My 3 year old is going in for his first colonoscopy and I want to cry.

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Emilie

Joined
Nov 11, 2013
Messages
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Hi-
I am so glad I found this forum. I've been reading through so many of your stories over the past few days and I appreciate the wealth of information here.
Technically my son is still undiagnosed but that has been the case for for the last 2 years he has been sick with this phantom illness. Symptoms: fatigue, zero growth*, pain in his whole abdomen (sternum, behind belly button and lower abdo., too,), poor/anorexic eating, joint pain, headaches, constipation, and the list goes on. He also has other health problems: dysphagia, recurrent lung infections, difficult to control asthma,skin discoloration, tremors, seizure activity, and some other stuff that is not(?) seemingly GI related. *He suddenly started growing when I switched him from Ensure to Neocate.

We've seen countless specialists and had lots of normal test results including 2 clear upper endoscopes (Drs refused to do colonoscopy before) until we finally went to the Mayo Clinic in MN. Viola! CT scan shows thickening in the jejunum and his fecal cal comes back over 300. Also something about white blood cells in the ileum. Apparently, the CT scan looks like "textbook Celiac's" but we've run all the blood and genetic tests also came back negative so they're predicting IBD now. I realize this is not a slam dunk of a diagnosis but it is the closest we have ever come to something tangible. I feel like we are finally thisclose to having at least one answer and the wait is so hard. Making it harder on me is that I can't go to the colonoscopy, my husband is going. He never, ever handles the medical stuff and I am worried because our son is accustomed to having me there and we have our ways of doing things together. I want to be there to comfort him :(

And if you made it this far, I have a few real questions :) Our GI is not doing the scope herself and usually they are very tight lipped before the official release of information, so what can I have Dh reasonably ask at the end of the procedure? I was thinking of the following:
Did you see anything notable?
What was the thickening like?
Signs of actue or chronic inflammation?
Were you able to get all the biopsies? Where?

I also wonder if having the Neocate in his diet is going to somehow obscure the results or mask whatever they would have seen before. He has been using it for about 50-75% of his calories since May 2013.

If you're read this far then I would appreciate any thoughts or insights you might have. Thank you!
 
Boy can I relate on the control issues but as much as I hate to admit it (this message will self destruct) my husband can handle things on occasion and is actually quite good at entertaining my daughter for procedures and such. So maybe hubby and your son will surprise you.

As for questions to ask...gee I don't know. If they are tight lipped I would be inclined to let it be until I got to speak with the GI him/herself. Besides, if I am being honest, I wouldn't trust my husband's report on what was said and would be mad he didn't ask the right questions, right follow up questions etc. Did I mention I have control issues?

As for the EN messing with the results...maybe but our GI is pretty emphatic that it takes exclusive enteral nutrition for it to be effective at knocking out inflammation so there is probably a good chance they will still see what they need to.

Good luck with the scope. I hope the prep is relatively easy and that they are able to get a good view of what is going on and able to get some good biopsies and most of all that you get some answers and can start on the road to healing for your boy,

Keep us posted.
 
We've had 2 different GIs do scopes at 2 different hospitals. The first GI would come and get us from the waiting room and take us back to our daughter. On the way she would basically say, "things looked good" or something vague like that. We always had to wait for our follow-up appointment to get the actual results.

Our current GI finds us in the waiting room (or recovery area) and sits down to talk with us. He provides us with pictures and explains what he saw. He also provides us with a full report at our follow-up appointment.

If your GI is willing to talk after the procedure I would have your husband ask if there were any visible signs of inflammation and if he/she was able to get an adequate number of biopsies. Also be sure to ask what is normal regarding bleeding. My daughter bled A LOT after her last colonoscopy and I wished I'd asked more about that when I had the doctor in front of me.
 
Can you be on speaker phone or FaceTime or something?

It helps to get a written copy of the report for your own records. Some GI's will even take pictures.

Good luck!
 
I really hope that after all this time you get some solid answers. Sending massive hugs.

Mayo Clinic is the place to be. Wishing loads of luck :ghug::ghug::ghug:
 
Hi,

I am very sorry hear what your little one is going through. My son was diagnosed first to have UC at the age of 26 months. A year later the diagnosis was changed to Crohn's disease. Now after 3 years of agony we have found a hospital where the doctors think that often very little children falling ill with IBD like disease have in fact immune deficiency. That is why you may find the following thread interesting:

http://www.crohnsforum.com/showthread.php?t=43355

A lot of tests have been done for my son, including DNA and genetical tests. nothing special has been identified yet though. Still his foctors think that he may have some sort of immune deficiency. In October last year we started EEN (neocate) and now around 70% of his calories come from it. EEN didn't take the inflammation away but at least he is groing now!

I strongly recommend you to keep the possiblity of immune deficiency also in mind and ask for tests to exclude it.
 
Hi and welcome.
My girl is 4 1/2 but has suffered since near birth. She two went undiagnosed for long time.
Hugs to you both.
 
Thank you, everyone, for the replies and well wishes.

Farmwife-- Ds has had some issues since birth which could be Crohns related. I hadn't really connected it that far back. For awhile Drs were pushing an EE/EoE angle but scopes never found eosinophiles.

Mehita-- I could probably be on speakerphone but I don't have facetime/skype, etc.

Malgrave--I will go and read through that thread but the first few posts piqued my interest. Recurrent infections are a HUGE issue here, which is partly why the idea of suppressants are scary. I mean, they're scary all on their own but Ds does not seem to have an A+ system now. He has had immunologic and genetic testing before, although not related to IBD. CVID was on the table a few years ago but ruled out since his immunologic and metabolic workups have been "normal." Still, I will be sure to pursue that when we meet with the GI to discuss results. I am also glad to hear that Neocate is working for you. We have had at least 5 months of non-stop weight gain since starting, height has been more fits and spurts. I am thinking we may need to up his calories, possibly with overnight feeds to see more height.

DanceMom--that is great advice. I never thought to ask about bleeding. We don't get D with or w/out blood so that would be quite a shock to see here!

crohnsinct--I am glad to hear that we'd probably still see the inflammation. I am guessing that is what they saw as thickening on the CT. On the other hand, I'd love it if we could beat this into remission with just partial EN.

I will be sure to update about our appointments and the scope.
 
Did they do a lower scope? You can have EGID's in the lower GI track?
However the GI believes that Grace is in early crohns and some research shows that lower EGID's can "switch" over to IBD in some.
We just got back from Mayo. We loved it.
 
My son's GI told us immediately after the scope (in the recovery room) that they were pretty positive he had crohn's disease. They said they wanted biopsies back to confirm but it was clear he had it. He was 11 years old at the time.

I think given your son's age, my guess is his GI is hesitate to make a firm statement until the whole picture develops. It seems that younger children are still "developing" symptoms and diagnosis is usually not as clear cut in them.

I was told about 5% of celiac blood work is a false negative, so that is still a possibility.

It doesn't surprise me that they neocate worked better than the ensure. It's elemental, so much more easily digestible:)

You have great questions. I feel for you on the colonoscopy. That was probably the worst experience we had so far. Not the actual procedure, but the prep, and only because he was already so hungry and weak. The good news is once they figure out what is going on your boy can get some treatment and he will feel loads better.

((((hugs)))) and let us know how it goes.
 
We didn't find out with the colonscopy at first
All looked normal for DS just a little red
But a week later the biopsy results told a different take of crohn's

Each scope has been easier
He has had four so far.
The biopsy results also have come back quicker as well.

It takes a while finding the right med but on e you find one its like gold.

It will get better just face each day one at a time
 
I totally understand, when my daughter had her scope it was right after her 4th birthday. We didn't know anything until biopsies -- everything "looked" normal. We still went undiagnosed with "unspecific" inflammation. But she was fine and has long since forgotten all about it. Good luck!!
 
Thank you everyone! Dh called me to report that Ds did great. He was very cooperative and handled the sedation and procedure very well.

Dh spoke at length to the Dr after the procedure and the good news is that things looked pretty good inside. I think Dh said they were able to see all the way to the beginning of the small intestine. The colon looked healthy. There were some changes in the ileum, but he wouldn't go so far as to call it inflammation. Just some changes/differences. They got the biopsies they needed so now its just wait and see on those results. I would love to hear that its not IBD and I'm really looking forward to talking with the GI on Friday.

Johnnysmom--I have heard there are a lot of false negatives on the Celiac blood tests, especially at my son's age, but he is also neg. on the genetic test which is not perfect, but I guess really knocks it down the list.

mylittlepenguin--thanks for sharing your story. I am wondering if that will be our case, too. Little to see on the surface, but a different story from the biopsies.

Waiting for test results always puts me on pins and needles.
 
Welcome, Emilie; So sorry to hear all you've been going through. Some of your son's symptoms sound similar to my 8 yr old son's at dx. Once the biopsies are back, I'm sure your GI will thoroughly go through the results. Keep in mind that scopes cannot go through the small intestines, so you may not get all the answers quite yet. My son's CD is in the jejunum, although the colonoscopy showed some granulomas in his large intestine. The best test our GI did on our son to locate the disease was an indium scan, which may be what you were referring to when you mentioned the white blood cells. This scan showed my son's white blood cells accumulating in the small intestine, which showed that is where he was most inflamed. Take care!
 
Glad he did okay for procedure. What a star!

Keeping everything crossed for biopsy results xxx
 
Hi there and welcome, so sorry you're going through this and glad to hear your little one came through the scopes well. My little girl Lucy was diagnosed at two with crohns so I fully know and understand the worry and fear you are going through
Polly
 
Thank you, everyone! I met with the GI and have been digesting the news ever since. The biopsies came back clean and the blood tests (CRP, ESR, Celiac's) were all normal. So, without signs of autoimmune, we have a tentative diagnosis of food protein intolerance. Small bowel crohn's is the runner up, but at this point the GI says there isn't much evidence to support that.

I'm not sure how I feel about this. I really trust her/her opinion and I am relieved that it might not be IBD. However, the symptoms of food protein intolerance aren't as good a fit (from my lay perspective) as Crohn's.

We're going to do a 6 week trial without foods and then do an extended endoscopy to try and get a look at the jejunum and maybe even biopsies. Fingers crossed, the symptoms will clear during the trial. If not, we'll turn to steroids :( I'm still a bit confused because no foods should help clear symptoms of either Crohns or Food Protein Intolerance so I guess it would be up to the scope/biopsies to sway the diagnosis in the end.

Any ideas for where I can learn how to go no foods with my 3 year old? He does drink Neocate but we have to change types and I'm not sure how well the new flavor is going to go down. And I'm really not sure if he can/will drink enough to keep himself healthy. Sigh. Do I just stop giving him food and explain that he's not going to be eating for the next 2 months or so?:eek2: I am going to check in with our PCP and figure out who locally is going to supervise this diet (PCP, GI, allergist).
 
I would say that I'm glad your biopsies were clear, but I'm all too familiar with the frustration of not having clear answers. It does sound like your GI is trying to figure things out, but I think she needs to spell things out for you as far as the diet changes are concerned. Also, I'm curious as to what type of skin discolorations your son has. My daughter has some as well and no doctor seems to know what they are or what caused them.
 
My son did the 8 weeks with no food (Modulen). He hated the taste so had the NG tube in for the whole 8 weeks. It is something to consider. My son was just so relieved not to have to drink it and after a couple days he didn't feel the tube anymore. Good luck. Hope you get a definite diagnosis soon
 
I'm sorry/so glad her biopsies were clear. But, how do they explain such a high calprotectin number with a clear scope? Can an elevated number be due to something else? We've had a similar (but opposite) frustration. Our labs have all been normal but her scope showed non-specific inflammation. It is SO ACK! to stil be on the fence.

It is SO interesting as you said food protein intolerance. A friend of mine who has a son whose 5 also has constant tummy pain and they're suspecting FPI -- which I thought was found more in infants? So I am curious about why the suspect this? And could this be Gracie's issue, too?
 
A dear friend of ours suffered a heart attack and was in a coma for 6 weeks. Her husband is an MD and he was able to get the hospital to give his wife Liquid Hope through her feeding tube. It is a whole food based meal replacement. She started doing significantly better with the whole nutrition formula.
I would share the link to the website but I am a newbie to this forum so I can't post it yet (have to post 10 times before I can share a link). Do a Google search for Liquid Hope whole foods meal replacement.

Here are the ingredients:
(Ingredient list obtained from the Functional Formularies website) Filtered water, organic garbanzo beans, organic green peas, organic carrots, organic whole grain brown rice, organic flax oil, organic whole grain brown rice protein, organic sprouted quinoa, organic sweet potato, organic miso, organic broccoli, organic almond butter, organic kale, organic garlic, organic turmeric, organic rosemary, organic ginger, organic wakame (seaweed), vitamin blend [thiamine mononitrate(B1), riboflavin (B2), niacinamide(B3), pyridoxine hydrochloride(B6), cyanocobalamin (B12), ergocalciferol(D2)]
 
Michelley said:
Here are the ingredients:
(Ingredient list obtained from the Functional Formularies website) Filtered water, organic garbanzo beans, organic green peas, organic carrots, organic whole grain brown rice, organic flax oil, organic whole grain brown rice protein, organic sprouted quinoa, organic sweet potato, organic miso, organic broccoli, organic almond butter, organic kale, organic garlic, organic turmeric, organic rosemary, organic ginger, organic wakame (seaweed), vitamin blend [thiamine mononitrate(B1), riboflavin (B2), niacinamide(B3), pyridoxine hydrochloride(B6), cyanocobalamin (B12), ergocalciferol(D2)]
Click to expand...

I checked it out also.
Allergy warning- Almonds and Soy

Why don't they give the price on there site? Unless I've missed it?

Other then that it might check it out for Grace.
 
my little penguin said:
FW i thought grace needed to be elemental only for her EGID-

There is nothing elemental about the liquid hope formula.
not to mention cross contamination concerns

Nestle make a similar one called complete- just basically real food in a liquid ( not organic though)

http://www.nestlenutritionstore.com...la?rank=0&v1=rank&asc=1&catpath=pediatric.2.2
Click to expand...

Thanks mlp I'll look that up. EGID's might not be a big issue (I'll update her thread soon) but yes it's for her edig's but her pancreas is now having issues (long story). We might have to consider something else.
 
Maybe I'm a sucker for advertisements and marketing but I always worry about products made by companies I'm not familiar with. :( I know Nestle, I know Abbott but who is Robin Gentry McGee? Large companies like Nestle and Abbot have history and reputations to maintain and I think this provides a certain level of security.

I'm certainly not saying they can't lose their reputations with poor quality products at times but they have a lot to lose if they lose their credibility.

I realize that even the large companies started out 'small' at one time but... I'm just not as comfortable with products nor the claims when they come from unknown/new companies.

I usually buy Boost for Stephen but, as his 'motivation' is to increase his protein intake, I have compromised and sometimes (only once in a while) buy him shakes from a company called Premier Nutrition (high protein). But, even these, I don't 'love'... it's simply a compromise to keep him drinking shakes.

But it's a tough call... it's often newer companies that offer the organic, cleaner products. :ywow:
 
Okay, I'm going to try and answer everyone's questions. The path to a diagnosis really is twisted for so many of us/our kids.

DanceMom said:
Also, I'm curious as to what type of skin discolorations your son has. My daughter has some as well and no doctor seems to know what they are or what caused them.
Click to expand...

My son has patches of hyperpigmentation that look like the picture in the link, also usually on face and neck, although his are less pronounced. My Mom is always licking her finger and trying to "rub off the dirt."
 
Momto2girls said:
I'm sorry/so glad her biopsies were clear. But, how do they explain such a high calprotectin number with a clear scope? Can an elevated number be due to something else? We've had a similar (but opposite) frustration. Our labs have all been normal but her scope showed non-specific inflammation. It is SO ACK! to stil be on the fence.

It is SO interesting as you said food protein intolerance. A friend of mine who has a son whose 5 also has constant tummy pain and they're suspecting FPI -- which I thought was found more in infants? So I am curious about why the suspect this? And could this be Gracie's issue, too?
Click to expand...

There is definite inflammation, technically they're calling it thickening of the jejunum visible from the CT scan. We just haven't been able to see it any better with a scope or biopsy yet. This would be the cause of the high Fecal Cal.

Yeah, the food protein intolerance really threw me for a loop, since a) FPIES does not match his symptoms and b) everything I read talks about it being diagnosed in infants/young toddlers and growing out of it (usually) in the preschool years. Then again, his symptoms ARE a good match for EoE/EE, we've just never found eosinophilles in his biopsies.

Thanks for the formula ideas. We do need elemental for sure, so we wouldn't be able to use the one suggested (or boost, ensure, etc). In fact, we have to change our flavor of Neocate because the new ones with prebiotics contain fructose and Ds has severe fructose malabsorption. This may be why he ends up needing the tube because he drinks his old flavor really well but doesn't like the new choices.
 

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