Undiagnosed 2 1/2 yr old struggling and need help!!!

[Benourer83]

I don't even know where to begin with this story as my daughter has struggled since birth with mucus and blood in her stools I was breastfeeding and did the elimination diet of milk only that didn't seem to work we tried the Nutramigen formula but that didn't work either and we just kind of dealt with the peaks and valleys of constipation and diarrhea back in September of this year she started having 13 - 14 explosive uncontained bouts of diarrhea a day so obviously I was concerned not to mention she would throw herself on the floor and scream head hurt we took her to the ER where they did many many tests on her stool no see this wasn't bacterial no parasites but her blood work was a little screwy percent of sales have been raised based on the labs ranges abnormal being between 0 and .4 hours are consistently consistently at a .7 or above her c-reactive protein was at .58 normal labs range is 0 - .29 we followed up with our pediatrician who then referred us to a gastroenterologist mind you I have alternative colitis and has had it for 5 years now upon speaking with the gastroenterologist he has suggested that we put her on periactin so that we could get a better idea as far as putting more solids in her stomach because she drinks more then eat she would normal toddler very picky few bites here a few bites there that was on October 7th we didn't see a necessary increase in taking solids but we reduce the amount of bottles she was drinking a day from roughly 40 ounces 236 on October 15th I called the pediatrician because she was doubled over in pain screaming her belly hurts now mind you since being on the periactin for while she would poop about 4 times a day but they would be solid little nuggets we get to the ER they do an xray she is so full of poop they cannot use an enema it squirted back at them they tried to manually disimpact her which then gave her a rectal prolapse so we ended up on the pigs floor admitted with an NG tube and 2 rounds of golytely to unblocker followed up with the pediatrician on Monday October 19th and they sent us to the Children's Hospital to expedite some more testing as they believe that the periactin bound her up and the gastroenterologist was not pursuing testing based on strong family history and symptoms have more blood work done at Childrens Hospital her ESR rate is up to 25 percent of sales are still raise her platelets are very high and her alkaline phosphate is consistently above 300 they did a fecal calprotectin test range is for that the lab didn't give us one Herbie when and creatine was also elevated so fast forward to Thursday the 22nd and he wants to do a barium upper GI test and a barium enema test he still doesn't believe that is ulcerative colitis or Crohn's I think he's doing the testing as far as seeing if there's any structures or narrowing of the intestines and ivy: has been extended I have the labs reports as far as what are altrasounds showed and they all state that she still full of people colonic material but I just don't understand how we went from being diarrhea diarrhea diarrhea to an hour at constipation the gastro doctor now also ordered a celiac panel her vitamin D checked and the blood allergy tests as well but I just keep getting run around after run around I don't get any answers they all seem to believe that she's too small to have and IBD diagnosis but yet I'm the one who has to watch her have these horrible episodes every time she poops she says blec and oddly enough she's really itchy which to me would be allergy but I am I need help determining what this blood work means cuz everytime I ask a doctor about her platelets being high they say it's because she's growing every time I ask him about the ascent of Hill being raised they don't give me an answer her white blood count was at the 13.1 on October 20th and her PLT is raised as well 557 I am at a loss I don't know what else I can do please help

 

[Benourer83]

I'm sorry I did voice to text this post is hard to follow I'm sorry.

 

[Benourer83]

Basically eosinophils are raised and esr. But sure if the fecal cal test is elevated with a 123 at 2 1/2 years old. The ranges I can find are for 4 yrs and up. Gastrointestinal doc also has us on 4 tsp a day of miralax as well please ask if you need clarification am I wrong for pushibg for ulcerative colitis because I presented that way from a young age of constipation, only when I got older did I have some bits of diaherria. Her belly sick complaints and head complaints have one doc pushing for abdominal migraines. I just want to know what I'm dealing with versus the sure and wait approach, that lead me to a traumatic ng tube and 2 rounds of golytly that still hadn't cleaned her out. We had an xray 5 days later and There is prominence of colonic fecal content especially descending
colon and rectosigmoid.

 

[crohnsinct]

Voice to text :ylol: I was wondering!

So sorry to hear your baby girls is suffering so. All the information I have states that normal fecal cal numbers for 2-9 year olds is less than 166. Lab tests blood or otherwise are not always 100% accurate but I think the FC test does have a good track record.

The road to diagnosis with GI disorders, syndromes, diseases etc is a long and frustrating one. So many things need to be ruled in or out.

It does seem to me that the diarrhea is more indicative of how your daughters system is normally and that something that was done messed with things and caused this horrible constipation.

My younger daughter presented with constipation so they didn't really consider IBD seriously but alas that is what she had!

Has the doc explained why they are putting off scopes? Seems to me while you are ruling in or out things including celiac, if you are agreeable to the procedure, scopes would cross off a number of issues.

Has she had immune work up done? I know that is discussed a lot around here with very young ones with GI issues.

I will tag some of the experts: My little penguin maya142 dancemom farmwife pilgrim clash

 

[Benourer83]

At this point in time we have blood work ordered for this afternoon to go do all of the allergy and celiac panel done they're also checking her vitamin D so based on the eosinophils always being elevated same with her phosphate she does usually present with diarrhea I believe the constipation was due to the periactin but I would have believed that after two rounds of Golightly that would have cleared out in the miralax regimen that were on should keep her cleaned out but it seems as though she's not passing as much as she should it is moscitos I'm excited as far as that so I guess maybe I shouldn't be looking at ulcerative colitis like me maybe I should be looking more at the actual structure of her intestines and colon as far as narrowing and structuring for obstructions I mean she was constipated so bad she was vomiting feces it was horrible and scary and I don't want to get back to that and the sad part is is there was no warning it wasn't like she was having a heart attack and was questioned her chest and passed out it was just so sudden but yet so gradual because she was pooping everyday and then BAM and they told me that I need to check more. Of frequency but formed stools I just don't know where to go and what direction as far as every eSr was elevated to 25 and her baseline is like 13 I know that's a general inflammation markers something had to have caused the diarrhea to begin with and the blood and I don't know when it becomes emergent and I hate playing day by day guessing

 

[Benourer83]

I did forget to add that we do have the barium enema test set up as well as the barium upper GI test setup again I apologize for voice to text but sometimes it's just a lot easier to speak it on my phone and to actually find some time to carve out for myself to sit down on a computer and type hahahaha

 

[Clash]

Since it was talk to text, I can't tell if you got a result from the fc test or just didn't get the normal reference ranges for the test. But CIC is right it can be a good test to determine the path of further testing.

If your unsatisfied with the care the docs are giving a second opinion may be in order.

IBD in very young children isn't unheard of its labeled Very Early Onset or VEO I believe. We have had several new membersymptoms come by to ask questions because their very young baby is being investigated for CD or had been dxed with CD. I think farmwife and pilgrim both had very young children facing IBD.

Hope you get answers soon.

Oh and I would opt for an MRE over a small bowel follow through or other barium testing. It has the yucky barium too but no radiation like SBFT

 

[Clash]

Ahhh I see the result for fc in your later message.

I would ask about an MRE. And maybe scopes if this doesn't resolve. There's always the question of is it functional structural and ruling out issues with motility or gastroparesis per se.

I hope you find some answers. There are some kids on here that have been on daily miralax. My little penguin and farmwife have both had children that route to treat their constipation. My little penguin has a son that had had to deal with prolapse with constipation as well I believe.

 

[Benourer83]

i guess I'm just really impatient and don't particularly enjoy watching my daughter struggle and the Google mister says that FC test should be under 50? is that not right..? I just look to far into the blood work I guess I don't know. and to make matters worse the barium is a constipator so we may be in for more interesting result from that. what is a mfe? and we have gotten a second opinion. it was to stop eating cheese. both docs are ped gi specialitsts and work at great children's hospitals here in Florida. but none of what my 2 year old can be normal functional structure I just wish one doctor with an open mind would sit and take the time to read her tests, blood works, X-rays, and history and tell me what to do rather then play this miralax game. who would of thought miralax would be so time consuming really I shouldn't complain I know there are others with worse of kiddos. and I have no real doctor understanding of how all this works, I went to the Er due to mucous and blood in my poop and had a colonoscopy the next day and was diagnosed with ulcerative proctitis with the 5asa steroid enemas. I am very lucky that I got pregnant shortly after and only took 30 days of the meds and haven't had an intestinal flare in 3 years

 

[Clash]

Under 50 is the NRR for older kids to adults. I think the NRR shifts before age 9 but I don't have the numbers in front of me. I believe though from age 2-9 it's like 166.
The other thing to be cognizant of is that different labs have different NRR for FC even though they use the same units of measurement. Labcorp was under 50 but our most recent NRR on a Labcorp test was higher (can't remember exactly maybe under 123. For Quest Labs the NRR has been something like under 167 since conception of the test.

Also FC isn't a test for CD just a test to determine if there is inflammation in the bowels. The inflammation can be from different things, over use of NSAIDs, infection, etc.

And MRE is magnetic resonance enterography, a form of imaging. It is very sensitive and can pick of narrowing or stricturing. It has the benefit of no radiation and is used in pediatrics a lot because of that. Especially since CD kids will have a lot of imaging in their life time so better to have a no radiation choice.

For someone as young as your sweet girl they may have to sedate. It's like an MRI in that you lie down and are placed under a machine. Some peds MRE provide movie and headphone but they have to lie very still.

Hope you get answers soon

 

[Sascot]

No real advice, just wanted to wish you all the best and hope you get answers. I am struggling to get answers for my daughter, she is 13 and more able to understand what is happening. It must be awful in a little one

 

[Benourer83]

Under 50 is the NRR for older kids to adults. I think the NRR shifts before age 9 but I don't have the numbers in front of me. I believe though from age 2-9 it's like 166.
The other thing to be cognizant of is that different labs have different NRR for FC even though they use the same units of measurement. Labcorp was under 50 but our most recent NRR on a Labcorp test was higher (can't remember exactly maybe under 123. For Quest Labs the NRR has been something like under 167 since conception of the test.

Also FC isn't a test for CD just a test to determine if there is inflammation in the bowels. The inflammation can be from different things, over use of NSAIDs, infection, etc.

And MRE is magnetic resonance enterography, a form of imaging. It is very sensitive and can pick of narrowing or stricturing. It has the benefit of no radiation and is used in pediatrics a lot because of that. Especially since CD kids will have a lot of imaging in their life time so better to have a no radiation choice.

For someone as young as your sweet girl they may have to sedate. It's like an MRI in that you lie down and are placed under a machine. Some peds MRE provide movie and headphone but they have to lie very still.

Hope you get answers soon

I don't know I'm not a helicopter parent I was really really lax open till being admitted to the hospital and watching your child have to NG tubes put in and she's too she can't tell you where her pain is other than the fact that she has pain which concerned the pediatrician expecially with the headache for a two year old to be that specific was abnormal to her so we do have a neuro consult coming up on November 20th maybe I am just looking too far into blood work and hoping that is ulcerative colitis because I know how to deal with that versus having it be something different and learning and testing I'm struggling just to keep the miralax going straight I'm not sure why he ordered the upper barium GI and the barium enema I'm not even quite sure what he's looking for I know that both radiologists who have taken x-rays have said that she has rectal distension I don't know what he's looking for I don't know I I'm still puzzled its so stressful I don't my hands are up and I can't I can't put my hands up its my kid I have to fight and fight and I have but at some point somebody has to give me answers what she's going through is just not normal she hasn't gained any weight in over a year that must be why he prompted the periactin which is understandable but then that just sent us to a horrible tailspin of constipation and I just don't know what to fight for but I just know that I have to continue the fight

 

[Benourer83]

No real advice, just wanted to wish you all the best and hope you get answers. I am struggling to get answers for my daughter, she is 13 and more able to understand what is happening. It must be awful in a little one

Thanks and I'm sorry we're both stuck, no answers and sick kiddos

 

[Benourer83]

Clash now that you have me wondering about if her ESR and her CRP it just makes me nervous if she was that constipated prior with a rectal prolapse rectal distension could she have preparated her intestines and maybe now has an infection or slowly but surely I'm not sure I grasping straws here or should I just honestly forget the blood work altogether

 

[crohnsinct]

It sounds like your GI is working on finding answers for your girl which is great! If you have questions about why he is doing certain procedures and not others you are perfectly within your rights to ask. Same with blood work. Even though you have some experience with all of this as a patient it is different when it is your child. It might be beneficial to set up an appointment without your daughter so you and the GI can discuss all of your questions, concerns and fears.

My first daughter was in ICU at diagnosis and we had no idea what Crohn's even was. Believe me I had a thousand questions and fears etc but the docs all made time to listen to me, explain etc. Occasionally they would tell me certain discussions were for another day and not priority at that time but you need that. This is old territory for them but new for you. If you don't have a good relationship with the GI and trust then this will not be a good working relationship going forward and it is a long road to diagnosis.

I would give them a call and ask for that appointment. Maybe even type up a list of your questions and concerns and email it to them so they are prepared.

 

[Clash]

I know the stress has to be unbearable. Even with older kids it's a good idea to keep symptoms/bm journals and to write down all questions you have about results, testing and testing avenues being considered. Take these to the appts and go down the list until you are satisfied that you are confident in the explanations.

If her lack of weight gain is due to something that causes malabsorption issues like CD then the periactin may not have the expected result until the issue is taken care of.

There are some kids here who have taken periactin and others who have been on EEN which is formula only either orally or with ng tube. Since formulas are more broken down they are easier for the intestine to absorb.

Dancemom and kimmidwife are both from Florida and can give you their experience maybe with hospitals and doctors in florida.

But on its own "not having seen IBD" in someone so young is a bit naive for the doctors because it is seen and there are children's hospitals that deal with VEO of IBD in kids quite regularly.

If you have a concern of perforation bring it up with the GI along with all other concerns. You are doing the right thing by being the best health advocate you can be for your child. Be forthright about having them to explain the need of the different tests, what they are looking for and what you should be on the look out for as well. Sometimes the GI nurse can be a great source of info for and go between. I often call the GI nurse with my questions which she presents to the GI and then returns with his answers.

I like CICs suggestion of making an appt for all your questions too!

 

[Benourer83]

I think that's my problem is that I'm asking what they mean and all I get are they're normal results for a growing toddler. The platelets the eos,alk phos all being told normal then why are they out of the specified ranges according to the lab. I feel like between both all children and st Joseph's, which are all children's specific hospitals we had better luck at our local dinky hospital but they Dont have pediatric gastrointestinal doctors. She's only two she can't say mom the lower right side of my belly hurts, I'm nauseous it hurts to poop etc etc so I can only go based on physical extremes literally and blood/labs. Our NP at the GI is really good I do like her.I did make a follow up appt to discuss how if at all full she is and what are my warning signs before she gets to full but I checked in at 10:23 & @ 11:45 we still hadn't seen anyone. She was melting down nap time lunch etc. I walked out and have yet to reschedule. Please someone calm my mind am I crazy to think nothing's emergent OR am I crazy over reacting thanks clash and crohns inct

 

[DanceMom]

We are VERY close! Lol
We used to see GI at St. Joe's but switched to Nemours. Best decision we ever made. We just started seeing Immunology at All Children's.

 

[Benourer83]

We saw dr Kaiser at st Joseph's and we're seeing dr arasu at all children's now. How do you go about getting a second opinion my mom just mentioned Nemours to me this week and my cousin mentioned Arnold Palmer in Orlando. She's having her barium tests at st Joseph's next week any advice I'll gladly take dancemom

 

[DanceMom]

My youngest saw Arasu and we weren't impressed. He was quick to push medications and procedures (she had a pretty straightforward case of LPR). I'd recommend calling Nemours and explaining the situation. They were very quick to fit us in and worked out a great payment plan as well.

 

[CrohnsKidMom]

Just wanted to send you my support. It must be so hard with a child so young. My son was 8 at diagnosis, and that was plenty young enough, thank you. I second the MRE. Like already mentioned, there is no radiation, is painless (except for the IV), and little ones can be sedated to keep them still for the procedure. My son's CD is in his small intestine, where scopes can't reach so it is a great test for him. I should mention though, that it was the scopes at diagnosis which confirmed the Crohn's. I'll also mention that my son is on the standard daily dose of miralax for constipation. Constipation is often an issue for kids with CD in the small bowel.

 

[Maya142]

You've been given great advice and I don't have anything to add right now, but I also wanted to send my support. There is a parents of young ones support group - I think Farmwife can give you a link.

Sending hugs! Let us know what happens!

 

[GirlwiththeCurl]

So I am pretty new here; my daughter (6) was recently diagnosed with some autoimmune liver diseases with a secondary IBD diagnosis. I first took her to the doc because of persistent diarrhea.

Elevated alk phos can be a sign of liver disease (or bone disease, I think). You say her results are over 300--our lab shows highest normal at 346 (done at a children's hospital, so presumably that is not the adult range...). My daughter's have never been in the 300s, though, even with her issues.

I wouldn't normally even comment, because I don't know all that much yet, but I keyed on the elevated alk phos and you saying she was itchy, which is something I have been told to be concerned about with her liver diseases.

Are the docs running a hepatic function panel as part of the Celiac bloodwork? That is when we first saw elevated liver enzymes indicating some sort of liver issue.

Good luck! I am sorry your daughter is dealing with these issues. And it can be such a mess to sort out. Hang in there.

 

[Benourer83]

Thanks girlwthcurl I doubt there doing the hepatic panel but on 9/2/15 blood drawn it was 280 and lab Range was 45-112. On 10/20/15 blood draw it was 346 and that lab Range which was at a children's hospital was 60-300 her BUN/creat was high on the Oct draw to 46 and lab range was 7-34 but her eosinophils are consistently high. When I Google results on these blood tests it all points to kidney issues which we did rule out at 3 months old when she was admitted to the hospital with a fever of 104.0 they thought UTI and we had an ultrasound on her ureters which concluded nothing but with that being said we had problems with poops and belly sick (her words lol) since I can remember plus the vomiting randomly with headaches poor appetite I'm thinking I'll pull away from trying to convince me and the doctors lol that she has an ibd and keep an open mind to figure out what's going on but I just pay for answers quickly

 

[Benourer83]

Thank you again all for your kind encouraging words

 

[Farmwife]

Sorry late to this thread but welcome aboard.

My girl was dx at 3 with ibd and 4 with juvenile arthritis.
It's been a rough road and a long haul for her and us.
She's simply amazing on how she handles it all. I wouldnt do so good!

Grace never got into neat little box from a dx view. She never showed anything in her labs, Mri, barium study, ct scan, xray but her scopes showed a different world.:confused2:

My girl had to do EEN full time with and n-g tube and then we had a gtube placed. Her formula kept her alive and helped get her into remission but sadly not enough to stay there.

Please ask any questions you can think of. Corn season is happening on my farm so I'm not on my computer all the time but will check for a quick updates on here.

Also there's other GI diseases and problems that can happen to young ones.
So be prepared for anything.
Grace did have horrible constipation but on Remicade it cleared up completely.
She used miralax (3 adult doses at its worse) to keep her moving.
She also had a prolapse. It was scary and we made sure to keep her still soft after that.:yfaint:

Hang in there mom your doing a great job!:ghug:

 

[Benourer83]

I appreciate all your tips and suggestions. I have been keeping track of poops, medicine and overall symptoms since 10/07/15. At 2 it's kinda hard for her to communicate nausea and other symptoms. So I have to judge based on food intake and activity level. My GI has not been overly interested in searching for an answer.I had to literally yell at them to. No mom should be told oh well I understand your daughter needed to hospitalized for constipation but the only mentioned treatment was to stop eating cheeses. I lost it. I'm really struggling now that the weekend is over I'm noticing some weirded poops and going to have to up her miralax again. Her appetite was better. Also I have to call the lab today and inquire about the fasting/cleansing procedure for the barium enema. It was very confusing.

 

[Mehita]

Have you heard of the Bristol Stool Chart? It will help with tracking and there is also a kid version to help kids identify.

 

[Benourer83]

Have you heard of the Bristol Stool Chart? It will help with tracking and there is also a kid version to help kids identify.

Yes but she's in diapers still so it's hard to explain or give a number lol. I think I'm going to start taking pictures of them. Officially will have gone cookoo if I start taking pictures of kid poop lol aww the things we do for our kiddos

 

[DanceMom]

Not crazy. I have a whole poop folder on my phone and have emailed pics to the GI as well. They expect that.

 

[Benourer83]

Not crazy. I have a whole poop folder on my phone and have emailed pics to the GI as well. They expect that.

 

[wjack]

Sorry she is suffering. My son was diagnosed at 18 months old. I took about 2 month to get the diagnosis of CD. Everyone (all Peds and ER docs) said he was too young for Crohns. GI did the colonoscopy an came out to say they're admitting him. Hopefully they will get to the right tests soon. It is so hard when they cant verbalize what is going on.

 

[Benourer83]

Unfortunately there starting with the barium testing which I feel like is a waste but with her constipation that led to two runs of golytely last month are concerned about narrowing structures or intessception and I guess that would be safer than doing a colonoscopy and having the camera preferiate the bowel is what I was explained so fingers crossed the upper GI and small bowel follow through is tomorrow morning

 

[CarolinAlaska]

I really feel for you having a little one in diapers with bad smelling diarrhea. Hopefully this test will prove to be useful.

 

[Benourer83]

Thanks carolinalaska as my daughter is screaming belly sick and is crouched in the corner pooping. Yaaa to poopy diapers NOT

 

[wjack]

I so remember those days. :stinks: The uncontrollable crying is a lot to take! Praying you find some relief for both of you!

L is 13 now. After that first flare he had a little over 10 years in remission. It will get better!

 

[Farmwife]

Poor baby.
Grace was potty trained early... thank God but when she had travel and test we put her in pull ups.
If my memory is correct the barium ended up causing Grace to becoming even more back up.
If it doesn't pass in time it can harden in the gut.
Even if she's going poo now make sure you keep up with monitoring her poo.:yfaint:


Did they say when you were getting the test results back?

 

[Benourer83]

Wjack our GI is very hesitant in doing a colonoscopy due to complete bowel blockage of fecal matter a month ago so he wants to make sure at this point in time that her intestines can handle it. we just had some lab work testing for celiacs disease vitamin levels and any other allergies he seems very hesitant in doing a colonoscopy even though I've had ulcerative colitis for 5 years I keep getting pushed back she's too young she's too young and no blood in her poops when they test it but yet I see it she goes back and forth between constipation and diarrhea vomiting headaches and belly pain last blood draw her sediment rate her ESR was at 25 and the lab range was 0 - 10 and her crp was <29 with normal range of 0-30. So with them giving me so much push back that it can't be any form of Crohn's or colitis I have been digging a smidge further into her blood work as to why her eosinophils are always through the roof same with her platelets and I just noticed that her bun was almost double what the normal lab range was at a 46 the normal was 0 to 25 her amyalase and Lipase blood tests were all so low I just am at loss as to what is wrong and I'm losing hope in the doctors but I will accept any diagnosis that comes our way as long as I can help my daughter stop having pain

 

[Benourer83]

Poor baby.
Grace was potty trained early... thank God but when she had travel and test we put her in pull ups.
If my memory is correct the barium ended up causing Grace to becoming even more back up.

If it doesn't pass in time it can harden in the gut.
Even if she's going poo now make sure you keep up with monitoring her poo.:yfaint:


Did they say when you were getting the test results back?

I feel like this is delaying her potty training unfortunately my 10 year old daughter was much much easier to potty train and was already at two and a half

No idea as to results back but I already scheduled our follow up for Dec 2. I'd hope they have blood work and barium results at that point . My biggest concern with the barium is the fact that it is a constipator but he is using the gastro Gaffigan

 

[DanceMom]

Does she have asthma and/or allergies? That could explain the eosinophils and elevated inflammatory markers. FWIW I didn't realize my daughter had asthma but her PFTs were so bad at diagnosis they considered admitting her. The only reason they didn't was because she was dancing in the office and looked perfectly fine.

 

[my little penguin]

allergies do not elevate sed rate at all
They will elevated eosinophils during pollen season or if she is being exposed to one of her allergens in general

 

[Benourer83]

allergies do not elevate sed rate at all
They will elevated eosinophils during pollen season or if she is being exposed to one of her allergens in general

So maybe celiac? I don't know at this point I'm grasping straws. What's the deal with BUN being high and the pancreas functions low. And why are her platelets so high? I'm rambling in frustration because I've asked the doctors these questions and I get the run around i.e., she is growing? Lol but mlp sed rate doesn't elevate with allergies? She's definitely not an in the box presentation for any one thing

 

[DanceMom]

Asthma causes inflammation that can raise SED. My youngest has this with asthma flares.