
Dec. 12 at the age of 3 she was dx. A year later she was dx with Jia.
After dx she was placed on formula thru an NG tube (tube thru the nose ) This was so hard on us but it gave Grace all her nutrients. Its used to help the gut by letting it rest because the formula is already broken down.
Grace had other health issues, so her journey is different, like every buddy on this forum.

So sorry that your son is having such a rough time. My daughter was older (12) when she was diagnosed with IBD, but we had a similarly difficult time getting to a diagnosis. My daughter was having significant symptoms for about 6 months, but it was only at the point when she really started having a lot of pain, diarrhea, and losing weight that her pediatrician ordered a calprotectin test. The results came back really high, and I assumed that we'd see the GI right away, but the earliest available appointment was in 6 weeks.

We knew that there was no way that our daughter could make it 6 weeks, and within a few days, she was so weak and sick that we took her in to urgent care. The doctor there admitted her straight to the hospital, where we saw the GI, who ordered scopes and an MRE for later that week. The scopes confirmed IBD and her treatment started just a few days later.

So that's a long way of saying that if your son keeps getting worse, you should consider taking him back to his pediatrician or to urgent care. Even if they can't make a diagnosis, they will recognize the signs of a child who is very dehydrated or malnourished or in severe pain, and that can often speed up the diagnosis process.

I hope that you get a diagnosis soon, whatever it ends up being. It's very hard to wait while your child is suffering.

Imstillbigred87
I agree with pdx on the going back to urgent care or GP. If your son does have an IBD, it is such an invisible disease it is sometimes hard to get a diagnosis until the disease has become serious enough for Dr’s to look into.
We were in same position as pdx, with a 3 month wait to see a GI when we decided my son was too ill to wait any longer. We went to the emergency room and he was admitted for weight loss due to not eating, severe anemia and dehydration. Because his case was determined to be more critical due to the hospital admission, we were able to talk with a GI doctor within 24 hours. Even then, I had to push the doctors to do testing. They were hesitant but I knew he was very ill.
One thing I have learned is that you might need to be more insistent or a “squeakier wheel” to get through sometimes. One time I even consistently called the GI twice a day to ask if they had a cancellation that he could get in sooner (politely) :ybiggrin:. They eventually got tired of me calling and worked him in, lol.
…if your son does have an IBD…and others probably have better advice on this…but when my son is flaring, I don’t push him to eat solid food. I keep him as hydrated as I can and offer broth and Pediasure for nutrients.
I wish the best of luck to you.

Mom of I (17) diagnosed at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec

Thanks so much to everyone for sharing their experiences with me .

After noticing on a prescription from the GI doctor to GP they said diagnosis " constipation " I went into serious mummy mode ! I contacted my Gp who is going to back me up as I push for investigation ! The first paediatric doctor I seen has said he was referring my son to GI specifically for endoscopy because of the calprotectin level yet Gi says constipation ! Sorry for the rant just totally gobsmacked bout it all.


Over the last few days my son has become very tired again And is not eating as much and just keeps saying he's not feeling
Very well again!

I wanted to ask if any of your children ever played whilst lying down ?

His nursery had noted this the last time he started getting sick ! Instead of playing and moving around he will lie on his back or side and play on the floor ! It's so strange to see it's like he just has no energy to move !

I've contacted the consultant and he has given me a telephone appointment for Thursday so I will let you know what the result or that is !timebeing tho Zachary is not very well at all and if this continues over the weekend I will take him to GP again on Monday to see if she can push it forward and if all fails it will be a and e for us this week ,


Loads of prayer of health for everyone ,


Thanks

Wow. Your poor little guy!! He must really not be feeling well to lie down and play. That just breaks my heart.

Did they check recently if he's anemic? It sounds like he could be. I hope they are also checking iron studies - especially Ferritin.

My daughter had a slightly low hemoglobin with a VERY low Ferritin (iron stores), which is called iron deficiency anemia. In that case, you need to take iron - either orally or by infusion. My daughter could not tolerate iron supplements - they made her horribly nauseous and miserable. Plus her Ferritin actually fell further while she was on them.

She did really well with iron infusions - they worked like magic, especially for her fatigue (which was her major complaint).

Honestly, it sounds like your son needs scopes ASAP. I REALLY hope the GI consultant hurries things up. They can always admit to do urgent scopes (at least in the US).

Thnks so much for your information ! Zachary is anemic and is already on iron supplements.i just received his blood results which stated that he is still iron deficient so will continue on the iron .


He's getting sicker! Sweating bad and crying with pain in legs and tummy ! Doctors tomorrow but will take him to emergency care if he gets any worse ! He's so grumpy too.


Your advice and words are appreciated so much

Imstillbigred87
I understand your frustration. As I mentioned in a previous post, our first GI doctor diagnosed my son with GERD, and would not look any further. Constipation was also a problem for my son.

It did take a 2nd opinion from another Pediatric GI to get a diagnosis.

As to the playing while lying down, I'm no doctor, but that could be a symptom of an IBD or even celiac disease. Before diagnosis and medication, my son was exhausted all the time. He slept a lot and didn't feel like doing much more than watching TV most days He would try to get up and do the things he found fun, but I could tell it was all he could do to get the energy to get off the couch. He was very anemic and not absorbing nutrients well.

Hang in there and keep trying to get through to the doctors....

Mom of I (17) diagnosed with Crohns at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec

Imstillbigred87 said:

Thnks so much for your information ! Zachary is anemic and is already on iron supplements.i just received his blood results which stated that he is still iron deficient so will continue on the iron .


He's getting sicker! Sweating bad and crying with pain in legs and tummy ! Doctors tomorrow but will take him to emergency care if he gets any worse ! He's so grumpy too.


Your advice and words are appreciated so much

Click to expand...

I don't even have a kid and this bothers me.
It has been 6 days. How is your son doing?

This is my 1st post so I apologize if I am not posting in the correct way. My 3 yo daughter had a 10 day lower gi bleed with diarrhea mid march and we saw a pediatirc gi specialist who stated since my daughter had a moderate amount of wbc's in her stool that IBD was a possibility, but it could also have just been some sort of viral infection (even though all her labs were normal aside from her ESR).

Fast forward to now and my daughter has had a week of stethorrhea and last night she started with a straw colored bm. I am trying to get some labs ordered to check her liver function. She was up crying between 2 and 3 am from pain.

Since march, she has complained of several tummy aches and wakes up out of her sleep from pain occasionally. Anyone have similar experiences?

Waiting for the doctor to call and i am getting frustrated because I don't feel like the medical community takes her seriously because she is only 3 and in between episodes of being curled up in the fetal position with tears, she is still a bubbly 3 year old.

Was the pediatric specialist a GI? You really need a pediatric GI. Preferably one at a major teaching hospital with a focus on IBD. Most ped GI's will still take a 3 year old seriously. There are enough kids with VEO IBD (Very early Onset) out there and plenty of studies and presentations at conferences etc that they should know it is a possibility.

The virus or infection theory could be correct. But since her issues continue, I would say it is probably time to investigate things further.

Pale stool does not necessarily mean IBD but does point toward a bile salt problem so your desire for liver panel makes sense.

I would also be looking for a fecal calprotectin test. Elevated levels (keep in mind for a 3 year old their "normal" levels are usually a little higher than older kids) would point to ongoing inflammation and might get some attention. Although, even an infection would have raised the fecal cal but maybe it has been enough time?

Poor kiddo. It is hard enough for an adult, even harder fora kid but these young ones really have it rough.

You know your child best! Keep advocating for her! We are here for you if you have any questions or need a sounding board.

P.S. You could go to the parents sub forum and start your own thread. It might get more looks there and it makes it easier to track responses and keep track of everything that has been going on with her.