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A little, but so many people think they are twins now they just have fun playing up that angle. It was really bad when his brother was really starting to pass him up noticeably. For example going out to dinner and the waiter would bring Jack's drink in a kids cup and my other son in a regular glass. This was when they were 14 and 12 so just before we started him on remicade which was one of the reasons we really started pushing and saying that we have to be missing something.
 
Jmrogers4 said:
A little, but so many people think they are twins now they just have fun playing up that angle. It was really bad when his brother was really starting to pass him up noticeably. For example going out to dinner and the waiter would bring Jack's drink in a kids cup and my other son in a regular glass. This was when they were 14 and 12 so just before we started him on remicade which was one of the reasons we really started pushing and saying that we have to be missing something.
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I am so glad for him that was the piece. I hope remicade works just as well for us. You worry so much about your kids in a regular situation, this is just tough.
I will continue to hope for a cure soon... do you ever follow the MAP vaccine fundraisers?
 
I do. I personally think there are so many versions of this disease that we just don't know yet and for us there is such a strong genetic component with his dad also having crohn's I think that MAP may indeed be a Crohn's trigger in some but not everyone. He just has so many of the gene mutations for Crohn's that it was almost inevitable (at least that helps with the mommy guilt)
 
Jmrogers4 said:
I do. I personally think there are so many versions of this disease that we just don't know yet and for us there is such a strong genetic component with his dad also having crohn's I think that MAP may indeed be a Crohn's trigger in some but not everyone. He just has so many of the gene mutations for Crohn's that it was almost inevitable (at least that helps with the mommy guilt)
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Such a strange thing... Neither my husband nor myself neither of our parents or any grandparents have iBD so I feel like his chances were so slim, making mom guilt worse because I feel like something I did caused it like pills or meds or something
So heartbreaking
 
I don't think it is anything we did/didn't do but I know what you mean but that goes back to my there must be different versions. I truly hope that MAP turns out to something that is in fact a cause and a cure/vaccine can be found maybe it will even lead to discovery of other causes which in turn can lead to cures.
 
He still may have tons of crohns genes
We did 23&me for DS
No family history of Ibd or crohns
DS had 149 snps associated with crohns
Including nod2 so no avoiding per GI
Even without a family history per say
 
I wanted to ask parents again who has or has not the specific carbohydrate diet or LDN for their kids.
My sons GI suggested SCD diet during initial appointment when he was diagnosed. I didn't know anything about this disease and had no idea what questions to ask. I felt like I had to make such a huge decision in a instance. GI said he had children patients that have had success on the diet but again I'm not sure if this was in conjunction with meds. I've heard from a mom her daughter did great with SC diet and LDN alone and hasn't had anymore symptoms in over a year or required any other meds.
My son is about to start his 2nd dose of remicade but I feel like I didn't even try other options prior to starting meds, mostly due to lack of understanding.
I wish their was a manual on how to handle this.
 
Hi, my girl is 6. She tried ldn after being dx at three but it wasn't enough to help her.
I looked into scd diet but it was too restrictive and lots of stories in how parents had a hard time keeping weight on their kids.
 
I think you need to try to be ok with your decision and hope the med works for him.
Some are not given a choice of drugs or time to research since their kids are too sick .
Some wish they could have a choice to use remicade or other biologics but different countries have different rules /limitations
Other times kids try drug after drug only to fail each one of them slowly.

We would all like to be able to choose a magical non. Drug diet or supplement or even weaker drugs than our kids are currently on.
But at the end of the day having a drug that works for your kid and having healthy intestine as well as kid is the key ( million dollar prize).

Scd has worked in some kids but most lose weight and it's not strong enough.
LDN alters the brain chemistry to trick the brain to produce more dopamine which is suppose to reduce inflammation . It has proven success in kids who have mild disease and just need a nudge to get healthy . We did not chose LDN due to changing brain chemistry
Jmrogers used it for her son but still needed to switch to remicade to get to remission/growth.
Farmwife aslo used it for her Dd -same thing had to switch .

You need to look forward and educate yourself as much as possible so if there are more decisions to be made you can make informed decisions ( not that the disease doesn't choose for you most of the time anyways ;) )
 
How do you even know in the beginning of the diagnosis how serious it is? The GI never specifically said is it was a mild/mod/severe he just asked if we wanted to start on prednisone or formula diet. My son refused the formula diet so we started steroids then methotrexate.
I again just felt backed into a corner and had to make a decision without having any idea what was going on. Since the fitsula formed we had to then switch to the remicade and I keep wondering if I had started the SC diet right away if the fitsula would not have started.
I would say weight loss was a huge concern of mine and the restrictive diet felt way to difficult at the time.
The more I learn the more I see how many suggestions and options there are and it's so tough to make a decision for him.
I keep hoping and praying for a cure.
I shared the MAPcrohnsvaccine.com on my Facebook to hopefully raise money or awareness just in the hopes that this may offer a possible cure to our kids.
 
Kids tend to be moderate to severe
Fistulas move you way out of the mild range .
There are pcdai ratings
Chosing a therapy for mild disease typically does not tend to stop the disease from progressing . The big guns are needed for that.
Unlike adults kids disease changes over time and tends to get worse and affect more of the intestine
So be glad you have the opportunity to try a more advanced med like remicade or even Mtx.
A few years ago mortality rates for kids were high with Ibd.
The only drugs they had was prednisone prednisone and more prednisone .
I get that your angry and grieving we all went though it .
Hindsight is 20/20 but looking back will not help you move forward .
Fistulas need a strong med
Fingers crossed it actually works for him
 
Yes MLP is correct we used SCD and LDN at the same time. LDN takes a LONG time to become effective if it's going to and a lot get worse before they get better which is what happened in our case which is why we tried SCD along with it. It was a long summer where he felt miserable to do much. He started feeling better about 3 months in but it took a full 8 months for him to really feel well and achieve remission and then it only lasted a few months (he did put on weight and grow an inch but that was helped with EN). Getting him to eat was a struggle as he just did not feel hungry (personally I think that was a side effect of the LDN - lack of appetite). We had 4 months where he felt really fantastic and then he developed a c-diff infection which led to a flare and the LDN either wasn't enough to pull him out quickly who knows if it would have worked if we had the time to wait but at that point he was 14 1/2 and we didn't have time to mess around. Having moved to remicade at that point I can tell you at least for us remicade worked far better and faster. I'll post some photos in an album on my profile page (just click my name in avatar box to go there) that will show you the difference for us on remicade. Whenever I look at the pictures I feel better about the decision to move on to remicade.
 
We tried SCD. Did it by the book. She was an intestinal mess in a few short weeks.

What you could try that might work is to research and begin an SCD diet while your son is on Remicade. Then you can see what it is all about , the theory behind it, learn how to use the diet. It may very well prolong remission while he is on Remicade or get there sooner. If you did that then you at least would know how it works, what it involves - without throwing out the medication that will hopefully be working very soon for your son.

I don't know about LDN as it was never an option for us.
 
My daughter E was quite sick by the time she was diagnosed last December. My husband and I researched a lot in the first week after diagnosis, about both traditional and non-traditional treatments, and were happy with our doctor's recommendation to start Remicade immediately. When E didn't respond to the Remicade right away, we decided to add SCD. Like Pilgrim, we did it by the book for 3 weeks. My daughter's external symptoms (abdominal pain and diarrhea) decreased markedly with the diet, but her inflammation markers (sed rate and CRP) stayed sky high, and she lost weight to the point of being dangerously underweight. We ended up having to add NG-tube feeding, steroids, MTX, and antibiotics (to fight an abdominal infection), and with all that, E finally started gaining weight, and her sed rate and CRP have finally dropped to normal levels in the last month.

As she came off the NG-tube, we tried at first to stick to an SCD-like anti-inflammatory diet, but I just don't think it's the right diet for her. Every time we tried to add things beyond the introductory foods, she would have cramping and diarrhea. When we finally decided to try adding some non-SCD foods like sourdough bread, oatmeal, and potatoes, she's done well with them.

So that's a long way of saying that SCD didn't work for my daughter. But I'm not sorry we tried it, since I do think that there is a dietary component to healing. If you decide to try SCD, though, I'd do it as a supplement to your son's medicines, not in place of them.
 
http://crohnsmapvaccine.com/literature-supporting-hypothesis-that-map-causes-crohns/

I thought I would share this link if any of you are interested in showing this study to your childs GI
I am taking this to my sons GI at his next visit in a couple weeks.
In any hopes that this may help I am willing to open the dialogue. His GI is pretty open minded and driven to finding a cure as well through his own trials with fecal transplants.
Being open minded is difficult in the medical world I am sure but if there is any chance of this helping I will atleast discuss with the GI
 
H is too young to participate in the study, but I have heard from other parents that for a small fee you can send the results to a lab for interpretation.

I have no idea how to tag. MLP (aka mrchicken)?
 
Is there a link (or how strong is the link) between anxiety and crohns? I have all of these people giving me parenting advice, and they are pushing me towards anxiety. That doesn't seem to fit AT ALL for my little girl. It is making me crazy. :( Unfortunately, it is family that I can't just shut down right now, since I love them even with all of the parenting "advice".

Also, does anyone else's child have headaches, more than would be normal at this age? Is abdominal migraine a possible alternative diagnosis? (We have more than just pain, there are physical symptoms like bm patterns also).
 
trinity1913 said:
Is there a link (or how strong is the link) between anxiety and crohns? I have all of these people giving me parenting advice, and they are pushing me towards anxiety. That doesn't seem to fit AT ALL for my little girl. It is making me crazy. :( Unfortunately, it is family that I can't just shut down right now, since I love them even with all of the parenting "advice".

Also, does anyone else's child have headaches, more than would be normal at this age? Is abdominal migraine a possible alternative diagnosis? (We have more than just pain, there are physical symptoms like bm patterns also).
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My son has suffered from migraines for years long before crohns showed up. He seems to have them worse now especially after physical activity. I'm not sure if the inflamation causes dehydration leading to migraine.
And I'm not sure if migraines were an indicator of crohns, who knows.
I am having to get him on a daily preventative med to control the headaches. He does vomit when he had his migraines as well.
 
trinity1913,
I don't have any suggestions regarding the headaches. But I do want to offer support to you regarding the 'anxiety' diagnosis from family members.

My son, who is now a healthy adult, probably had Mastocytic Enterocolitis (ME) as a child although at that time he was not given that specific diagnosis. School staff, friends (who were health professionals), family members (also health professionals) and the first pediatric GI we saw all brushed off his symptoms of bleeding, strange bowel patterns, poor appetite, weight loss, pain, nausea, and fatigue as 'anxiety'. Now I have another family member who has anxiety severe enough that they require medication and therapy to treat it, so I am not discounting anxiety as a serious medical problem. However, the treatment for anxiety that may cause some digestive upset and the treatment for IBD that may get worse when one is anxious are very different; therefore, it is important to know which one you are dealing with.

One day when my son woke up with swollen fingers and toes in addition to his other symptoms, I absolutely insisted that he be seen again by another pediatric GI. After just having me complete a detailed questionnaire, the new GI was fairly certain of my son's diagnosis. He had a protein-losing enteropathy that the doctor thought was caused by an allergic-type response in his intestines to inhaled environmental allergens such as pollen. With the correct treatment, he was symptom-free within a year. (Fortunately ME is an IBD that is often cured with medication, unlike Crohn's and UC.)

So trinity1913, trust your mummy gut. None of the doubters have ever apologized for not recognizing what was happening to my son, nor for not supporting me (in fact, I was accused of being overprotective, and overstating the seriousness of his symptoms); but my adult son has thanked me several times for persisting in my advocacy for him so that he could grow into the fine young man that he is today.

There are many here on the forum that have been in your shoes--many the energy of our support help you to continue to seek health for your child. Good luck.
 
happy said:
trinity1913,
I don't have any suggestions regarding the headaches. But I do want to offer support to you regarding the 'anxiety' diagnosis from family members.

My son, who is now a healthy adult, probably had Mastocytic Enterocolitis (ME) as a child although at that time he was not given that specific diagnosis. School staff, friends (who were health professionals), family members (also health professionals) and the first pediatric GI we saw all brushed off his symptoms of bleeding, strange bowel patterns, poor appetite, weight loss, pain, nausea, and fatigue as 'anxiety'. Now I have another family member who has anxiety severe enough that they require medication and therapy to treat it, so I am not discounting anxiety as a serious medical problem. However, the treatment for anxiety that may cause some digestive upset and the treatment for IBD that may get worse when one is anxious are very different; therefore, it is important to know which one you are dealing with.

One day when my son woke up with swollen fingers and toes in addition to his other symptoms, I absolutely insisted that he be seen again by another pediatric GI. After just having me complete a detailed questionnaire, the new GI was fairly certain of my son's diagnosis. He had a protein-losing enteropathy that the doctor thought was caused by an allergic-type response in his intestines to inhaled environmental allergens such as pollen. With the correct treatment, he was symptom-free within a year. (Fortunately ME is an IBD that is often cured with medication, unlike Crohn's and UC.)

So trinity1913, trust your mummy gut. None of the doubters have ever apologized for not recognizing what was happening to my son, nor for not supporting me (in fact, I was accused of being overprotective, and overstating the seriousness of his symptoms); but my adult son has thanked me several times for persisting in my advocacy for him so that he could grow into the fine young man that he is today.

There are many here on the forum that have been in your shoes--many the energy of our support help you to continue to seek health for your child. Good luck.
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Thanks so much for that. I doubt myself most of the time, but will keep pushing through till we figure out what is wrong. I appreciate the support
 
Hello...

Bloodwork has started coming in, and some of the stool work. The Dr. said all is normal, so far. Results below - anything stand out other than "in range"? Only the eos and lymph% are a little high, and what I found online says as long as the wbc is OK, that doesn't matter so much (basically - it was more complicated than that, but they weren't scary high)

Test Range Results
TTG IgA <20 UNITS 4
IgA 35-200 mg/dL 107
CRP 0.0-8.2 mg/L <0.1
Sed Rate 0-20 mm/Hr 2
Sodium 136-145 mmol/L 141
Potassium 3.5-5.1 mmol/L 5.1
Chloride 95-110 mmol/L 107
CO2 23-29 mmol/L 23
Glucose 70-110 mg/dL 85
BUN, Bld 5-18 mg/dL 18
Creatinine 0.5-1.4 mg/dL 0.6
Calcium 8.7-10.5 mg/dL 10.1
Total Protein 5.9-8.2 g/dL 7.1
Albumin 3.2-4.7 g/dL 4.4
Total Bilirubin 0.1-1.0 mg/dL 1.2
Alkaline Phosphatase 93-309 U/L 208
AST 10-40 U/L 33
ALT 10-44 U/L 16
Anion Gap 8-16 mmol/L 11
WBC 4.50-14.50 K/uL 6.09
RBC 4.00-5.20 M/uL 4.71
Hemoglobin 11.5-15.5 g/dL 13.3
Hematocrit 35.0-45.0 % 38.2
MCV 77-95 fL 81
MCH 25.0-33.0 pg 28.2
MCHC 31.0-37.0 % 34.8
RDW 11.5-14.5 % 12.2
Platelets 150-350 K/uL 313
MPV 9.2-12.9 fL 9.6
Gran # 1.5-8.0 K/uL 1.9
Lymph # 1.5-7.0 K/uL 3.3
Mono # 0.2-0.8 K/uL 0.5
Eos # 0.0-0.5 K/uL 0.4
Baso # 0.01-0.06 K/uL 0.02
Gran% 33.0-55.0 % 30.5
Lymph% 33.0-48.0 % 54.8
Mono% 4.2-12.3 % 8.0
Eosinophil% 0.0-4.7 % 6.4
Basophil% 0.0-0.7 % 0.3
 
Nothing screaming at me. Nice inflammation marker numbers and nice Hematocrit and HGB. That said, one of my girls doesn't show her inflamatino in her blood results.

What stool studies are back? Fecal calprotectin? Don't just take normal, get the actual number.
 
What I posted is all I have seen so far. She said some stool is back, none showing inflammation, but I have no idea what is blood and what is stool except that the cbc and electrolytes are blood, lol. They may be holding all stool for fc, if none of the stuff above is stool. Those should be another 10 days or so.
 
Doesn't look like any stool results, but like CIC says nothing stands out. My son's blood doesn't ever show anything even when we know inflammation is going on. We waiting on FC results here as well. I hate waiting for results, no patience here even when I'm 99% certain they are going to be fine.
 
My son had started getting very itchy bumps on chest back and face kinda look like mosquito bites they go away after a few hours. He's on remicade and methotrexate.
Any ideas what this might be from?
 
Well, that's a good number!

I read here from another parent that FC can be unreliable with small bowel disease but much more reliable when the inflammation is in the colon. DustyKat was it you?

Anybody else have more on that?
 
The way our GI explained it to me is that FC is just less reliable for small bowel disease but that just means that the numbers don't raise as high (ie: colonic in the thousands with a flare but small bowel in the hundreds) but in majority of the cases if you have small bowel disease they will at least be close to the upper limit if not over.

I would be very encouraged with that number. I forget off hand how old she is but younger than 10 they typically look for less than in the 160's so 23 is a very good number.

It isn't until over 10 that they look for less than 50 and even then it is a good number.

P.S. re: headaches...yes my younger daughter has issues with headaches One summer migraines with vomiting often. Early on in our journey we were told abdominal migraines but obviously that wasn't the case. But her FC was over 1,000.
 
Hi!

I am Hilary, and I have a six-yr-old daughter who has been having diarrhea, sometimes bloody, and stomach and back pain since the end of March. She had been through a battery of blood and fecal tests to rule out infectious causes and cystic fibrosis, but everything has been normal. She did have rather elevated liver enzymes, which sent us to a pediatric liver specialist, but those were from a blood draw taken about ten days after she had a terrible stomach virus (the whole family got it, so I am sure it was a virus, but she had much worse time of it than the rest of us, and ended up getting rehydrated by IV). The liver specialist sent her for an upper GI endoscopy, sigmoidoscopy, and liver biopsy. There was visible ulceration in her colon, but everything else looked fine, though the doc took biopsies during both scopes. We are waiting on biopsy results for a diagnosis...I hope. The doctor (liver specialist) has not really spoken to me at all. At my daughter's first appointment she (the doc) started talking in front of her (my daughter) and upset her so badly she (the doc) said she would talk to me by phone, but never did. I talked to her nurse several times but never the doc again. So... My questions are these: is ulceration in the colon diagnostic of ibd? Are elevated liver enzymes typical in IBD? Also, we have a follow up appointment coming up where presumably I will actually get to talk to the doctor, and I don't even know what to ask or expect. What questions would you suggest I ask? I really feel out at sea.
 
I wonder why the doc only chose a sigmoidoscopy as that doesn't visualize the entire colon nor the last part of the small bowel(which is a common place for CD). Also has she had a fecal calprotectin stool test? It can determine inflammation levels in the GI tract alone although it can't necessarily say the inflammation is CD.

Hopefully the liver specialist will have some answers but an appt with a GI specialist might be advantageous.
 
I went back and checked the second stool test and it was for pancreatic elastase (this was initially very slightly lowered, but both my pediatrician and the liver doc said it meant nothing, but perhaps that is why she rechecked them?), so I will ask about fecal calprotectin. I don't know the reasoning behind the sigmoidoscopy. The nurse relayed to me that the doctor had ordered the scopes after I called when L had three pretty bad days and I was concerned, and I didn't (and don't) know what is a sensible course of testing for diagnosing with her symptoms. The liver specialist is part of a larger pediatric digestive health clinic, so I may be passed on to a doctor who specializes in ibd. If it is ibd. I am kind of assuming it is, but maybe I am wrong.
 
If her digestive issues continued seeing a GI in the digestive clinic as well as the liver specialist may help to cover all the bases.

My son has never had liver involvement with his CD. I'm going to tag a couple parents:
Farmwife Mr Chicken maya142 crohnsinct jmrogers4

I'm sure others will be along as well. And that you find more answers with biopsies or further tests. Sending hugs!
 
I think you'll have to wait to see what the biopsies show. There also might be more tests - to visualize the small bowel (an MRE or pill cam) and since your daughter hasn't had a full colonoscopy, probably that at some point.

Can you have your daughter wait in the waiting room while you talk to the GI? Or bring a distraction - a book, a toy, an ipad (with headphones) so that she is not focusing on the conversation and getting upset.

My daughter did not have issues with liver enzymes so can't really comment on that.

Good luck!! Wish I had more helpful advice.
 
GirlwiththeCurl said:
Hi!

I am Hilary, and I have a six-yr-old daughter who has been having diarrhea, sometimes bloody, and stomach and back pain since the end of March. She had been through a battery of blood and fecal tests to rule out infectious causes and cystic fibrosis, but everything has been normal. She did have rather elevated liver enzymes, which sent us to a pediatric liver specialist, but those were from a blood draw taken about ten days after she had a terrible stomach virus (the whole family got it, so I am sure it was a virus, but she had much worse time of it than the rest of us, and ended up getting rehydrated by IV). The liver specialist sent her for an upper GI endoscopy, sigmoidoscopy, and liver biopsy. There was visible ulceration in her colon, but everything else looked fine, though the doc took biopsies during both scopes. We are waiting on biopsy results for a diagnosis...I hope. The doctor (liver specialist) has not really spoken to me at all. At my daughter's first appointment she (the doc) started talking in front of her (my daughter) and upset her so badly she (the doc) said she would talk to me by phone, but never did. I talked to her nurse several times but never the doc again. So... My questions are these: is ulceration in the colon diagnostic of ibd? Are elevated liver enzymes typical in IBD? Also, we have a follow up appointment coming up where presumably I will actually get to talk to the doctor, and I don't even know what to ask or expect. What questions would you suggest I ask? I really feel out at sea.
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Sometimes I bring a friend to appointments that can take my (same age) daughter to go play or whatever so she doesn't hear everything. She gets scared too. I hope you get results (and a phone call) soon!
 
From what I understand liver issues are caused more from the IBD meds than from the disease itself so it isn't unusual to not have liver involvement at diagnosis.

My daughter happened to have some liver and other issues at dx but the docs explained that it was more from the chronic mal nutrition than the Crohns itself. How is your daughter's weight and growth. Kids with IBD typically will fall of their curve.

Unfortunately, you are finding it is a lot of hurry up and wait with finding a dx for gi issues. I can not tell you the amount of times I hear the word patience!

I agree with the others, if they determine her issues are not from the liver, and the biopsies come out clean, then further evaluation is warranted.

A good place to start would be the fecal calprotectin test. Easy, noninvasive. An elevated number there usually points to an organic rather than functional (IBS) issue. It gives the doc more justification to move to scope or small bowel imaging to find the reason for the inflammation.

Not sure how bad the ulceration was but during my routine cancer screening colonoscopy (I don't have IBD my daughters do) they found ulcerations also. My biopsies came out clean. So I guess it is possible to have ulceration without disease. I would think just the diarrhea alone could cause that. Oh and also when I had a particularly bad bout of diarrhea (induced by antibiotic use) I also had bleeding. So hard to say.

You were right to get it checked out and keep pushing until your girl feels better!

Keep us posted.
 
I know I am being impatient. And I should be hearing about biopsy results soon. No doubt I have done too much googling of symptoms, too. :\

It is a good idea to bring someone with me. I wish I had done it the first time, and maybe I wouldn't be wondering what is going on. Or maybe this period of confusion is just normal, anyway.
 
You are being totally normal!!!! It is your child and she is suffering and you want answers! Nothing more frustrating than waiting. But fair warning...there is a lot of that around here.

When did she have the scope and biopsy done? At our hospital it only takes our doc a few days to get the biopsies back.

Hint: if you want to try to move things a long quickly and don't mind maybe having to pay for a test that the GI wasn't going to order, you could ask your ped to order the fecal calprotectin test now so if and when you get the GI referral you already have that done. That test takes at least a week to get results back and nothing more annoying than waiting for a GI consult to have them just order a test that means more waiting. This way you are ahead of the game:thumleft:
 
L is an extremely picky eater, so much that we wondered if her issues were from bad diet alone. When she was a baby she fell off the growth curve because she refused to eat. She weighed 15 lbs 7 oz at 18 months, but that is when i discovered she would eat french fries and fed them to her three meals a day for the next six months and she started to grow. She will eat more things now, but no vegetables and only a couple of fruits. She is about 15% for height and 10% for weight now, so her bmi is okay. She has lost a pound since our initial doctor's appointment for diarrhea in March, but for the most part she doesn't look or act particularly sick. She just continues with diarrhea (3-6 times a day) and periods of stomach pain.

She had the scopes and liver biopsy last Tuesday, so i hope to hear something before the end of this week. Our follow up is a week from today.

I do not have a feel for the severity of the ulceration in her liver. After the scopes the doc said her colon did not look healthy, and she was surprised we weren't seeing more blood in her stools, but she wouldn't speculate on a diagnosis because it was the biopsies that would provide the best information. I think that is a very reasonable thing for a doc to say, but i am a know-all-the-possibilities sort of person. :p

Thanks for everyone's support. I appreciate it. :)
 
OK stupid question here but was it a GI who did the scope and sigmoidoscopy? Just asking because with both of my daughters our GI declared Crohns on sight. Biopsies were just a technicality. My oldest daughter was severe so it was obvious but my younger one was pretty mild.
Maybe your doc just wants to be extra cautious and sure...which is never a bad thing!

Her eating....hard to say there. I think a lot of kids self limit their food choices not so much because their picky but the healthier foods bother them. Could be a good sign that she gained but she is also pretty young so hard to tell if the weight plateau is just hitting now.

See? Everything clear as mud with GI issues AND no two are alike.

Sending lots of fast biopsy vibes your way!
 
My daughter was pretty mild at diagnosis but even though there were ulcers through her colon (small ones) and at the end of her small bowel, they still would not call it Crohn's until the biopsies came back. It might just be protocol at some hospitals?? Not quite sure.

My daughter was also like yours when she was young - she would eat a few vegetables, but NO fruit at all. She said it hurt her belly. At the time, we thought she was just being picky, but now given how many issues she has with fiber, it really could have been related to that. She can now eat only VERY well cooked veggies and eats a lot of soups.

Nutritional supplements like Pedisure and Boost could help with weight gain, if you can get her to drink them.

Good luck!
 
Boy can I relate to this post. I have just recently been diagnosed with crohns and mother-in-law has had small and large intestines removed due to crohns. so my entire married life I've been familiar with Crohns. my oldest daughterhad the soy milk allergy diagnosed at three months and has had tummy issues ever since and my son is been diagnosed with coscocondritis and has constant stomach issues also was stung by jelly fish before onset. Now that I have been diagnosed it seems a logical jump to have kids tested, but I am nervous about what they will have to go through. My diagnosis has been a bumpy road.
 
Just dropping in to say that I will not hear results until Monday at the earliest. I called to ask for results but the pathologist who was going to review the results with our doc was out until Monday.

Crohnsinct--i don't totally understand what the different levels of med school are, but L's doc has completed a fellowship in pediatric gastroenterology. So yes, she is a GI (and she is the one who did the scopes). But she specializes in liver disorders, or at least, she works in the liver clinic part of the digestive health clinic. Actually, when I called about the results the rep I spoke with said she works with two different populations within the DOC, so she must have a broader range of practice than just liver problems. I think there must be some sort of protocol for results at the hospital, especially if they have to review them with a pathologist.
 
And L's doctor had a baby on Saturday. Early. (But the baby is fine, thank goodness.) I called today and her nurse said there is evidence of colitis and liver disease (autoimmune hepatitis) in the biopsies but that the doctor will call me to discuss and prescribe medicine. Meanwhile, we can get an appointment with another doc sometime in August.

I am not upset with the doctor, of course. But I feel kind of distressed. I don't feel great about starting a medication without a fairly long discussion with the doc. But she just had a baby! Even when she calls I will feel like I can't take much of her time. 😕
 
Take your time on the call
Autoimmune hepatitis can mimic crohns
Hopefully the meds will help and your kiddo will be back to normal soon
Glad you have a dx
 
When the doc does call and go over everything you could ask for an email address so that you could present any concerns or questions you may need addressed? That way they could be addressed at her convenience and not crammed into a hurried convo.

We email all non emergent questions to our GI office but if it is something occurring in the moment or I feel needs attention we speak with the GI nurse and she gets back to us quickly.

I don't know, such a hard position to be in and I do understand where you are coming from. The other Dr she is to see will that be a GI could they get you in on a cancellation so they the GI could follow up on biopsies before meds were administered?
 
Yeah, my daughters' GI is the head of the department at our hospital but he only sees IBD patients. He has another doc on staff who handles the liver issues. O need a liver biopsy sometime soon and her GI told us the liver doc would handle it. He has plenty of training in it and can do it but best to be with someone who knows the liver issues inside and out. I guess this is why he isn't hesitant to dx IBD on the spot. He sees it all day everyday but if it were the liver.....

My mother has auto immune hepatitis. The drugs are very similar to IBD. Immunomodulator and steroids. There is an interesting book "Curing Courtney" I met the author and many people who used the protocol talked about in the book. It is a slightly alternative method (nutraceuticals) of dealing with Autoimmune Hepatitis but she is wonderful about speaking with people and giving advice on working with your GI and trying the protocol. At a minimum it is just a good book to try to understand the ins and outs of the disease.

I understand feeling bad about taking your docs time but she is obviously passionate about the care she delivers. She wouldn't offer the call if she wasn't up to it. Go ahead and take your time. Love Clash's suggestion of asking for an email. This is a difficult diagnosis and a lot to digest. You can't be expected to start a medical regime based on a 10 minute phone call.

:ghug:
 
Is there no one covering her patients while she is away? I would imagine she'd be on maternity leave for a while?

My daughter's pediatric rheumatologist was on maternity leave for 3 months and we saw two other docs in the practice during that time. The other docs were also the ones who started M on her first anti-TNF. It wasn't ideal not to have her doctor who knew her best starting treatment, but we couldn't very well wait 3 months and they did consult her rheumatologist via phone/email.
 
Thanks for the responses, all.

Clash--I think I will ask the doc how and to whom to address questions that I will no doubt have in the next few weeks, either via email or some other way. Getting in to another doc on a cancellation would be great, but unfortunately it is a three hour drive for us and logistically it would be problematic, since a clinic trip takes all day.
Crohnsinct--For some reason I was really unprepared for the dx of autoimmune hepatitis (though I was not happy about the colitis dx, at least I was expecting that, more or less). I mean, all the follow up liver blood work was normal (except that liver enzymes were still elevated, though much lower than initially). I am really not eager to start giving my six yr old lots of steroids for a long time. I will look into Curing Courtney, thank you.
Maya 142--yes, I just assumed that another doctor would be stepping in to cover for L's doc while she was on maternity leave. Evidently not? I don't really understand how that could work. She will be back sometime in September, and as this is a long-term thing I guess in the scheme of things it is not a big deal. Except for this just being the beginning for us, so it feels like a big deal.

Deep breath...
Thanks again!
 
It definitely does feel like a big deal. I would ask the clinic if anyone is covering, just to clarify. I just can't imagine that they're leaving all her patients without a doctor!! That just doesn't seem right!
Hope someone can get back to you soon - either your doc or someone covering so you can get your daughter feeling better!
 
We had that problem with C's last rheumatologist. She had her baby and was out for 3 mos with no one covering for her. We had to move on, we already had problems with her demeanor and not being able to have her available was the straw that broke the camel's back. C was a new patient at the time and we had only seen her once maybe twice.

Hopefully there is something in place to meet your needs and concerns while she is out. I do remember the kind of set adrift feeling when her nurse told us she wouldn't be available.
 
Hmmm..I guess the first question is what did they mean by colitis? Colitis just means inflammation of the inner lining of the colon. You could have colitis due to many issues and not necessarily IBD (infectious colitis, allergic colitis etc). So I would want to know whether or not they are still suspecting IBD and what exactly those colon biopsies showed. If they are dx'ing her with UC then you are probably going to be treating with meds anyway and the upswing is the meds are the same ones used to treat AH.

When is the call scheduled for? Can you maybe write out all your questions and send them to the nurse so she can forward to the doc? This way the doc can prepare for the call a little better.
 
Hoo doggy!

(Can you tell I am from Wyoming?)

I heard from the doctor yesterday. In addition to AIH, L has primary sclerosing cholangitis. The doctor said that the biopsies did not show specific evidence of UC or CD, but that inflammatory bowel disease is associated with both AIH and PSC and that she feels confidant L has early onset ibd. Fortunately, L's liver shows only a little scarring, and is likely to respond well to meds. We are starting Prednilosone, ompremazole, and Ursodiol and will add Imuran if L's blood work shows she can metabolize it. I am hoping her liver enzymes will drop quickly so we can wean her off the steroids quickly.

Goodness. My poor sweet daughter is either going to get used to needles quickly or be emotionally scarred. She had already been poked a lot and a couple of times have been pretty long and painful. Any suggestions on how to make this easier?
 
Oh so sorry to hear that. I thought about PSC but with the IBD being up in the air I thought it would possibly just add undue stress to mention it.

Ok so she might try buzzy bee. You can Google it. But there are several parents here that have used it, Mr chicken Farmwife. Some labs have their own and sometimes you have to self purchase.

Also early own my son would ask for EMLA cream. So the glop on the EMLA cream where the needle stuck will be, cover it with clear tape, wait a few mins and then wipe clean and give the shot. The EMLA cream numbs the area.

Since my son was in remicade then injection mtx he got used to the sticks and doesn't ask for the EMLA any more. But he did say it made the needle stick pretty much pain free
 
Hidy ho, call ya tell I'm from Michigan. lol

My girl was dx at 3 but is now six. She also had to get use to needles...fast!!!!
We used the Buzzy Bee and then the Emla cream and now she uses a numbing spray.
As time has gone on she is now so use to it that she helps the nurses do it!

My girl also lives in the strange of "early IBD".
I hope your child is feeling better soon.
HUGS
 
My 12-year-old uses EMLA (lidocaine) cream for every blood draw and IV. It's been hugely helpful for her. We've found that it needs to be on for at least 45 minutes to work well, so we put it on at home before appointments. We apply it liberally, then cover the cream with saran wrap, then cover that with Coban.

You can get 4% lidocaine cream over the counter, or 5% by prescription. Both work well.

I hope your daughter starts feeling better very soon.
 
Our daughter was diagnosed at three (with many months of blood draws before diagnosis). We tried buzzy bee but it caused too much anticipation and stressed her out. In the end we just fought through it with no extra creams or numbing agents.

She adjusted and is a "pro" now when it comes to the blood draws and her (now weekly) Humira injections. She counts through the pain (being 4yrs old it is like this 1,2,3,4,5,6,35,42...LOL). She always watches the needle. Quick is best for her psychologically.

I would definitely use a numbing agent for an IV though. They are big sticks for such little bodies.

Each kid is different and with different pain thresholds. We noticed that when she was feeling her worst she was least able to cope with the needles. Although the reality is that they do get used to it all too quickly.

I'm so sorry for you with the diagnosis. I hope you can find all the resources you need to understand the liver disease process and treatment, and that you take care of yourself too, so you can be strong.
 
Ds started allergy shots at 4.5
At that age quick was better
Then he didn't need creams for a while
Just buzzy for iv sticks
But over the past year too many bad iv sticks ( multiple times without getting a vein)
And bad blood draws
We went back to bringing Emma cream
Freezy spray and buzzy and letting him choose
Much better that way
A few good iv sticks goes a long way
 
Hello GirlwiththeCurl,
I am paging QueenGothel for you as her daughter was diagnosed with Primary Sclerosing Cholangitis and she may be able to give you some advice. I believe that her diagnosis may have changed, but QueenGothel is very knowledgable about the condition.
 
Oh man! Hugs:ghug: That is a lot to absorb. For now I wouldn't worry about the IBD...deal with the here and now and what you know...the two dx's. They are both tough ones. Like I think I said before Imuran is used to treat both AIH and IBD so maybe you won't really have to cross the IBD bridge for a while.

I would also be pursuing a second opinion. There is no harm in that and any confident doctor would welcome the added pair of eyes. Sorry I don't know of the best hospital for childhood AIH or PSC but a google search will probably turn something up.
 
Pilgrim said:
Well, that's a good number!

I read here from another parent that FC can be unreliable with small bowel disease but much more reliable when the inflammation is in the colon. DustyKat was it you?

Anybody else have more on that?
Click to expand...

Better late than never? :eek2:

Yes that was most likely me Pilgrim!

Over the years I have seen the consensus go from FC not being a very good marker at all for small bowel disease to the more recent studies saying that small and large bowel are on an even keel when it comes to reliability.

I still think there is quite a bit of divided opinion between GI’s though. The kids GI does his own comparisons using FC’s in line with scopes and based on what he is seeing he is of the opinion that FC results with small bowel disease don’t correlate at all well with scope and pathology findings. By that I mean he is getting normal FC results and abnormal scope findings.

All that said, Matt’s recent FC and scope result matched, both abnormal.

Dusty. xxx
 
my daughters' gi also pulls fc and does scopes and imaging to see if they correlate and takes it from there. He said more often than not he does find fc correlates with small disease.

Fwiw all t's disease is in t.i. And her fc also correlates with disease activity.
 
Hi everyone. I posted in the past and we are still waiting for answers for my daughter. Paediatric gastroenterologist thought it might be Crohn's but endoscopy and colonoscopy were fine and she said there was only a little lymphoid hyperplasia in her small bowel (capsule test). My daughter is now 18 so has been passed on to adult clinic (we are in Scotland). Adult gastro has said he thinks we are looking at emerging Crohn's when he puts everything together. Her calprotectin levels have been 133, 405, 900 and the last one dropped to 257. She is suffering from low ferritin levels for the last 4 years and has constant mouth ulcers. He said from capsule test done at kids hospital there was a small area of thickening in the small bowel but he doesn't know how significant this was. Could it be possible she is having false calprotectin levels from taking Eseomprazole (nexium)as this has been mentioned in the past. She doesn't have a runny tummy but is always constipated, in pain and has been bleeding at times passing a stool (put down to fissures but never checked). He said when we go back in six months he may trial her on steroids just for the bowel but is waiting till rheumatology have carried out their tests as she also now has a positive ANA antibody test. Has lots of ongoing issues. She also has Type 1 Diabetes (been told she has delayed emptying also), Chronic Fatigue Syndrome, POTS, Angio-oedema and too much histamine. They keep bringing Crohn's up but no positive answers. Looking for any advice possible. Thanks in advance x
 
Sorry your girl is dealing with so much. High FC tests results are usually indicative of an organic issue rather than functional (think IBS). High values do not always mean Crohn's though. It could be from an infection, bacterial, viral, some celiacs although not all, NSAID use and a lot of the times Crohn's.

I am surprised the adult GI saw those climbing results, they hit 900 and he didn't scope. Curious that they went down like that. Does she take any NSAID's that she may have stopped that would reduce the number like that? NSAID's do not usually produce such a high number but maybe????

If she tests again and comes out high, I would ask for some imaging starting with scopes. I would want the doc to really know what they re dealing with. In Cohn's, steroids are great at knocking down the initial inflammation but you would need a maintenance plan. I am not a fan of "throw steroids at it and see if it helps"...if it does then what? Take steroids away and if it is Crohn's let the inflammation come back? That isn't a sound plan.

Good luck. I hope she feels better soon.
 
To cic point
Spondylarthritis can cause sub clinical gi inflammation
Not enough to be called crohns but enough to be there
It can flare when joint flare and go away when joint pain does or run independently of each other
Steroids would also "fix" it without you know what you were fixing .
 
Cat26,
I am wondering about the "too much histamine".

There is an inflammatory bowel disease called 'mastocytic enterocolitis' where the diagnosis is obtained through special staining of the mast cells (this has to be requested when the biopsy is submitted) from a 'scope (usually a colonoscopy). It is thought that the disease is caused by mast cells releasing too much histamine in the bowel--it was described to me as "an asthma attack in the bowel". The treatment for it is to take antihistamines and mast cell stabilizers.

I believe my son had this when he was a child although he had no staining of the biopsies and there was no name for the condition then; however, he did have a lot of nodular lymphoid hyperplasia. He was put on Sodium Cromoglycate for about a year and he has had no problems with it since!

Here is some info about the condition: http://www.crohnsforum.com/wiki/Mastocytic-Enterocolitis

Some of the threads in the microscopic section of the forum discuss Mastocytic Enterocolitis (ME). http://www.crohnsforum.com/forumdisplay.php?f=258

As well, this condition can be part of a more serious syndrome, systemic mastocytosis. Because of your child's other conditions and symptoms, it may be worthwhile checking for both conditions.
http://www.aaaai.org/ask-the-expert/mastocytic-enterocolitis.aspx

May you soon have more complete information and effective treatment for your child.
 
Thanks for all the replies.

When paed consultant saw rising calprotectin she carried out two endoscopies, two colonoscopies, a MRI of small bowel and one capsule endoscopy (over a year ago now) but nothing to be found except some lymphoid hyperplasia in small bowel (which adult consultant said was some small thickening in small bowel).

She has not been allowed any anti inflammatories as they found gastritis four years ago in her tummy which is why she is on Nexium. She also has significant acid and non acid reflux.

She is being referred to a specialist clinic for the histamine problem (I did ask if it was mast cell activitation disorder) as it can go hand in hand with POTS (postural orthostatic tachycardia syndrome). She is on an anti histamine at the moment and has been since May. She gets swelling to her face, lips, left knee, fingers and swelling over rib area.

This is the first time her calprotectin has been checked since the level of 900 over a year and a half ago. We have been told you can sometimes get a false high calprotectin with nexium but she has had four positive ones which seems strange. The only difference from last time to this time is she is taking her heart tablets and the anti histamine.

He said it may be worthwhile trialling her on steroids just for the bowel to see if it makes any difference but when he told us this it was before calprotectin result came back. He had no explanation as to why it had dropped. We don't see him again till February next year and have so many questions. I would like her to stop her nexium for a couple of weeks and repeat the calprotectin to see if there is any difference. When she has been bleeding before they have said probably fissures as usually on toilet paper but last few times its been in the loo and poo! She suffers so much pain and just wish they had some answers for us. Paed consultant had ruled out Crohn's only for adult to now throw it back in to the mix again.

Thank you for all your replies.
 
Just a couple of things to add Cat26.

Where on the abdomen is your daughter’s pain located?

Constipation is not uncommon in Crohn’s when disease is located in the small bowel (ileum).

Low ferritin levels are also not uncommon in those with ileal Crohn’s. Have they done a CRP (inflammatory marker) blood test? There is a significant match up between an elevated CRP and low ferritin when there is active ileal disease.

Dusty. xxx
 
Hi Dusty. She has slightly elevated CRP and ESR and both of these have been elevated for around a year (previously to that they were stable). Not high amounts but each time we get told slightly elevated. She gets pain all round her tummy but can be right side/left side and terrible backache also. She gets upper pain but we know that's to do with her reflux. She was bleeding again last night when she went to the toilet and she said there was also a couple of little blood clots on toilet paper. We are back at our GP tomorrow to let him know how bad she has been. Her ferritin level has been low for around 4 years (lowest level was 2). She is around 18 just now but they want her above 50 but just not staying up. Because she has lots going on I think they just don't have a clue and waiting on rheum to rule out lupus because of positive ANA antibody test. Its been over 2 years they have been querying Crohn's then ruling it out then querying it again. Just wishing for some answers. Thank you all for your replies.
 
Cat26,

What are they doing to treat the low iron? We treated what started out low iron levels for 4 years prior to my daughters Crohn's dx.

There are many reasons for low iron but it should response to treatment.

Have you had iron studies done? What do they say?
 
happy said:
Hello GirlwiththeCurl,
I am paging QueenGothel for you as her daughter was diagnosed with Primary Sclerosing Cholangitis and she may be able to give you some advice. I believe that her diagnosis may have changed, but QueenGothel is very knowledgable about the condition.
Click to expand...


http://sm.stanford.edu/archive/stanmed/2011spring/article6.html
GirlwiththeCurl,
Please read the above article and contact Dr Cox at Stanford about low dose oral vanco therapy. There are very promissing results. This article is 4 years old and kids have been in remission for even longer with this therapy and no sign of PSC.

My kid was dx with a biliary stricture and is suspect to have PSC. I assume they are searching for IBD because 80% of people that have PSC have IBD. It is very uncommon to be the 20% and let alone be a child.

As you know there are currently no therapies to halt the disease.

The best way to reach Dr. Cox is through the following website.
http://www.childrenspsc.org

QueenGothel
 
QueenGothel said:
http://sm.stanford.edu/archive/stanmed/2011spring/article6.html
GirlwiththeCurl,
Please read the above article and contact Dr Cox at Stanford about low dose oral vanco therapy. There are very promissing results. This article is 4 years old and kids have been in remission for even longer with this therapy and no sign of PSC.

My kid was dx with a biliary stricture and is suspect to have PSC. I assume they are searching for IBD because 80% of people that have PSC have IBD. It is very uncommon to be the 20% and let alone be a child.

As you know there are currently no therapies to halt the disease.

The best way to reach Dr. Cox is through the following website.
http://www.childrenspsc.org

QueenGothel
Click to expand...

Thanks, QueenGothel!

I did actually try to contact Dr cox through that website but never got a reply.; I should try again.

Right now our hospital is hoping to take part in a oral Vancomycin study, which we may participate in (assuming it gets funded).

Thanks for taking time to respond. I hope your daughter is doing well.
 
Hi! I'm new to this forum and I'm in need of advise. My son is 7 yrs old and still having accidents in his pants and will not go in the toilet. We have had this issue for a while and it's nothing new but it's also not getting any better. We have been going to lots of doctors to figure out what's going on but we do not have a diagnosis yet. My son does have a lot of anxiety when it comes to going to the bathroom and also bath time. He shuts down when I try to help him and talk to him about it. We have a routine that a doctor wants us to follow but there is no progression. His teachers feel he may not be able to feel it when he has an accident. I'm not sure if this is behavioral I know it's physical but I just don't know what to do and any advise is greatly appreciated! I feel like a horrible mom sometimes because I don't know what else to do and I feel I'm not doing enough. He's been to so many doctors but obviously either they are the wrong Drs or they just don't know what to do either. Thank you for any advise or support!
Tara
 
Well obviously I am not a doctor but I can tell you your situation sounds eerily similar to the situation we had with our oldest daughter. She does not have Crohn's. She had encopresis. That is when they are so constipated that the softer stool actually leaks out around the hard stuff.


We also went to many docs and tried many things. Of course you have to figure out why they are constipated to begin with but the first step for us was to get her cleaned out. This issue lasted until she was 12!

So our doc had us use Miralax to make her poop so soft that she couldn't possibly willing hold it. Her muscles were very out of shape from not working properly for all those years. She had to regain muscle control and strength.

With that and diet changes and some behavior investigations...we found out this all started because she "learned" to hold her BM's. She tended toward constipation to begin with, so her bathroom trips lasted a while. I ws a working mom and always rushing around and saying, "hurry we are going to be late" Knowing a trip to the bathroom would make us all late, she just started holding her BM's and thus the decent into encopresis.

What kind of docs have you seen? Have you seen a pediatric GI? Did they do any tests? Does anyone in your family have IBD?

I wouldn't try what we did without a doctor supervising. I just offered it as something you could ask about and research further. I would be really surprised if a ped GI hadn't thought of it though. That is who helped us.
 
Was lurking, and saw lots of people talking about certain foods causing diahrea and or vomiting for their kids. People have also engines popping blood and mucus, one thing to bring up qith doctors in FPIES , it's relatively rare, our allergist is on e of the few doctors here in Canada that understands it. Our youngest started with profuse mucousy yellow diahrea, vomiting mucus , not growing , screaming in pain. Basically someone eats something, instead of the typical allergic reactions people are used to, it causes colitis type reactions.
I know people are looking for if their kids have crohns, but thought this may help someone out there who is looking for answers.(typing on phone so excuse horrific mistakes!)
 
At my wits end. My daughter is 16 years old. She had her appendix out in July at that time they also noticed an ovarian cyst that was a little large. She had additional stomach pain in August and doc wanted us to go to ER for CT scan. They did an ultrasound of the cyst instead. Everything was fine. Daughter was exhausted and had extreme fatigue and started having muscle and joint pain. Blood work from pediatrician indicated that she had previously had Epstein Barr 3 months prior. Still no relief, took her to a Rheumatologist - she had previously been to a rheumatologist for previous positive ANA test fatigue and raynauds syndrome. Mentioned that she was still having abdominal pain. Rheumatologist recommended going to see gastroenterologist. By now it was February. Gastro doc does a colonoscopy and endoscopy. Some inflammation in colon but thinks it is something acute rather than chronic have to wait for biopsy. At follow up visit states that based on the biopsy they think it is colitis maybe IBD but can't diagnose at this time. Put my daughter on Lialda and omeprazole. The pains at this time my daughter describes is burning sensation in upper abdominal area and stabbing pains in lower abdomen, low grade fevers daily, headaches, lower back, neck and knee pain. She has missed a lot of school. Lialda not helping at all, put her on prednisone, still no relief. Took her to psychiatrist, now she is on antidepressant. Blood work comes back with slightly elevated C reactive protein, slightly elevated platelets, slightly elevated liver SGPT. Her vitamin d is 21.
Lowering her prednisone from 20 to 15 to 10. Still having joint and abdominal pain enough to wake her up at night. She does not have diarrhea, no weight loss. She is mostly constipated. We are going for another colonscopy and endoscopy next week. I asked doctor about capsule camera but was told that is only for suspected bleeding. I am watching my child go from a vibrant teenager to an old woman and it is killing me not to be able to fix her. She is exhausted ever single day and is asleep by 7pm every night. Any suggestions?? If the colonscopy and endoscopy come back normal where do we go from here?
 
I would ask for imaging as well. An MRE (magnetic resonance enterography) as it is a great tool for visualizing the small bowel which an endoscopy nor a colonoscopy can get to. Also a fecal calprotectin stool test can determine if she has inflammation in her bowels though it doesn't exclusively determine CD or IBD.

As far as joint pain that is a common extra intestinal manifestation (EIM) of IBD. There are some forms that run concurrently with active flares of the IBD and others that run independently. My son has juvenile spondyloarthropathy(JSpA) with his CD as well as another joint EIM of CD. I would keep pushing with both the rheumatologist and the GI. Also, those with IBD shouldn't take NSAIDs as it can wreak havoc on their stomach/bowels so I would keep that in mind when dealing with the rheumatologist and joint pain.
 
I don't know how long Epstein Barr virus might affect liver enzyme levels, but if repeat bloodwork shows continuing elevated liver levels you might ask for a referral to a hepatologist.

My daughter has indeterminate colitis (almost certainly ulcerative colitis, but biopsies were inconclusive) as a secondary condition to a couple of autoimmune liver diseases. :/
 
As an update I just called and asked to get the results from the blood work my daughter had taken for the Prometheus labs. It states Pattern Consistent with IBD and has a check box next to Ulcerative Colitis also has IfA Perinuclear Pattern Detected and DNAse Senstivity shows Sensitive and STATE 3 states variant detected - Homozygous.

I am assuming this means my daughter has Ulcerative Colitis. Ticks me off that the doctor's office received these results on the 15th, saw them on the 20th and they stated the results had not come back yet. She is scheduled for colonoscopy and endoscopy on Tuesday.
 
Actually you can have a false postive in the test
The colonscopy and endoscopy will give you the answers you need

Good luck
 
My daughter's Prometheus test indicated she had Crohn's. We don't believe that she does (although she could develop it in the future). That test ended up confusing us instead of giving us answers.
 
So the test that the doctor insisted on. Cost me 700 out of pocket is not accurate?? My daughter is miserable, we need answers after 7 months we are both tired and frustrated.
 
Colonscopy /endoscopy
Pill cam
And
Mre
Plus fecal caloprotectin are the best at giving a complete picture

Took ds 8 months to get a dx at age 7
But once we did the colonoscopy he was dx

Good luck
 
Update: My daughter had the colonoscopy and endoscopy yesterday. Doctor stated that her colon looked perfect. Some slight redness in stomach area but no ulcers, now we wait for the biopsy results next week. My daughter was upset that nothing was found, doctor was perplexed as to why we would both want her colon to come back anything other than normal. After 7 months of testing and finding inconclusive results it would be nice to have a diagnosis. Just something that can be treated, just to know!!! Not sure where to go from here if the biopsy's are normal what do we do? She has abdominal pain, headaches, low grade fevers, extreme fatigue, back, neck and knee pain daily. I just want my happy vibrant daughter back!!
 
Has she seen a rheumotolgist ?
Juvenile spondyloarthritis can cause sub clinical gi symptoms ( not detectable on a Scope )
Also all the other things you are talking about
For my kiddo scopes always look pristine sometimes biopsies match and sometimes not
We also found dietary changes ( formula only ) help a lot in his case - no one knows exactly why and treating his JSpA
 
She has seen a rheumatologist that passed her along to the Gastro doc. However, I may make another appointment to follow-up with Rheumatoid doctor. Want to see if she will test her for Lyme disease? I am now grasping at straws. Doctor told us her blood work that she took prior to the procedures came back great. But when I read it there are a lot of high and lows - granted they were all just a little high or little low, but my thought is that a healthy 16 year old should have all normal readings?
Low - alkaline phosphatase, s 44 High - alt (spgt) 33
HIgh - WBC 11.8
Low - mchc 31.1
High Lymphs (Absolute ) 5.2
For once her c-reactive protein was normal 3.3
 

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