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Crohn's Disease Forum » Parents of Kids with IBD » What now? If anything...


07-24-2016, 03:37 PM   #1
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What now? If anything...

Hi all,

I'm not quite sure what to do next, if anything. I posted a few months back and received some very helpful suggestions. My daughter is almost 12 and undiagnosed. Her growth curve has declined over the past 3 years (60% height to the 23% and 29% weight to 3%.) The rest of her family is pretty tall. Her younger sister has passed her in height and weighs at last 25 pounds more. She has also had 4 rounds of kidney stones since the first grade (with no renal disease) and has occasional canker sores. Her father has primary sclerosing cholangitis and we all seem to struggle with GI issues.

All that said she feels fine. Better than fine with no GI symptoms. But I feel like I've been watching her not grow for years now. And I'm starting to feel crazy. All of the labs have come back negative for celiac and other things. Fecal calprotectin, normal. SED rate, normal. I held my breath hoping that the colonoscopy/endoscopy would provide some answers. Nothing.

We saw endocrine and they said that while they didn't see anything obvious they were glad we were seeing GI because the growth curve looked suspicious. They said that with her family profile she should be up in the 90% height like her sister. And even if she was just the outlier in our family and she stayed in the 50-60% height that would be fine. But dropping to 23% doesn't seem right. Her bone age is 10.1

Her GI wants to do an MRE to check the small bowel, maybe a pill cam. But otherwise I'm not sure what to do, if anything. Maybe it is nothing? How much to I push with a child who looks so healthy. It is just that for so long I've been feeling like something is just not right. My mother has said so for quite a while as well. And lately it seems like other friends are saying "I see what you are saying, she isn't growing much." In the spring her teacher was saying that she was tired and seemed "spacey" at times. She was just diagnosed with ADHD but I can't do any meds because they are appetite suppressants. But it is summer now and so she seems quite healthy. If the MRE is unremarkable I guess we just monitor?

Obviously I'm grateful that she looks well and feels fine. But I can't shake the nagging feeling that we're missing something.

Frustrated.
Thanks for reading.
T
07-24-2016, 04:51 PM   #2
my little penguin
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Big hugs
We spent two years in the kid isn't gaining category but he felt fine mostly
Have you tracked calories on my fitness pal daily
What happens when you increase calories ?
We moved Ds to 2600 calories of food at age 7 a day
No weight gain
Added kids boost and for three months he would gain weight
The minute we lowered the shakes he would lose
This was very important for the Gi to know

Mre/pill cam might give you answers
Ds has something else on top of crohns but we ran out of tests so now we wait or get a second opinion
Good luck
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07-24-2016, 05:46 PM   #3
CarolinAlaska
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Is you daughter having any signs of puberty? Sounds a lot like my daughter, but she didn't have a lick of puberty at that age either. Pill cam gave us answers, but fecal calprotectin was also up. I know how frustrating it is.
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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
07-24-2016, 05:46 PM   #4
Maya142
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An MRE or a pillcam might be a good idea and might give you some answers. They're not too hard - an MRE involves drinking some contrast and an IV and a pillcam is just swallowing a big pill and wearing a monitor (she may or may not have to do prep, depending on the hospital -- my daughter did not).

There are certainly parents with kids on here who were diagnosed with a pillcam or MRE so it's worth looking into. Crohn's can be pretty sneaky and difficult to diagnose.

My daughter also needed shakes and extra calories to even maintain her weight. We tried Ensure and Boost, which she could not tolerate and finally moved on to Peptamen Jr and then Neocate. If you do want to supplement, then I'd start with Ensure/Boost/Pediasure because they taste better than the semi-elemental or elemental formulas.

You say she looks healthy, but how is her appetite? How many calories is she getting? We needed 2400 calories for my daughter to gain (at age 18). Your daughter might need even more. Is she seeing a nutritionist?
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Mom of S (23)
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07-24-2016, 08:36 PM   #5
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First, thank you again. This is such a wonderful resource and I appreciate your willingness to share your experiences. I'm really glad that you all mentioned the appetite issue. First, no sign of puberty yet, unlike her younger sister. She's still wearing the same sneakers I bought 2 years ago.

She has had a lousy appetite since birth, with reflux and regular vomiting in her early years. I was really hoping that it would turn out to be celiac as it would explain so much. The endoscopy did show some "minor redness" and the GI thought that she probably had some chronic reflux. We're starting some zantac to see if it helps.

We tracked all of her eating for a few months and found that she eats an average of about 1850 calories a day (occasionally as much at 2200). This was more than I expected and the nutritionist and GI thought that wasn't a shockingly low number. But maybe it should be a lot more? Maybe it's a dumb question but how do you determine what they actually need? I feel like trying to increase her intake has always been on my mind.

She eats a good variety of fruits, vegetables, proteins, eggs, breakfast foods, snacks, desserts etc, just pretty plain, she's not into sauces. We've tried all of the drinks but she doesn't really like them. I've tried hiding calories in everything. Occasionally I can hide the benecalorie supplements in pancakes or other foods but if she can taste it I get resistance. I feel like I'm force feeding her when I try to get her to eat more. The GI suggested that if we get through all of the testing and there aren't obvious reasons for malabsorption maybe we could try appetite stimulants. Has that helped anyone? Any reason not to try them? Again, she feels fine and is not especially worried about her growth. And since it has been a lifelong thing I don't feel like her resistance is deliberate or a power thing and I believe her when she says she's not hungry.

Thanks for all of the advice.
T
07-24-2016, 09:42 PM   #6
my little penguin
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1850 to 2000 calories is about right
Ds is 12 and was placed on 2000 calories of neocate Jr a day when he was no foods
But once he added food he was up to 2100 a day
Boys need more than girls at that age btw
07-24-2016, 11:12 PM   #7
Maya142
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Periactin is an appetite stimulant that is commonly used. We haven't tried it but I'm sure others will chime in.

1850 sounds pretty good, but I'd try and up it and see what happens. I'd check with her GI or a nutritionist if she sees one about calories. Here is a guide that I found: https://www.nhlbi.nih.gov/health/edu...calreqtips.pdf

It does depend on her activity level. And if there is malabsorption (for example, if she does have Crohn's) then she will need more than the recommended amount.

My daughter was 18 but tiny when she had to gain weight and her nutritionist was shocked that she needed about 2400 - 2600 calories before she gained!

Have you tried Duocal? It's a powder that can be put in food or smoothies or anything really. It's tasteless.

My very VERY picky daughter could not taste it. It's worth a shot.

Some kids prefer Carnation Instant Breakfast to Boost/Ensure. That's a good option too. Most kids prefer shakes cold. Using a straw can help with the taste. It's hard when she is feeling well and not bothered by her lack of growth, but perhaps you can convince her to drink one a day.

MANY of us have resorted to bribing our kiddos to drink, at least in the beginning !
07-25-2016, 10:52 AM   #8
CarolinAlaska
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Some have used periactin successfully, but my daughter couldn't because it triggered her seizures even after the first dose.
07-25-2016, 11:08 AM   #9
my little penguin
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Ds was placed on periactin to help with abdominal pain and stimulate his appetite
It did nothing for either of those issues

My other child tried it to stimulate appetite ( non Ibd )
And it worked like a charm
07-28-2016, 02:08 PM   #10
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Did your endo run all the tests to make sure she produces enough growth hormone? It's a pretty awful test but it's the only way to know if she's making enough. How old is she? What's her weight? My son had trouble gaining as well and he's super small. In March we introduced an overnight feeding tube, he gets 750 calories plus whatever he eats during day...which is not all that much for a 14yp boy (I've seen his friends eat and he does not compare). It's helped him gain about 12 pounds since March tho! And the tube is not nearly as bad as I thought it would be...would have done it sooner if I knew I'd be so easy. He also drinks one boost a day with all his pills. I add butter, evoo whenever I can, whole milk and cheeses, avocado, whatever works!
08-19-2016, 04:46 PM   #11
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Me again. Not much more news except that the endocrinologist called me to discuss. To update, daughter is 12yo next month. Decline in growth curve, height and weight over past 3 years. However, I'd say there's been something all along. It is only now that whatever this is is amounting to the failure to thrive. We've been seeing GI and Endocrine. Both feel that the likely culprit is GI because she's had a very poor appetite since birth, canker sores, and kidney stones. She had a colonoscopy/endo last month. Nothing seen but mild reflux. Labs are all fine. We're doing an MRE next week and if suspicious he will want to do the pill cam. She feels totally fine. I feel like I'm watching a pot not boil.

So the endocrinologist called me to say that 1) she wants me to test for Addison's. Unlikely but my dad has it so no harm in checking. 2) she thinks that we should start on the periactin. I told her that I'd talk to the GI about that after the MRE. Lastly she told me that the bone age was 8.10. The GI had told me that he thought that it was 10.1 but she corrected me that it was 8.10. So that is actually 3 full years off. And >2SD (or roughly 22 months) is supposed to be noteworthy.

What I heard from the endocrinologist's tone was that while we can't find anything clinically wrong with her at the moment her numbers are just far enough from normal that we shouldn't dismiss it. She described it as "an interesting case."

We were at the beach last week and saw several of my cousins who all have kids about a year younger than my daughter. Two cousins approached me separately to ask "Is everything ok with M?" "She doesn't look right." They were startled by how much smaller M is compared to her younger cousins. I shared our journey and what the doctors are saying. My cousin remarked..."This isn't just about what is happening now. This is an effect of what has been going on all along. I was there. That baby did not eat. She threw up all the time. As a toddler she ate like a bird. She's never had an appetite."

So. My problem is that the doctors are looking at her now, in isolation, saying "yeah the numbers seem off but she doesn't look like she is struggling." So there isn't any urgency. For me it feels like something has been going on for a LONG time and now we're actually seeing the results. She wasn't cruising along until 2 years ago and it just started slowing. And her body has adjusted to whatever has been going on for so long that it isn't in distress (other than the not growing, which to me feels like a big deal.)

I'm not sure what I'm asking. It just helps me to write it out. What could have been going on since birth to leave her with such a persistent poor appetite, chronic reflux, with effects of developmental delays, kidney stones, occasional anemia, canker sores, slowed growth, ADHD..? I say malnutrition but honestly the answer can't be simply "more calories." I've WISHED for celiac because it would answer all of my questions but she has repeatedly tested negative via labs and biopsy. I've tried to increase her intake for 12 years now and it feels like child abuse to harass a kid who is not hungry to eat more.

I'm truly grateful that she isn't in distress. But in my gut I believe there is more going on here. When I see her next to her peers she doesn't just look thin, she looks frail.
Thanks.
08-19-2016, 05:57 PM   #12
DustyKat
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Wow, I am so very sorry to hear of all you guys going through. It is such an awful thing to watch your child decline and have no answers as to why, it just breaks your heart.

The MRE is a good idea but even if normal I would push for a pill cam, imaging is fab in that it can reach where the scope canít but they arenít infallible and there is more than person on these boards that was diagnosed via pill cam alone when all other tests proved normal.

I think it is certainly time to try and rule IBD in or out as a cause and the imaging will help with that. SoÖ

Have they done an ASCA blood test? Whilst only having about 70% accuracy it is at least another starting point to look at. Have a look at the article we in the wiki about it: http://www.crohnsforum.com/wiki/ASCA...ntibodies-Test

Have bloods been done for vitamin and mineral deficiencies, particularly Vit D, Magnesium and Zinc? Common to have deficiency in these when there is small bowel disease.

Do you know what caused the kidney stones? Not uncommon for those with small bowel Crohnís disease to have issues with kidney stones, particularly calcium oxalate and uric acid due to malabsorption issues.

There are a significant number of EMIís (Extra Intestinal Manifestations) of Crohnís disease. Including Canker sores, kidney stones, delayed puberty, slowed growth. Have a look at this thread and see if there may be other things that your daughter is experiencing but you might not have linked to other symptoms - http://www.crohnsforum.com/showthread.php?t=22407

Also something to remember regarding EIMís, they can and often do present many months to many years before the intestinal symptoms and evidence do.

Just hoping that these suggestions may help lead you onto a clearer path, either way, as to what is ailing your lass, bless her.
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08-19-2016, 06:14 PM   #13
Maya142
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This won't solve your puzzle (and I do think you should keep looking for the cause) but have you considered an NG tube? I know it sounds REALLY awful but they are used routinely in kids with IBD or failure to thrive and are really not so bad.

My daughter started overnight feeds using an NG tube a couple years ago. She was admitted to the hospital to learn how to insert it by herself (but she was really malnourished and they were worried about Refeeding syndrome -- typically it can be done in an outpatient appt). We were both very intimidated by it but it turned out to be much easier than we thought.

The first night was rough and she was uncomfortable. We used a tiny, infant tube which is flexible and thin like spaghetti (she was able to use it at 17 years old). By the second day, she was more comfortable and inserted it by herself. After that it was easy. She inserted it at night and pulled it in the morning. No one at school had to know. She FINALLY started gaining weight and felt SO much better.

Obviously, this won't work if she has something like Addison's. But if it is too few calories, than it can help. Drinking supplemental formula is a better option for some kids, but my daughter had no appetite so it was too hard for her. She also hated the shakes (we used Peptamen Jr) and could only manage 2 a day which was not enough to gain weight or even maintain.

I would also get a pillcam or MRE to rule out IBD in the small bowel. Incidentally, if it is IBD, exclusive enteral nutrition (only formula -- often through an NG tube for kids who cannot drink it) is used as a treatment to induce remission.

Good luck!
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