Child going through testing for diagnosis

Hi everyone,
My 9 yo daughter has been sick for about 5 weeks with bad abdominal pain, weight loss, intermittent nausea, loss of appetite, extreme fatigue, body aches and facial rash (just started). All of her bloodwork and stool samples came back normal with the exception of a positive ANA (rheumatology panel that doc said was a false positive). Initially the GI doc suspected abdominal migraines but her symptoms aren't episodic as they were when this started and she has lost a significant amount of weight, which isn't a hallmark of AM. The GI doc now suspects Crohn's and wants to do a scope to see if there's evidence. We are waiting to be scheduled.

She went from a happy, healthy, smart kid to a sick, exhausted, depressed child who can't go to school anymore. Does this sound like Crohn's to you? Is that how it can happen? I have so many questions and I don't know where to start. Thanks for your help.

The symptoms definitely sound like they could be Crohn's. Hopefully they can get you scheduled quickly for the scope and get some answers.

kandjmom said:

She went from a happy, healthy, smart kid to a sick, exhausted, depressed child who can't go to school anymore.

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That is what happened to my son 3 years ago when he was 11 ... from straight A, class clown, sports and music to being too tired to do much of anything (plus a lot of other symptoms too)

The weight loss is scarey ... my son (undiagnosed still) did not have that. I hope you get answers and treatment soon.

kandjmom,
That is exactly how it went with my daughter. She got sick over a 6 week period of time from severe illness to diagnosis. That is why we were so convinced she had some kind of bg like salmonella originally because it happened so fast. She ended up getting so sick that we took her to the ER at our local children's hospital. They did a colonoscopy the next day and diagnosed her with crohns. we were shocked.

Thank you for your responses. I had no idea about this illness until recently and I feel like I have so much more to learn. This forum has been really helpful though. I didn't know that symptoms could start at this age but it sounds like its a more common time from what I'm reading here. Are there any theories about the onset of puberty causing the first flare?

I have another question for those more experienced with this illness: we are scheduled to go to Disney in 2 weeks for both of my kids' bdays and I don't know what to do. Honestly, this trip has been the only thing getting her through these days and I would hate to postpone/cancel it due to her illness. But I don't want her to be miserable the whole time either. Do you think we should go?

I would suggest keeping a diary of what she is eating and drinking and see if you can see any correlation. Eliminate ALL sugars (that can further exacerbate the condition) and focus on ONLY nutritional items. This may help as you go through the process.

As far as Disney, since this has been a goal for her, why not go? Worst case she is in her hotel taking a rest period, but still enjoying the adventure. Helpful for her to feel as normal as posible. Since she is so young, make sure she is not overhearing anything negative; where perhaps she thinks she is more ill than may be. Perhaps smiley stickers on the calendar for good days and then she can see more smiley faces as she gets involved in helping herself feel better? Important for her to learn what she puts in her body may adversely affect her health. Hope she feels better soon and something mentioned may be of use. Good luck!

Hi kandjmom and :welcome:

I'm so sorry to her about your daughter.

So many of her symptoms, intestinal and extra intestinal, could well fit with a diagnosis of IBD. My children's symptoms although severe did not hit has quickly as your daughters but as you can see from the other posters this disease can present in many different ways. One thing though is my children were very different when it came to test results, excluding scopes. My daughter consistently returned normal blood, x-ray and scan results right up until just prior to emergency surgery, so I could never depend on them to tell me anything with her. My son's bloods on the other hand show every abnormality even before symptoms become obvious, his x-rays and scans always revealed problems too.

Good luck with the scope and I hope it gives you solid answers whatever the result may be.

Any questions you think of just keep asking away and we will do our best to answer!

Dusty. xxx

kandjmom said:

She went from a happy, healthy, smart kid to a sick, exhausted, depressed child who can't go to school anymore. Does this sound like Crohn's to you? Is that how it can happen? I have so many questions and I don't know where to start. Thanks for your help.

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That's much the way it was with my son. Except, looking back on it, he had what we thought was sensitive stomach issues that would cause random nausea for a couple years prior to diagnosis. It didn't set off alarms at the time but if I'd known then what I know now...

Good luck mom! Keep pushing, you're doing the right thing by her

kandjmom said:

Thank you for your responses. I had no idea about this illness until recently and I feel like I have so much more to learn. This forum has been really helpful though. I didn't know that symptoms could start at this age but it sounds like its a more common time from what I'm reading here. Are there any theories about the onset of puberty causing the first flare?

I have another question for those more experienced with this illness: we are scheduled to go to Disney in 2 weeks for both of my kids' bdays and I don't know what to do. Honestly, this trip has been the only thing getting her through these days and I would hate to postpone/cancel it due to her illness. But I don't want her to be miserable the whole time either. Do you think we should go?

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I have not read any theories about puberty ... but we thought the same thing since Danny's illness cooincided w/ his puberty.

I say go to Disney if SHE wants to go! Disney has lots of accomodations if you need them. If she is too tired to walk (which sounds like maybe) - you can get a wheelchair there and a note from your doctor so you can use the disablity accomodations. We did that with my older son who had a severe spine disablity and it worked wonderfully. At first I was not sure he would use the wheelchair (he was 14 at the time) but he had no issues with it as he could not walk more than 5 minutes.

kandjmom,
I agree go to disney. Let her enjoy as much as she can. Disney is very accommodating as Danny's Mom said.

Thank you for making me feel better about going to Disney! I think it would be good for her to go and have some distraction from her symptoms. Her fatigue level is very high right now so we will definitely need accommodations to make her more comfortable.

My next questions: how long was it from the time your child was scoped until diagnosis? Can they tell right away or do they need to wait for biopsy results to come back? I'm also wondering if they start her on meds, will she feel any relief soon after? I hate to watch her in so much pain for so long.

They can tell right away. They should be able to show you pics taken during the colonoscopy. While she is in recovery the doc will probably talk to you about the results.

Ginger tea (put small piece of ginger in hot water and either serve warm or let it cool down to room temp and have her drink like regular water) helps reduce inflammation and helps with nausea.

Belly rubs will help eliminate her pain. At first you may feel her belly quite hard and she may have a hard time (initially) tolerating it, but she will soon end up being able to fall asleep when you do it. Use her navel as the center and with a flat palm, begin on the right side (ascending colon) and go up and around to left side (descending colon) and back around. You may feel a hard belly when you begin and within a few minutes it will be soft as jelly. You are increasing the blood circulation to the area, which will help heal the belly and digestive system. It also helps remove any air trapped inside. You should hear some good belly gurgles in a short time. I was told to do it each morning and before bed and whenever I could throughout the day. I would find myself doing it in the car (unconsciously), as I learned how it made my belly feel so much better.

If I hate trouble with meat at dinner, my husband learned to take his fist to my belly and do the rubs. It seemed that meat would literally stop in my belly and I would turn white and almost pass out from the pain. After a few minutes of rubs, I would be fine.

Hope this helps!

Kandjmom,
If they put her on prednisone after the scope she should improve pretty quickly. Prednisone is usually given initially until the other medications prescribed kick in which could take a few weeks.
I also suggest buying her a hot water bottle or something similar. We bought my daughter something called a bean from The Sharper Image. If you have a store near you or you can order it online. It is filled with a liquid and wrapped in a soft cloth and you plug it in for 15 minutes (the cord come off it) then it stays hot about 3hours. She sleeps with it every night.

kimmidwife said:

Kandjmom,
If they put her on prednisone after the scope she should improve pretty quickly. Prednisone is usually given initially until the other medications prescribed kick in which could take a few weeks.
I also suggest buying her a hot water bottle or something similar. We bought my daughter something called a bean from The Sharper Image. If you have a store near you or you can order it online. It is filled with a liquid and wrapped in a soft cloth and you plug it in for 15 minutes (the cord come off it) then it stays hot about 3hours. She sleeps with it every night.

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That's so funny you would suggest that because I just started heating up this stuffed animal filled with beany herbs that you can microwave and she loves it. I guess that makes sense, huh? Thank you.

kandjmom said:

Thank you for your responses. I had no idea about this illness until recently and I feel like I have so much more to learn. This forum has been really helpful though. I didn't know that symptoms could start at this age but it sounds like its a more common time from what I'm reading here. Are there any theories about the onset of puberty causing the first flare?

I have another question for those more experienced with this illness: we are scheduled to go to Disney in 2 weeks for both of my kids' bdays and I don't know what to do. Honestly, this trip has been the only thing getting her through these days and I would hate to postpone/cancel it due to her illness. But I don't want her to be miserable the whole time either. Do you think we should go?

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I am by no means experienced. Super newbie. But I think I can answer your disney question. Go. The kids will have fun even if you do have to deal with a lot of bathroom breaks. Unless she is to miserable to even travel. My son just got diagnosed. My family and I took him to disneyland for his birthday. It was an hour on the plane each way and he did fine. He was fine for the most part but did not have much energy. He is also anemic. My thought was that if I had postponed our trip then when are we going to get another chance? I knew at the time that this was going to be a chronic thing for my son.

kandjmom said:

My next questions: how long was it from the time your child was scoped until diagnosis? Can they tell right away or do they need to wait for biopsy results

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While they can see any problems right away with the scopes, they may mistake crohns for uc until biopsies reveal otherwise. That's what happened in our case. This shouldn't affect the initial treatment. Generally, they start with mesalamine that will target the area of inflammation(assuming there is any) and prednisone. For my son, the relief was almost immediate. Good luck!

Hi Judahsmom and :welcome:!

@kandjmom, as the others said, if there is damage visible to the eye then they will be able to tell what they think there and then. Matt only had inflammation and ulcers in the terminal ileum so the GI was able to diagnose CD on the spot. Treatment should be able to commence immediately, most people respond and find relief quite quickly.

All the best!

Dusty. xxx

Our daughter was also immediately diagnosed with crohns after the colonoscopy. We knew that same day. The biopsies only confirmed the diagnosis.

KandJmom, the scope will be a better indicator than any of the bloodwork. You should also discuss an upper scope, or barium xray/ct scan to examine the upper GI as well. IDK about children, however in my own experience; I had a colonoscopy in '04 and my CD was missed because the scope, biopsies, as well as the bloodwork all appeared normal. It was another 2 years before I had a CT scan to look for a hernia, which exposed the inflammation in all three parts of my small bowel. That was when I was given the IBD diagnosis. Your child has many of the indicators of IBD.

I also agree that you should do what you can to keep things as normal as possible, so by all means go on your vacation! Just be sensitive to the munchkins needs. (Something I am certain you will do anyhow...)

One more thing, if your daughter ends up on prednisone, it may have an effect on her mood, making her more easily agitated, restless, moody etc. Just remember it's the medication. Prednisone is a great medication for treating inflammation, however it has some terrible side effects, and should only be used for as short a time as possible IMO. I have developed osteopenia/osteoporosis from both the CD and the use of prednisone.

My heart goes out to you and your family. Keep your chin up! Best of luck!

I'll just keep asking questions until you get sick of me So we can't get in for the scope until next Monday, which is frustrating to be because she's in so much pain and losing weight rapidly. Does it make more sense to get her inpatient to expedite the process or is it not worth it? Also, if she have to wait until Monday and we leave for Disney that Friday, will she feel okay and recovered enough to go?

Hi kandj,
I am also extremely super-new, but I'll add my experience. The scope can be so helpful, because biopsies can show changes on a microscopic level even if things appear fine to the naked eye. In my daughter's case, she's got many of the symptoms of your daughter minus the facial rash (she gets sores inside her mouth instead) and all tests - barium swallow, ultrasound, CT scan, xrays, initial bloodwork all came back normal. The only thing that shows is elevated WBC when she has diarrhea.
When her scope was done, things "looked" good too. However, the biopsies showed cellular changes that indicate all is not well at all. Combined with the weight loss, repeated episodes of awful abdominal pain, diarrhea & vomiting (we too were told it was cyclic vomiting and/or abdominal migraines at first) and a few years of joint pain, the biopsies were the nail in the coffin. The scope is incredibly helpful because it gives a boots-on-the-ground view - including microscopically - that no other test can offer.

After the scope, your child may have passing pain for two or three days. This will be from both gas (they blow air in to inflate areas & give a very good view) and possibly from the biopsy sites as well. No one told us this, but in addition to no fatty, acidic, or very "prickly" foods avoid any juices at all for about two days afterwards. They told my D10 she could eat whatever she wanted after she woke up in the hospital, and she had two apple juices right away, followed by excruciating pain about six hours later. Of course they use citric acid and such as a preservative in juices, and when those acids made their way through her intestines & came in contact with the open biopsy sites (about 8 total) she was in so much pain. Then the GI came in & looked at me like the dumb one for giving her juice. She hadn't eaten in 4 days. ((grr, I had many problems with that GI...))

The sites heal quickly, they're just little "bites" here & there. If you have it on Monday, the child should be ready for Disney on Friday.

I'm not sure about going as an inpatient as I don't know your system there.

As to post scope, as imwood has said, there will be abdo pain particularly in the first 24 hours. I know Matt experienced most of his the day of the scope and next to nothing after that. Matt drank only water and ate only small bland meals for 48 hours following the scope, this was the recommendation on the literature given to us.

All going well there should no issue with her going to Disney on the following Friday.

Dusty. xxx

Everyone is different after a scope. She may feel a little beat from the anesthesia and then fine, or belly aches, but slowly begin back on liquids/foods and you have an opportunity to start anew and make sure she is only eating healthy foods. You should begin to see when something bothers her. One thing is to get that inflammation down. A scope may irritate her. Hope she feels better soon!

kandjmom,
With my daughter we ended up having her admitted so she could be taken care of sooner but her appointment was several weeks a way. If your daughter is really sick it couldn't hurt to get her admitted and get the scope done asap instead of waiting a week.

Hello Kandjmom,

I just wanted to wish you the best. I know how worrying this all will be.

I have a little boy (6 years old) with crohns and I know I have found it hard to accept that my child who was always healthy now has something that is chronic.

I think it is very hard for any parent to see their precious child suffering. I hope the scope comes round quickly and gets you some solid results, so you can go from there and get on the right treatment. And it may not be crohn's. But if it is then I am sure you will have a great medical team to care for your daughter, and it would definitely be the time to call in the support from your family and friends plus this forum is a great place. I was so relieved to find this forum.

Keep in touch with us, and let us know how your scope goes.

Thinking of you,
LilyRose

A week could seem a lifetime if she's in serious pain. Only you know your daughter well enough to make the call mom. Do her pediatrician and GI seem content to wait another week? Also, if they do admit her, is there a likelihood they will scope her earlier or just try to manage the pain?

Update

Thank you for all of your responses. It is so helpful to have a group that understands what this is like. Most of the people I know who don't understand Crohn's tell us to postpone our Disney trip. But if it turns out to be Crohn's, we don't know when she will be "well enough" to go anyway. I want her to have a trip to distract herself from her pain and have fun any way she can, even if it's an adjustment from our expectations before this illness.

Update on testing: we could not move the scope date up so we kept it for Monday. A ped friend of ours got us in for a second opinion with a CHOP doctor on Friday just to see if he has any other opinions/ideas. It wouldn't hurt at this point. She is still in a lot of pain, not eating much and losing weight.

Now on to the colon prep...any advice for a newbie? She was told to start on Sat night for a Mon afternoon scope. Doesn't that seem like a long time? I don't know how these things work.

Make sure you read the instructions carefully. It is very key to make sure she is drinking plenty of water! The first time I did it wrong and did not drink much water and I was stumbling around like a drunk that morning...couldn't get my head straight...dehydrated...

Most preps start two days out so the bowel is well prepared, as in cleansed. A combination of both prep and diet. What one is she prescribed?

My son was prescribed pico prep. He had three sachets that each had to be dissolved in a glass of warm water. I made them up in advance and refrigerated them. None too pleasant to drink but chilling them certainly made it easier.

As mickey has said, watch for dehydration.

Dusty. xxx

We are doing a combo of Ducolax and Miralax starting 2 nights before. Luckily, nothing yucky to swallow because with her nausea I don't think she could get it down. I just have to figure out a good liquid to mix the Miralax with...probably Gatorade.

Well, we've made it through the prep :yrolleyes: and tomorrow is scope day! I felt so bad putting this poor kid through that regimen when she's already in so much pain, so it will be worth it if we can get an answer. Please keep us in your thoughts.

Thank you for everything!

Good luck with everything - hope you get those answers you are looking for!

I hope tomorrow puts an end to the uncertainty for you. J.

You've done well - getting through the bowel prep is not easy - best wishes for the scope tomorrow. I know you will be feeling worried. I am sure the medical team will look after her well and then hopefully you will know what/if anything you are dealing with.

Take care,
LilyRose

Well done! Sending you loads of luck and well wishes that all goes well and you get solid answers!...:goodluck:

Thinking of you, :heart:
Dusty. xxxxxxxx

Good luck today Mom! Let us know.

Well, I don't know what to think. There were no obvious signs of inflammation o we have to wait for the biopsy and enzyme test results to come back, which will take 7-10 days. Has anyone else encountered this?

She did well and the hospital was great. Her belly and throat hurt tonight but she's eating.

I haven't had that at this end but I there are others on the forum that haven't had obvious inflammation but biopsies have picked up issues.

It's so good to hear that all went! Matt had abdo pain the day of the scope a bit of a sore throat from the endoscope too but it seemed to pass by the next day.

Everything crossed for solid answers!

Dusty. xxx

That's the results we all would want but I'm sure it's frustrating not getting the answers you need. If you browse the Undiagnosed club, you can find several adults on here who have normal test after normal test only to continue suffering. I hope that isn't the case with your girl!

kandjmom said:

Well, I don't know what to think. There were no obvious signs of inflammation o we have to wait for the biopsy and enzyme test results to come back, which will take 7-10 days. Has anyone else encountered this?

She did well and the hospital was great. Her belly and throat hurt tonight but she's eating.

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Danny's scopes looked good (only some redness in areas) but his biopsies did come back positive for non-specific mild, patchy, mostly-eosinophilic inflammation in several parts. (active, neutrophil inflammation in cecum) Dr. could not access his terminal ileum for biopsy. Pathology report said it could be 'IBD, allergy, or infectious etiology'. We did start some Crohn's meds after that - Pentasa first, then prednisone which made things 10x worse. Danny is still undiagnosed and symptomatic. They did not do any enzyme test on Danny's biopsies, so glad you are having that done. There are other imaging that could be done too - ie. MRE and pillcam. For several people I read about, the pillcam found their obvious Crohn's.
Good luck. Please keep us posted.

Thank you. The one thing they did find is Lymphoid Nodular Hyperplasty (very bumpy part of the colon), which the doc said was common in children and wouldn't cause the pain. But when I researched it, some studies show a strong correlation between this condition and different allergies, infections, etc. Did any of your children have this?

Bottom line is that something is causing pain/inflammation. Eliminate that (i.e., drinks, food) and you can stop the pain/inflammation. The inflammation will cause disease, so stop it while you can. I found SOOO many drinks have glucose, unpure sweeteners, etc...and so unnecessary to be put in your body. Same with foods. Gargage in, garbage out. Good luck! skip the sugars, your health is too important.

kandjmom said:

Thank you. The one thing they did find is Lymphoid Nodular Hyperplasty (very bumpy part of the colon), which the doc said was common in children and wouldn't cause the pain. But when I researched it, some studies show a strong correlation between this condition and different allergies, infections, etc. Did any of your children have this?

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Neither of my children had this.

If the biopsies return as negative is there further testing on the cards?

I know through past reading that I have read that LNH is present in ??25% of those with Crohn's but don't quote me on that figure! :eek2:

Dusty. xxx

LNH was not noted on Danny's ... at least by those terms. I see "lymphoid" and "hyperplasia" in parts and will read/research more.