New here, and looking for guidance please

[nicumom]

Our son is 11. Back in early March he had severe belly pain - found out he was impacted. Which surprised us because he had recent bouts of diarrhea. We learned of course that with a severe blockage that stool can go around in the form of diarrhea.
He has had constipation issues off and on since he was in diapers. Never wanted to go #2, and sometimes it would take him 45 minutes. Sometimes it still takes him that long.
We are always told to start a routine with Miralax, but this time - the belly pain was more frequent than in other times. Gastro doctor did a stool sample and told us that his protein count was 166, and normal is below 100.
That's pretty much all we know. And endo and colonoscopy are scheduled in a few weeks. I don't know what to think or do - and don't know what questions to ask.
We were told that the high protein count indicates there is inflammation. But they did not elaborate. I thought a blood test already ruled out Celiacs but they said this biopsy is the only true way to rule out Crohns or Celiacs. I don't want out son put through unnecessary or evasive tests - but I'm tired of the look he gets when the pain hits his belly.
That's the only symptom that I'm aware of - no coughing, no fever, or these other things I've read about. He's had one - maybe 2 cold sores this year - don't know if that means anything.
They gave us a pill to put under his tongue that would help the pain when it starts - to slow down the inflammation but he says it doesn't work - so he won't take.
On a long shot here - my brother has C-Diff - he lives in another state - but my brother has visited my parents home - and so have we. The C-Diff germ lives for 5 months on surfaces. So in the back of my mind, I'm thinking maybe he caught C-Diff over spring break while visiting my moms house...because that is around the time it started. Might be a long shot.
Sorry for the long post - I am new here - and I wanted to share my story and find out what questions should we be asking? What tests should we expect? My son can be playing and having a great time - then suddenly the belly starts to hurt - and he does unusual things to distract himself...like taking a comb and rubbing it on his stomach. I asked the Dr. if all this was in his head, and he said NO. I'm sad that I can't make the pain go away. I'm around him all summer and now school starts in 2 days. I hope the teachers understand when he needs to step outside of class. Waiting on this test is driving me nuts. Thank you for you help and guidance!!!

 

[Farmwife]

Hi and welcome from up here in Michigan.
I'm so sorry a 11 yr old has these issues.
As a mom I can relate on how hard it is to watch our dear children go through all this.
My girl is 4 and much like yours has suffered from more constipation and stomach pain then anything else,
well until the last year and them she started suffering from a lot more.

Scope are the only real way to get a firm dx of IBD.
His fecal Cal stool test was elevated but a flare is usually in the 1000's.
So could it be IBD..maybe.
could it be something else...maybe

May I ask some questions to you?
Does he have any joint/skin/eye problems.
How about his height and weight?
How does his blood work look?
Does he suffer with allergies?

 

[Tesscorm]

It's so tough to see your child in pain and be helpless! And, waiting for answers is horrible! Hopefully, you can get some answers asap!

I haven't had any experience with c.diff. so I can't help there but I'm sure some other parents will be along soon.

As far as crohns symptoms, there can be so many and it varies from person to person!!! :ymad: Some of the more common ones would be fatigue, lack of growth (weight/height) or a slowing rate, weight loss, paleness/anemia, nausea, heartburn, lack of appetite, pain, constipation or diarrhea (or both), fevers, canker sores, blood in stools, night sweats, back or joint pains - of course, not all of these necessarily point to crohns!!

Bloodwork may also reflect elevated levels of CRP and/or Sed Rate (both indicate inflammation is present but not necessarily intestinal inflammation) - in some people, blood work does not indicate active crohns. Fecal calprotectin or Lactoferrin are stool tests that can indicate intestinal inflammation. Scopes are not able to reach into the small intestine (can reach only so far); to see small intestine inflammation, other imaging needs to be done - MRE, CT scan, ultrasound, etc.

It would also help if you keep a journal of symptoms.

There are lots of knowledgeable and supportive members here! :ghug: Feel free to ask any questions!

I hope the scopes are scheduled soon and you can move ahead with treatment, whether for c.diff., crohns, etc. :ghug:

 

[nicumom]

Thank you for the welcome! Of course you may ask me questions! he does not have any joint issues that I know of - he's not one to normally complain and I've always called him our healthy child. Our youngest has asthma. Our oldest (the 11 year old) - his only issue has been constipation over the years - and even when he's regular - he will sit there forever. He is short for his age, and his weight is probably average. 75 pounds. I don't know what blood work looks like - they did some tests but aren't concerned other than to do this endo and colonoscopy. The blood work was in early July and we have to wait until 2nd week of September for the procedure. No allergies either. I did hear the doctor mention he probably had a fischar? I can't spell it correctly - it's not a hemoroid, but something internal - which I saw on a list of common symptoms...for Crohn's.
I'm sure we all wish we had a magic wand to cure our kids. I'm sorry your little girl is suffering with health issues. I'm just so lost and confused wondering what questions to ask our doctor and what to expect.

 

[nicumom]

Thank you Tesscorm for the post. I wonder why they haven't done an MRI or ultrasound. We saw the gastro in early July - and have been waiting this long for the endo and colonoscopy. Shame that it can't reach the small intestine. How do they get accurate test results? Is there a certain blood test I should ask about? It's going to be the longest 3 weeks ever waiting on this procedure - I know all the parents here have played the waiting game. It's hard!

 

[Tesscorm]

There is the Prometheus test that can indicate crohns, however, I don't believe it's a routine test unless there are other indications that crohns is possible??? Biopsies taken during the scopes can confirm crohns. But, neither of these are foolproof. Prometheus is not 100% accurate and, my understanding is that a biopsy sample that indicates granulomas can confirm crohns but a biopsy sample that does not show granulomas does not mean crohns is not there (it just confirms that it's not in 'that' biopsy sample! :ybatty

A diagnosis seems to come from a number of indications which can include Prometheus, biopsies, imaging results, blood work (CRP, Sed Rate, HGB levels, plus others), stool samples and presenting symptoms.

When my son was diagnosed, he had on/off again fevers, had lost weight, was anemic, had canker sores, night sweats, on/off again diarrhea and recurring backpain (no abdominal pains, no blood in stools, etc.). Blood tests showed elevated levels of CRP and Sed rate and low HGB levels (plus other indications, I imagine??) and ultrasound showed some inflammation and/or thickening in various areas of his intestines (large and small). He was tentatively diagnosed based on these symptoms/results and admitted to hospital. He had scopes done a few days later and diagnosis was confirmed.

 

[nicumom]

Why are the children being admitted to the hospital? For further testing? I don't mean to sound stupid - I just don't know. I was going to login to the hospital website to post and share the test results we have but of course the site is having issues. All I know is they said the protein was 166 and it should be under 100 - nothing said about other tests - I just can't believe we have to wait this long - we've been waiting since early July! by the time the procedure rolls around, it will be 2 months since we met with Gastro and 6 months since the symptoms started.

 

[Jmrogers4]

Welcoe nicumom, My son is 14 and was diagnosed at 10. Stomach pains, weight loss and lack of growth (although didn't notice it at the time just looking back realized he had not grown for a year) prompted the ped to order blood tests which showed elevated proteins which prompted the referral to the ped GI where scopes were scheduled for a few weeks out which confirmed the crohn's diagnoses.
I wish I remembered what his labs all showed at that point all I remember is the protein in the blood and the GI saying we need to look at Crohn's. I was quite in shock at the time and don't think I took in everything that was said to me and unfortunately did not find this site until a few years into it.
Like farmwife says it could be any number of things but it sure is hard to wait when you want answers now so that your son can start feeling better.
You could always call and see if you could get scopes bumped up if there are any cancellations.
Hope you find answers soon.

 

[nicumom]

Thank you JMRogers for the welcome. What a friendly board. I'm so sorry that your son has this. Our family ped. was not concerned about the years of constipation or the impacted bowel in March. When he learned I had gastro appt he said, "I think I can handle constipation." - Didn't even think outside the box - and it has to be something MORE than constipation - when test results indicate the inflammation. I was surprised when the gastro set up the appt in July, when we first spoke they thought there was an opening the following week - took her a week just to call me back because she was on vacation - and said there was nothing until sept. 9th...they know we want in early - I'm just surprised it took that long to schedule...and he sees patients in the AM and procedures in the afternoon - I'd think it would be vice-versa since the kids can't eat or drink prior to surgery.
I notice under your posts - the names of meds I'm guessing that your child is on? I don't know anything about Crohns, but am getting a gut feeling. is it hereditary? Thank you for the support - many boards on other topics there isn't much of a welcoming committee - everyone here is so wonderful! thank you!

 

[Clash]

Welcome to the forum, nicumom, sorry you have a need to seek us out but there are so many knowledgeable members here with a wealth of information, compassion and support.

Our GP kept telling us our son had a virus. His symptoms were kind of non-specific, he was having low grade fevers at night, mouth ulcers and some other issues. He was short for his age and fairly thin but it wasn't seen as an issue. We were referred to a GI when slight anemia showed up in his blood work. The GI was great and apparently knew all the right questions to ask because after speaking with my son at the consultation he felt C was dealing with Crohn's disease. A colonoscopy soon after confirmed this.

I hope you are able to get some answers quickly and find relief for your son!

 

[Jmrogers4]

Yes and No on the hereditary, there are so many components that make up who will and won't get Crohn's and genetics is just one of those. Current belief seems to be some hereditary component (any autoimmune disease), environment and a trigger
There are many that have no history of any autoimmune disease in their family yet wind up with Crohn's so unfortunately there is no easy answer to that one.
Ours schedules scopes once a week which we have always been lucky to get in quickly but it seems fairly common to have to wait a month or so from others comments.
Yes signature includes current meds and past meds we have tried.
Most of us here in the US have 504 plans that deal with Crohn's and school but you might just talk to the nurses and set up a health care plan until you get your answers. You could put anytime access to bathroom especially the nurses bathroom as usually don't have to worry about anyone else in there. I've also found a chat with teacher/principal and open communication were a tremendous help.
Someone posted a list of questions a while ago to ask. I'll see if I can find and post the link.

 

[iriechic]

Hi Nicumom,

Sorry to hear about your son's GI issues. I wanted to chime in because I unfortunately experienced C.Diff in May of this year. I disinfected and bleached like crazy to prevent my children and husband from getting it. I even had one bathroom dedicated to my use only and didn't use the other two bathrooms. I took antibiotics and then did fecal transplants (costly!) to ensure it was gone. I would suspect that if your son had C.Diff he would feel so unwell that he wouldn't want to get off the couch. And if he did get up, it would likely be to go get sick in the bathroom. If he's not having diarrhea more than 3x/day with the other C.Diff symptoms (nausea, fever, dizziness, etc.) it's probably safe to say he doesn't have it. If it would give you peace of mind you could always get the PCR C.Diff test done (most sensitive/accurate test). Again, so sorry he's having belly pains and he's blessed to have a proactive mom looking out for him! I hope you get answers soon and he feels better fast!

 

[CarolinAlaska]

Hi. Sorry your son is not feeling well and has to wait so long to get in. It was like that for us last year when my daughter was diagnosed. Once we got in the tests followed fairly close behind, then the waiting for the biopsy report then it all hitting like a brick...yes, we wanted a diagnosis and a plan - but not that one! She had never had blood in her stools! I was in a lot of denial and took a while to figure it all out. Hang in there, the 9th will come quickly.

As for those kids admitted in the hospital - it is usually for severe anemia, severe abdominal pain, not holding any food in, gross rectal bleeding, etc...