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Crohn's Disease Forum

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Hi everyone - sorry Ive not been on in a while - I normally get emails when a thread im subscribed to gets a post but I haven't been getting them - I just assumed everyone was doing really well!!!!
So my question today is how does everyone cope when their little one is in pain and there is nouthing you can do about it?
Today Freddy's pain was building up all day - he couldn't sit down in the buggy on the way to school pick up and had to crouch on his feet in the seat, then during my older children's swimming lesson he was screaming (proper screaming) owww and sore mummy (even though I had already given him paracetamol) ended up not letting anyone touch him and sobbing in the corner (cue comments and looks from other parents). He is dairy and wheat free, and low sugar home cooked (except this luchtime we were out with friends and had an unhealthy treat - coincidence??). His bad pains last 2-4 hours so I know they will end but I just don't know how to deal with it - when he is bad paracetamol, wheat bags or distraction just dont help, when I wipe his bottom at a nappy change its like I am using sandpaper and by the end we are both in tears! - is there a nappy cream you can get with lidocaine or something in it?
The GP says there is nothing that can be done
I have a medical herbalist coming to see him on Friday and out next GI app is a week on Friday - the diarrhoea is back but no blood - if he had rectal probs would there not be blood?
 
Poor Freddy and poor mama. Any barrier cream is better than nothing. When Jae's bum was bad when she had rotovirus I actually used Silvadene cream (made for burns). Hopefully someone else has more recent experience with this as I have not had to deal with that for 12+ years, thankfully. I know from personal experience how miserable a sore bum can be though and I feel for him. Personally when my bum is bad, the only thing that relieves it is a shower... Jae's Crohn's has never shown blood, but she doesn't have rectal disease. I'm sorry Little Freddy is still suffering. I know there are lots of us out there trying to cope with dealing with littles who are suffering. You may want to post on the Parents and Carer's Support group... (Look in my sidebar).
 
we use calmospetine but per derm anything with plain zinc oxide will work plus lots of "air" when ever possible.
since he is in nappies
can he sleep at night on an open diaper?
You can roll a towel or get a "doughnut" for him to sit on to take the pressure off his bottom. ( rectal prolapse trick)
for pain that won't go away BTDT- lots of hugs- back rubs. I would let him "play" doc with his stuffed animals and see if he can fix them when they have pain -maybe he has an idea of what would "help".

there is also a stomach massage - counter clockwise which can "help" a little - follow his cues-
we also got a tens unit- which took the edge off.- not pain away.

what meds has the gi given and what do they say about this constant pain??
 
I tried the 'air' thing and put him in pants this afternoon - cue moping up wee all afternoon!! He still couldn't sit down this morning but seemed much more perky this afternoon - quite happy playing with his cars (when not weeing all over the floor!!).
MLP - Normally tummy wheat bags, or rubs, plus paracetamol plus distraction does the trick with his pain but I think sometimes when its low down nouthing helps, he can't walk, sit, if I pick him up it hurts so often we just stand (well I crouch) and hug! He is on no pain meds - our GP said 'it's just colick, he can't have buscopan until he is 6' - In other words - man up!!
I love the playing Dr's with his toys idea! and I think carolin suggested a shower - he is not keen on the shower and we don't have a bath but thinking about it maybe I could fill a large basin or trug with water and he could sit in that for a bit - I think it's worth a go!!
Thanks guys!! xx
 
Sending loads of love and squishy hugs to you and little guy Suzysu...:ghug:

Calmoseptine is a very good cream for nappy rash. Alternating with something like Ungvita is also helpful. I'm not sure that either of those is available in the UK though but there should be something equivalent.

Sitz baths are also good. A bowl will work just as well or even a larger sink like a laundry tub.

Thinking of you both! :heart:

Dusty. xxx

PS. If you can't source good alternative creams I would happily send you a tube of each to see if they help. Just PM me. :)
 
I'm so glad I found this forum! First of all, ALL of you are in my prayers for what you're dealing with. Would love to have your insight on my daughters situation.

At 8, after a year of no growing and a lifetime of tummy troubles (constipation and constant stomach aches) she was found to be severely anemic and required a blood transfusion. We did this at Hopkins where they also scoped her and found evidence that was "murky but suggested Celiac" plus she has one of the two genetic markers.

Went gluten free and her belly improved unless she got "glutenized" then she'd be violently ill.

3 years later her iron levels were bottomed out so I pulled her out of school to homeschool, carefully watched her food intake and got her pretty healthy and well. A year ago after fighting a virus and not getting well her hemoglobin was dangerously low. We met with a hematologist at Hopkins and began weekly IV iron infusions (she can't tolerate oral iron supplements.) This appeared to be a miracle cure. She blossomed, had a ton of energy and just felt great. She decided in September she wanted to go to high school with her friends and life was good.

IN October she started feeling tired and picking up every virus around school. Lo and behold her iron levels had bottomed out AGAIN. So we started another round of IV iron therapy in January. Except this time the fabulous results didn't come. She got the stomach flu in mid-February and basically never recovered.

We saw the GI team at Hopkins almost 2 weeks ago. The dr. is hoping that she has an undetected bacterial infection and recommended an antibiotic and probiotics with the request to call her in two weeks and if unchanged we'll start looking at doing another scope. So, first antibiotic just made her worse (flagyl), and yesterday the nurse called in a prescription for Cipro. Still no improvement.

Her symptoms - constant pain, mostly lower abdomen, with occasional sharp "stabbing" pain in left abdomen, frequent bowel movements ranging from watery diarrhea to yellow, mushy ick (probably going about 10 times a day, as opposed to her old normal of 2 times a day.) She also reports frequent lower back pain and knee pain. I would never have connected the knee pain but was floored at the number of you that shared the knee pain symptom. She's also got almost constant nausea.

In addition to being gluten-free I've removed all dairy, corn and soy from her diet, but it's made no difference. It currently seems like each day she gets just a little worse than the day before.

As for family history, my mom has Crohn's and I was diagnosed with irritable bowel years ago (though it mostly disappeared when I went gluten-free.)

Any insight, suggestions and support would be much appreciated. This is so frustrating! We've presently missed the last 3 weeks of school and my hubby is ALL over my case for not pushing her more to get to class. It's kind of hard when she's either doubled over in pain or can't get out of the bathroom.

Thanks in advance!
 
No advice from me as I think your much further down the path than we are. Just wanting to say welcome and express my support. So how long is it before you get in touch with the doctor again? I hate the waits between appointments when things don't seem to be working (or feel like there going worse), it's just awful trying to keep your head above water.
 
Thanks for the welcome! My doc is pretty accessible via email so I emailed her this morning and asked if there is anything we can do for the pain. Tums is it. Which is doing nothing. SIGH...Aside from that I'm supposed to report to her next Tuesday at which point we'll decide if the antibiotic treatment worked or if we need to do the scopes.
 
Have they at least done imaging ??
I am surprised they are waiting to scope...
Any stool tests prior to starting the abx?
I would look to DuPont or CHOP for a second opinion Gi ASAP.
She has been suffering way too long.
Second set of eyes doesn't hurt and may even help .
DS has been given numerous types of drugs to help with abdominal pain even when they thought it was "just Ibs " in nature prior to crohn's dx.
Never has anyone just said take tums ...

Hugs
 
My daughter was given Hyoscyamine for IBS-like symptoms (stomach cramps, diarrhea, headaches, etc.). It did not help her but it was worth a try. Her GI also mentioned trying Neurontin if her pain continues. I definitely think there are more options for pain besides Tums, but I would also be wanting to get to the root of the problem if I were you. Be persistent!
 
Thank you for the response!! She did have stool cultures, no bacteria found, but they felt antibiotic therapy could be warranted since this round started with a virus. No other imaging has been done. It was the nurse practitioner that said to take Tums. And responded that the antibiotics should reduce the pain. My thought to that was "if it's indeed a bacterial infection antibiotics MaY reduce pain, but if it's not...antibiotics won't do a thing...right?"

I'm not familiar with DuPont or CHOP....but I agree that finding another practitioner may be a good idea. At the least it can't hurt. We really like our team at Hopkins so far and she said she opted for antibiotics first before scope because she was hoping to go least invasive first. Clearly antibiotics don't seem to be the answer right now.

Do you hear the sound of my head banging against the wall over here? I'm sure ALL of you do! Not that I take any joy in what you're all going through, but it sure feels good to be somewhere where people understand what this is like. Thank you!!!:ybatty:
 
Thank you, DanceMom! Now that you mentioned Neurontin I remember being on that myself when my IBS is bad. Her pain is so bad she cannot make it to school for even one hour. Something has GOT to be done. I guess I need to get my big mama bear pants on and start getting aggressive!
 
Has anyone tried anything that is effective at relieving IBS pain? Sooo frustrated here as dd has been in a bad pain flare up for weeks and nothing we try relieves it. Aaargh. She keeps saying she wants to go to ER, which usually she tries to avoid. The last few days Miralax doesn't seem to be as effective either. Was on toilet for an hour before she produced anything and was crying in pain.
 
Cmoss

Gather from your posting that your daughter has anemia caused by low iron. We treated my daughter's anemia for 3 years prior to dx.

We allowed a gp to advise us the only further test he could do was a colonscopy but the test was too invasive for someone so young (she was 16 at the time) so it was not done at the time and instead she was dx her with ibs.

Keeping pushing for answers.

Ps ibs should not dx when anemia is present as per GI:ybatty::ybatty:
 
You want to go to another hospital for the second opinion.
This will truly get an independent opinion which is what she needs.
Dupont would be close if your at hopkins and CHOP is in philly .
CHOP is #1 in the country for their ped GI program.
most 2nd opinion take a while so start the process today ( it can be as short as two months or longer).
YOu can always cancel an appt is my theory.

DS had his first upper scope at 6. Upper and lower scope again at 7 and 1/2 when he was dx.
you know your kid best so push for answers
 
Welcome CMoss!

I agree with MLP! With your family history and her continuing problems, a lot could have changed in three years since her scopes. Keep pushing and good luck!!
 
Welcome Cmoss :)

We're glad you found us too, but sorry you have the need.
I also agree with MLP in getting a second opinion if the team at Hopkins does not schedule scopes quickly.
This rollercoaster of pain and feeling unwell isn't good emotionally for your girl either - how is she doing with friends and activity outside of school issues?
:hug:
 
Crohn's Mom - she is starting to become depressed, not surprisingly. She's not feeling well enough to attend school (been out for 3 weeks now, fortunately the principal is amazing and is working with us), missing out on her favorite activity of theater and just missing being a teenage girl and hanging out with girlfriends without much of a care in the world. It saddens me!

My Little Penguin - do you know much about Children's National Medical Center in DC? I only ask because that's even closer to me and I have two friends that have recently had their kids there with Crohn's and suggested that I take Mandy there. Wondered if that would be a good place to get a second opinion or if you know that CHOP or DuPont would be even better?

At this point, as you all well know, I just want her to feel better!

Thank you, thank you, thank you for the information and support!
 
Also - just as an aside here, the doc at Hopkins said she wanted to treat with antibiotics first and NOT scope because Mandy's CRP level was normal and sed rate was not high, which indicated to her no inflammation.....I know from a little bit of digging I've done that not everyone with IBD shows on the lab markers. I wondered what your personal experiences with that have been?
 
My daughter always has normal labs too and that did delay her diagnosis. Our GI described it like this - enough pieces of the puzzle have to match up to make a diagnosis of Crohn's. My daughter has genetic markers that indicated Crohn's (Prometheus Lab), an MRI and x-ray that showed inflammation in the small intestine, scopes with biopsies that showed non-specific inflammation in small and large intestine, a pill cam that showed rapid transit and at least 1 ulcer in the small intestine, and a biopsy that showed erythema nodosum. She also seemed to have a growth disorder, chronic diarrhea and stomach pains, and most recently had bloody stool. Per GI, her chart wasn't a "slam dunk for Crohn's", but enough pieces fit together to finally make a diagnosis. I think the key is finding a doctor willing to take the time to put those puzzle pieces together.
 
That is a very good way to look at it DanceMom! And that is exactly the thing -- finding a doc that will put the pieces together. I already "fired" one of the Hopkins GI docs when he told me in January that 1- he found it hard to believe Mandy really did eat gluten-free, 2- there was no evidence at all to indicate Celiac from her scopes 8 years ago (when I knew otherwise) and 3- genetic markers don't mean a thing.......I complained to my hematologist, who was trying to work every angle he could to help us diagnose without stepping into GI territory (funny - my Hopkins hematologist recommended UMD for GI care....) So when we saw the new doctor at Hopkins, who happens to be the chief of Ped. GI there, the first thing she says is "I see her biopsy showed non-specific inflammation & evidence of Celiac but it was a bit murky". She seemed much more open to "exploring" and did say that if in two weeks time antibiotics did nothing we'll plan to do scopes. Her reasoning - talking to my daughter, was that my daughter was terrified of going through another scope and this doc said "let's try the least invasive treatment and see if it works, but if not we WILL need to do scopes." When they did the genetic markers years ago they only did Celiac, not Crohn's. This coming Tuesday will be two weeks, so we'll see how quickly the doc will move on the scopes. In the meantime I'll also follow MLP's advice and start lining up a second opinion somewhere else. Just trying to decide on where -- I was already torn between UMD and Children's in DC, then MLP threw in CHOP and DuPont....where to go?
 
Catherine, your post got buried! Sorry I did not respond quicker. Interesting about the anemia/no ibs dx. I had no idea. It sounds like we've had quite similar backgrounds with our kids. Thank you for the information!! These docs are enough to drive us to the looney bin;)
 
My son's labs were completely normal at dx, but colonoscopy and endoscopy visually showed otherwise. Biopsies confirmed his Crohn's (and Celiac). I like DanceMom's doctors approach of putting the puzzle pieces together. Totally makes sense!

I think there aren't (or shouldn't be) any hard and fast rules for pediatric Crohn's. This disease is just too unpredictable.
 
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honestly I would try for the second opinion at chop- if your going to go you want to go somewhere they see hundreds of kids like your child not just a few
even if you end up scoping at hopkins-point being when a kid doesn't show classic signs everyone questions well it could be .....
we still see our first gi but had 2 second opinions since Ds is not a classic case.
our gi liked having a new set of eyes look at the charts and tests etc...
it also helped us with meds etc.. since meds are scary and you really want to be sure what you are treating.

good luck.
 
Welcome cmoss -
My son has been to the same doctor at Hopkins ... for his 4th GI opinion. I agree with MLP ... schedule the CHOP visit so you have it in case you still do not have answers and treatment from Hopkins by then. Can your school send tutors to you home so your daughter will not fall too far behind? I fully support your daughter staying home when she feels so poorly. My son ended up needing 3.5 years of home tutors but has been able to attend high school this year (10th grade). Is your daughter in 9th or 10th grade?
 
Hi cmoss and big hugs for you and your daughter - If this second lot of antibiotics isn't working I think I might push for the scopes especially with your family history, and with her being so anaemic - it all sounds a bit suspicous - I really hope she recovers soon - let us know how she gets on xxxx

We had our GI app today - They think Freddy has proctalgia fugax and anal fissures and are putting him on glyceryl trinitrate and movicol - anyone have any experience of this? Everything I've read about it so far suggests the pain only lasts a short period of time, Freddy's tend to build for days and then the severe pain lasts for hours so I'm not sure but will give the new meds a go!

I hope everyone is well - I don't seem to be getting the email updates so am out of touch with everyone!! xxxx
 
I didn't get to see all the recent posts until I posted the above - sorry if its a bit out of date now!!!! xx
 
Hi all,newbie here. Basic history i have been constipated since i was 6 so that's about 26 yrs of it,my partner is awaiting colonoscopy results for rectal bleeding & diarrhea, my 11 yr old is constipated too and has been on movicol for yrs,now my 6 yr old is having problems. He's the one i'm here to discuss,i'll discuss myself and my oh on another thread. So he's 6, constipation from birth,put him on a comfort formula and he started going a bit too much,horrible runny nappies a couple of times a day. His growth was always fine/above average. In the last 4/5 months he's been having a lot of issues,he's pale,tired all the time,would sleep 14/15 hrs a day. Constantly complaining about stomach pain and pain in his legs/feet. Going to the toilet a lot but sometimes constipated. Just after christmas he developed a spot on his face and started vomiting,it quickly turned into an abscess with a high fever (40 deg),he was on antibiotics and it went down. A few weeks later it popped up again and had to have more antibiotics. It's still visible on his face but it's 'down' at the moment. His bum is often covered in red spots and he's constantly itching it. Our doctor is very laid back and for ages said it was anxiety issues,won't do anything about the spot on his face til it's been there a yr and after 3 mths reluctantly agreed to do bloods,iron levels only. His iron level was fine but the iron stores were low. He eats meat every day,drinks lots of water,eats lots of fruit and has fibre every morning so has a good diet. I feel there may be something going on like crohns but not sure how/where to push and if it may be nothing at all and i'm just being over anxious? Any thoughts/advice appreciated,thanks :)
 
mum2boyz - you know your little guy best and it certainly sounds like there could be something going on - you just have to keep pushing your GP (I hate to say it but breaking down in tears often helps). Surely they did a full blood count and tested his white blood cells at the same time not just the iron levels?? I hope you get some answers soon.
 
Just a though could the red spots on his bum be trush?

Try and get a copy of his blood test results.

Sorry you had to find us.
 
Hi mum2boyz! I don't think you're being over anxious! I think that doc needs to get off his arse and do something for him! If he won't, I hope you find another who will! Good luck!
 
Cmoss, has your child had a fecal calprotectin? It is fairly specific, not invasive, and shows inflammation in our child when all the other labs are negative.

Mum2boyz, I'm wondering about MRSA or a systemic candidiasis for your dear child. Sounds like he is too miserable to stick with a doc that is too laid back to pursue diagnosis and treatment. I'd get a second opinion...
 
Thanks for replies,
I do give out regularly about the doc but she is local and convenient,time to branch out i think! I checked him again this eve and still loads of red spots,will certainly get him checked for thrush,it hadn't even crossed my mind tbh,will update when i find out more,thanks again x
 
First off, thank you all for the overwhelming support and second, I apologize for disappearing. Between work and computer problems I was able to access via my iphone but it was too cumbersome to reply that way!

Mandy has not improved but the good news is she goes tomorrow morning for her colonoscopy/endoscopy at Hopkins. I'm on that fence of wanting them to find something so we have a diagnosis and direction to go and not wanting them to really find it. I know you ALL know what I mean!

If there's any words of wisdom you experienced moms can share, I'm all ears. She had one done when she was 8 years old, but that was 7 years ago!

I will say that I had to call the nurse today regarding her bowel cleanse. Instructions were to take 4 dulcolax capsules at 8am with lots to drink then at noon 8 capfuls of miralax mixed into 64 oz of beverage of choice. Call if bowel movements are not clear by 4pm. Well, at 11:45 her bowel movements were clear diarrhea...crystal clear. The nurse said she'd never seen such a quick cleanse before but based on that to go ahead and do only 1 capful of miralax with 8oz fluid to be sure she's done and keep drinking rest of the day. Any insight into the quick cleanse? Mandy just laughed and said "Will I ever have a doctor or nurse NOT say "well that's unusual" about my test results or symptoms?" Poor kid.

The biggest complaint with her right now is the pain. Constant across her lower abdomen sometimes pretty bad in left lower side. She's also complaining of a lot of lower back pain. Still having frequent (about 10 times a day) bm's. Loose but not diarrhea. No more blood that I've seen.

Keep us in your thoughts and prayers tomorrow. I will most definitely post here with the doctors feedback! And yes - I am lining up her second opinion...waiting for my husband to give me the go ahead. He wanted to do a little research of his own.

I hope everyone is doing well!
Christy
 
My 10 year old (undiabnosed) has a colonoscopy/endoscopy tomorrow morning, so can totally relate to both wanting them to find something (I'm leaning that way, as he's so thin) and hoping they won't.

We are having the opposite experience in terms of prep. Things are going very smoothly, I suspect we are going to have a dreadful night, hopefully it will kick in at some point during the night cause otherwise I guess will have to be rescheduled.
 
Maree, good luck with the cleanse! I hope it kicks in for him soon. The last thing you want is to reschedule! My daughter is - and has always been - really thin, too.

Be sure to let us know if you do make it in tomorrow!

Christy
 
Christy, Maree, Mandy and Liam - thinking of you as you prepare for the scopes tomorrow. I hope the findings are reassuring and fixable! Your children are in my prayers.
 
Thank you everyone! Well, scopes went well. The doctor said there was nothing that he could see visually that indicated Crohn's or Colitis. No signs of bleeding. But he also cautioned that we would know for sure until biopsies come back, which is another 7-10 days. Meanwhile she's still in pain. Even came out of anesthesia complaining of the pain in her lower left side. For you experienced and uber knowledgeable in the group does a visual study via colonoscopy truly rule out Crohn's? I know they're now leaning towards diagnosis of IBS. Clearly I don't wish Crohn's or colitis on her, but don't want it to be missed, as I hear of so many that go through that!
 
Nope - DS had a visually good colonoscopy
Horrid biopsies

Other here had normal upper lower scopes but only pill cam showed it.
For others the MRI showed it.
There is no one test that can rule it out .
But lots that can rule it in
Good luck
 
Same here cmoss....Grace had "clean scopes" and the GI send us on are way. I got the call the NEXT day about the biopsy results and he (GI) said their was damage at the microscopic level.
 
I think the biopsies will show more. Will your daughter have a pillcam or MRE? For us the final test was the pill cam 9 days after the upper and lower scopes showed inflammation and ulcers throughout.
 
As parent with Crohns, I am always told that over caution with my children but my middle daughter suffer with mouth ulcers, developing curve in her spine, Acid Reflux and had three accidents sort made to toilet at home with linger stomach pain beneath her belly button and get bad then need loo but had D.

I am planning to get her see GP and get blood test Cealic it run the family.
 
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Josephine, I'm sorry to hear about your daughter. Having Crohn's opens our eyes to lots of symptoms, doesn't it? I hope you're wrong and this is just a fluke, but sounds like it is definitely worth checking it out.
 
CarolinAlaska said:
Josephine, I'm sorry to hear about your daughter. Having Crohn's opens our eyes to lots of symptoms, doesn't it? I hope you're wrong and this is just a fluke, but sounds like it is definitely worth checking it out.
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Hi, I hoping at I am wrong but something inside is tell me that I am right.

I have just spoken to her, she still has stomach pain and two ulcers.

I wish it was weekday so GP Surgery was open.
 
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Hi there, I'm mom to Jake a very loving little 4yr old. Jake has had health issues since birth. A skin biopsy revealed Mastocytosis at age 9mo,asthma,gerd,sleep apnea,severe restless leg syndrome, disaccharide malabsorption, vit d def, and anemic. Poor growth, and belly pain and diarrhea daily. Positive blood in stool, positive lactoferrin, negative for infection or parasites, colonoscopy and endoscopy scheduled for June 10.. Any thoughts? Looking for answers, does positive lactoferrin always indicate IBD?? Hope all these kiddos get answers.
 
Hi Forjake -
I think a positive lactoferrin could results from any cause of inflammation, infection included.
Good luck with the scopes. Is Jake on a special diet now?
 
Jake is on a histamine free, dairy free, gluten free diet since about nine months. He is negative for infections and parasites as well. Hopefully scopes will give more info/ answers. :eek:/
 
Is he on the usual masto cocktail ?
H1 /h2 blocker plus mast cell stabilizer ?
Hope the docs figure it out and they get him back to being a kid
 
Hi everyone! Hope you all had a nice holiday weekend with not too many tummy upsets (at least for those in the US).

I did hear back - fairly quickly, actually from CHOP. She is scheduled to meet with two doctors there on Mon. June 24. Only one of the doctor's names is listed on the CHOP site and I couldn't find much info on either of them via a web search. Dr. Lyndsey Albenberg and Dr. Melissa Kennedy. Albenberg is a DO, which I thought interesting.

My poor girl is still in a lot of pain so I'm praying that there will be some sort of relief between now and then. The school is being great working with us to get make up work done. Thank you all for your support and advice!
 
Hi I am new here and have been reading some of the post about your children. Some sound very familiar whilst others different, but I totally understand your frustration, concern, care and distress for your child.
My son two years ago started vomiting daily and having terrible tummy pains. They took out his appendix. He still continued to vomit but took some flagyl and felt better and then had a endoscopy and showed nothing. He was then diagnosed with over growth of bowel bacteria. Still felt sick and we had an appointment with his allergist as he has had an anaphylaxis attack with kiwi fruit. She did skin prick testing and came up positive for dairy. Strange at the age of 10 with no previous dairy allergy.
He was fine for 6 months and she did a milk challenge and failed really bad and she thought he had FPIES to dairy.
His tummy was never the same again. He had continual vomiting especially at night, constant diarrhoea and constipations and nausea. Took him back to ped dr and then to gastro and tested again for bowel bacteria but it was negative. Gastro told him he was making it up and wanted him to see physiologist. Never went back to him again. Saw another ped dr and he diagnosed chronic constipation and put him on laxatives. He felt better but this gave him more pain. Had to wait six months to see new gastro dr. He had an X-ray which showed inflammation in colon.

New gastro dr endoscopy and colonoscopy the next week. He found proctitis in his rectum. He had three weeks of suppositories and felt a little better but not fully. Back to gastro dr as still had alternate constipation and diarrhoea, so he put him on new diet - FODMAP. Which is basically boring and plain food.
After being on this diet for six week, he really isn't any better, but has two stools with mucus and some blood when wiping his bottom.

He sees gastro dr next week, so have to tell him these new symptoms. I think me proctitis is back. Gastro dr is concerned it is early stage Crohn's disease and will send him for MRI to rule it out before making any diagnosis. If it isn't Crohn's disease then it could be ulcerative colitis or just proctitis.

So he is undiagnosed at the moment and it is very frustrating coz he doesn't know what is wrong with him.

Does anyone have any ideas or advice for me?

Thanks
K :)
 
Oh I also forgot to say he is now vitamin b12 deficient since march and previous bloods in November were fine. I wonder if it was more from laxative use rather than malabsorption ? I will tell the gastro dr next week as he has been on holidays. My son now also has an enlarged thyroid goitre and needs an ultrasound next week and bloods before we go to gastro dr. My son is over being poked and prodded and just wants to know what is wrong. Thanks kathie
 
Sickboy11 said:
Oh I also forgot to say he is now vitamin b12 deficient since march and previous bloods in November were fine. I wonder if it was more from laxative use rather than malabsorption ? I will tell the gastro dr next week as he has been on holidays. My son now also has an enlarged thyroid goitre and needs an ultrasound next week and bloods before we go to gastro dr. My son is over being poked and prodded and just wants to know what is wrong. Thanks kathie
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Hi Kathie, sorry your son is so sick and not getting answers. Faking it? Really? Sheesh! My daughter hates all the poking and prodding too, but seems to be taking in now much better with her diagnosis.
 
CarolinAlaska said:
Hi Kathie, sorry your son is so sick and not getting answers. Faking it? Really? Sheesh! My daughter hates all the poking and prodding too, but seems to be taking in now much better with her diagnosis.
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Yep that's what the head gi said at the local kids hospital said and so did a ped dr. Anyway on another thread another lady said about doing a fecal calprotectin stool sample so will as my nice gi dr and he will prob send him for MRI for suspected crohns as the diet hasn't worked and still get constipated and has breakthrough diarrhoea and other times four times a day of diarrhoea.

Being on the special diet really hasn't made much difference except now seen mucous and spots of blood when wiping.

The problem is that he sees the gi dr next week which is great but the week after he goes away for two days and just one night for school. Don't know how he is going to go to the toilet and then then will have to wait 20minutes for him whilst he goes to the toilet.
Did your daughter get put on the nutritional drinks or just meds?

Hi Gi dr really suspects the early stage crohns so I don't want him to miss it if he does have it, but fingers crossed its only proctitis.
Thanks for your help and support :)
 
Hi Sickboy11
I was wondering if the scopes showed any other changes to the GI track. Even if it was on the microscopic level. Did you get a copy of the reports?
Does your boy have any other problems? Like skin, joint pains or vision? Not that you have to have these but they might help fill in the picture.

Also I saw in your other thread that he was on pred suppositories for awhile. Was he off of them for the scopes? If so for how long?
 
Hi,
The biopsies only showed the proctitis even though a simple X-ray taken before the scopes showed inflammation of the left side colon and only left a small amount of room for the fecal matter to pass through. He went through them but I didn't see the paperwork he just said that this had shown up in his rectum. On the day of the scopes he showed me photos of his rectum and its all red and sore with spots and bruises and bleeding under the lining.
I suspected UC but he is more leaning towards crohns.
The prednisone suppositories were given after the scopes after the dr saw the proctitis. Before the suppositories he had a lot of joint pain like knees and ankles and this went away after about a week on them. I had just put it down to lack of calcium being dairy free due to positive skin prick test the year before. He has some vision problems and needs glasses at times but he refuses to wear them.
Today he had four diarrhea poop. He hasn't lost weight but prob put on a bit and has grown a little bit so I know he isn't as bad as some other kids but he is exhausted and tired and imagine having like gastro or food poisoning day after day. Not nice for anyone and I know lots of people suffer poor things.
Will just have to wait to see gastro next Friday.

Thanks for your help :)

Kathie
 
Good afternoon, everyone! Needed to vent a bit and thought I'd update as I'd not been on here in a while except to read and lurk on work breaks.

We got into CHOP (thanks for the push on that MLP) and the doctor immediately said we can't rule out or diagnose anything until she has a pillcam. The CHOP doc said she knows the Hopkins doc, so for logistical purposes it made the most sense to do the pillcam at Hopkins with the CHOP GI consulting on it. She emailed me the order, I forwarded this to my Hopkins doc who won't budge until she has the full transcription report from CHOP. So while we could have scheduled the pillcam last week and maybe completing it this week, Hopkins is posturing and still refusing to schedule. I'm so fed up with Hopkins!! Meanwhile the daughter is STILL in terrible pain. CHOP did give her an RX of Levsin. She said she notices maybe a tiny bit of relief from it but then it seems to get worse, almost like rebounding pain. Fabulous. The CHOP doc did agree that with the chronic, long-term and yet-to-be explained anemia coupled with the abdominal pain and frequent loose bm's it really sounds like it could be Crohn's THOUGH my alarm bells did go off when she said this pillcam will either confirm it or completely rule it out. I keep remembering everyone here saying nothing really rules it out....Thank you all for being such an incredible source of information! I was able to go into that CHOP appointment armed and ready with questions. I'm thinking at this point we'll get this test done with Hopkins and then probably try to get in with a GI doc at Children's National Med Center in DC to see if they take our issues more seriously.
 
One thing to consider - is it that your insurance won't cover the pillcam?
Some times the stall is due to "working out" the insurance side even though
Most wont say that until they are sure - insurance won't cover it.
Btdt with humira .
It took a while to get it approved but our Gi didn't want us to worry about it until they were sure either way.
I know pillcam is not covered for us and it took 6 weeks for the insurance to get back to the doc to tell them this .

Good luck and keep pushing
 
I'm sorry that it seems like you are working in molasses! I hope that one of the hospitals will get the thing scheduled so your poor daughter can move forward! Hugs to both of you!
 
My son is waiting on the Pill cam he has a Diagnosis as of 2006. But insurance wont cover Pill cam till an x-ray is done. He has constant infections due to his Crohn's. I read the Chronic Mono-and heard that for years with him. They even thought it was his heart. So many test no answer's. Then the answer came and Doctors still dont get it. Last episode was a few days ago-Heat stroke and an Infection. First Hospital decided to do a Spinal Tap on him even tho he was delirious and did not even know who his wife was.Now At the hospital where all his doctors are and they are attempting to repair the damage done by the spinal tap. My advice is to not accept what a doctor or Hospital tells you unless you are confident that they are the right Medical for you and your situation. I get Angry at Doctors who do not listen. And today my son is suffering for it.
 
Oh my Tonysmom...:ghug:...your son sounds like he has been through the wringer and more! :(

I hope he soon over this latest episode with the heat stroke. Good luck!

What is going on with his Crohn's?

Do you want to start a thread in the main section of the parent's forum and let us know what has been happening?

Dusty. xxx
 
(((Hugs))) Tonysmom ,

How's he doing today?
It's so hard seeing our children suffer no matter the age ...


HD
 
So after seeing the GI dr again and he is unsure what is happening as my son as he putting on weight but has flares of diarrhea up to 7 times in a day. He is suspecting irritable bowel but is concerned of the b12 deficiency and even after injections it is not stabilising and goes back down. He said to try Metamucil and see if that helps with bulking the stool and hope won't cause constipation. He also said he might rescope him in September when we see him again. He can't do the capsule camera as in Australia he needs to be anaemic to qualify.
So we are stuck again and not knowing what is wrong. How can a child keep surviving doing this many diarrheas in one day and become dehydrated. My heart goes out to any kid that has to live with this lifestyle.
Does intermittent diarrhea like every 3 days once or twice and then three or four days of worse diarrhea sound familiar or could it be irritable bowel?
 
Hi Kathy,

Sorry to hear your boy is still suffering. :( And also sorry that I missed you earlier on, I was off the forum for a couple of months.

Just a couple of questions:

Has he had the MRI?

Has he had a Faecal Calprotectin done?

Since Proctitis is a less severe form of Inflammatory Bowel Disease I think we need to rule that in and if IBS is playing a part in it then it is over and above the IBD. Diarrhoea was not a feature for my two so I have no experience with that aspect of things, sorry.

I can think of a few things you can do that may help point the docs in the right direction:

Do you track and document his symptoms? If not have a look at these suggestions that I have lifted from the wiki:

PAIN
*Where is it located.
*What is it like - stabbing, ache, constant, intermittent, etc.
*Rate your pain on a scale of 1-10, with 10 being the worst pain imaginable.*(see comment).
*Was there anything you did that relieved the pain - medication, hot packs etc.
*Was there anything you tried that didn't work.
*Is there anything that the pain stops you from doing - standing up, walking, sitting, etc.

OTHER INTESTINAL SYMPTOMS
*Is your stomach noisier than usual.
*Are you producing gas.
*Is the gas offensive.

STOOLS
*How often do you go.
*How much are you producing each time.
*What does it look like.
*What consistency is it.
*Is it offensive smelling.
*Is there any blood or mucous.
*What colour is it.

DIET
*Are you following a diet or have you eliminated any foods from your intake.
*Are there any foods that make your symptoms worse.
*What is your appetite like.
*Does your appetite fluctuate.

WEIGHT
*Are you losing, maintaining or gaining weight.

OTHER SYMPTOMS
*Do you have other symptoms that accompany painful episodes or do you suffer with other symptoms generally, such as:
headaches
eye problems
joint aches
vomiting
fever
sweats
rashes
mouth ulcers

MEDICATIONS
*What time did you take your prescription medications
*Did you take any over the counter medicines, even for something unrelated to your IBD
*Have you been taking any supplements
*What is your impression of the effectiveness of the medications you take. Are they making a difference.

http://www.crohnsforum.com/wiki/Diary-Inclusions
Click to expand...

I found keeping a diary made it far easier for me to remember things as it can become so confusing when you are living this day in and day out, as you no doubt know!, and having it in black and white can make it harder for docs to refute.

Do you get on with your GP well?
If so I would ask that he test for the following...

Faecal Calprotectin, if not already done. (Not sure if the GI needs to request this)
Have they been doing blood inflammatory markers. If not ask for CRP & ESR.
Iron Studies.
You are already having B12 done.
Vitamin D
Zinc
Magnesium

...if there are deficiencies some of these tests may point to small bowel involvement.

If you are going to start psyllium be sure and start slowly, as in a level teaspoon at first and then work your way up. If he is taking any supplements or medications make sure he doesn't take them for 1 hour before or two hours after the psyllium.

Good luck mum, I hope you get solid answers for your boy and soon!

Dusty. xxx
 
Hello,
I am a mother to 2 beautiful little girls. My 3 year old has had digestive issues since the day she was born. We have been passed through the medical field with everything from FTT to autsim to dairy/gluten allergies, reflux, anxiety, etc. I am looking for help as to what I can do to help the doctors find the root cause to what is happening with her.
 
One simple test to ask for is a stool test for Fecal Calprotectin. You just need to collect her stool and bring it to a lab for them to send away. It should be refridgerated after you collect it with your initials, time and date. It is a simple way to determine if you need to further investigate inflammatory bowel disease. If the number is below 50, it is not likely the issue or she is in temporary remission. It may be best to do when she is fairly symptomatic. If it is between 50-250, it is a gray area and they may monitor this. If it above 250, it is appropriate to do an endoscopy, colonoscopy and possible small bowel follow through to see if there is signs of Crohns or Ulcerative Colitis.

If any of my other two boys get symtoms of Crohns, this will be the first thing we get done!

Best of luck to you. I sincerely hope it is something mild and that she will outgrow but it is something you need to keep pursuing until you feel you have covered all of your bases. You will find from those of us who deal with the healthcare system (I work in it as well) that you absolutely have to advocate for you and your kids and connect dots for providers to ensure quality care even with the best of doctors!
 
Hi thanks for your replies. After seeing GI dr in July it is looking more like IBS rather than a IBD. He is putting on weight. I did suggest to the dr about the calprotectin test. He said he is further into his investigations than that. The severe diarrhea has seemed to stop to now only every 7-10 days. So my gp is going to get him to have an other X-ray to see if any inflammation shows up this time again. Or is it constipation with break through diarrhea. We see GI DR in sept and then he will decide if to do a MRI or repeat a colonoscopy and an endoscopy. Next time I see our GP I will just ask him for the test anyway just to check the level and rule it out. His allergy dr really thinks he has lots of food intolerances but can't work out to what even with a FODMAP diet. So she wants to test him for Mast cells and the level. My little boy does not like blood tests so we are saving up all the tests and do them all at once when we get a few more tests needed. It probably will be IBS with some food intolerances causing some of it. Thanks for your concern xx
 
Sorry didn't read earlier posts - tested with the whole panel of celiac markers - negative. All comes back negative except the X-ray which showed inflammation in the left side colon and proctitis. He is only now in a little pain and that's more when he is about to have diarrhea. He is coping a lot better and the vomiting has stopped. I just think he was so
Blocked up, he was being poisoned by being constipated and had break through diarrhea. Now if we can control his constipation we might be slowly getting better. He was on one capsule of Metamucil but after 4 weeks we stopped as it was causing 6-9 bowel movements a day full of mucus. Poor kid couldn't go to school. He now goes to the bathroom twice a day most days so I am hoping being very regular will help him from stop being constipated.
 
The defining difference with IBD and IBS is that no inflammation is seen in the bowel in IBS. No offense to your GP, but FCP is a good test to do before putting him through a colonoscopy or other invasive tests and is much more predictive of IBD than an x-ray. An x-ray is not really a great test for detecting IBD. You can't see soft tissue inflammation at all so I am not sure how it was determined he had proctitis on x-ray. Perhaps he just visualized this. I would push for it. It is a test that is more and more accepted in the GI world but very new and uncomfortable for GP's. Perhaps you will need to wait until you see at GI because the GP won't really know what to do with the information.

My son has totally normal bowel movements (disease in the ileum only) and normal blood markers for Crohns. He stopped growing and this is how he was diagnosed ultimately with a colonoscopy and a video capsule endoscopy. The fecal calprotectin test is the only test that lets is know what is going on inside. 6 months he developed his first agonizing symptom of Crohns with a perianal abscess and fistula. When the abscess flares up, his fecal number is up. When it is healing, his fecal number is down. It really has been the only test that is not invasive that shows us his condition and allows us to adjust medication. For such a young kid, I would prefer it because you don't put him through anything additional!

It sounds like he is holding on for now so perhaps waiting for your GI visit will be ideal. The Fecal Calprotectin takes about 10 days to 2 weeks to get back and could be valuable information for your GI doc if it is done prior.

Hope he gets better soon. I have IBS and had a colonscopy after my son was diagnosed on request of my doctor. I was totally normal in there but have a LOT more bowel issues than my son with Crohns. It can be awful in itself! I eat low residue foods and drink a lot of water when I feel I am having issues. I have to say that it is one thing that has gotten much easier with age for some reason!
 
Thanks for that. I will keep on top of it. It was the GI dr that didn't want to do the calprotectin test, so I didn't push it but will ask my GP soon and allow enough time before we go back. The GI dr wasn't to concerned either about the depletion of vitamin b12 to nearly zero, but my GP was worried and gave him injections which he wasn't happy about !! Oh well, we will see what happens with the fecal test and X-ray and see if GI wants to see about doing repeat scopes as he really wants to make sure it is not a IBD and the proctitis has cleared up and everything else is ok.
Thanks again.
 
We currently have a referral with a GI doctor now, but when she was in to see her new ped for the first time, she was very concerned with what she was hearing and seeing in teh medical history. The doctors have removed her from gluten free diet so that they can do a biopsy. She have had blood tests done regularly where they have all been normal, but other than that that she has not been tested for anything, just passed between doctors and specialists.
 
Hello and welcome,

Sadly our stories sound very similar.
My girl is four now but has suffered long before this.
NO DOC WOULD LISTEN.
How could I be telling the truth, how could it be that bad when she smiles like that.
Also she was putting on weight and she was constipated and as we ALL know she can't have anything like this.
Well they did a scope and found not one but two diseases. I felt horrible for not fighting even harder for her.

I was given some wise words by our dearest DustyKat:hug:, MAKE THE DOCTORS EXPLAIN WHAT YOU SEE IN FRONT OF YOU.
If what the doctors are saying about your girl don't match what your seeing.........
I would question, question, question.

BTW Grace had normal labs.
 
Last edited:
My daughter is undiagnosed

16yr female
Currently has HS(Hidradenitis Suppurativa)
Undiagnosed Bowel Disorder for 6 yrs

We have been back and forth and back and forth, everyone writes this off as IBS. Here's a pill and some zofran, take Imodium and you will be fine.

Well I'm sick of these answers, there is something wrong with my daughter! I took her to Childrens Hospital in Seattle last year and he basically ruled out a few things with blood work and said she has IBS.

I took her back 1 week ago due to more severe D and tummy pains. They ran more testing and did stool tests. Here's what we found so far:

NEG- Parasits
NORMAL- Liver Enzymes
NORMAL- for Celiac
NORMAL- Allergey for foods
LOW- Albumin
HIGH- CRP Inflammatory

We are still waiting for the stool to come back that shows inflammation in the colon. If that show inflammation we are moving to an endoscopy.

I just want my daughter to feel better, be able to not have to miss school , and be able to enjoy sports. We are always looking for a bathroom for Just In Case!

Please Advise!!!!!!!!!!
 
Hi Ali... sorry your daughter has gone through so much. Whether her test comes back positive or not, you may want to consider scopes with biopsies anyway. Obviously something is not right. What does the GI (it's been a GI, right?) say when you suggest IBD?
 
Sorry you're having so many troubles finding a clear diagnosis for your daughter. Hopefully the stool test will give some answers! My understanding is that IBS does not cause inflammation so having a high CRP result does indicate that there is some other problem. However, CRP is not limited to intestinal inflammation... it could be inflammation anywhere in the body - the stool test will, hopefully, rule intestinal inflammation in or out. I also don't believe stool samples are 100% conclusive... has she had an MRE (or other imaging tests) to 'see' if inflammation is present?
 
Soooooooo Stool came back with inflammation :(

Waiting on Childrens to schedule both upper & lower scopes with biopsies.

Her symptoms are getting worse, its an everyday struggle now. I took her to a concert for her 16th birthday this past weekend and we were in the bathroom for like an hour off and on. This breaks my heart for her!!!

Anyone have ideas for things to help that we can do at home? already staying away from fatty foods and dairy and trying hard to stay away from sugars and fructose per our DR.

Sad for my baby to have to be going through this on a daily basis!
 
So sorry, Ali. I'd just let her take it easy, stay home, let her rest. A lot of kids here have benefited from a liquid only diet called enteral nutrition. It can sometimes help reduce inflammation and be easy on the bowel. Short term until the scopes she can drink Ensure or Boost that you can find at the grocer or pharmacies. I'm sure others will be along with advice.
 
Mehita said:
So sorry, Ali. I'd just let her take it easy, stay home, let her rest. A lot of kids here have benefited from a liquid only diet called enteral nutrition. It can sometimes help reduce inflammation and be easy on the bowel. Short term until the scopes she can drink Ensure or Boost that you can find at the grocer or pharmacies. I'm sure others will be along with advice.
Click to expand...

Thank you Mehita! We will try those out. Rest is another story....she's on the soccer team, and can't miss practices or she will miss out on the games. She feels like she needs to be there. I'm all for her resting her body, but she's 16. LOL LOL

Thanks again!
 
Sorry she's struggling every day. :( Rest would help but totally understand the teens/sports thing... Make sure she stays well hydrated! Also suggest Boost/Ensure to help boost her nutrition levels. Do not take ibuprofens - can cause problems with crohns/UC (tylenol is okay).

I hope you get the scopes soon and get some answers.
 
Scopes with biopies scheduled for Sept 30th. Waiting is the worst part!

She is nervous, I'm nervous. We just want to get this over with! I guess if the doctor sees something she will come talk to us. Does anyone have expierence with this? Will she be able to see what it is just by going in and looking? What else could it be besides Crohns or Colitis. No one wants to give me answers! UGH! I read IBS doesn't normally show inflammation in the colon. Do we have to wait for the biopsies for answers?

Scared and Confused!!:confused2:
 
HELP PLEASE!

My daughter is sick, having a flare, whatever you call it. We have no clue what she has yet. Her stomach cramps, hurts, cold sweats, feeling like throwing up, ends up with diarrhea. What can we take over the counter to help? This is a daily thing now, she just text me from school saying she hurts. And all I can do is say try and tough it out. My heart breaks, can only miss so much school and has scopes coming up and will need to be out for 2 days of school.

What can I do? I called and left messages for our nurse, waiting on a call back. Thought this might be faster!

Please advise!
 
So sorry ali79shine. If she does have Crohn's some of the things we have found to help with symptoms is going to EN (entrenal nutrition) and you could use over the counter things like Boost, Ensure or even the junior ones Boost Kid Essential or Pediasure not the Pediasure sidekicks but the regular 240 calorie pediasure shakes. None of them really taste fabulous but they are not that bad and they quickly get used to the taste. Especially if you are like my son and I know when he is feeling bad and starts asking for them instead of eating.
Basically gives the bowel a rest as it doesn't have to work as hard especially if it is inflammed you can imagine food scraping along that (Sorry for the visual).
Heating pads provide some comfort, tylenol is generally okay as well.
We've used Immodium in an emergency (usually if we are traveling and it is bad) but always with the GI's permission and only when he has been so bad we were more concerned with dehydration.
I would definitely at this point at the very minimum get a health plan in place until scopes, explain what is happening with the nurse and that you have scopes scheduled that way maybe if she is feeling really bad at school and doesn't want to come home she could lay in nurses office for a little while with a heating Pad.
 
So sorry she is experiencing so much pain and symptoms. I would stay in contact with the GI as much as possible and ask to be put on the cancellation list. You could ask the GI nurse for something to help with nausea and vomiting such as Zofran.

There are a lot of kids that have done enteral nutrition, all liquid(formula) diet, to help ease symptoms. This could be boost or ensure, or even other formulas that semi-elemental to elemental. It would be something to discuss with the GI, it has good remission rates but that might be an issue with scopes for diagnosis coming up.

Hope she finds relief soon. My son used heating pads for pain and Tylenol(ibuprofen is a no-no with IBD). It is such a tough thing to watch them in pain and feel unable to take that away. Hugs and Support.
 
Thanks for the info!

We will try the liquids asap, and I have zofran at home I can make her take. I didn't realize Advil was bad for her. We will stop that also.

Does this sound like Crohns? UGH! I wish we had these stupid scopes already. Its all I think about day in and day out! 6 years of this and its getting worse by the day! Can they tell what it is when they do the scopes or are we having to wait for biposies back?

I daughter is also a HUGE STRESS case. she has panic attacks all the time, we should have probably told the DR about that as well. In reading it sounds like that can make things worse on her, if it's Crohns.

I'm so glad I found this forum! I appreciate the quick responses and just knowing I have support out there is a huge comfort!!:ghug:
 
Before starting the all liquid diet I would discuss it with the GI as it could affect her scopes and possibly prolong the diagnosis process. EEN(exclusive enteral nutrition) is used to induce remission and has rates as high as steroids. Some that have been on steroids prior to scopes find that the steroids have dampened the inflammation and therefore the test results are skewed.
 
I hate to say it, but it depends on what they see during scope. My son showed ulcerations throughout when he was diagnosed and GI said he was 98% certain it was Crohn's but wouldn't be verified until biopsies came back but that we were going to start treating as Crohn's ASAP.

Stress can certainly make things worse so for many (my son and husband included) anything that can reduce stress is a positive but then isn't it for all of us. Whether it is Yoga, counseling, listening to music or whatever. She will have to find something that works for her.

Thanks Clash, meant to type that about Ibuprofen being a no-no as well as aspirin.
 

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